Well, we didn't go for the meal in the end. I hadn't been so organised as to book a table and so we decided to stay in on Friday and have a nice meal and bottle of wine at home. Tried to book into our favourite place for steak but I couldn't get a table for Saturday night and Roy didn't want to go there tonight. So we ended up going for a curry with my BIL and SIL2B last night. It was nice... and we'll do the "special" meal some other time. Maybe over Easter weekend...
So this morning we walked up to a local garden centre to look at Sheds (how glamourous!). Roy bought me a beautiful orchid. And now I'm going to sort out my paperwork and re-organise my desk (I threw all the work related stuff out yesterday - which felt good!).
Saturday 31 March 2007
Friday 30 March 2007
Signing on.
I'm going home at lunchtime. I have an appointment at the Job Centre at 2.15 to process my paperwork for Jobseeker's Benefit (that's like unemployment benefit but we're not called "unemployed", we're called "job seekers" ) and have a work focused interview with some guy.
He's probably about 12 years old. I can't say I'm looking forward to this.
Then I think I will take Roy out for dinner to:
- thank him for being so brilliant while I'm away from home so much
- celebrate me leaving my job on Monday and
- spend some of my redundancy pay.
All being well (and Dad seems pretty stable at the moment) I'll be home until Monday morning. We've organised for carers to pop in at night to do the couple of things that my sis and I do for dad - move him to a comfy position in the bed and some other things which aren't for mentioning whilst people are having breakfast!. Dad says he is happy with that but I will check that it goes ok tonight and if not, see what else we could organise.
Comment added in May:
Oh I wanted to comment on the signing on process! I had got myself so worked up about this. The whole idea of it (having worked since I was 16 and never claimed a penny's benefit) was making me quite anxious.
So I got home to find a letter from the Department of Work and Pensions asking me to bring along about 433 separate items to my interview! What? Most of it seemed to be about Roy - his accounts, etc. etc. In a mad rush I just threw whatever I could find into my folder and ran out. Somebody was digging up our road, and blocking the way - more stress... they were dillying around saying they'd only be 5 minutes - and I was flapping that I'd be denied dole if I was late for the appointment!
Finally arrived at the Jobcentre, to find 2 big burly bouncers at the door.... they had a list of names and checked me off on the way in. I was sent into one side of the office for "processing". I sat in the waiting area (surprisingly pleasant with sofas!) and eyed up the assistants sitting there... all of whom looked to me like complete jobsworths. The one who I was called to reminded me of "Computer Says No..." from Little Britain. I had a really bad attitude as I sat there, sulking because I didn't want to do it. Just pay me the money, will you! Anyway, I was totally wrong. The lady who I saw was very nice indeed. She dismissed the pile of papers I'd brought with me - apparently the people who fill the forms in don't understand the benefits and ask for everything - and just wanted my last payslip. Which of course I'd lost (turned out I'd dropped it in Lorraine's car) so she took details of Pru and said she'd call them. Once she'd finished I was taken in to my appointment (Job Focused Interview!) with Mark Somebody. He wasn't 12 (as I'd predicted). He was late 40's I'd say... and looked like the type who still lives at home with his mum. I don't know if the staff had been to the pub at lunch, but the whole office smelled of stale booze. Maybe that's the smell of jobseekers, LOL. I was frightened half to death by one of the jobseekers being yelled at by his "consultant" for not bringing in his diary (you have to fill in a record of what you've been doing to find work). Hmm, maybe they're clamping down on people!
So, back to my interview, Mark was keen to know all about me... what O Levels did I have (crikey I had to make them up, I couldn't remember!) and could I use my languages in work? Erm... doubt it, it's been almost 30 years since I spoke French or German! He was so funny - like a sketch show character, a really fussy pants. He seemed very frustrated that my address was so short - just my house number, street name and Leeds! So he made the middle bit up!! I just let him add in the district that he thought I lived in. We filled lots of forms in (he got very agitated at one stage when he'd filled the wrong date and ripped up the form in temper) and then he gave me a little folder with my diary in, and all the things I had to promise to do to find work.... and then my signing on dates. To be fair to the guy, I told him about my personal situation and he worked it so I only had to sign on once in April and once in May due to the bank holidays and easter. Then he asked if I wanted to do a job search there and then on the jobcentre database. Go on then, I thought. So we spent 15 minutes deciding what job code to put in, and agreed on "insurance manager" despite me trying to explain to him what I did. Then he asked what salary I wanted. Same as my last job, I said. Fair enough, says he - what was that then? When I told him, he visibly gulped. But didn't bat an eyelid as he said "Well, you've presented me with quite a challenge there, Janice". After a while trawling through jobs offering no more than a quarter of my desired salary, we decided to call it a day. "I don't really think we cater for people like you". He said. People like me? I thought I was normal!!!
He's probably about 12 years old. I can't say I'm looking forward to this.
Then I think I will take Roy out for dinner to:
- thank him for being so brilliant while I'm away from home so much
- celebrate me leaving my job on Monday and
- spend some of my redundancy pay.
All being well (and Dad seems pretty stable at the moment) I'll be home until Monday morning. We've organised for carers to pop in at night to do the couple of things that my sis and I do for dad - move him to a comfy position in the bed and some other things which aren't for mentioning whilst people are having breakfast!. Dad says he is happy with that but I will check that it goes ok tonight and if not, see what else we could organise.
Comment added in May:
Oh I wanted to comment on the signing on process! I had got myself so worked up about this. The whole idea of it (having worked since I was 16 and never claimed a penny's benefit) was making me quite anxious.
So I got home to find a letter from the Department of Work and Pensions asking me to bring along about 433 separate items to my interview! What? Most of it seemed to be about Roy - his accounts, etc. etc. In a mad rush I just threw whatever I could find into my folder and ran out. Somebody was digging up our road, and blocking the way - more stress... they were dillying around saying they'd only be 5 minutes - and I was flapping that I'd be denied dole if I was late for the appointment!
Finally arrived at the Jobcentre, to find 2 big burly bouncers at the door.... they had a list of names and checked me off on the way in. I was sent into one side of the office for "processing". I sat in the waiting area (surprisingly pleasant with sofas!) and eyed up the assistants sitting there... all of whom looked to me like complete jobsworths. The one who I was called to reminded me of "Computer Says No..." from Little Britain. I had a really bad attitude as I sat there, sulking because I didn't want to do it. Just pay me the money, will you! Anyway, I was totally wrong. The lady who I saw was very nice indeed. She dismissed the pile of papers I'd brought with me - apparently the people who fill the forms in don't understand the benefits and ask for everything - and just wanted my last payslip. Which of course I'd lost (turned out I'd dropped it in Lorraine's car) so she took details of Pru and said she'd call them. Once she'd finished I was taken in to my appointment (Job Focused Interview!) with Mark Somebody. He wasn't 12 (as I'd predicted). He was late 40's I'd say... and looked like the type who still lives at home with his mum. I don't know if the staff had been to the pub at lunch, but the whole office smelled of stale booze. Maybe that's the smell of jobseekers, LOL. I was frightened half to death by one of the jobseekers being yelled at by his "consultant" for not bringing in his diary (you have to fill in a record of what you've been doing to find work). Hmm, maybe they're clamping down on people!
So, back to my interview, Mark was keen to know all about me... what O Levels did I have (crikey I had to make them up, I couldn't remember!) and could I use my languages in work? Erm... doubt it, it's been almost 30 years since I spoke French or German! He was so funny - like a sketch show character, a really fussy pants. He seemed very frustrated that my address was so short - just my house number, street name and Leeds! So he made the middle bit up!! I just let him add in the district that he thought I lived in. We filled lots of forms in (he got very agitated at one stage when he'd filled the wrong date and ripped up the form in temper) and then he gave me a little folder with my diary in, and all the things I had to promise to do to find work.... and then my signing on dates. To be fair to the guy, I told him about my personal situation and he worked it so I only had to sign on once in April and once in May due to the bank holidays and easter. Then he asked if I wanted to do a job search there and then on the jobcentre database. Go on then, I thought. So we spent 15 minutes deciding what job code to put in, and agreed on "insurance manager" despite me trying to explain to him what I did. Then he asked what salary I wanted. Same as my last job, I said. Fair enough, says he - what was that then? When I told him, he visibly gulped. But didn't bat an eyelid as he said "Well, you've presented me with quite a challenge there, Janice". After a while trawling through jobs offering no more than a quarter of my desired salary, we decided to call it a day. "I don't really think we cater for people like you". He said. People like me? I thought I was normal!!!
Tuesday 27 March 2007
Tuesday 27th March
No news here. Dad is comfy and resting. Well, actually he's having a Reiki session done... by a lovely lady who is also a qualified nurse. They seem to use it a lot for cancer patients. The "free" service that he's entitled to can't be booked until next Tuesday, so we found this lady on the Reiki Practitioners website and called her yesterday. I hope it helps him in some way - he's experiencing a little bit of pain in his chest which I think is due to a persistent cough he's got.
Update: Yes, my dad did find the Reiki session helpful. He said it took the "sharp edge" off his chest pain. He had a good day yesterday (bright and chatty) but today seems weaker and is speaking very tiredly (if that makes sense). I guess this is how it will be. The Reiki lady was lovely - she gave my mum a charm for under her pillow and is going to send mum some Reiki tonight (apparently it can be done remotely!!) for her neck pain.
I like the "Reiki precepts":
Just for today do not worry
Just for today do not anger
Honour your parents, teachers and elders
Earn your living honestly
Show gratitude to every living thing.
The lady said she felt a very loved, giving and open person when she was treating him. She let us wander in and out of the room while she was doing his treatment, but we didn't stay long.
I have put my gym membership on hold for now. They will reduce our monthly fee due to my circumstances which is good cos it means that Roy can still go while I am away, but that I'm not wasting my money. I am now down 16lbs since the start of the year. Although this week I've eaten a lot of crap - it has to stop!
We seem to have a it of a routine going at home now. Up till now it's been too hectic and disjointed for me to think about eating too much! Today was so warm. I only went out once (at about 4pm). So tomorrow I might try to do a nice walk to get some air and exercise.
Email to Neets:
Thanks so much for your kind words. We're doing ok here - it's pretty tough but knowing that I'm a key part of Dad's care team has made me determined to stay strong for him and give him the best possible support to make him comfortable.
Update: Yes, my dad did find the Reiki session helpful. He said it took the "sharp edge" off his chest pain. He had a good day yesterday (bright and chatty) but today seems weaker and is speaking very tiredly (if that makes sense). I guess this is how it will be. The Reiki lady was lovely - she gave my mum a charm for under her pillow and is going to send mum some Reiki tonight (apparently it can be done remotely!!) for her neck pain.
I like the "Reiki precepts":
Just for today do not worry
Just for today do not anger
Honour your parents, teachers and elders
Earn your living honestly
Show gratitude to every living thing.
The lady said she felt a very loved, giving and open person when she was treating him. She let us wander in and out of the room while she was doing his treatment, but we didn't stay long.
I have put my gym membership on hold for now. They will reduce our monthly fee due to my circumstances which is good cos it means that Roy can still go while I am away, but that I'm not wasting my money. I am now down 16lbs since the start of the year. Although this week I've eaten a lot of crap - it has to stop!
We seem to have a it of a routine going at home now. Up till now it's been too hectic and disjointed for me to think about eating too much! Today was so warm. I only went out once (at about 4pm). So tomorrow I might try to do a nice walk to get some air and exercise.
Email to Neets:
Thanks so much for your kind words. We're doing ok here - it's pretty tough but knowing that I'm a key part of Dad's care team has made me determined to stay strong for him and give him the best possible support to make him comfortable.
Monday 26 March 2007
Monday 26th March
There is plenty of Shepherd's Pie left because my dad isn't eating it. He can't manage anything at all now other than baby-type food. So he stays on soup, custard and his 600 calorie drinks from the hospital. So mum and I are working our way through the Shepherd's Pie. It won't go to waste!!!
As of 5pm tonight I too officially became unemployed. After 29 years in the workplace! I don't know if I have already told you this but I decided to take a career break while I help care for Dad, so I abandoned my job search in February.
Interestingly, it seems as if the jobs with the two companies I was already talking to have fallen through anyway. I am a great believer in fate - it obviously wasn't meant to be.
When I am ready to look for a job I think I'll be a bit more open minded and maybe seek something a bit different... who knows. I don't know when that will be...For now, we're going to try to live off one wage, and avoid spending my redundancy pay off.
As of 5pm tonight I too officially became unemployed. After 29 years in the workplace! I don't know if I have already told you this but I decided to take a career break while I help care for Dad, so I abandoned my job search in February.
Interestingly, it seems as if the jobs with the two companies I was already talking to have fallen through anyway. I am a great believer in fate - it obviously wasn't meant to be.
When I am ready to look for a job I think I'll be a bit more open minded and maybe seek something a bit different... who knows. I don't know when that will be...For now, we're going to try to live off one wage, and avoid spending my redundancy pay off.
Saturday 24 March 2007
Saturday 24th March
We just ate a lovely chinese meal and now I feel so sleepy!
Going to sort my dad's evening stuff out in about an hour then I'll be headed off to bed. Roy is over with me tonight - and if all is well we'll go home tomorrow and then I'll drive back here on Monday morning.
My uncle and his wife are back in South Africa now. It was wonderful to have them here, but very hectic. Also, their grand-daughter turned up! She is backpacking in the UK (London) and when she heard they were here she jumped on a train up North! She was a lovely girl and it was nice to meet a second cousin I never even knew about.
Hers is a sad tale as her father (my cousin) was badly brain damaged in a car crash 16 years ago, when Evelyn was 4. So he is now full time in a nursing home and doesn't really know people too well when they visit.
Ah well, there I go again with my cheery tales!
Got my new mobile phone today. It's a Samsung. Starting to wish I'd stuck with Nokia - I know my way around their phones having used one for 10 years! Feels odd to be navigating round something different.......
Comment added in May:
Went to see Dad in hospital on the Friday afternoon - he still wasn't happy but it was looking good for his escaping Saturday morning so that was encouraging. They hadn't bothered to get him the Fortisip Neutral drinks he liked (every time we asked they'd been ordered and would be "here in a minute"). Also they didn't put the stoma bag on properly with a ring seal thingy that stopped it leaking so much. What a horrible ward.
Got home just before 5 and Dad's proper hospital bed (an electrically adjustable one) arrived. We had a bit of bother with it at first cos it wouldn't move at all.... and then we panicked as he was due home Saturday morning and it was now just after 5pm and nobody was answering the phone at the Supplier's office. So we left a message with the District Nurse to say "help"!!
A few minutes later, Lorraine and I had the idea of unplugging all the various connector cables and re-connecting them. Seemed to do the trick.... I got onto the bed and had a play, and everything seemed to work fine. It's a fabulous bed.... I just wish the circumstances were different.
Drove home later tonight. Nurses called me en route, but I was able to tell them that the problem was solved! We'd left a voicemail for them to that effect, but they must have only picked up the first message.
So now we need more new bedding! Single sized this time.
Going to sort my dad's evening stuff out in about an hour then I'll be headed off to bed. Roy is over with me tonight - and if all is well we'll go home tomorrow and then I'll drive back here on Monday morning.
My uncle and his wife are back in South Africa now. It was wonderful to have them here, but very hectic. Also, their grand-daughter turned up! She is backpacking in the UK (London) and when she heard they were here she jumped on a train up North! She was a lovely girl and it was nice to meet a second cousin I never even knew about.
Hers is a sad tale as her father (my cousin) was badly brain damaged in a car crash 16 years ago, when Evelyn was 4. So he is now full time in a nursing home and doesn't really know people too well when they visit.
Ah well, there I go again with my cheery tales!
Got my new mobile phone today. It's a Samsung. Starting to wish I'd stuck with Nokia - I know my way around their phones having used one for 10 years! Feels odd to be navigating round something different.......
Comment added in May:
Went to see Dad in hospital on the Friday afternoon - he still wasn't happy but it was looking good for his escaping Saturday morning so that was encouraging. They hadn't bothered to get him the Fortisip Neutral drinks he liked (every time we asked they'd been ordered and would be "here in a minute"). Also they didn't put the stoma bag on properly with a ring seal thingy that stopped it leaking so much. What a horrible ward.
Got home just before 5 and Dad's proper hospital bed (an electrically adjustable one) arrived. We had a bit of bother with it at first cos it wouldn't move at all.... and then we panicked as he was due home Saturday morning and it was now just after 5pm and nobody was answering the phone at the Supplier's office. So we left a message with the District Nurse to say "help"!!
A few minutes later, Lorraine and I had the idea of unplugging all the various connector cables and re-connecting them. Seemed to do the trick.... I got onto the bed and had a play, and everything seemed to work fine. It's a fabulous bed.... I just wish the circumstances were different.
Drove home later tonight. Nurses called me en route, but I was able to tell them that the problem was solved! We'd left a voicemail for them to that effect, but they must have only picked up the first message.
So now we need more new bedding! Single sized this time.
Thursday 22 March 2007
Thursday 22nd March
Dad has no pain at all. Long may that continue. He is, however, failing pretty fast and is very weak and tired. He cannot stand at all or even move his legs in the bed. I would rather that than him be in pain, though - as we can cope with mobility.
I know they can deal with pain, too (with drugs) but at least so far he is fully aware and not doped up. He doesn't even take paracetomol.
I am waiting to go shopping but we have to see the District Nurse first when he comes, as there are a few problems we need to discuss (about dad).
By the way, my sister is doing as much, if not more, than me. She's got herself signed off sick for a few weeks and I think we make a pretty good team! I am not here on my own. And of course, mum is here, but I don't like her to see too much when we're caring for dad as it is quite shocking and upsetting. I've kind of hardened myself to it but when mum is in the room she gets very upset to see dad the way he is.
Comment added in May:
We'd wanted to see the District Nurse because it was very clear that Dad was bleeding - his stoma bag and catheter bag had blood in them. Signs that they'd told us to watch out for when they told us the INR was alarmingly high (over 10). I'd reported it to the on call doctor the night before but she'd said to wait and see the District Nurse.
Before the District Nurse arrived this day, dad's GP (Dr Kay Rathbone) turned up. She'd seen his INR results and wanted to check on him. She looked at Dad and took his BP. 90/60 - too low. She checked the blood in his catheter and stoma bag and said that Dad would have to go to hospital. He didn't resist, but he did comment to Lorraine that he wished they'd just leave him to bleed to death.
An ambulance came quite quickly and I volunteered to go in that, while Lorraine took the car and Dad's things. We told mum she should stay at home.... she did argue a bit but we persuaded her that sitting around all day wasn't going to do her any good.
Well after getting car sick in the back of the ambulance (how disappointing as I'd always wanted to go in an ambulance) we were taken into the Emergency Admissions Unit at around 2pm and there the process of waiting began. Dad was looking really poorly and getting more uncomfortable with every minute that passed (his bed sores were really giving him pain). Eventually we saw a young Doctor who took some blood and had a chat with Dad. He then had to get the results organised and get his treatment plan signed off by somebody more senior. This took until after 6pm, by which time Dad was actually complaining (something he rarely does in hospital) and absolutely desperate to be moved and made more comfortable. He kept saying "tell them I need a 4" pressure pad to sit on". Then they decided to take Dad for a chest x-ray before he could go onto the ward. The nurse sent Lorraine and I for a coffee and told us to meet them on A4 at 7.30pm.
No sign of Dad when we got there, we finally managed to find out that he was on A6 (they changed his ward number three times!). A6 was about 20 yards down the corridor from A5, where Dad spent almost 6 weeks. The nursing staff on A5 were wonderful. Quite a different story on A6.
The ward itself was dirty looking (in fact, I cleaned the floor by Dad's bed as there was food and spilled coffee on it). The place just had a very different vibe to it from A5. It was visiting time when we got up to Dad's bed - he was pretty zonked out and finally looked comfy.
We were surprised to see Kevin (who'd been in A5 when Dad was there) in the ward. And also, Roy, another "neighbour" of Dads was still in A5. We'd seen Lucy (A5 Staff Nurse) as we passed through and she said she'd spoken to Dad as he went through there.
So, we went to Dad and started trying to find somebody to talk to about the treatment plan. I was also concerned because we had all Dad's meds with us and wanted to explain where he was up to with them. The first nurse we spoke to didn't seem interested as she was going off duty at 8 - "tell the night staff" was her advice. Then a little skanky looking thing with attitude came marching in and hooked a bag of gelofusion onto dad. When I asked what it was for and how long it would take to go through, she was really dismissive and said "I've no idea, I don't know the patient, I'm only doing this as a favour". And stomped off. By this time I was getting quite irritated and so went out to the Nurse's station where I found a Sister. I asked if the night staff were on yet and she said yes. "Oh, cos I'm waiting to see Dad's nurse" I explained. She suggested that I speak to Sarah (his day shift nurse). "I've already tried that, and she told me to see the night staff". Grudgingly, the sister came over and got Dad's file out. She gave us a rough idea of what the plan was, and said a doctor would be round.
Dad, in the meantime, started vomiting. He filled bowl after bowl of liquid full of black stuff. I was terrified - what the hell is this? I immediately thought "lung cancer". When we finally got a nurse to look at it, she said it was "just old blood" from his stomach. God knows how long he'd been bleeding for. Then they just left Lorraine to deal with Dad while he was being sick.
We stayed with Dad and he settled a bit, but started to wander a bit and talk about seemingly random things. At one point, the guy in the next bed had opened his bowels (bear in mind we're on a colo-rectal ward!) and it smelled a bit (actually it smelled a LOT!). Dad started asking if they'd had lamb curry for tea! Then he said "Oh, you can buy it ready made, or you can make it your own way". Soon after, he started to tell us a tale about having to deliver some glass (we thought he'd said glasses) and having to be there on time, at 6am, in London. He told us he did it, he got there on time. We later found out that this was an actual job he'd done when he worked for Holt Lane Transport. We couldn't figure out what he was talking about at the time.
Soon after, Dad seemed to pick up a bit and the nurse checked his BP - it had come back up a bit. Then the doctor arrived and put the fear of god into us. She was only a young girl, and she started asking Dad what he wanted them to do if he took a turn for the worse during the night. Dad was still a bit out of it, and I said to her that he didn't really understand what she was asking him... she gave up and came round to see me. She asked if we'd discussed as a family what our wishes were in the event of his heart stopping. I was shocked. I asked her if she thought that this was likely. She said it was possible. Crikey - we hadn't quite realised what we were dealing with. She then said she'd come back with her senior surgeon.
After a while they came back - by this time Dad was a lot brighter and more "with it". So, the surgeon explained to Dad that there was a chance he could take a bad turn in the night. He explained that he thought this unlikely and that they seemed to have things under control, but what did Dad want them to do? Did he want the crash team involved? Dad just looked at him and said "D. N. R.". The junior doctor looked at me. "He's telling you Do Not Recussitate" I said.
By this time it was getting late and they were settling people down in the ward. Dad had stabilised and his BP was going back up every time they took it. Lorraine asked him if he wanted us to stay. He didn't. So we left at around midnight and headed home.
Next day, all was well, but Dad had to stay in another night until his INR was back at normal levels. This took just another day and they let Dad home on the Saturday. Which was lucky because his hospital bed and hoist had arrived on Friday night.
It was a strange experience to be wishing that Dad would pull through this. I knew he was terminally ill, but it just didn't seem like it was the right time for him to go.
I know they can deal with pain, too (with drugs) but at least so far he is fully aware and not doped up. He doesn't even take paracetomol.
I am waiting to go shopping but we have to see the District Nurse first when he comes, as there are a few problems we need to discuss (about dad).
By the way, my sister is doing as much, if not more, than me. She's got herself signed off sick for a few weeks and I think we make a pretty good team! I am not here on my own. And of course, mum is here, but I don't like her to see too much when we're caring for dad as it is quite shocking and upsetting. I've kind of hardened myself to it but when mum is in the room she gets very upset to see dad the way he is.
Comment added in May:
We'd wanted to see the District Nurse because it was very clear that Dad was bleeding - his stoma bag and catheter bag had blood in them. Signs that they'd told us to watch out for when they told us the INR was alarmingly high (over 10). I'd reported it to the on call doctor the night before but she'd said to wait and see the District Nurse.
Before the District Nurse arrived this day, dad's GP (Dr Kay Rathbone) turned up. She'd seen his INR results and wanted to check on him. She looked at Dad and took his BP. 90/60 - too low. She checked the blood in his catheter and stoma bag and said that Dad would have to go to hospital. He didn't resist, but he did comment to Lorraine that he wished they'd just leave him to bleed to death.
An ambulance came quite quickly and I volunteered to go in that, while Lorraine took the car and Dad's things. We told mum she should stay at home.... she did argue a bit but we persuaded her that sitting around all day wasn't going to do her any good.
Well after getting car sick in the back of the ambulance (how disappointing as I'd always wanted to go in an ambulance) we were taken into the Emergency Admissions Unit at around 2pm and there the process of waiting began. Dad was looking really poorly and getting more uncomfortable with every minute that passed (his bed sores were really giving him pain). Eventually we saw a young Doctor who took some blood and had a chat with Dad. He then had to get the results organised and get his treatment plan signed off by somebody more senior. This took until after 6pm, by which time Dad was actually complaining (something he rarely does in hospital) and absolutely desperate to be moved and made more comfortable. He kept saying "tell them I need a 4" pressure pad to sit on". Then they decided to take Dad for a chest x-ray before he could go onto the ward. The nurse sent Lorraine and I for a coffee and told us to meet them on A4 at 7.30pm.
No sign of Dad when we got there, we finally managed to find out that he was on A6 (they changed his ward number three times!). A6 was about 20 yards down the corridor from A5, where Dad spent almost 6 weeks. The nursing staff on A5 were wonderful. Quite a different story on A6.
The ward itself was dirty looking (in fact, I cleaned the floor by Dad's bed as there was food and spilled coffee on it). The place just had a very different vibe to it from A5. It was visiting time when we got up to Dad's bed - he was pretty zonked out and finally looked comfy.
We were surprised to see Kevin (who'd been in A5 when Dad was there) in the ward. And also, Roy, another "neighbour" of Dads was still in A5. We'd seen Lucy (A5 Staff Nurse) as we passed through and she said she'd spoken to Dad as he went through there.
So, we went to Dad and started trying to find somebody to talk to about the treatment plan. I was also concerned because we had all Dad's meds with us and wanted to explain where he was up to with them. The first nurse we spoke to didn't seem interested as she was going off duty at 8 - "tell the night staff" was her advice. Then a little skanky looking thing with attitude came marching in and hooked a bag of gelofusion onto dad. When I asked what it was for and how long it would take to go through, she was really dismissive and said "I've no idea, I don't know the patient, I'm only doing this as a favour". And stomped off. By this time I was getting quite irritated and so went out to the Nurse's station where I found a Sister. I asked if the night staff were on yet and she said yes. "Oh, cos I'm waiting to see Dad's nurse" I explained. She suggested that I speak to Sarah (his day shift nurse). "I've already tried that, and she told me to see the night staff". Grudgingly, the sister came over and got Dad's file out. She gave us a rough idea of what the plan was, and said a doctor would be round.
Dad, in the meantime, started vomiting. He filled bowl after bowl of liquid full of black stuff. I was terrified - what the hell is this? I immediately thought "lung cancer". When we finally got a nurse to look at it, she said it was "just old blood" from his stomach. God knows how long he'd been bleeding for. Then they just left Lorraine to deal with Dad while he was being sick.
We stayed with Dad and he settled a bit, but started to wander a bit and talk about seemingly random things. At one point, the guy in the next bed had opened his bowels (bear in mind we're on a colo-rectal ward!) and it smelled a bit (actually it smelled a LOT!). Dad started asking if they'd had lamb curry for tea! Then he said "Oh, you can buy it ready made, or you can make it your own way". Soon after, he started to tell us a tale about having to deliver some glass (we thought he'd said glasses) and having to be there on time, at 6am, in London. He told us he did it, he got there on time. We later found out that this was an actual job he'd done when he worked for Holt Lane Transport. We couldn't figure out what he was talking about at the time.
Soon after, Dad seemed to pick up a bit and the nurse checked his BP - it had come back up a bit. Then the doctor arrived and put the fear of god into us. She was only a young girl, and she started asking Dad what he wanted them to do if he took a turn for the worse during the night. Dad was still a bit out of it, and I said to her that he didn't really understand what she was asking him... she gave up and came round to see me. She asked if we'd discussed as a family what our wishes were in the event of his heart stopping. I was shocked. I asked her if she thought that this was likely. She said it was possible. Crikey - we hadn't quite realised what we were dealing with. She then said she'd come back with her senior surgeon.
After a while they came back - by this time Dad was a lot brighter and more "with it". So, the surgeon explained to Dad that there was a chance he could take a bad turn in the night. He explained that he thought this unlikely and that they seemed to have things under control, but what did Dad want them to do? Did he want the crash team involved? Dad just looked at him and said "D. N. R.". The junior doctor looked at me. "He's telling you Do Not Recussitate" I said.
By this time it was getting late and they were settling people down in the ward. Dad had stabilised and his BP was going back up every time they took it. Lorraine asked him if he wanted us to stay. He didn't. So we left at around midnight and headed home.
Next day, all was well, but Dad had to stay in another night until his INR was back at normal levels. This took just another day and they let Dad home on the Saturday. Which was lucky because his hospital bed and hoist had arrived on Friday night.
It was a strange experience to be wishing that Dad would pull through this. I knew he was terminally ill, but it just didn't seem like it was the right time for him to go.
Wednesday 21 March 2007
Wednesday 21st March
I'll take some of that humour please cos mine is a bit thin on the ground this evening.
Dad is not good today (weak and sleeping a lot) and I feel quite down tonight.
My mum is "ok". Quote marks because it's tough to see her go through this, too.
I will try to check in again soon, I am sorry to be so absent but I do lurk occasionally but to be honest I am finding it hard to concentrate on things as there is always something happening here. Barely 10 minutes goes by without an interruption or something that needs to be done.
I'm not complaining about that, by the way, just letting you know.The docs wanted to take my dad back into hospital today as his INR levels are up (he takes warfarin) way above normal. I asked if it was absolutely essential, as Dad is exhausted after doing anything and was only telling me last night that he doesn't want to leave home again now. Anyhow, Doc agreed that there was nothing they would actually be doing in hospital and that Dad wasn't well enough to be moved. Thankfully he is staying here. I didn't tell him that they wanted to take him in, as he's settled today and sleeping lots and I don't want him anxious.
Gosh I am sorry for that miserable post - I was just having a moment there! I do know that you understand, and I know you've all been there in some guise at some point.... so thank you
And there was some good news today - I got my redundancy pay from my old Company (my last day is 26th March). I was more than pleasantly surprised.... I got even more than I had calculated. So it buys me time. I have decided to take a career break to help care for dad. With the money I got (and of course Roy is still earning) then we will cope financially and I am hoping not to dip into my payout, as ideally we want to put it off our mortgage. Sorry - forgot to tell you that bit!
I had just got upset cos my dad is now refusing to see visitors other than close family... he wants people to remember him as he was, and vice versa... it just got to me a bit. I don't know if this is just a bad spell and if he'll pick up again, but I suspect he thinks that he's going downhill now. Oops, I'm on a gloomy track again myself, so I will say goodnight and check in again soon.
Comment added in May:
This was the day that Dad asked me to phone George (one of his pals from back in his Brunswick Boy's Club days) to tell him not to visit. George fully understood, and I did say to him that if things changed, I'd let him know. Not a nice phone call to have to make, but Dad insisted I do it straight away and checked that I had.
After Dad came out of hospital, he was struggling to take the Furosemide tablets he'd been given - they were different, not as smooth as the ones he had been used to, and made him balk and want to vomit. So after much telephone tennis with his GP's office, we established that we could get a liquid version of the Furosemide. Dad was delighted with this and we then spent a day running around trying to get the prescription filled at a chemist. Finally got it late on in the day. At this point, Dad hadn't had his Furosemide for the day, so we gave him the liquid. At this time, his legs and feet were very swollen still (making it really tricky when he stood as he couldn't balance at all - apparently it's like trying to balance on two sponges).
Soooo... fast forward one week, and Dad's feet and legs are lovely and thin again - not an ounce of fluid on them. I also happened to check the Furosemide bottle to make sure the dosage was right. Whoops - I'd only been double-dosing Dad for SIX days!! On the one hand, it seemed to have done the job - no swollen feet! On the other hand I was concerned what other damage I might have done. Lorraine had a Doc's appointment so I asked her to mention it to Dr Rathbone and see what she said. I wrote down the full details of my misdemeanour! I was so relieved when she came back and said not to worry about it... just to halve the dose immediately! We told Dad his dosage had been cut due to his legs not swelling now. I made Lol and mum swear NEVER to tell him the truth...................
Dad is not good today (weak and sleeping a lot) and I feel quite down tonight.
My mum is "ok". Quote marks because it's tough to see her go through this, too.
I will try to check in again soon, I am sorry to be so absent but I do lurk occasionally but to be honest I am finding it hard to concentrate on things as there is always something happening here. Barely 10 minutes goes by without an interruption or something that needs to be done.
I'm not complaining about that, by the way, just letting you know.The docs wanted to take my dad back into hospital today as his INR levels are up (he takes warfarin) way above normal. I asked if it was absolutely essential, as Dad is exhausted after doing anything and was only telling me last night that he doesn't want to leave home again now. Anyhow, Doc agreed that there was nothing they would actually be doing in hospital and that Dad wasn't well enough to be moved. Thankfully he is staying here. I didn't tell him that they wanted to take him in, as he's settled today and sleeping lots and I don't want him anxious.
Gosh I am sorry for that miserable post - I was just having a moment there! I do know that you understand, and I know you've all been there in some guise at some point.... so thank you
And there was some good news today - I got my redundancy pay from my old Company (my last day is 26th March). I was more than pleasantly surprised.... I got even more than I had calculated. So it buys me time. I have decided to take a career break to help care for dad. With the money I got (and of course Roy is still earning) then we will cope financially and I am hoping not to dip into my payout, as ideally we want to put it off our mortgage. Sorry - forgot to tell you that bit!
I had just got upset cos my dad is now refusing to see visitors other than close family... he wants people to remember him as he was, and vice versa... it just got to me a bit. I don't know if this is just a bad spell and if he'll pick up again, but I suspect he thinks that he's going downhill now. Oops, I'm on a gloomy track again myself, so I will say goodnight and check in again soon.
Comment added in May:
This was the day that Dad asked me to phone George (one of his pals from back in his Brunswick Boy's Club days) to tell him not to visit. George fully understood, and I did say to him that if things changed, I'd let him know. Not a nice phone call to have to make, but Dad insisted I do it straight away and checked that I had.
After Dad came out of hospital, he was struggling to take the Furosemide tablets he'd been given - they were different, not as smooth as the ones he had been used to, and made him balk and want to vomit. So after much telephone tennis with his GP's office, we established that we could get a liquid version of the Furosemide. Dad was delighted with this and we then spent a day running around trying to get the prescription filled at a chemist. Finally got it late on in the day. At this point, Dad hadn't had his Furosemide for the day, so we gave him the liquid. At this time, his legs and feet were very swollen still (making it really tricky when he stood as he couldn't balance at all - apparently it's like trying to balance on two sponges).
Soooo... fast forward one week, and Dad's feet and legs are lovely and thin again - not an ounce of fluid on them. I also happened to check the Furosemide bottle to make sure the dosage was right. Whoops - I'd only been double-dosing Dad for SIX days!! On the one hand, it seemed to have done the job - no swollen feet! On the other hand I was concerned what other damage I might have done. Lorraine had a Doc's appointment so I asked her to mention it to Dr Rathbone and see what she said. I wrote down the full details of my misdemeanour! I was so relieved when she came back and said not to worry about it... just to halve the dose immediately! We told Dad his dosage had been cut due to his legs not swelling now. I made Lol and mum swear NEVER to tell him the truth...................
Tuesday 20 March 2007
Tuesday 20th March
I am still pretty busy here but we're getting something of a routine going and organising some external support too. I will try to do a full report at some stage this week!
Comment added in May:
Gordon and Margaret went home on Monday 19th. We were all very nervous about how "emotional" it would be when they said goodbye to Dad. As things turned out, Dad was fine (brave face, most likely) and poor Gordon was not. As they left, Dad said (apparently, I had done my usual running away trick) "I really enjoyed that".
I took them to the Train Station at Runcorn and went in to pick up the tickets and wait with them. As they left to go on to the platform, I got so choked that I couldn't actually say anything to them! Margaret had said her farewell earlier on - knowing that it would get difficult - and Gordon just said goodbye and thanked me for looking after them, and for all I was doing for Dad.
So, back in the car, and a quick cry before heading back to mums. En route I called at the market to drop off Dad's picture for re-framing. Roy smashed the glass when he was decorating. The picture had some sentimental value as it was one of two that mum and dad bought with money that Nana had given to them on a wedding anniversary, years ago.
The house seemed SO quiet without Gordon, Margaret and Evelyn in it. I suppose we'll get used to that.
I'm conscious that I haven't really written much about our South African relatives - but the week went so fast, and was so busy when they were here.
Auntie Margaret is lovely. Very witty, intelligent and bright. She has an unusual and addictive style of talking - I can see that I will copy it when we visit them next year, as I tend to pick up voice things like that! She beat the ass off us when playing Trivial Pursuit and does crosswords all day long. That's how clever my Auntie Margaret is.
Uncle Gordon is also lovely - quietish but isn't really, if you know what I mean. He talks and talks to Dad for hours, and then I think he comes out for a rest! He's great conversation when he gets going, interesting and also funny.
Evelyn is such an independent girl. I think we must have driven her mad by trying to mollycoddle her all the time! She never showed it though - she probably got rather bored sat im mums all day, but just got on with it (aided by lots of snacking and crosswords!).
One evening this week, I was lying on the double bed chatting to Dad (by this time he was living and sleeping in his recliner chair) and he started to talk about "after". This is code for "when I'm dead". He said he didn't want us to be one of those families who hang on to things (like a shirt, was his example) for sentimental reasons. Just get rid of it all, he said. Leave a short amount of time - 3 or 4 days - and then have a clear out. Ok, I said. We'll do that.
He also had commented on all his shoes (barely worn as he lived in trainers) and that the nice ones should go to the charity shop. Ok dad, no problem. I hated having these conversations, yet I knew how important they were to Dad so I would try to keep myself together until I'd left the room.
Writing this in May, it all seems like ages ago when this was happening - I feel quite hardened toward it all now. But I'm sure I'm not, deep down.
We had many, many conversations about Dad's financial affairs - he kept wanting to check his pensions and stuff. I think I've already written about this.
Comment added in May:
Gordon and Margaret went home on Monday 19th. We were all very nervous about how "emotional" it would be when they said goodbye to Dad. As things turned out, Dad was fine (brave face, most likely) and poor Gordon was not. As they left, Dad said (apparently, I had done my usual running away trick) "I really enjoyed that".
I took them to the Train Station at Runcorn and went in to pick up the tickets and wait with them. As they left to go on to the platform, I got so choked that I couldn't actually say anything to them! Margaret had said her farewell earlier on - knowing that it would get difficult - and Gordon just said goodbye and thanked me for looking after them, and for all I was doing for Dad.
So, back in the car, and a quick cry before heading back to mums. En route I called at the market to drop off Dad's picture for re-framing. Roy smashed the glass when he was decorating. The picture had some sentimental value as it was one of two that mum and dad bought with money that Nana had given to them on a wedding anniversary, years ago.
The house seemed SO quiet without Gordon, Margaret and Evelyn in it. I suppose we'll get used to that.
I'm conscious that I haven't really written much about our South African relatives - but the week went so fast, and was so busy when they were here.
Auntie Margaret is lovely. Very witty, intelligent and bright. She has an unusual and addictive style of talking - I can see that I will copy it when we visit them next year, as I tend to pick up voice things like that! She beat the ass off us when playing Trivial Pursuit and does crosswords all day long. That's how clever my Auntie Margaret is.
Uncle Gordon is also lovely - quietish but isn't really, if you know what I mean. He talks and talks to Dad for hours, and then I think he comes out for a rest! He's great conversation when he gets going, interesting and also funny.
Evelyn is such an independent girl. I think we must have driven her mad by trying to mollycoddle her all the time! She never showed it though - she probably got rather bored sat im mums all day, but just got on with it (aided by lots of snacking and crosswords!).
One evening this week, I was lying on the double bed chatting to Dad (by this time he was living and sleeping in his recliner chair) and he started to talk about "after". This is code for "when I'm dead". He said he didn't want us to be one of those families who hang on to things (like a shirt, was his example) for sentimental reasons. Just get rid of it all, he said. Leave a short amount of time - 3 or 4 days - and then have a clear out. Ok, I said. We'll do that.
He also had commented on all his shoes (barely worn as he lived in trainers) and that the nice ones should go to the charity shop. Ok dad, no problem. I hated having these conversations, yet I knew how important they were to Dad so I would try to keep myself together until I'd left the room.
Writing this in May, it all seems like ages ago when this was happening - I feel quite hardened toward it all now. But I'm sure I'm not, deep down.
We had many, many conversations about Dad's financial affairs - he kept wanting to check his pensions and stuff. I think I've already written about this.
Sunday 18 March 2007
Sunday 18th March
Hi - I just wanted to let you know I'm still around! I do lurk most days but time is short as we have had a hectic week.
My uncle goes back to South Africa this week so things will settle down a bit then. I hope to post more!
No news really. I'm more or less a full time carer now - which has been interesting. My dad is ok just at the moment, it's the mobility that is the main problem for now.
Comment added in May: (warning, this is a graphic one)
I had spent ages avoiding Dad's Stoma Bag. (There is a point to this statement but it will take me a while to get to it!).
On the morning after he got out of hospital, Lorraine and I were getting him ready for the day. In fact, we did this for over a week while the Home Care service was being organised. This routine took us about 2 and a half hours in total... it included tablet taking, breakfast, getting Dad out of the chair and onto the commode, into the bathroom, washing, emptying stoma and catheter bags, dressing and back into the chair. Sounds easy, eh? Not when dealing with somebody who doesn't have the strength to stand for more than 2 minutes, or who cannot lift his arms to put a vest on or clean his teeth. The hardest part was getting Dad up and manouevering him in and out of chairs - we were always terrified that he'd fall, even though he was holding on to both of us. Lorraine would usually take most of the weight, while I guided Dad how to shuffle round into position for his wheelchair. Then we had to remember to put brakes on and take brakes off the wheelchair. Also, throughout all of this, Dad would need to take constant breathers. After being pulled up to a sitting position on the chair. After standing. After being washed. After being wheeled back into the room. All of these things just completely wiped him out.
Mind you, the rest time gave us chance to sort stuff out - clothes, washing, clean bedding, etc. etc.
At this point, Dad was controlling his bowels to the point where he knew when he needed to "go" and so would ask to be taken to the bathroom. But his bowels were also emptying into the Stoma bag over his belly button too (there must have been a small tear in his colon from either one of the procedures/tests or something to do with the disease). First day out of hospital, I said I would do the bathroom stuff (washing Dad). We were kind of hoping that the District Nurses would empty the Stoma Bag. We got into the bathroom and Dad said to me that his bag was pretty full and could I empty it please. I must admit I was quite impressed with how coolly I responded. "Yes, no problem, they showed me how to do that in the hospital". Whilst inside I'm thinking: Oh my god! What if I feel sick. I need a surgical mask on! How the hell am I going to do this.
I got prepared. My preparation for this job involved latex gloves and lots of tissues. Oh and a kidney bowl to empty the bag into.
So, kneeling on the bathroom floor I unclipped the velcro ties and started to unravel the bag. I had no idea how this all worked. I soon found out! The bag was quite full. Dad was helping by holding the kidney bowl (he was sitting in the wheelchair at the time). As the contents hit the kidney bowl, it got heavy and Dad's hand wobbled. Some of the contents of the bowl landed on the floor. Oh god, mum's going to kill me! I got the bag emptied, cleaned and fastened up again - I think I only used about 20 tissues, not bad! Then I had to get Dad out of the bathroom, somehow without rolling his wheels in the mess we'd spilled. That went ok, and we got Dad back into his room and I started to clean up in the bathroom.
So, the irony was, that less than 24 hours after me physically running away from "The Stoma Bag", there I am, emptying it! I surprised myself - never in a million years did I imagine myself doing things like this. I actually don't think I could do it for anybody else - but for my Dad, yes - no problem. After that, emptying the bag became a matter of routine, and Dad & Lorraine invented more practical techniques for doing it. We also bought a special bowl for it!
Washing Dad used to upset me. In particular, when he would lift his face up to me while I carefully washed it with a flannel. He looked just like a little boy, and I used to find it hard to keep from crying some days. Washing his back, stomach and arms, I would be shocked by the weight loss... Neil's kid's call him "Great Big Grandad" and to see his flesh hanging off him and the clear outline of the bones in his shoulders and arms was horrendous.
I would hate it if Dad suggested that Mum come in to help move him (ie. steady the Zimmer frame while he got up). Seeing Dad so weak, helpless and struggling like that was very upsetting at first and Mum couldn't handle it. We tried to keep her out of there as much as we possibly could.
So, in that first week out of hospital - we learned so much, about caring and about our own capabilities. Also about how it was essential to toughen up and get on with it. In fact, having to be so practical actually helped take my mind off the awfulness of the whole situation. I was almost disappointed when the Carers started coming in to do these things... I felt like a spare part sitting there while they did all the washing and moving etc. Although we would still have to move Dad until his hoist and hospital bed arrived, as the Carers aren't allowed to do most of the lifts that we used to get Dad up (they're "illegal" apparently, in Home Care terms).
Despite all the things we've had to do for Dad, he has not once complained - he hasn't moaned that he can't do them for himself. He hasn't ever said that he feels undignified - and yet sometimes he must have done.
He just accepts it, does what he has to do, and I hope, is glad that we can be there for him.
My uncle goes back to South Africa this week so things will settle down a bit then. I hope to post more!
No news really. I'm more or less a full time carer now - which has been interesting. My dad is ok just at the moment, it's the mobility that is the main problem for now.
Comment added in May: (warning, this is a graphic one)
I had spent ages avoiding Dad's Stoma Bag. (There is a point to this statement but it will take me a while to get to it!).
On the morning after he got out of hospital, Lorraine and I were getting him ready for the day. In fact, we did this for over a week while the Home Care service was being organised. This routine took us about 2 and a half hours in total... it included tablet taking, breakfast, getting Dad out of the chair and onto the commode, into the bathroom, washing, emptying stoma and catheter bags, dressing and back into the chair. Sounds easy, eh? Not when dealing with somebody who doesn't have the strength to stand for more than 2 minutes, or who cannot lift his arms to put a vest on or clean his teeth. The hardest part was getting Dad up and manouevering him in and out of chairs - we were always terrified that he'd fall, even though he was holding on to both of us. Lorraine would usually take most of the weight, while I guided Dad how to shuffle round into position for his wheelchair. Then we had to remember to put brakes on and take brakes off the wheelchair. Also, throughout all of this, Dad would need to take constant breathers. After being pulled up to a sitting position on the chair. After standing. After being washed. After being wheeled back into the room. All of these things just completely wiped him out.
Mind you, the rest time gave us chance to sort stuff out - clothes, washing, clean bedding, etc. etc.
At this point, Dad was controlling his bowels to the point where he knew when he needed to "go" and so would ask to be taken to the bathroom. But his bowels were also emptying into the Stoma bag over his belly button too (there must have been a small tear in his colon from either one of the procedures/tests or something to do with the disease). First day out of hospital, I said I would do the bathroom stuff (washing Dad). We were kind of hoping that the District Nurses would empty the Stoma Bag. We got into the bathroom and Dad said to me that his bag was pretty full and could I empty it please. I must admit I was quite impressed with how coolly I responded. "Yes, no problem, they showed me how to do that in the hospital". Whilst inside I'm thinking: Oh my god! What if I feel sick. I need a surgical mask on! How the hell am I going to do this.
I got prepared. My preparation for this job involved latex gloves and lots of tissues. Oh and a kidney bowl to empty the bag into.
So, kneeling on the bathroom floor I unclipped the velcro ties and started to unravel the bag. I had no idea how this all worked. I soon found out! The bag was quite full. Dad was helping by holding the kidney bowl (he was sitting in the wheelchair at the time). As the contents hit the kidney bowl, it got heavy and Dad's hand wobbled. Some of the contents of the bowl landed on the floor. Oh god, mum's going to kill me! I got the bag emptied, cleaned and fastened up again - I think I only used about 20 tissues, not bad! Then I had to get Dad out of the bathroom, somehow without rolling his wheels in the mess we'd spilled. That went ok, and we got Dad back into his room and I started to clean up in the bathroom.
So, the irony was, that less than 24 hours after me physically running away from "The Stoma Bag", there I am, emptying it! I surprised myself - never in a million years did I imagine myself doing things like this. I actually don't think I could do it for anybody else - but for my Dad, yes - no problem. After that, emptying the bag became a matter of routine, and Dad & Lorraine invented more practical techniques for doing it. We also bought a special bowl for it!
Washing Dad used to upset me. In particular, when he would lift his face up to me while I carefully washed it with a flannel. He looked just like a little boy, and I used to find it hard to keep from crying some days. Washing his back, stomach and arms, I would be shocked by the weight loss... Neil's kid's call him "Great Big Grandad" and to see his flesh hanging off him and the clear outline of the bones in his shoulders and arms was horrendous.
I would hate it if Dad suggested that Mum come in to help move him (ie. steady the Zimmer frame while he got up). Seeing Dad so weak, helpless and struggling like that was very upsetting at first and Mum couldn't handle it. We tried to keep her out of there as much as we possibly could.
So, in that first week out of hospital - we learned so much, about caring and about our own capabilities. Also about how it was essential to toughen up and get on with it. In fact, having to be so practical actually helped take my mind off the awfulness of the whole situation. I was almost disappointed when the Carers started coming in to do these things... I felt like a spare part sitting there while they did all the washing and moving etc. Although we would still have to move Dad until his hoist and hospital bed arrived, as the Carers aren't allowed to do most of the lifts that we used to get Dad up (they're "illegal" apparently, in Home Care terms).
Despite all the things we've had to do for Dad, he has not once complained - he hasn't moaned that he can't do them for himself. He hasn't ever said that he feels undignified - and yet sometimes he must have done.
He just accepts it, does what he has to do, and I hope, is glad that we can be there for him.
Wednesday 14 March 2007
Wednesday 14th March
Hi - a very quick check in. Things are ok... a bit difficult now that we see how much care dad needs (his mobility is zilch, but he's pretty well in himself). My sister and I are doing it for now (I'm acquiring some interesting new life skills) but the District Nurse is arranging for some carers to come and help from next week. But - dad had a full night's sleep last night for the first time in 5 weeks - so that is just such a bonus! Busy, busy, busy and didn't get too much sleep myself. I slept on mum's recliner chair as I wanted to see if Dad was ok in the night.
My new bed is at my sister's mother in law's house! I think I'll go there tonight as I am 5 minutes away if mum calls me, and Dad slept all night and didn't need anything. Yes, my aunt and uncle are here and that's been a great lift for dad, which is wonderful. Unfortunately I couldn't sleep in the flat next door as the single bed in the second room has been removed.
Comment added in May:
Ah yes - learning new life skills. Here's what happened on the Tuesday that dad came home (13th March). The hospital had booked an ambulance for Dad but said it was too late for me to book a seat in it. So I decided to go to the hospital anyway, to pick up Dad's things and sit with him while he waited for the ambulance (they'd said anytime before noon). Got there about 9, and Dad was sitting in his chair, looking a bit fed up. He said his INR levels were high and so he might not be able to come home. Lucy, his nurse, explained to me that they'd tested him the night before and his INR was too high. So they tested again at 6am, but were a few millilitres of blood short of being able to run a proper test! So they'd just sent off a new sample for urgent testing and would let us know.
We decided to get Dad's stuff ready anyway, just in case he was coming home. I took a few bags of stuff down to the car. Other than that I just sat with Dad, chatting. Around 10-ish, they came to say he could go home (thank goodness). Shortly after, Mr Tighe and his team of hanger-onners came round. He wanted to see Dad. I must admit, I panicked a bit, and practically ran out of the cubicle. Partly because I didn't want to see Dad's "bag" (he'd been left with a stoma bag from the unhealed laparoscopy wound, and by this time it was leaking faecal matter and pus). Partly because I felt a bit emotional anyway, and didn't want to hear any conversations about the cancer. In my defence, I also thought that if Dad wanted to ask his Consultant anything in private (like - how long have I got) then it wasn't fair for me to stay. So I ran down to the loo. Then I came back and the medical team was still in with Dad. Lucy saw me lurking in the corridor and said I could go back in. "Erm, no it's ok".
Eventually they left and I skulked back in. Dad seemed fine. Mr Tighe spotted me and came over. "Ok?" He asked. "Yes". "Fully informed about everything?". "Yes".
Dad said that Mr Tighe had told him he could possibly have some chemotherapy, if he "picked up a bit". Dad replied that he didn't want any treatment that was going to drag this out for him or the family. I said something like "well, it's up to you Dad but you should make sure you think about yourself and find out what they mean". No, he said. I've had a good life. I've been happy with your mum, and we've been happy haven't we? As a family? I agreed with him, and then he said he wasn't even thinking "Why me?". More along the lines of "Well, why not me".
So we both had a little cry together and then we got on with the job of packing his bags and getting ready to go home. And chatting about anything and nothing. Dad was keen to ensure that there were no "welcome home" banners up at the flat!
Lucy then came to explain some things to me. First, she showed me how to change Dad's catheter bag. Ok. Next, how to empty his Stoma Bag. Right. Then she went through all his meds with me. She gave me a number we could call to borrow a wheelchair for days out. And gave me two huge bags full of catheter bags and leg bags and all sorts of paraphenalia. Oh, and the "emergency" Stoma supply bag, to see us through until our full kit arrived. It suddenly started to dawn on me what we were about to take on at home.
While I was sitting there a vicar or minister or whatever you called him came round. I asked if he needed some time with Dad. Dad said no, they'd had a good long chat a few weeks ago. He just wanted to wish Dad all the best for going home. He left Dad a card with some nice prayers on it. Dad handed it to me and said "Put that in your bag, Jan."
Eventually the ambulance arrived. Lucy had come to talk to me about some last minute meds that came back from the pharmacy - Warfarin, I think - and so before I knew it Dad was gone! I barely got time to say goodbye to the Nurses (and I was getting upset doing so, anyway) and by the time I got downstairs there was no sign of Dad. I headed home and still beat Dad back by a good 30 minutes! Apparently his ambulance was taking 2 people home.
When he got home, the guys got him in his room and onto his bed. Immediately, it was apparent that the stoma bag had leaked. And there started our relationship with stoma bags, smells and poo (for want of the more technical term). We decided to wait until Brian (the District Nurse) arrived, as we knew he was coming at around 3-ish. Poor Dad had to sit there in it.
The Occupational Therapists arrived with more paraphenalia. A commode/wheelchair that worked either on its own, or rolled over the loo. A zimmer frame. Can't remember what else.
When Brian arrived he said he'd change the bag, but he'd need help to hold Dad upright. Lorraine got the job. I hot footed it into the lounge. The stink coming from Dad's room was horrendous.... at this point we didn't realise we'd get used to it in a day or so. Well - Lorraine and I would - Mum never did.
Finally, Dad was sorted out and settled. He lay on his new bed for a short while and then decided that it wasn't going to work, as he kept sliding down and it was making his pressure sores hurt more. So we moved him onto his recliner chair, where he stayed for over a week until the proper hospital bed arrived. I can't remember how we got Dad out of bed and onto his chair - I'm sure the wheelchair was involved somehow, but I know that over the course of the first few days after Dad got home, we became quite adept at moving him and getting him up. But the truth is, we were making it up as we went along and really had no clue whatsoever on handling a disabled person. Luckily Dad knew how they did things in the hospital, so he helped us a lot (or rather, gave the orders out!).
We were also quite shocked at home little Dad ate. Such tiny, tiny portions of everything. Something else we got used to.
My new bed is at my sister's mother in law's house! I think I'll go there tonight as I am 5 minutes away if mum calls me, and Dad slept all night and didn't need anything. Yes, my aunt and uncle are here and that's been a great lift for dad, which is wonderful. Unfortunately I couldn't sleep in the flat next door as the single bed in the second room has been removed.
Email to Trish:
Hi - my dad is home now. His mobility is poor (i.e. non existent) but at least he is comfortable and slept last night (first night home).
Comment added in May:
Ah yes - learning new life skills. Here's what happened on the Tuesday that dad came home (13th March). The hospital had booked an ambulance for Dad but said it was too late for me to book a seat in it. So I decided to go to the hospital anyway, to pick up Dad's things and sit with him while he waited for the ambulance (they'd said anytime before noon). Got there about 9, and Dad was sitting in his chair, looking a bit fed up. He said his INR levels were high and so he might not be able to come home. Lucy, his nurse, explained to me that they'd tested him the night before and his INR was too high. So they tested again at 6am, but were a few millilitres of blood short of being able to run a proper test! So they'd just sent off a new sample for urgent testing and would let us know.
We decided to get Dad's stuff ready anyway, just in case he was coming home. I took a few bags of stuff down to the car. Other than that I just sat with Dad, chatting. Around 10-ish, they came to say he could go home (thank goodness). Shortly after, Mr Tighe and his team of hanger-onners came round. He wanted to see Dad. I must admit, I panicked a bit, and practically ran out of the cubicle. Partly because I didn't want to see Dad's "bag" (he'd been left with a stoma bag from the unhealed laparoscopy wound, and by this time it was leaking faecal matter and pus). Partly because I felt a bit emotional anyway, and didn't want to hear any conversations about the cancer. In my defence, I also thought that if Dad wanted to ask his Consultant anything in private (like - how long have I got) then it wasn't fair for me to stay. So I ran down to the loo. Then I came back and the medical team was still in with Dad. Lucy saw me lurking in the corridor and said I could go back in. "Erm, no it's ok".
Eventually they left and I skulked back in. Dad seemed fine. Mr Tighe spotted me and came over. "Ok?" He asked. "Yes". "Fully informed about everything?". "Yes".
Dad said that Mr Tighe had told him he could possibly have some chemotherapy, if he "picked up a bit". Dad replied that he didn't want any treatment that was going to drag this out for him or the family. I said something like "well, it's up to you Dad but you should make sure you think about yourself and find out what they mean". No, he said. I've had a good life. I've been happy with your mum, and we've been happy haven't we? As a family? I agreed with him, and then he said he wasn't even thinking "Why me?". More along the lines of "Well, why not me".
So we both had a little cry together and then we got on with the job of packing his bags and getting ready to go home. And chatting about anything and nothing. Dad was keen to ensure that there were no "welcome home" banners up at the flat!
Lucy then came to explain some things to me. First, she showed me how to change Dad's catheter bag. Ok. Next, how to empty his Stoma Bag. Right. Then she went through all his meds with me. She gave me a number we could call to borrow a wheelchair for days out. And gave me two huge bags full of catheter bags and leg bags and all sorts of paraphenalia. Oh, and the "emergency" Stoma supply bag, to see us through until our full kit arrived. It suddenly started to dawn on me what we were about to take on at home.
While I was sitting there a vicar or minister or whatever you called him came round. I asked if he needed some time with Dad. Dad said no, they'd had a good long chat a few weeks ago. He just wanted to wish Dad all the best for going home. He left Dad a card with some nice prayers on it. Dad handed it to me and said "Put that in your bag, Jan."
Eventually the ambulance arrived. Lucy had come to talk to me about some last minute meds that came back from the pharmacy - Warfarin, I think - and so before I knew it Dad was gone! I barely got time to say goodbye to the Nurses (and I was getting upset doing so, anyway) and by the time I got downstairs there was no sign of Dad. I headed home and still beat Dad back by a good 30 minutes! Apparently his ambulance was taking 2 people home.
When he got home, the guys got him in his room and onto his bed. Immediately, it was apparent that the stoma bag had leaked. And there started our relationship with stoma bags, smells and poo (for want of the more technical term). We decided to wait until Brian (the District Nurse) arrived, as we knew he was coming at around 3-ish. Poor Dad had to sit there in it.
The Occupational Therapists arrived with more paraphenalia. A commode/wheelchair that worked either on its own, or rolled over the loo. A zimmer frame. Can't remember what else.
When Brian arrived he said he'd change the bag, but he'd need help to hold Dad upright. Lorraine got the job. I hot footed it into the lounge. The stink coming from Dad's room was horrendous.... at this point we didn't realise we'd get used to it in a day or so. Well - Lorraine and I would - Mum never did.
Finally, Dad was sorted out and settled. He lay on his new bed for a short while and then decided that it wasn't going to work, as he kept sliding down and it was making his pressure sores hurt more. So we moved him onto his recliner chair, where he stayed for over a week until the proper hospital bed arrived. I can't remember how we got Dad out of bed and onto his chair - I'm sure the wheelchair was involved somehow, but I know that over the course of the first few days after Dad got home, we became quite adept at moving him and getting him up. But the truth is, we were making it up as we went along and really had no clue whatsoever on handling a disabled person. Luckily Dad knew how they did things in the hospital, so he helped us a lot (or rather, gave the orders out!).
We were also quite shocked at home little Dad ate. Such tiny, tiny portions of everything. Something else we got used to.
Monday 12 March 2007
Monday 12th March
Have a lot to do this morning and then am headed to mums.
Will check in when I can but the next few days are going to be hectic (uncle arriving, dad coming home etc).
Ah well, I really must go. For only about the second time in my life, I'm having an appointment with a Financial Adviser. I need to sort out my pension when I leave my company on 26th March. If I don't transfer it somewhere else, I'll lose 50% of all the contributions they've paid in for me! I'll be darned if I'll let them get away with that.
Comment added in May:
How wonderful to meet Auntie Margaret and Uncle Gordon again after almost 40 years! They are lovely people and I warmed to them straight away. We took them to the hospital to see Dad - they all wanted to "get it over with" I think. I bottled it! I was scared of all the emotion that would be flying around so after I dropped them at the entrance door, I got the car parked (pretty much straight away) and then deliberately dawdled all the way to the ward so that I would not have to see the reunion.
It was a lovely, happy visit. Dad was animated and happy to see them.
Will check in when I can but the next few days are going to be hectic (uncle arriving, dad coming home etc).
Ah well, I really must go. For only about the second time in my life, I'm having an appointment with a Financial Adviser. I need to sort out my pension when I leave my company on 26th March. If I don't transfer it somewhere else, I'll lose 50% of all the contributions they've paid in for me! I'll be darned if I'll let them get away with that.
Comment added in May:
How wonderful to meet Auntie Margaret and Uncle Gordon again after almost 40 years! They are lovely people and I warmed to them straight away. We took them to the hospital to see Dad - they all wanted to "get it over with" I think. I bottled it! I was scared of all the emotion that would be flying around so after I dropped them at the entrance door, I got the car parked (pretty much straight away) and then deliberately dawdled all the way to the ward so that I would not have to see the reunion.
It was a lovely, happy visit. Dad was animated and happy to see them.
Sunday 11 March 2007
Sunday 11th March
When I've needed support (ever, not just lately) it has been there in an instant from my cyber friends on Prevention.
I wouldn't say I've been resting - I've made 20 Shepherd's pies - 10 meat and 10 veggie. Most are for my dad to eat when he comes home, and I'll leave a couple for Roy!
I'm doing a sunday roast dinner tonight, too - what was I thinking of defrosting a pork loin! Mind you I cooked the meat this morning, and bought ready made gravy - so just the spuds and veggies to do!
I'll try to check in before I go back to mum's tomorrow... I have a couple of appointments in the morning though.
I wouldn't say I've been resting - I've made 20 Shepherd's pies - 10 meat and 10 veggie. Most are for my dad to eat when he comes home, and I'll leave a couple for Roy!
I'm doing a sunday roast dinner tonight, too - what was I thinking of defrosting a pork loin! Mind you I cooked the meat this morning, and bought ready made gravy - so just the spuds and veggies to do!
I'll try to check in before I go back to mum's tomorrow... I have a couple of appointments in the morning though.
Saturday 10 March 2007
Saturday 10th March
I was awake at 6! (early birds please note that 6am is the middle of the night as far as I am concerned ).
I got up at 7 having given up all hope of sleeping again. I'm taking mum shopping this morning, and then I'm headed home until Monday. I wanted to stay but my mum insists, and I do want to sort some stuff out at home.
Can you believe garden leave is nearly over? Only 2 weeks left . Then I'll be officially unemployed for the first time in 29 years. Do I care? Nope, not just at the moment!
I've cancelled my trip to South Africa (well, postponed it really - we'll go next Spring). But the fantastic news is that my dad's brother and his wife are flying over from South Africa on Monday next week. (This is after hearing the news about dad). They'll be staying "as long as it takes" apparently. I am so pleased - for my dad, obv. plus I think it will be extra support for mum.
Now, fate has a funny way of looking after you, doesn't it? We were thinking of where my uncle and aunt could stay (my sister offered to put them up but it would have meant throwing my nephew out of his room!). My parents only have a small 2-bedroomed flat and so they can't stay here. Sorry this is a long story...The flat right next door to my parent's is owned by a lady who bought it as an investment property... she has been letting it, but has had enough of dodgy tenants etc. and has just put it up for sale. It is currently vacant. My mum had got quite friendly with this lady (Marie) over the years, and has also really helped her out a few times over various things (keeping an eye on tenants, being a shoulder to cry on at times, etc).
By chance, Marie phoned Mum last night to ask after my dad. When she heard about my uncle's visit, she insisted that they stay in her vacant flat until it is sold. (It's a fully furnished flat, all I need to do is organise bedding and towels). AND to top it all, she is insisting that we do not give her any money. But mum and I do want to pay "rent" and we will sort something out. The other bonus is that it is a 2 bed flat (like mums) which means that I can stay there, too, when I'm over here. This is a massive help, as otherwise I'd have had to sleep on the sofa at my sisters. So, it's all worked out in the end.
My dad is very honoured - his brother hasn't set foot in the UK since he emigrated to South Africa 40 years ago!
Well after that long tale, I've forgotten everything else I planned to write!
Oh - forgot to say - my dad is coming home on Tuesday morning
I'm doing ok. Actually I was struggling a bit these last 2 days, but now that I'm home I've been able to get some things out of my system, if you know what I mean. I think I do hold back a bit around my family. But please don't worry about me cos I am not daft enough to bottle things in too much.
Comment added in May:
I was in a bit of a state when I got home on this Saturday. All morning I'd wanted to cry, walking round Tesco, and I couldn't wait to get home and blub. Roy was, as ever, marvellous. Although he did comment that it scares him to see me so much "not in control" of things. Because I usually am. I just felt physically sick with it today. So hopeless and unable to do anything for Dad. It was (and still is) an awful feeling, but I found over time that I got used to it... adapted I suppose.
I got up at 7 having given up all hope of sleeping again. I'm taking mum shopping this morning, and then I'm headed home until Monday. I wanted to stay but my mum insists, and I do want to sort some stuff out at home.
Can you believe garden leave is nearly over? Only 2 weeks left . Then I'll be officially unemployed for the first time in 29 years. Do I care? Nope, not just at the moment!
I've cancelled my trip to South Africa (well, postponed it really - we'll go next Spring). But the fantastic news is that my dad's brother and his wife are flying over from South Africa on Monday next week. (This is after hearing the news about dad). They'll be staying "as long as it takes" apparently. I am so pleased - for my dad, obv. plus I think it will be extra support for mum.
Now, fate has a funny way of looking after you, doesn't it? We were thinking of where my uncle and aunt could stay (my sister offered to put them up but it would have meant throwing my nephew out of his room!). My parents only have a small 2-bedroomed flat and so they can't stay here. Sorry this is a long story...The flat right next door to my parent's is owned by a lady who bought it as an investment property... she has been letting it, but has had enough of dodgy tenants etc. and has just put it up for sale. It is currently vacant. My mum had got quite friendly with this lady (Marie) over the years, and has also really helped her out a few times over various things (keeping an eye on tenants, being a shoulder to cry on at times, etc).
By chance, Marie phoned Mum last night to ask after my dad. When she heard about my uncle's visit, she insisted that they stay in her vacant flat until it is sold. (It's a fully furnished flat, all I need to do is organise bedding and towels). AND to top it all, she is insisting that we do not give her any money. But mum and I do want to pay "rent" and we will sort something out. The other bonus is that it is a 2 bed flat (like mums) which means that I can stay there, too, when I'm over here. This is a massive help, as otherwise I'd have had to sleep on the sofa at my sisters. So, it's all worked out in the end.
My dad is very honoured - his brother hasn't set foot in the UK since he emigrated to South Africa 40 years ago!
Well after that long tale, I've forgotten everything else I planned to write!
Oh - forgot to say - my dad is coming home on Tuesday morning
I'm doing ok. Actually I was struggling a bit these last 2 days, but now that I'm home I've been able to get some things out of my system, if you know what I mean. I think I do hold back a bit around my family. But please don't worry about me cos I am not daft enough to bottle things in too much.
Comment added in May:
I was in a bit of a state when I got home on this Saturday. All morning I'd wanted to cry, walking round Tesco, and I couldn't wait to get home and blub. Roy was, as ever, marvellous. Although he did comment that it scares him to see me so much "not in control" of things. Because I usually am. I just felt physically sick with it today. So hopeless and unable to do anything for Dad. It was (and still is) an awful feeling, but I found over time that I got used to it... adapted I suppose.
Friday 9 March 2007
Friday 9th March
Hi... I am ok thank you.(((hugs back to you all)))
My niece has just made me laugh out loud... she was looking on the forum earlier today and asking who you all were (I think she was amused by the avatars). So I was going through the list saying "wowsmom from California, desmum from Stevenage, tweedle from Florida" etc etc. When I logged on just then she asked "Oh, are you talking to Wobble from North Island".
Now she is hanging over my shoulder reading this so I am logging off!
Email to Bex:
Thanks Bex. I'm gutted, but I am doing ok and holding it together.. I will be glad to have dad home and get him comfy. He can even come out for a drive with me if he feels up to it. I'm trying to focus him on what he wants to do while he is still relatively well.I do appreciate your thoughts... thanks.
Email to Ann:
A Macmillan Nurse (don't know if you're familiar with them - specialist cancer carers) has been to see Dad this morning and I think they deal with both practical and emotional elements. She then called me to discuss the practical side of things.I don't think the rest of us will need counselling as such, we're a close enough family and we also each have our outlets outside the family for support. But we will keep an eye on each other just to be sure!
My niece has just made me laugh out loud... she was looking on the forum earlier today and asking who you all were (I think she was amused by the avatars). So I was going through the list saying "wowsmom from California, desmum from Stevenage, tweedle from Florida" etc etc. When I logged on just then she asked "Oh, are you talking to Wobble from North Island".
Now she is hanging over my shoulder reading this so I am logging off!
Email to Bex:
Thanks Bex. I'm gutted, but I am doing ok and holding it together.. I will be glad to have dad home and get him comfy. He can even come out for a drive with me if he feels up to it. I'm trying to focus him on what he wants to do while he is still relatively well.I do appreciate your thoughts... thanks.
Email to Ann:
A Macmillan Nurse (don't know if you're familiar with them - specialist cancer carers) has been to see Dad this morning and I think they deal with both practical and emotional elements. She then called me to discuss the practical side of things.I don't think the rest of us will need counselling as such, we're a close enough family and we also each have our outlets outside the family for support. But we will keep an eye on each other just to be sure!
Thursday 8 March 2007
Thursday 8th March
Results are in and the Consultant looking after dad has asked to see mum and I at visiting this afternoon. So I am guessing it is not good news (they haven't spoken to my dad yet).
Email to Prevention friends:
Dear friends,We got bad news today. The biopsy confirmed that Dad does have cancer and that it has spread from his pancreas to his stomach area. They are not planning to offer any treatment. We have no firm timescale (but I think "months" is what we can expect). They are going to let Dad come home soon, which is what we want now.
We (mum, sister and I) were with Dad when he was told and he was amazing. We went back in to see him tonight and he is just so brave. I know he will have a big cycle of emotion to go through, though - so I'm not kidding myself he will always be like this. I thank you so much for all your support so far - it means more than you can know.
Comment added in May:
I think that being with my Dad while a Doctor told him he had inoperable cancer is the hardest thing I have ever done in my life so far. It was horrendous. The Staff Nurse looking after dad this day (I forget her name, a lovely Thai lady) had told me that the doctors would come and see us all during visiting. Lorraine, Mum and I went in (Lorraine had been in work but came home).
Anyway, we're all sitting with Dad (nervous as hell and pretending this is a normal day) when the Nurse called me out to say that the Doctors couldn't be there until after 5, so would we wait. I said yes. Dad had mentioned that a lady doctor had told him she "might come back later to talk about how we're going to progress with you". So I told him that they were coming back at 5, that his test results were probably in, and we'd wait. He tried to send us home but didn't really argue the toss when we insisted on staying.
So... just before 5 the Nurse beckoned me again. Dr Samid wanted to see me and mum.... Lorraine and I went in, and he seemed to be a while looking at Dad's results on the screen. Lorraine said she thought it was bad news and that Dr Samid was the "Bad News Doctor". I had to agree! He finally came through and basically told us that the test confirmed what he had already said to use in February. He was very nice and explained that he would refer Dad's notes to an oncologist but treatment was unlikely. He then said we should go and see Dad.
He sat on the bed next to Dad and held his hand. He explained that they had found cancer and that unfortunately it was inoperable. He was very, very compassionate in his delivery of this news. Dad's body visibly slumped and he asked Dr Samid "So is there nothing that you can do". "No sir, I'm afraid not." "Oh."
Mum was the other side of dad, and Lorraine in front of them. I was next to mum, standing. The Nurse was next to me, and a Junior Doctor completed the chain. At one point, we were all stroking and comforting the next person, which was comical really.
We all cried together (after the doctor left) and Dad said things like "I'm just one of millions - there are loads of other people going through this". Mum said, "Keith, to us you are one in a million". Lorraine and I promised Dad that we would look after him and mum through this.
Then, as if nothing had happened, Dad went back to his chair and started chatting about what was for tea. Oh - he did say that he had one target date - to wipe the smile of Alex Ferguson's face at the UEFA Cup Final on 23rd May!
We left Dad having his tea. Then, Lorraine and I went to see Neil and tell him the news. We went back to the hospital for evening visit. That was hard to do, but we both knew it was something we would have to get used to........... spending time with somebody who knows that they are dying.
Well, at least we knew, now. No more waking up feeling sick that today would be the day the results came back. It all happened so much easier than I had anticipated it would - but a lot of that was down to the incredibly brave and strong way my dad reacted to it and dealt with it.
Also, in this week, I had seen a press article online that Key Retirement Solutions (one of the firms I had been interviewed by) had appointed somebody as Head of Partnerships. Hmmm - thought that they were going to offer me that job!! I'd phoned Colin (the Managing Director) for an explanation but he rang just as we were setting off for the hospital appointment. I finally spoke to him a few weeks later and he gave some daft excuse about me living too far from Preston! Bottom line - they found someone cheaper and offered the job to them. It wasn't meant to be for me, obviously.
Email to Prevention friends:
Dear friends,We got bad news today. The biopsy confirmed that Dad does have cancer and that it has spread from his pancreas to his stomach area. They are not planning to offer any treatment. We have no firm timescale (but I think "months" is what we can expect). They are going to let Dad come home soon, which is what we want now.
We (mum, sister and I) were with Dad when he was told and he was amazing. We went back in to see him tonight and he is just so brave. I know he will have a big cycle of emotion to go through, though - so I'm not kidding myself he will always be like this. I thank you so much for all your support so far - it means more than you can know.
Comment added in May:
I think that being with my Dad while a Doctor told him he had inoperable cancer is the hardest thing I have ever done in my life so far. It was horrendous. The Staff Nurse looking after dad this day (I forget her name, a lovely Thai lady) had told me that the doctors would come and see us all during visiting. Lorraine, Mum and I went in (Lorraine had been in work but came home).
Anyway, we're all sitting with Dad (nervous as hell and pretending this is a normal day) when the Nurse called me out to say that the Doctors couldn't be there until after 5, so would we wait. I said yes. Dad had mentioned that a lady doctor had told him she "might come back later to talk about how we're going to progress with you". So I told him that they were coming back at 5, that his test results were probably in, and we'd wait. He tried to send us home but didn't really argue the toss when we insisted on staying.
So... just before 5 the Nurse beckoned me again. Dr Samid wanted to see me and mum.... Lorraine and I went in, and he seemed to be a while looking at Dad's results on the screen. Lorraine said she thought it was bad news and that Dr Samid was the "Bad News Doctor". I had to agree! He finally came through and basically told us that the test confirmed what he had already said to use in February. He was very nice and explained that he would refer Dad's notes to an oncologist but treatment was unlikely. He then said we should go and see Dad.
He sat on the bed next to Dad and held his hand. He explained that they had found cancer and that unfortunately it was inoperable. He was very, very compassionate in his delivery of this news. Dad's body visibly slumped and he asked Dr Samid "So is there nothing that you can do". "No sir, I'm afraid not." "Oh."
Mum was the other side of dad, and Lorraine in front of them. I was next to mum, standing. The Nurse was next to me, and a Junior Doctor completed the chain. At one point, we were all stroking and comforting the next person, which was comical really.
We all cried together (after the doctor left) and Dad said things like "I'm just one of millions - there are loads of other people going through this". Mum said, "Keith, to us you are one in a million". Lorraine and I promised Dad that we would look after him and mum through this.
Then, as if nothing had happened, Dad went back to his chair and started chatting about what was for tea. Oh - he did say that he had one target date - to wipe the smile of Alex Ferguson's face at the UEFA Cup Final on 23rd May!
We left Dad having his tea. Then, Lorraine and I went to see Neil and tell him the news. We went back to the hospital for evening visit. That was hard to do, but we both knew it was something we would have to get used to........... spending time with somebody who knows that they are dying.
Well, at least we knew, now. No more waking up feeling sick that today would be the day the results came back. It all happened so much easier than I had anticipated it would - but a lot of that was down to the incredibly brave and strong way my dad reacted to it and dealt with it.
Also, in this week, I had seen a press article online that Key Retirement Solutions (one of the firms I had been interviewed by) had appointed somebody as Head of Partnerships. Hmmm - thought that they were going to offer me that job!! I'd phoned Colin (the Managing Director) for an explanation but he rang just as we were setting off for the hospital appointment. I finally spoke to him a few weeks later and he gave some daft excuse about me living too far from Preston! Bottom line - they found someone cheaper and offered the job to them. It wasn't meant to be for me, obviously.
Wednesday 7 March 2007
Wednesday 7th March
We are looking after my niece this morning who is off school sick. Personally I don't think there is much wrong with her... but I'm no expert! I have to go and do some shopping soon, and then this afternoon we'll go to see dad.
I was at my sisters "babysitting" my niece for a couple of hours last night and we watched Big Momma's House 2.
Email to Trish:
No news... they told him it could be the end of the week or next week before the results are in so I've had a word with the nurses about pushing for them - nurses said the med team are chasing the results down every day. I also asked if they can do something to help stem the weight loss and build his strength up (he's now 15st and was 18 5!).
They are going to think about putting him on build up drinks and also said we can bring food in.
Actually he had already asked us about bringing food in a hot flask if he didn't fancy the proper menu. I was expecting him to be really p'd off yesterday after the news of the "delay" on results but he was pretty chipper. Oh - I think he was pleased cos they'd given him a new air mattress to help relieve his pressure sores. So for the first time in a while he wasn't sore on his backside. They also put some padding on it and it all seems to have helped.
I was at my sisters "babysitting" my niece for a couple of hours last night and we watched Big Momma's House 2.
Email to Trish:
No news... they told him it could be the end of the week or next week before the results are in so I've had a word with the nurses about pushing for them - nurses said the med team are chasing the results down every day. I also asked if they can do something to help stem the weight loss and build his strength up (he's now 15st and was 18 5!).
They are going to think about putting him on build up drinks and also said we can bring food in.
Actually he had already asked us about bringing food in a hot flask if he didn't fancy the proper menu. I was expecting him to be really p'd off yesterday after the news of the "delay" on results but he was pretty chipper. Oh - I think he was pleased cos they'd given him a new air mattress to help relieve his pressure sores. So for the first time in a while he wasn't sore on his backside. They also put some padding on it and it all seems to have helped.
Tuesday 6 March 2007
Tuesday 6th March
No news here. Hoping that some results come through today (well part of me doesn't want them to, but you know........)
My niece is off sick today (I got out of chauffeur duties this morning!). She had a bit of an asthma attack last night (her own fault for not taking meds properly - something else for me to nag her about) and so my sister has kept her off today and is working from home. I just called round for a coffee.
The nurse looking after my dad said this morning that results won't be back until late this week or early next week. I am fuming... why did they tell him today??? Anyway, I'll ask to see one of the docs in his medical team when I go in for visiting at 3 today. I want them to at least start to do something about his weakness... try giving him food supplements or something? I think psychologically, my dad needs to feel that he is moving forward in some sense.
The reason the test results are taking so long is because "they are busy". I.e. they are sitting in a backlog of other lab tests. I spoke to his nurse who says that the med team are pushing for faster results. Also that they will raise my concerns with the docs re. his eating/weakness.
He's lost 50lbs in 4 and a half weeks.
All that said, he was in good spirits today and is bearing up well. He's the most patient man I know.
My niece is off sick today (I got out of chauffeur duties this morning!). She had a bit of an asthma attack last night (her own fault for not taking meds properly - something else for me to nag her about) and so my sister has kept her off today and is working from home. I just called round for a coffee.
The nurse looking after my dad said this morning that results won't be back until late this week or early next week. I am fuming... why did they tell him today??? Anyway, I'll ask to see one of the docs in his medical team when I go in for visiting at 3 today. I want them to at least start to do something about his weakness... try giving him food supplements or something? I think psychologically, my dad needs to feel that he is moving forward in some sense.
The reason the test results are taking so long is because "they are busy". I.e. they are sitting in a backlog of other lab tests. I spoke to his nurse who says that the med team are pushing for faster results. Also that they will raise my concerns with the docs re. his eating/weakness.
He's lost 50lbs in 4 and a half weeks.
All that said, he was in good spirits today and is bearing up well. He's the most patient man I know.
Monday 5 March 2007
Monday 5th March
I'm driving back to mums later on today. My sister is on duty today and I'll go in for the night time visit later.
No results yet on my dad's test. The medical team are "chasing" for them today.
Poor dad was a bit down at the weekend, feeling very weak and lethargic. Mind you, he isn't eating or sleeping well, so I guess that is to be expected.
No results yet on my dad's test. The medical team are "chasing" for them today.
Poor dad was a bit down at the weekend, feeling very weak and lethargic. Mind you, he isn't eating or sleeping well, so I guess that is to be expected.
Sunday 4 March 2007
Sunday 4th March
Whilst I have my niece as a captive audience in the car every morning, I'm making the most of it. If I tried to talk to her at home she'd just wander off or start texting her friends or something. Youngsters today!
No news here, really. I thought that I should pay a visit to my gym today - seeing as I haven't been in 4 weeks. No excuses.
No news here, really. I thought that I should pay a visit to my gym today - seeing as I haven't been in 4 weeks. No excuses.
Saturday 3 March 2007
Saturday 3rd March
Oooh my laptock screen and the writing looks tiny now compared to my mum's PC Monitor! My eyes are SO bad...
My garden leave was so timely! And to think I was getting bored... what's that saying: Be careful what you wish for?
After the bullying episodes, my niece was doing ok at school. Here's the ridiculous thing about it - she is now best friends with one of the "bullies" (the worst one, apparently). My sister is not at all happy. This girl is 12, from a broken home, has an eating disorder and talks constantly about boys. My niece (who has always been a really good eater... would eat anything, including her veggies) has now started to say things like "I'm just not hungry" and "I feel so bloated after eating". I'm really concerned. I've been taking her to school from Tues-Friday to help my sis out, and I am trying to have sensible conversations with her about eating and nutrition. Apparently she complained to her mum about me on Friday night "All Auntie Jan does is go on about nutrition". I told my sister to tell her that I'm an expert (!) and that I've done courses on it and I really know what I'm talking about. That may give me some credibility. Well - I did do a one day course at Leeds Uni in 1998, AND I think reading 450 diet books also counts, LOL.
I am trying to focus on health issues - not weight (my niece is a bit overweight). She is eating way too much sugar, and never used to have a very sweet tooth. Anyhoo - that is a garbled explanation of what is going on. I also think there is an attention seeking element. Emily has always been a mummy's girl and my sister is spending a lot of time running around to see my dad in hospital, or seeing my mum etc. So Emily doesn't have her at her beck and call all of a sudden. Plus, I think we need to be mindful that Emily will be feeling upset and anxious about what is happening to my dad. Difficult time...
I am trying to help out but not an expert on kids.
Well I am just popping out to give my FIL and his brother a lift home. They've been visiting somebody in a nursing home near to our house so I said I'd run them back. Will check in later or tomorrow.
My dad was very chipper yesterday - his old friends came to visit in the afternoon, and my uncle and cousins went last night. I really think a change of face bucks him up - he must get bored of seeing me, mum, sis and brother!!!
Email to Trish:
Things ok. My dad is doing ok (has now lost 2 and a half stone) and is chirpy. Mind you he's had "new" visitors the last few days - his mates from the old days, his step-dad/sister and Joan, Zodie and Wally. I think he must get fed up looking at me, Mum, Lorraine and Neil!
Results from biopsy due back Mon/Tues. The procedure itself was quick and straightforward - my dad said it was "smashing"!!!
My garden leave was so timely! And to think I was getting bored... what's that saying: Be careful what you wish for?
After the bullying episodes, my niece was doing ok at school. Here's the ridiculous thing about it - she is now best friends with one of the "bullies" (the worst one, apparently). My sister is not at all happy. This girl is 12, from a broken home, has an eating disorder and talks constantly about boys. My niece (who has always been a really good eater... would eat anything, including her veggies) has now started to say things like "I'm just not hungry" and "I feel so bloated after eating". I'm really concerned. I've been taking her to school from Tues-Friday to help my sis out, and I am trying to have sensible conversations with her about eating and nutrition. Apparently she complained to her mum about me on Friday night "All Auntie Jan does is go on about nutrition". I told my sister to tell her that I'm an expert (!) and that I've done courses on it and I really know what I'm talking about. That may give me some credibility. Well - I did do a one day course at Leeds Uni in 1998, AND I think reading 450 diet books also counts, LOL.
I am trying to focus on health issues - not weight (my niece is a bit overweight). She is eating way too much sugar, and never used to have a very sweet tooth. Anyhoo - that is a garbled explanation of what is going on. I also think there is an attention seeking element. Emily has always been a mummy's girl and my sister is spending a lot of time running around to see my dad in hospital, or seeing my mum etc. So Emily doesn't have her at her beck and call all of a sudden. Plus, I think we need to be mindful that Emily will be feeling upset and anxious about what is happening to my dad. Difficult time...
I am trying to help out but not an expert on kids.
Well I am just popping out to give my FIL and his brother a lift home. They've been visiting somebody in a nursing home near to our house so I said I'd run them back. Will check in later or tomorrow.
My dad was very chipper yesterday - his old friends came to visit in the afternoon, and my uncle and cousins went last night. I really think a change of face bucks him up - he must get bored of seeing me, mum, sis and brother!!!
Email to Trish:
Things ok. My dad is doing ok (has now lost 2 and a half stone) and is chirpy. Mind you he's had "new" visitors the last few days - his mates from the old days, his step-dad/sister and Joan, Zodie and Wally. I think he must get fed up looking at me, Mum, Lorraine and Neil!
Results from biopsy due back Mon/Tues. The procedure itself was quick and straightforward - my dad said it was "smashing"!!!
Friday 2 March 2007
Friday 2nd March
Will check in later, but I have a busy day - going out shopping with mum, picking up my dad's friends who want to visit him, and then to the hospital. Then I'll be driving home for the weekend.
Comment added in May:
George and Philly came to see Dad this day (Richie wasn't able to) and it was lovely to see him respond so well to different company. He did talk a little about the possibilities of his results, but seemed resigned to more "waiting and seeing".
He didn't sleep well at all in the hospital and point blank refused to have the Patient TV service. In fact, that became a real standing joke - Lorraine and I being determined that he watch tv, Dad being determined not to. Guess who won - that's right, Dad did, of course. :-)
He spoke sometimes about the waiting game and how he just watched the clock waiting for another test, or visit from the doctor. I think he was having to dig deeper than we realised at the time to cope with what was going on in there (mentally as well as physically).
Comment added in May:
George and Philly came to see Dad this day (Richie wasn't able to) and it was lovely to see him respond so well to different company. He did talk a little about the possibilities of his results, but seemed resigned to more "waiting and seeing".
He didn't sleep well at all in the hospital and point blank refused to have the Patient TV service. In fact, that became a real standing joke - Lorraine and I being determined that he watch tv, Dad being determined not to. Guess who won - that's right, Dad did, of course. :-)
He spoke sometimes about the waiting game and how he just watched the clock waiting for another test, or visit from the doctor. I think he was having to dig deeper than we realised at the time to cope with what was going on in there (mentally as well as physically).
Thursday 1 March 2007
Thursday 1st March
Shame faced Brit here (fancy me forgetting St David's Day!!)
YAY- the shower is fixed! Mum and I no longer have to go to my sisters to get clean!
I've just eaten half a big bag of Maltesers. It was my mum's fault of course - she bought them today and I just had a "need chocolate" moment after my lovely long hot shower.........
I'm going to bed early tonight. I have to be up each morning to take my niece to school. One thing I have enjoyed this past few weeks is being so close to all my family. It's been lovely to see them so often and is making me a bit "homesick" for being able to pop in and have a coffee/chat with mum, sis, etc. Must persuade Roy that we should live in the North West of England.
Email to Trish:
Hi - hope all is well and Tayla is recovering?I had an appointment with the Consultant who is heading up my dad's medical team on Tuesday (Mr Tighe). I explained to him what we were told 3 weeks ago, that they were certain that they were dealing with a tumour on his pancreas which had spread into the stomach lining. Tighe told me that at this stage, all dad's tests have been inconclusive and they still don't know if they are dealing with a tumour or inflammation (pancreatitis). He said my dad is "well" (clinically - all his liver/blood tests are good) and that he is baffling them. So, what they will do is a CT Guided biopsy (on Friday this week). It is unlikely that they will take tissue samples from the pancreas (I think that is tricky/risky) but they have seen some tissue in the stomach lining (omentum) and they will go in and take some of that. If they find malignant cells, it will "prove" that he has cancer which is spreading. If they don't find any cells, it is likely that they are dealing with inflammation and he may be referred on to the pancreas specialist in Liverpool.
If they do find cells, basically that will indicate a secondary cancer and they won't refer him to Liverpool as it will be too late. So - from a very negative outlook a few weeks ago, it could now go either way. Although Tighe was keen to point out that pancreatitis can be life threatening when it gets this bad. Apparently my dad's weight loss and weakness could be symptomatic of either inflammation or tumour and he also explained that the results of some of the other tests they'd done (echocardiogram etc) were ok. I asked him if it was unusual for my dad to have no pain (either for tumour or pancreatitis) and he said that it was, but maybe he had a high pain threshold or something. That's something else which is strange. Basically my dad has some symptoms of both conditions, but not a full set!!
So, all very puzzling. I know I shouldn't get my hopes up - but I guess if we don't have any hope, we are just giving in.....I did tell Tighe that we were told in no uncertain terms that my dad was terminally ill, and he said that the radiologists were convinced that it was a tumour they saw on the first scan.... however, subsequent tests for jaundice were clear and that is what made them reconsider and do further tests. I think the one thing worrying me is that there IS something in my dad's tummy area (which they have also seen on the scan) and that cannot be as easily explained away.
Tighe was totally neutral on what he thinks the outcome will be - he genuinely does not know. He said "I do hope this is benign, but we will have to do the biopsy and then we'll chat again". He also told me that my dad understands all of this too. He knows it can go either way.
In himself my dad is doing ok... they had him walking (only about 20 feet!) yesterday as his feet are really swollen. Tighe said this is due to immobility, not eating properly, and the fluid they drained from his stomach (there is a technical reason for this to do with protein!). He said the physios will try to build him back up a bit.... and they are also threatening to put him on those drinks to provide more calories... for some reason my dad is going mad about that and trying to eat more so they don't make him drink the drinks!!! Stubborn old git.
He still has his humour and was actually shouting a bit yesterday (getting animated over something we were talking about) so that was good to hear! He said if they could get him 5 hours sleep a night he'd feel "smashing". So keep it all crossed, Trish! I'll speak to you over the weekend. Am going back home Friday night after afternoon visit.
Second email to Trish:
Yes they are doing the scan at 2pm tomorrow... but they'll have to send tissue samples off and I guess it will be early next week before results are back. He was a bit down today... he must be worried sick. Anyway, we should know more next week.
Email to Lorraine:
I know I shouldn't get my hopes up too much.... but further "net" research tells me that you can have chronic pancreatitis without pain.I should stop looking, shouldn't I!!!
Comment added in May:
Of course, I did get my hopes up. I hoped fervently that they'd made a mistake with the first scan, and that really Dad just had inflammation. I hoped that the biopsy would prove negative and it would all be over (well, bar treatment for pancreatitis). I searched and searched the net for hours to find information to prove my hopes were right.
YAY- the shower is fixed! Mum and I no longer have to go to my sisters to get clean!
I've just eaten half a big bag of Maltesers. It was my mum's fault of course - she bought them today and I just had a "need chocolate" moment after my lovely long hot shower.........
I'm going to bed early tonight. I have to be up each morning to take my niece to school. One thing I have enjoyed this past few weeks is being so close to all my family. It's been lovely to see them so often and is making me a bit "homesick" for being able to pop in and have a coffee/chat with mum, sis, etc. Must persuade Roy that we should live in the North West of England.
Email to Trish:
Hi - hope all is well and Tayla is recovering?I had an appointment with the Consultant who is heading up my dad's medical team on Tuesday (Mr Tighe). I explained to him what we were told 3 weeks ago, that they were certain that they were dealing with a tumour on his pancreas which had spread into the stomach lining. Tighe told me that at this stage, all dad's tests have been inconclusive and they still don't know if they are dealing with a tumour or inflammation (pancreatitis). He said my dad is "well" (clinically - all his liver/blood tests are good) and that he is baffling them. So, what they will do is a CT Guided biopsy (on Friday this week). It is unlikely that they will take tissue samples from the pancreas (I think that is tricky/risky) but they have seen some tissue in the stomach lining (omentum) and they will go in and take some of that. If they find malignant cells, it will "prove" that he has cancer which is spreading. If they don't find any cells, it is likely that they are dealing with inflammation and he may be referred on to the pancreas specialist in Liverpool.
If they do find cells, basically that will indicate a secondary cancer and they won't refer him to Liverpool as it will be too late. So - from a very negative outlook a few weeks ago, it could now go either way. Although Tighe was keen to point out that pancreatitis can be life threatening when it gets this bad. Apparently my dad's weight loss and weakness could be symptomatic of either inflammation or tumour and he also explained that the results of some of the other tests they'd done (echocardiogram etc) were ok. I asked him if it was unusual for my dad to have no pain (either for tumour or pancreatitis) and he said that it was, but maybe he had a high pain threshold or something. That's something else which is strange. Basically my dad has some symptoms of both conditions, but not a full set!!
So, all very puzzling. I know I shouldn't get my hopes up - but I guess if we don't have any hope, we are just giving in.....I did tell Tighe that we were told in no uncertain terms that my dad was terminally ill, and he said that the radiologists were convinced that it was a tumour they saw on the first scan.... however, subsequent tests for jaundice were clear and that is what made them reconsider and do further tests. I think the one thing worrying me is that there IS something in my dad's tummy area (which they have also seen on the scan) and that cannot be as easily explained away.
Tighe was totally neutral on what he thinks the outcome will be - he genuinely does not know. He said "I do hope this is benign, but we will have to do the biopsy and then we'll chat again". He also told me that my dad understands all of this too. He knows it can go either way.
In himself my dad is doing ok... they had him walking (only about 20 feet!) yesterday as his feet are really swollen. Tighe said this is due to immobility, not eating properly, and the fluid they drained from his stomach (there is a technical reason for this to do with protein!). He said the physios will try to build him back up a bit.... and they are also threatening to put him on those drinks to provide more calories... for some reason my dad is going mad about that and trying to eat more so they don't make him drink the drinks!!! Stubborn old git.
He still has his humour and was actually shouting a bit yesterday (getting animated over something we were talking about) so that was good to hear! He said if they could get him 5 hours sleep a night he'd feel "smashing". So keep it all crossed, Trish! I'll speak to you over the weekend. Am going back home Friday night after afternoon visit.
Second email to Trish:
Yes they are doing the scan at 2pm tomorrow... but they'll have to send tissue samples off and I guess it will be early next week before results are back. He was a bit down today... he must be worried sick. Anyway, we should know more next week.
Email to Lorraine:
I know I shouldn't get my hopes up too much.... but further "net" research tells me that you can have chronic pancreatitis without pain.I should stop looking, shouldn't I!!!
Comment added in May:
Of course, I did get my hopes up. I hoped fervently that they'd made a mistake with the first scan, and that really Dad just had inflammation. I hoped that the biopsy would prove negative and it would all be over (well, bar treatment for pancreatitis). I searched and searched the net for hours to find information to prove my hopes were right.
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