On the Pathway

I woke early and went in to see how Mum and Dad were doing. Dad had slept until 6am and had been able to swallow his tablets ok. But when I told him he'd be having them by Syringe Driver soon he was delighted.

He asked where Lorraine was. "Where's Lollipop?" I said she'd be dropping Emily off at school and then coming to us. "It's a pity we can't hear her more clearly when she comes in" he said, "Cos we could all shout 'hurray!' as she comes through the door otherwise".

Len (mum's cousin) came to see us with some brilliant old family photographs that he'd loaded onto CD for us. Dad isn't on any of them, but they're good pictures of mum's side of the family.

Maureen (Lorraine's mother-in-law) also dropped in to see Dad. He always liked to see her... he asked her to give him a kiss when she walked in. She was telling him about her trip to America and Canada on a cruise. She said that when they visited Niagra Falls, they'd seen a beautiful rainbow in the mist. Dad looked at mum and said "That must have been nice." As she left, Maureen said to him that she hoped he'd be looking down on rainbows soon. She was very upset afterward and told Lorraine that she didn't think Dad had too long left... she'd nursed for 40 years and so must know these things.

Gail, one of the District Nurses, arrived at the same time as the carers and they got Dad sorted out pretty quickly. He didn't want a lot doing. Gail came to speak to us and advised us that she was going to put Dad on to the Dying Pathway programme. This is a UK care plan for those in their last days and was devised in a hospital in Liverpool. The basic premise of this plan is to make dying patient's comfortable. It takes them off all non-essential meds (e.g. my Dad no longer uses his diuretics or inhalers) and puts them onto anticipatory drugs to relieve any symptoms that may cause discomfort (e.g. something to dry up secretions in the throat and chest and stop coughing). It also enables the nurses to have a very open conversation with the carers and family members about what is happening. And finally, this plan takes into account psychological and spiritual needs. Gail said she felt that if Dad had a week left in him, we'd be lucky.

It's funny because although we've had 5 months to prepare for this, it's still a shock and quite upsetting when you start to talk about Dad's time in terms of "days". I think a lot of the emotion is due to having been through so much with him these last months and staying so positive for him... whilst knowing that really all we were doing was keeping him comfy. We could never make Dad better. And whilst I don't feel any resentment of that (toward the disease) I think it is a tough mental battle for all involved. Talk about learning life skills!

Gail explained that the syringe driver would be started that afternoon. She just needed Dad's GP to sign off the plan paperwork. Dr Rathbone prescribed the anticipatory drugs needed for the driver: an anti nausea/vomiting drug; anti-secretion drug; sedative; pain relief. Lorraine and I took what I think is our last trip to Cooke's chemist.

Neil (our brother) came along today and sat doing the jigsaw for ages. He made huge progress with it... which is just as well cos Lorraine and I were starting to struggle. Finishing the jigsaw was Neil's contribution to Dad's last days as he doesn't really do any of the care/nursy type stuff. As he was leaving (late afternoon) Dad called him back in to the room and signalled him to wait a moment (talking was becoming a huge effort by now). "How's the big Jigsaw going?" He asked. Neil described where things were up to. Dad seemed content. We'd brought it in to show him at certain points in the day.

Last night, Dad had been asking for maps from his car. It turned out he wanted to see Queensbury Gardens and Marlborough Grove in Birkenhead - two places he'd lived in as a child and young man (with his mother). We couldn't find a Liverpool A-Z but we'd printed a multimap page off the internet with both a map and an aerial view of the actual road for Marlborough Grove. Couldn't find Queensbury Gardens (this is where Dad was born). Dad seemed satisfied with this. Today he'd said he wanted to show the doctor the picture of the house and kept talking about "up above". Mum recalls that he lived in an attic room and maybe he was talking about that. He was clearly thinking about his family at these times.

Gail came late afternoon to do the driver. I said to Dad that his injection was here and as she put it in he said "lovely, thanks". As she left his room Gail said goodbye, sleep well, and that she'd seem him soon. She shouted at him "And when I do, don't be giving me any al buck" (Al buck being scouse for back chat). Dad smiled and said he was looking forward to seeing her.

Before she left, Gail came in to speak to us. She told us that she didn't think Dad would last the night. This was a shock as earlier we'd been under the impression he had a few more days left. Gail has worked in Marie Curie Hospice and so I trusted her opinion. She said that she could be wrong, but that she'd be surprised if he was still with us when she was back on duty on Thursday. Ok, so that's two nights then! Which one will it be?

As we wandered in and out of his room, Dad started to sleep more and more and respond less to us. At one point he asked me to confirm that Lorraine and I were not twins! I said no, and he shook his head and said he should have known by our ages. He also told Lorraine that I tell fibs! But I think he was talking about the jigsaw... as I'd been saying how well it was coming along.

The jigsaw is becoming symbolic, I feel. We speak of it so often with Dad and I think what we're all saying is that when the jigsaw is done, that is time for Dad to go.

I feel that my recollection of today is all over place, chronologically speaking, but I'm working retrospectively, from notes I jotted in my book at the time. Please forgive any errors. Oh - and a thousand apologies for the awful punctuation (I know I have friends who may notice this!!!).

Late on tonight we started to use swabs to give Dad water. Gail had advised us to wrap some gauze around a small child's toothbrush and dip it in water. Mostly Dad would just open his mouth and we'd dab around, but tonight he gripped the gauze and sucked the water off. So I gave him a drop more. He relaxed back and said "Lovely".

At some point tonight I was alone with Dad and sat sobbing by his bed while he slept... I tried not to be too noisy as I didn't want him to hear my pain.

Mum had been in and sung to Dad - How do you talk to an Angel. This was one of the few songs my Dad ever sang as he didn't have a great voice and could never remember past the first line! Funny that, considering how much he loved music. In fact, last year, he listened to every single one of his CDs over a period of a few weeks. When Lorraine asked him why, he just said: No reason, I just did. I wonder if he knew..........?
Anyway, Mum said he smiled and nodded as she sang, and when she finished she told him "I'm not as good as you". He smiled again.

When a patient is put on the Pathway, District Nurses call at night to check on them. Ours came quite early to see Dad, about 8-ish. They were happy with Dad's condition but he'd slumped down to the right and they tried to lift his head back to make him more streamlined. As soon as they touched him he started to "cry" and whimper. So they let go. Dad is clearly beyond the stage of being messed around with.

Neil came back to do more jigsaw! Yay! As he left we told Dad he was going and Dad nodded. So he still hears us and can communicate to some extent.

Tonight was Lorraine's turn for vigil, so I went to bed at midnight. I slept until 3 and looked in on them... everything was ok. At 3.30am Dad started coughing and so I got up and sat with Lorraine. We just chatted and drank coffee all night. Dad didn't rouse if we spoke to him. He was doing what they call "Cheyne Stoke" breathing. This pattern involves taking a breath and then a long pause before the next. It is difficult to watch when you are expecting somebody to die as you don't know which breath is the last! However, we discovered that we could see Dad's heartbeat under his vest and napkin. We tried to take his heart rate but we ended up just concluding that it was "very fast". So the heartbeat reassured us during pauses in breathing.

I have to explain at this point that Dad spent his last few months wearing very little! Sometime in about mid-March he dispensed with wearing his tops as he felt too warm and uncomfy in them (we had a very warm spring). Not long after that, the Nurses recommended that we stop putting his shorts on him as they were starting to irritate his skin around the waistband and could result in pressure sores. So he spent his time in a white cotton vest and a "modesty pad" loincloth that we devised from a white cotton pad. He resembled a cross between Mahatma Ghandi and Onslow from Keeping Up Appearances!! To accesssorize this outfit, Dad wore a green square table napkin across his chest and under his chin. This started out being there just at mealtimes, to catch any spills, but gradually became a permanent presence. Sort of like Dad's little comfort blanket... he wouldn't let us move it. I went to take it off in his last day and then put it back quickly.

Mum came in at 6am and said good morning. Dad was "asleep" but I told him mum was here and he opened his eyes and mouthed "Morning". This was the last Dad spoke.

At first I was afraid........

It wasn't just ghosts I was scared of. My real fear was of a conversation I knew I had to have with Dad. There were two parts to this. I have been wanting to say a few things to Dad for a while now - just to let him know how much he means to me. I got upset at the weekend because I told Roy I just bottled out every time an opportunity came up. Why am I scared of this? Possibly because whenever I think of the words, I break down, and I don't want to crumple in front of Dad. When I told Roy what I wanted to say to Dad he just looked at me and said "He knows".

The second part of the conversation is that I need to let Dad know that it is ok for him to leave us. Giving permission to let go can be a very important part of the dying process, and we have to do it. My fears about this one are the same as above - a dread of it becoming a very distressing conversation for both Dad and I - and then I undo all the positivity we have worked so hard to build over the last five months. More on this later.

So - back to last night - my "vigil" with Dad. Earlier in the evening Mum had sat in with Dad. There was such a cute moment when I looked in on them both. Mum was in her recliner chair, next to Dad's bed... they were both fast asleep. Mum holding a book in one hand and Dad's hand in the other, and Dad holding his remote control in one hand and Mum's hand in the other. One of those lovely scenes where in normal circumstances I'd have sneaked a photograph of them. Never mind, I will hold it in my memory.

I took over in the recliner chair when Mum went to bed. I wasn't very settled but dozed for short periods between midnight and 3.30am. Dad woke at 3.30am and wanted his mouth doing... we use a saliva replacement gel, Bonjela for his ulcers, and Vaseline for his lips to try to keep him comfortable. Did that and thought we would both now go back to sleep. Not so lucky! Dad wanted his tablets. "And this time, I'm taking them MY way!". This was a reference to his constant battles with mum over the timing, spacing and method of taking his meds! I explained that it was too early yet, and he should go back to sleep for a while.

But he didn't. Intermittently - between 3.30am and 7am (when I did allow him his meds) Dad talked a lot. He was clearly not settled. Thing is, if he'd been talking normally I'd have happily conversed with him all night, but he was in a period of "confusion" where he was talking nonsense, really. Telling me about how comedians develop a "flow", asking constantly about his tablets, asking about scaffolding for when we started the building work, many references to the jigsaw, talking as if he were a judge in a courtroom. At one stage, I felt like a mum who's baby won't go to sleep. Another time he asked for more pillows under his feet. I almost snapped! "Dad - you can't have one, there isn't a single pillow left in this house". So we used a towel instead! Mentally I was pleading "go to sleep dad, please!!". But he didn't.

So, we woke up properly and sorted the meds out. I noticed that his catheter tube had split and was leaking so I changed the Night Bag and cleaned everything up (some had gone onto the carpet). Mum then got up and the daily routine began again.

When the carers came, they were visibly shocked at how Dad seemed to be deteriorating, and we asked for them to do just the bare essentials in terms of cleaning Dad. Dad himself was keen not to be moved and messed about. He kept saying "I'll have a good wash on Wednesday".

When Dr Rathbone visited, Dad was asleep. As we stood by his bed I explained that Dad had seemed very agitated in the night - not physically, but I felt that his inability to settle, and the constant talking, was a sign. She said to Dad that something was wrong and she wanted to talk to him about what it was. He woke up and said "Oh hello Dr.... who are those people behind me?". Of course we could see nobody.

A long chat followed between Doctor, Dad and us. He was explaining that he couldn't bear to be rolled around the bed anymore and so we devised a way of reducing the number of times he was manhandled by carers and Nurses. Doctor also explained that she would soon arrange for Dad's meds to be given by Syringe Driver under his skin - no more swallowing. Dad liked that idea. "That'll be great." I don't think we realised quite how big a deal it has been for Dad to take his tablets every day. As Dr Rathbone ended her visit with Dad, he told her "Doctor, I am blessed with you - for looking after me. Thank you for all you have done for me." She looked touched by this.

Mum, Lorraine and I went through to the lounge with Dr K and she told us that she thought we were nearing the end of Dad's life. I asked how long. Days or weeks? Not sure, she said, but probably days. Despite knowing this anyway, it was still a moment of shock and reality kicking in. She prescribed Lorezepam to help settle Dad and told us to give it at night and again in the morning if we felt it necessary. Doctor also talked to us about giving Dad permission to die. So now I have been officially ordered by his Doctor to have that conversation. Better get a grip and get on with it.

Dad slept all afternoon. We had already decided not to leave him alone so the three of us drifted in and out of his room - sometimes just one of us in there, sometimes two, and occasionally all three of us.

At some point, and I forget the exact time, but it was teatime(ish), Lorraine had popped home and mum was eating. Dad woke up coughing... I think I've mentioned his "musical coughs" - he would put a silly tune at the end of them. As he stopped he looked at me and said "I must get that tuned up". I laughed and thought: great, Dad is coherent again.

He asked for a coffee (I can't tell you how good it was to see him enjoying coffee again - he used to drink gallons of it and then went right off it when he got out of hospital) and I was giving it to him as he was now using a toddler's drinking cup. I was rushing a bit, mainly because I expected him to say he'd had enough... he didn't often finish food or drink. Anyway, he drank the lot and I sat back down. He said to me "you were just rushing to get back to that jigsaw". I denied it... "Why would I want to do the jigsaw when I can sit here and talk to you". He smiled and closed his eyes. I was sort of staring into space and had my chin in my hand resting on the bed rails when I felt something. I looked back at Dad and he had held his hand out to me, as a father would to a child, and had this "come on, I know you're fed up - let me comfort you" look on his face. I took his hand and he closed his eyes again.

I knew Dad wasn't really sleeping so I thought I'd seize the moment. "I love you very much Dad" I said. "I know that" came the answer. "Every day, I am thankful for all you have given me" I added. "Always will be". I was struggling now to hold back tears. After a short silence, Dad asked me "Are you frightened?" "Of what?" I asked.... even though I knew. "Me going". "No, not at all" I lied. Dad replied: "Good." I asked "Are you?" "No. You see, for me it will just be like going to sleep." "Yes it will Dad", I agreed. "And I know that very soon you are going to want to go to sleep - and you must do that when you want to. Please don't worry about us - we'll miss you loads, but we'll be okay. All of us. And Mum. Whenever you're ready... just go." "I'm leaving.... two beautiful daughters, a good son and a wonderful wife" Dad said, with the emphasis on the words beautiful, good and wonderful. Then he added "And a mountain of debt". Huh? Mum and Dad don't have any debt!! I corrected him: "Love. A mountain of love. No debt". He laughed and said, oh that as well. By this time I had tears streaming down my face. Dad closed his eyes and I wondered what the heck I'd been afraid of having this conversation.

Later on, I was in Mum's bedroom doing something and I heard Lorraine back and in Dad's room. She was sobbing and trying to tell him something - and Mum had to step in and interpret as Dad couldn't understand her properly. Lorraine - you'll have to tell me this conversation properly so that I can add it in... I don't remember the detail.

Later, Dad asked to see the jigsaw again and cheekily told Mum how well he was doing with it. I can't believe how his humour stayed with him right to the very end. I'd been telling Dad how, every time we put a piece in the jigsaw, Lorraine and I shouted "Yay". A little while later, he was struggling to get the lid on to his sputum pot (or spectum, as he'd now started calling it). When he managed, he looked at me and shouted "Hurray". Cute, dad!

Dad had told mum today that if people rang to ask after him, they were to be told that he was slowly passing away.

He also was asking Lorraine for details of the weather. It wasn't very nice and when she told him, he looked disappointed... "Oh, I'm not getting warm weather for going, then" he said.

Later on this evening, he told Lorraine that we should try to finish the jigsaw tonight. Of course, that signalled to us that he felt he was about to pass and so the two of us sat up until almost 1am trying to finish the thing! We had no chance... it wasn't even halfway done.

Mum had decided that she would sit vigil with Dad this evening. Lorraine went home leaving strict instructions to be contacted if we thought anything was going to happen, and I hit my mattress on the floor.

Roy was right - my dad did know how much I love him.

Scared of Ghosts...

Mum slept in Dad's room overnight. In the middle of the night, he said to her that she'd be sleeping in her own bed tomorrow night. She asked why and he said, I just think you will. So of course this has got us worried now. Lorraine came over and stayed with mum last night, too.

He also kept asking for the machine and when Lorraine told him there wasn't a machine he just threw his hands up in frustration.

I decided to come back to mums today and not tomorrow as planned. It is becoming painfully clear that Dad is on the final part of his journey and so we have decided to make sure that one of us in with him at all times. Mum has just given me an hour off to "talk to my cyber friends". Bless her. She looks exhausted.

I was pretty upset this morning before leaving home. Roy was wanting to drive me across but I knew I'd be ok in the car. I think I was trying to get it out of my system before I got here. I always feel better when I am here, though. I'm helping on a practical level and that a) distracts me and b) gives me a sense of purpose in this horrible thing we are dealing with.

It's Lorraine and Paul's 19th Wedding Anniversary today. Lorraine was upset before remembering Dad holding her hand before they went up the aisle. Now she's holding his hand for him. We both had a little cry together about it.

On the funny side, we started Dad's jigsaw for him... his friend brought over the board for us to make it on. It's huge! 70cm x 60cm. Dad, in between dozing, bossed us around and kept telling us how to do it. Lorraine got such a fit of giggles in the end as he kept waking up and saying "find a piece that fits and work in from the edge". Then when Mum came in he said he was exhausted from advising us!

He asked to see our work after about two hours and we were ashamed to admit there wasn't too much too see!! All the edges are done and a few other bits. Emily came and helped a lot too, later on this afternoon. He said we'd done well, but I think he was just humouring us.

Dad also ate some jelly this afternoon and drank some soup this evening. This is the first he's had for a few days. He is still coming out with random things that don't make sense. But that is part and parcel of the metabolic (chemical) change in his body.

Dad was insisting that we trim his eyelashes this afternoon. I refused - saying that bits of hair might go in his eyes and make them sore. He sulked a bit and then said "I'm staying here (pointing at his bed) until these eyelashes have been trimmed". We laughed and said well you'll have to stay there, then, cos we're not cutting them. His eyes have gone very "sticky" so we have to wipe them several times a day with warm water to keep them clear. Maybe he's thinking that if cut the eyelashes then it will help.

Oh - the mystery of the leaping mice has been solved... it isn't mice at all, but a wasps' nest in the eaves of the Dorma. We had the same thing a couple of summers ago on the opposite side. So I've contacted Pest Control to come and deal with it.

Well, I'm just about to head in and start my night-shift sitting with Dad and mum has frightened the life out of me!! She told me that in the early hours of this morning, Dad was looking into the corner of the room and laughing & said "Oh go 'way with you" or something like that. She asked what he said and he said, "oh nothing". She says he was talking to somebody else in the room. But that it wasn't scary. Not to her, perhaps, but me..... I'm a big scaredy-cat!!!!

We've been struggling to find a third song for Dad's funeral service - he wants "I'll Walk with God" (Mario Lanza) and Mum has chosen "I'll be Seeing You (Michael Buble). Last night, coming home from our meal, I heard Paul McCartney song on the radio, from his new album. The tune is quite simple, and I thought the words were appropriate. Touching, but simple. Mum agrees so I think we may have this one (the whistling section is a bit naff!):

At the end of the end
It's the start of a journey
To a much better place
And this wasn't bad
So a much better place
Would have to be special
No need to be sad

On the day that I die I'd like jokes to be told
And stories of old to be rolled out like carpets
That children have played on
And laid on while listening to stories of old

At the end of the end It's the start of a journey
To a much better place
And a much better place
Would have to be special
No reason to cry

[Whistling]

On the day that I die I'd like bells to be rung
And songs that were sung to be hung out like blankets
That lovers have played on
And laid on while listening to songs that were sung

At the end of the end
It's the start of a journey
To a much better place
And a much better place
Would have to be special
No reason to cry
No need to be sad
At the end of the end

(Paul McCartney, from "Memory Almost Full")

Leaping Mice

I've been out, come back and sorted some washing, googled some stuff I wanted to look into (funeral directors, end of life signs, hereditary pancreatic cancer - not nice stuff) coloured my hair, had a nice long soak in the bath (which I don't often do) and am now nicely re-settled at the laptop! Is it normal to have a favourites folder called "Cancer"? Well I do. It's full of all the stuff I've researched and I will delete it one day.

We went out to eat quite early - 6.15pm at the Beehive, the 3 courses for £10 pub that we found a while ago. It was a great meal. Just Roy and I this weekend. No kids, no brother-in-law! I think we needed it after the last couple of hectic weekends.

Did I mention that Roy thinks there is a mouse in our loft? He said last night he still thinks it is running around, so I refused to sleep upstairs. Instead we used our guest bedroom - which actually was quite fun because it has a tv in it (I won't put one in our bedroom) and I watched tv in bed for the first time in years! Is it physically possible for a mouse to get upstairs in a house (without having come in through the front door and up the staircase!!). Fred, our neighbour, says he can't imagine that a mouse could do that, but Roy insists he has heard it gnawing. He says it will have come in thru the garage, climbed up the shelves and got into the loft space that way! Must be a really good jumper that's all I can say, cos there's at least 2 feet between shelf and garage ceiling!

Dad's friend Colin called today. He was really upset, because as he was leaving, Dad gripped his hand and said "Know what Col? I'm falling apart rapidly." As Colin went out, he gave Dad a thumbs up, and Dad said "You're a good lad". I think they both know it may be the last visit.

Mum has just called to say that Dad has asked her to sit with him all night. He asked her if he was going to pass over tonight. She said she didn't know and asked if he thought he might.... he said he didn't know, he might have days yet. She asked if he wanted me over, and he said no, there might be nights left yet. Neil has gone over to sort her recliner chair out near to Dad's bed so that she can be comfortable and hopefully get some sleep. Mum says she isn't afraid to be alone with Dad tonight... they've had a good chat today, she said.

I've had too much wine to drive just yet (and unfortunately when we came in from our meal Roy had a few glasses too) so I've said to mum to call me later if she needs to me to go over. I guess if Dad wants us all there when he does pass, he'll wait for us. Oh, I don't know what to think really. I can't believe that this is the only Saturday in ages that I've actually had a drink and can't drive.

Catheters, Cleaning and Cuts

I was up at 5.30am with Dad, but not for long. He just needed his Buccastem tablet (anti-emetic) and I think that was all. Then he had mum up a few times, and by 8.30am we were all awake and up.

I got up because Dad was convinced that he had a bladder problem. He was saying that his catheter wasn't working and despite our reassurances, he was convinced there was a problem. I think he got concerned at the lack of output in the catheter bag, and wouldn't have it that he'd barely drunk anything yesterday which was more likely to be the cause.

So, I changed the catheter tube and bag, so that I could show dad the urine was coming through. I warned him that it could take an hour or so to start. He sat drinking water and studying the tube intently. After an hour (and while the carers were with him) he called me in to ask me to contact the doctor. I checked the tube - nothing there. Hmmm... strange as Dad said everything felt ok, and last time there was a backing up (due to a kink in the catheter tube), we knew because there was leakage. I called the District Nurse (doctors don't do catheters!) and Denise said she would ask Gail to bring a flushing kit to flush out Dad's bladder.

I put the phone down and next thing I heard cheering from Dad's room. I wandered in to see what was going on, to find the Care assistant triumphantly holding up Dad's catheter tube - full of wee! Ah, it's working again.... thank goodness! Dad seemed happy for me to cancel the flush out. The carer said that sometimes they get a little airlock and that she hadn't done anything to get things moving, it had just started.

After the carers had been I got Dad's toothbrush and stuff for him. He took ages cleaning his teeth and was so weak and slow. I don't now if he was taking so long because he wanted to do a good job, or because he just didn't know how long he'd been going. Whichever, it upset me to see him so weak again and I had a good whinge in the bathroom while I was cleaning his toothbrush, cup and bowl out.

So after the morning's excitement I spent a little while cleaning mum's flat, which doesn't take too long. Then I headed to Lorraine's for a haircut - I hadn't had it trimmed since January!

Dad had been smiling to himself when I went into his room earlier on. I asked him to share the joke and he said he was laughing about women. Why, I asked. Oh, the way women are always worrying about their hair, he said, laughing again. Ah well, that's something you and Roy won't ever have to worry about, I said... you're just jealous. He laughed again. Good to see a smile on his face.

When Gail (District Nurse) came, she already knew to expect Dad to be weak. She also knew his Zomorph dose had changed. Dr K had briefed her. After she'd gone, Dad was questioning what she had done, and asked me exactly what happened to him during her visit. When he told him, he was surprised... "didn't feel a thing" he said. "I quite look forward to Gail coming now". This is a massive turnaround - he used to groan when Gail was the Nurse on duty. Now I think she is so quick, he likes her to call.

Dad was due to have vistors tonight - Joan and Wally - but when I asked him about it at lunchtime, he said to ask if they could leave it until Sunday morning. He said he was fresher in the morning (he'd been sleeping pretty much from after the carer's leaving today). Mum and I had dithered over whether to cancel them, but as soon as I asked Dad, the decision became very clear. I had dreaded the day we had to do things like this, because it feels like another milestone - telling people not to come because Dad is too weak and sick. Not good.

And then I headed home. I anguished a little about this, due to Dad's condition. But then I decided that if I could have a quiet weekend, and rest up, then I'll be ready for the week ahead of us - and we have no idea what this will bring.

I don't know whether mum has realised that things may be drawing to a conclusion. I think I need to start gently preparing her that this final stage may not last very long. But then, what do I know! All my guesses and predictions so far have been off the mark.

When I phoned mum tonight she said Dad had asked her not to let the carers in when they arrived for the evening visit - he couldn't be bothered with them. This was half an hour after they'd been and gone.

The Longest Day

It is 21st June - longest day of the year. Each year I always have in mind that I'll do something to mark it - go out somewhere, sit out in the garden - anything really to enjoy the daylight well past 10pm. But I never do. I'm great at thinking of things to do, but never doing them.

This year the occasion was marked by a real downturn in Dad's health. Where did that come from? Over the last week he'd been getting weaker, and quieter.... but today was a real shocker. He didn't eat. Isn't drinking much water. Slept most of the day. To the point where his carers this morning said they were concerned he was drifting in and out of consciousness, or about to pass out. The output in his stoma bag has changed from bright green to very dark green. He has started to really fidget - not just fiddling as I've described earlier this week, but what seems to me like early signs of agitation - picking at his loin cloth, double checking the position of all his stuff (sputum pot, vomit bowl, water, clock) all the time when awake.

And so it feels like we're turning a corner on Dad's journey - a corner that's proving hard to negotiate and I know when we come off the bend the view isn't going to be great, either.

It was an upsetting day in many ways. Kind of feels like the "bad" stuff is happening all over again - I guess we'd had a false sense of normality the last couple of months. Now it seems that we are entering the final (and much dreaded) stages. I had hoped that Dad would just fall asleep and not wake up before we got to this point... probably too much to hope for. I have no idea how long this will go on for.

Doctor came this afternoon. Dad managed to crack one joke with her, amazingly! When she asked to look at his tummy he said "That's ok, we know each other now". I asked her after her visit with Dad about the funny turns. She explained that this is all part of chemical changes in the body caused by the disease, lack of nutrition and the medications - it can affect the brain. She said Dad is obviously getting weaker, and if we need her at all before her visit on Monday then we must call her. She has also increased Dad's morphine to try to keep him more comfortable (even though he doesn't appear to have much cancer pain, he's generally not been as relaxed the last few days). This upset mum - the more the morphine dose goes up, the more she feels like we're losing the "Dad" we know.

Last night, Lorraine asked me if I'd call her should I feel that she needs to be here. Of course I will was my answer. Today I pondered on this - how do I know when she should be here?! I have no idea when is the right time to call her over? My extensive research shows that in the normal process of dying it would be fairly obvious when the very end is close. But not everybody goes by the book, and unexpected things can happen. So I will have to do the best I can (and she likewise when I'm at home for weekends).

Emily had to come out of school this morning as she got very upset thinking about Dad. It's affecting her a lot, and I think she's acted a bit too brave so far, and been bottling things in.

I was thinking about some of the reactions I see from people on various cancer websites - anger is a very common one, especially in younger people (those in their 20's who are about to lose a parent). I don't actually think I've ever felt angry about this happening to dad. Sad - yes. Helpless - yes. Out of control - yes. But not anger. The closest I got was when I thought back on dad's medical history and the various things he's battled and beaten - including: asthma; hernia; 2 hip replacements; heart valve replacement; arresting when having pre-op tests for the valve replacement; pneumonia (more than once); many nasty bouts of cellulitis; skin graft on haematoma wound following cellulitis. I was mad that this time fate had given dad a disease that he didn't stand a cat in hells chance of fighting. But that anger was short lived, as the focus had to be on arranging Dad's care plan and making him comfy.

Dad's stepsister visited today but he wasn't really up for talking a lot. I popped out to have coffee and lunch with Barb - it's a regular Thursday date now, all being well.

Dad has dozed all day and night. He hasn't had many smiles for us today, but when I went in at about 9pm he woke and winked at me. I started to talk to him but he just closed his eyes again and went to sleep. Then at 11-ish when we took his headphones off (he'd insisted on having tv on) he seemed to wake up a bit and said he didn't think he'd sleep now. He did very soon after saying that. Now he looks peaceful. I keep wanting to go in and check on him.

Bits and bobs of thoughts..

So, it's that time of night when I gather from my bag all the scraps of paper I've jotted things down on. Throughout the course of the day I have to scribble notes for myself so that I can remember what I wanted to blog about.... my memory is shockingly bad.

Note 1: Dad and the Doctor
We were talking today about Dad's cheeky little exchanges with the Doctor, and I couldn't remember if these two little things had been included in the blog. Apologies if I am repeating myself.
One day, Dr Rathbone (AKA Dr Kay or Dr K for anybody getting confused) came to visit at the same time as the District Nurses were here. The Nurse asked if Dr would like to have a look at Dad's pressure sore wound. She said yes and went into the bedroom. She came out a little while later, laughing and telling us that Dad had told her it would be £1.50 for anybody wanting to look at his wound!

Last week, Dr K asked if she could lift up Dad's vest to check his tummy. He said to her "Well I don't know about that - have we been introduced?".

And one day, Dr was visiting when Dad was on good form. He was talking a lot and mum said every other word was "bloody". Mum was mouthing to him from the end of the bed: "stop swearing". He shook his head and eventually said to Doctor K "Doctor, do you mind if I swear". Doctor burst out laughing and said "Not at all". Another point scored for Dad!

Cheeky, funny Dad :-)

Note 2 -Jigsaws
I think I mentioned that Lorraine's kids got Dad a jigsaw for Father's Day. I had mentioned to her that he'd said he enjoyed doing them. Although in my 44 years I have never once seen Dad do a jigsaw!! Sooo... this thousand piece jigsaw is very nice, but looks pretty challenging and the pieces are quite small. I mentioned that I would help him with it, and so yesterday was allocated the task of sorting out all the edge pieces. Dad always was good at delegating. He's also been on at us today to ring Colin and remind him that we're waiting for the jigsaw board. So, tonight, I spent a happy hour sorting the edge pieces out into four bags - top, bottom, right, left. I guessed loads of them - it's one tricky looking jigsaw!!! So if you're reading this Lorraine - thanks for buying that. ;-). Oh, and mum says you have to help sort the colours for the middle bit out this weekend!

Note 3 - Getting comfy
Dad now has us raising his right leg higher than the right. I'm not even sure why. So he had me wrap a thick paperback book in a towel and put it under his foot. So now his accoutrements in bed are:
Mattress. Sheet. Pillow. Soft fleece baby blanket under his head on the pillow - this has to be folded in half, double and quarters throughout the day depending on what head position dad wants. Rolled up towel under the right side of Dad's head (to keep him from slumping right). Soft microfibre towel under Dad's thighs... they were getting hot and itchy a few days ago so we placed this here to help him and he says it does. Three pillows at the foot of the bed - one under both feet. One on the hard wooden footboard (real design fault when a 6' plus person is the occupant). One under all of that to prop up first two pillows!
Under Dad's arms we have two "arm rests". One is a short lumbar roll shaped pillow. The other is one we made out of a towel wrapped in a pillow case.
Napkin that Dad drapes over his chest when eating or drinking, and sometimes quite likes to keep on all day. "Loin Cloth" made of a square white cotton waterproof pad. Dad has no blanket on him at all now on most days and nights. If visitors are coming, sometimes he covers up, and sometimes he doesn't - depending on closeness and likely degree of embarrassment for said visitor!
So this helps you see why we spend so much time fiddling and repositioning the various items on and around Dad, several times each day.

Note 4- Rambling
Dad had another little funny turn tonight. I went in about 9ish and he said he was feeling all crunched up in his groin area. Little wonder really - he had the bed in a "jack-knifed" position and his head and legs were both too high. He started asking me if I knew that US jails were different to UK ones. Then he said he'd have to go and tell the judge that he'd got himself all uncomfortable. He said to me that he would have to give up criminal law. I was just smiling at him - all this was so serious, and interspersed with a sensible conversation about me moving his bed height down at the legs and head. Then he settled back onto his pillow and said, quite forlorn-ly (is that a word?) "I'll have to get an office job".
What on earth is causing this? Mum is getting quite worried about it now. We'll speak to Dr tomorrow.

So that's it really. Oh - I went for a swim today! Put the flags out. Only managed 20 minutes. And I was sent a job description for a role I may well look seriously at. More on that as it develops.

I was really proud today - I'd been trying to help somebody on the Macmillan forum. He'd just found out his mum has PC. He replied to my post and said it had been an inspiration to him. Made me smile. The power of online communities never ceases to amaze me - how much support we can give and receive, by reaching out to people whe we don't know, and probably won't ever meet. Incredible.

Midnight now... I'm getting earlier. Dad settled down about 11.30, he had pain in his right shoulder blade again. He looks poorly tonight.

Fiddle Faddling around.......

I thought Dad had settled down last night at about 1am. He had been reading his book until late. I got into bed at 10 past one. Then I heard this zzzz, zzzz, zzzz noise. I went in to Dad's room to discover that the noise was Dad fiddling with his electric bed buttons!

He then wanted me to feel his face so I could see how great a job the carers had done in shaving him the day before. He obviously wanted to chat.
So I got into a conversation with him (he was telling me all about how he's going to organise himself to do the jigsaw Lol's kids got him for Fathers Day) until about half past 1. "He said he thinks he's going to have a lot of fun with the jigsaw. He then told me about when he was sick as a kid (he was asthmatic and had bronchitis a lot). One of his favourite pastimes was jigsaws. Another was knitting (nothing elaborate!). Also, he liked to sit where he could see out of the window and write down car registration numbers - although I think that game got a bit boring as we're talking about the 1940's here and only one person in his street actually drove a car!

Then he said "Right, you'd better get to bed", like I was keeping him up! And ordered me to put my light out so he could settle down.

I told him I was going to take the buttons of him if he didn't stop playing with them....

Today, Dad is fiddling like mad with everything -his bed, his feet and legs, how his "stuff" is arranged on his table. It's doing my mum's head in as he calls me in a lot to help him - but I've told her it is what I am here for and if I'm not re-positioning his feet, pillows, bed and table every half hour then I'd have nothing to do, would I!!!

Earlier I walked in his room as he was fiddling about with his you-know-what (checking the catheter) so I just told him to stop messing about with things and walked out. Didn't want to get involved in that one, LOL!

He looks pretty rough today -probably tired as he woke early. He keeps wanting Oramorph (liquid morphine for breakthrough pain). He calls it Orriemore, and mum calls it Oraform. Sometimes if we ask whether he actually has any pain he says no, but he thinks it might just settle him down! Generally, the only pain Dad has is from his pressure sores - if there is any underlying cancer pain, then the Zomorph (slow release morphine) seems to do the trick.

Mum is very pale and wan looking. She hardly goes out..... for various reasons.

I had a short trip out to Widnes today. Picked up prescriptions, filled up with petrol, got the pension and lottery sorted out. Then home. A quiet day. Oh -Lillie and Brendan, mum and dad's old neighbours and long standing friends, came to visit before lunch. They bought him some holy water from Knock (site of a shrine to the Virgin Mary in Ireland). I told Mum not to mistake it for the Orriemore in the morning!

Not much else to report. Dad's arms itched tonight, but they seem to have calmed down with some cream on them. It's now after midnight and he's still awake but trying to get to sleep. And I'm about to do the same.

Signing on day

Another Monday, another appointment to sign on for jobseeker's allowance. I hate doing it. I always have a slight sense of shame and a feeling of "how on earth has my life come to this" when I go to the Job Centre. And yet it's a painless process and the staff there are very pleasant. Even the security guards (yes, security guards!) hold the door open for me.

I explained to the guy there that I've applied for Carer's Allowance instead of Jobseekers (at least I won't have to sign on for that!) as I'm now unable to seek work due to caring for my Dad. He advised me to carry on signing on until it comes through.

After that I went into the Tesco next door. It was interesting that most of the non-food goods now have their labelling in English and Polish! Did some shopping for mum and then went to Marks and Spencer for the rest of her food stuff. I decided to go on to Costco as there were a few things I needed from there. And then I called to see Lillie and Albert, as Lillie hasn't been so well since they got back from holidays. I took Albert a tray of sirloin steak for his Father's Day gift - a bit unusual but we couldn't think of anything else, and he begged us not to buy a shirt and tie!

I got home at about 1.30pm and had lunch, put the shopping away and sorted out my washing from the weekend. Before I knew it, Roy was home and skulking round looking hungry - so I made our meal. Left at 7.30pm to drive to mums.

Dr Rathbone had been today and had a chat with Dad about dying. Lorraine was here at the time so she's going to do a quick write up so I can cut and paste into today's blog.

Mum was tired when I arrived. She is still quite stubborn with Dad. I wish that sometimes she would humour him a bit more, and listen to him better. He was trying to tell her tonight how the bed could be redesigned to be more user-friendly, and she just talked over him. I kept trying to say that he was only wanting to share his thoughts, and she kept on fussing about how he could get his legs comfy.

I found Dad looking worse than yesterday... something about his eyes that looked more tired. He's had 2 coffees today - first time he's tried coffee in about 2 and a half months. I think he enjoyed them. He also ate a few spoons of jelly and custard. And that's it. Mum says he is drinking less, too. These are not good signs really, but we knew it would happen.

He's been trying to do the jigsaw that Lol bought him for Father's Day, but he needs a board to work on, so his pal Colin is making one. Mum is paranoid about him getting jigsaw bits all over his bed!

So, it is now 12.30am and Dad is reading to try to send himself to sleep. I'm done blogging so I'll go into him now and see if he's ready to settle down.

Added later - here is Lorraine's blog entry about what happened when Dr Kay visited:
Dr Kay visited dad today as she does every Monday and Thursday - her support is wonderful and I think dad quite looks forward to her visits, maybe it makes him feel safe in the knowledge she is keeping an eye on him.

There was not an awful lot to discuss in terms of any noticeable changes since her last visit, dad explained he had been sick a few more times and she did say that if it got worse they could give dad something to stop it but she seemed happy that it was not a blockage causing the sickness as it doesn't happen every time dad eats.

She also said she will look to reduce his clexane again soon (unfortunately this is because of his weight loss).

Dad then went on to tell the doctor about the dream he had on Friday that had upset him. Dr Kay (who has obviously been reading "Final Gifts") asked dad if he was frightened about what was going to happen to him, he replied "Not at all". She told him not to worry about a coroner as there would be no need for one as we know what dads condition is. She also said there would not be a post mortem unless dad specifically wanted one - to which he replied, pointing teasingly at mum, "yes, I want to know if she has been trying to poison me all these years" - Mum found this amusing (thank god!).

Dr Kay went on to ask dad if he had thought about what he would like to happen when he passes (this was very hard for me as I have waterworks like Niagra Falls - hard to control!!) Dad told the Dr all he had discussed with us (I won't detail this as I think it is a previous days blog) but when he started to talk about Lil and Tom (our Nana and Grandad) he got really choked and was talking through his tears, he said he thought the world of them and him and mum would not be anywhere without them helping to get their foot on the ladder (Mum and Dad lived with them for their first three years of married life whilst they saved for a house and furniture). Dr Kay said he would be able to tell them how much he thought of them when he got "up there". Dad then went on to say how the Reiki man had said his Mum and Brother were going to come for him but that Joan (mums best friend) had already been to get him - again dad was upset recounting this but was also saying how lovely it was but he was not ready to go when she came. That reminds me dad would like to see Sue Gardam again who gave dad Reiki which he found very relaxing and he liked her.
Mum brought in a photo of Nana and Grandad so I put it up on the shelf and told dad they would look after him from there.
Mum said dads blood pressure had dropped a little bit further (again not a good sign but a further sign that dad is starting to fade - I don't think we will ever be ready for what lies ahead so have to face each day head on.)

Mum brought in a photo of Nana and Grandad so I put it up on the shelf and told dad they would look after him from there.

Mum said dads blood pressure had dropped a little bit further (again not a good sign but a further sign that dad is starting to fade - I don't think we will ever be ready for what lies ahead so have to face each day head on.)

Father's Day

So, Sunday 17th June is Father's Day. Our last one with Dad. When I said to him on Friday that I was coming over for Father's Day, he just pulled a face. Don't think he really wanted a fuss. And he didn't get one really - we all visited and brought nice cards and gifts, but that was all.

Normally we'd try to do something like go out for lunch with both sets of parents, but this year obviously that wasn't possible. And I remember we didn't do it last year either, as I recall it was just a week or so before our trip to Canada and I didn't really have time for it (work was manic and I probably just didn't want the hassle). Makes you think, doesn't it. Do things when you can, because you don't know when you won't be able to do them...........

We left home at about 11 with Emily and Fran, and dropped them back home. Stopped for a quick chat with Lorraine and the family - and to show some photos. Then round to mums.

Mum was very, very touchy today - in fact she has been for a few weeks. But today she was weepy and really down. I'd felt like crying for part of the weekend myself - so I felt a bit like I could do without it. I know that sounds mean, but it is how I felt. I didn't show that, of course.

Dad was quite quiet really. He was trying to figure out what was going on in the cricket and Roy had to explain to him a few times that the game had been rained off on Friday. He kept asking about it. He'd had another funny turn (we seem to have named his dreams or visions as "funny turns" now) on Saturday, when he was convinced that he'd been to a mechanics in Warrington and two brothers had crashed a car up a tree.

We had one of our little victories on Sunday - we found a way of popping a rolled up towel under Dad's pillow so his right side stopped slumping sideways. We like it when we discover new things - although I did comment to Dad that it took us a long time to come up with that one!

Roy was surprised at the red marks (bruises) all over Dad's hands. His skin kind of splits sometimes and they bleed. There was a broken one on his arm today. The fleshy part between his thumb and index finger disappeared weeks ago and there is just a hollow there now - it's quite strange to see. His feet are starting to puff up a bit, too. Today I noticed that his face is getting tiny lines in it - he never really had wrinkles like that before. He is eating very little and even starting to drink less water.

We left at 3.30-ish and drove back home. Pizza and wine for dinner, and a lovely lie on the sofa watching tv! I left Roy to watch golf later on, while I sorted some other stuff out. I am still feeling tired from the rest of the weekend!! I'm such a wimp!

How do you solve a problem....?

We left home on time for our train to London. This day out has been in planning since December! Train to London, 3 hours to do what we like and then tickets for Sound of Music at the London Palladium theatre. The big attraction was Connie Fisher - she won her role as Maria in a reality tv show (How do you solve a problem like Maria) on BBC last autumn. Ticket sales exploded and when I tried to book (in December) the earliest I could get decent seats for a Saturday matinee was June 16th.

I was a bit iffy about taking the trip to London - when my Nan was ill I went to London and she died that night. I'm not really that superstitious, but Dad's funny turns on Friday had worried me. But he insisted I go and Mum had promised to tell me if she thought he'd deteriorated on Friday night (which he didn't). So off we went.

Courtesy of Pru (I travelled so much to London with them I had a book of free rail tickets) we went first class on the train. There were some delays around Wakefield due to flooding but all in all not too bad. Fran and Emily were quite impressed - Fran said she felt very posh! There was a bit of drama on the train as there were two drunks in the next carriage (yes, at 7.40am!) causing mayhem. They seemed like young guys, dressed quite smartly. Anyway, a Scottish stewardess and the threat of Transport Police at the next station seemed to sort them out.

We arrived into Kings Cross at 10.30am (half an hour late) and it took until just after 11 to sort out tube tickets! There are some fundamental flaws in the London Underground ticketing options. There were huge queues for the ticket office, and we stood in the queue for the ticket machine instead. When we got to the front, I realised that the machines did not sell child tickets - adults only. So I thought sod it, and paid for adult day travelcards instead. My logic was that it was better than queuing for the ticket office. I had an oyster card (which I'd got when I worked for Pru) and so was expecting to whizz through the barrier. Wrong. It didn't have enough cash on it. Back to the queue for another travelcard for me. What a nightmare - and Saturday is the worst day to be trying to buy tickets as Kings Cross is packed with tourists who don't know how to use the machines properly. This means that transactions which should take 2 minutes can take up to 10!!

We got to Oxford Circus really quickly - it's only 3 stops. The girls did not like the underground (but having had all that fuss getting tickets I was not up for going on a bus or by taxi!!).

Across the road from the tube station is a huge Top Shop. Emily and Fran were excited - they stood and the entrance and bounced up and down hugging each other for about 2 minutes. Then they went beserk... running around the store like possessed people! Reminded me of when you wind up a toy and then let go................

So they had fun trying on wigs and just generally looking at stuff they couldn't afford to buy. Next stop was Jane Norman, where they spent some of their money (they had £30 spends each) on sunglasses. Then to Claire's Accessories for magnetic earrings. And finally, the Disney shop, where Emily bought some cute glasses (drinking glasses) and so did I.

Time for lunch - I'd booked us into Bodeans BBQ Smokehouse. We ate burgers, pulled pork and BBQ chicken, and then it was time to go to the theatre. How excited we all were.... we were in our seats a good half hour before the show started!! (After the girls had purchased their Sound of Music T-shirts.)

The show was great - "brilliant and amazing" was Fran and Em's verdict. Connie was wonderful, as were all the cast, and despite running from 2.30pm until nearly 5.30pm (with a short interval) it seemed to be over far too quickly. We were debating whether to wait at the Stage Door for the cast to come out (we'd exited the theatre at the back) but decided against it, as we could be waiting a while. So we were on our way to find a coffee shop before heading back onto the tube, when Fran announced that she'd left her bag (containing camera and mobile phone!) in the theatre. We ran back round to the door we'd come out of. I told Emily that she might as well stand at the stage door and wait, while Fran and I went in for the bag. After speaking to about 4 members of staff, we finally found somebody who had her bag. Thank goodness, she was starting to get quite upset about it.

When we came back out, Emily said that Connie was about to appear... so we waited. She soon came out and the kids were thrilled to have her autograph, and a photograph with her. So Fran losing the bag turned out to be a stroke of luck.

By this time we needed to head back over to Kings Cross for the train home (at 6.30pm) so we jumped back on the tube. We arrived back really early at the station so stopped in the Lounge for a coffee and biscuits, and then onto the train for home. We were all really tired - I thought the girls would sleep but they didn't. They actually seemed to get a second wind at about 7.30pm and were quite boisterous all the way back! Lucky me.........

Again, we were delayed, and got back to Leeds around 9. Roy picked us up and we were home and having Pizza by half past. Then to bed.... all of us exhausted after an early start and a hectic day. Emily and I ended up having words about her behaviour later on (after she got tired she got stroppy) but that's just par for the course.

The start of another busy weekend!

Where to start? If only I could blog whilst travelling, I'd keep up better! This is a summary of the weekend (15, 16 and 17 June). Oh, this picture is the newspaper after Dad has finished reading it! Because he can't hold it all he reads a page at a time and the paper comes back to us in many pieces!! It takes ages to reassemble - especially on a Sunday :)

Friday morning I think I was in bed until late as mum got up on early shift. Dad was pretty weak and slept a lot during the morning. His eyes get a bit freaky sometimes - he's asleep but his eyelids are ever so slightly open.... it's scary to look at but we don't think it is significant.

I had no errands to run so stayed in all morning - Lorraine had taken the car as hers is still off the road. Around lunchtime, Dad woke up and called me in. When I got into his room he said that "they've been in messing with my medications". I asked who had. "Someone from the army. I'm not supposed to be here, they said I should have died at 11 o'clock this morning". I told him he hadn't died, and was still here with us. "Phone the doctor, and ask if the coroner has been informed of my death" he asked. I resisted.... I said I knew they hadn't. "How do you know". Because I'm here and you're here, and you're still alive. At this point, Dad got a bit agitated, so mum (in the other room but listening) pretended to phone the doctor and called into me that everything was ok, and the coroners hadn't been notified. I passed this message onto Dad. He wasn't happy. "Have I got to go through another night of this? All that palaver with my knees and legs?" (It had taken Dad a long time to get comfy this morning, he had a lot of pain in his bottom.) I explained that it was only lunchtime. He looked at me and said "Have we got weeks of this left?" I said I didn't know, I didn't know how long we had left. He shook his head in frustration. I asked if he could tell me what had happened and he just said "Not yet". If we ask if he was dreaming he always denies it, and says "I don't think so".

A little while later, Lorraine had gone out to pick Emily up from school and to go to the chemist for some prescriptions. Dad started saying he was a bit worried about her. I asked why, and he said: "Well, she's gone to A&E with one of the kids, and you know what Social Services are like for taking kids off people if they've had accidents. You think she'll be ok, don't you? Do you know what I'm getting at?". I said not really, because Lorraine hadn't gone to hospital. "Oh, she's just gone to the pharmacy?" Yes. "Am I having one of those funny things again?". I think so Dad. He just shook his head again.

He then asked me if I thought he needed a sedative to stop it happening. I said no, and that it could be down to his medication, or his blood pressure. I said if it kept happening or if he was scared about it, we'd speak to the doctor. A little later he asked what the noise was. Then he glanced down and noticed his headphones were blaring out on the bed next to him. He just rolled his eyes. He's losing his edge a bit. Not as sharp as he's been up to now. His hands and feet were very cool and his urine is still dark.

Dad caught sight of himself in the centre of the fan today - it's a round shiny piece of metal. He commented that he didn't look any different to last time. "Not too bad" he said. He'd expected to look really awful by now. I told him he didn't.

Lorraine came back at 4 with the kids - Emily and Fran. Fran is Emily's friend and she's coming to London with us because Lorraine can't go now. We headed off to Leeds just after 4 and got stuck in horrible traffic! Got home just before 6, just enough time to shower and change, as we were booked into Jinnah for a meal at 6.45pm.

Because the weekend was for Emily's birthday (although that was in December!) we'd asked for a cake when we booked the restaurant. They're great in Jinnah - they always give you free chocolate cake on your birthday! Emily's face was a treat when they called her over for it... you have to stand in the front of the restaurant while everybody sings Happy Birthday to you. She'd already admitted to having a crush on Yasser (the manager) and so she was blushing like mad (but loving it all really!!).

Got home at 9 and the kids played on MSN and then settled down to watch TV before going to sleep. An early start tomorrow - I have set their alarm for 6am as we are leaving at 7 and they have to straighten their hair and do their make up. Can you believe that these girls are only 12?

A trip down memory lane

I am sooooo tired today. Don't know why - could be the lack of sleep, LOL! Actually, it's my own fault as after I settle Dad down at midnight, I've been staying up till about 1am and then with getting up in the night or early(ish) I don't get in my 7 hours (my personal minimum sleep requirement!!). 8 hours would be better! This morning I was up at 7 and felt really knackered all day - usually I pick up after a coffee or two.

Dad woke with crampy legs (he'd slept with his knees bent and couldn't get them straightened out properly. I did a few gentle manoeuvres on him (no more massages!) and it seemed to help. Then he wanted to go over on his side for an hour until the Carers came, so we did that. Which necessitated some cleaning up operations - two Poop Patrols in 24 hours! Well, I did say I needed the practice.

I went to Asda to get mum's shopping this morning and then met Barb at Rivendell Garden Centre for a coffee and sandwich at 11.45am. Her mum is not good at the moment.

From there, I drove into Liverpool to pick Lorraine up from work (her car is off the road for a few days) and I was about 15 minutes early. So I parked up and took a wander down Old Hall Street - which is where I spent the first 15 years of my working life. Parts of it had changed dramatically - the building I used to work in now has a very swish huge glass atrium wrapped around it. Other parts (mainly the older buildings and down the side streets) hadn't changed at all. At the top end, a number of major building developments have gone up, and so that all looked totally different. I walked down as far as Moorfield's station (Liverpool has a 4 Station underground system!!) and was amazed to see that the Fruit and Veg man who occupied a corner spot on Old Hall Street was still there. He's been there at least as long ago as 30 years (well, maybe not the same guy, but the stall has). I took some photos, and I think people thought I was a bit odd!
I also took some pictures of new statues at the top of Old Hall Street - some wag passing bay shouted to me "I hope you've told them to stand still". The two guys are Sir John and Cecil Moores - of the family who started the Littlewoods empire (Football pools, catalogue shopping and stores). Anyway - they're the two men who you see at the top of the page.

After Lorraine met me we whizzed back down to Widnes and to the Market - I'm trying to get a picture of mum's framed but the stall had closed early. This was my second attempt (first attempt was on Tuesday when the whole Market is closed) so I'll try to make it third time lucky next week. Then we went to Cookes Chemist for a prescription (yet another Owing Note!) and then to pick Emily up from School. Finally - home to mums, where I sat like a zombie for the next three hours!

Dad is quiet again today. He told me he watched a lovely film this afternoon - the Guinea Pig - and he'd enjoyed that. Didn't really seem to want to chat much. Dr had been out, but didn't say much. He's only had a glass of milk and a half cup of soup today. He's looking thinner again. I don't know what else to say - I just am still so glad that he is more or less comfortable. I dread him getting pain, he doesn't deserve that. I do think he's fighting this cancer - maybe not consciously (i.e. he has declined the vague offer he got of life extending treatment) but certainly he must be getting by on his will power to survive.

So, midnight now, and everybody is settled down. So I must stick to my plan and go to bed. I might just read a few pages of my book........

Wednesday already...........

I'll combine two days here as I didn't get chance to update last night.

Tuesday:
This morning I popped out with Lorraine to the Cancer Support Centre in Widnes. I was really surprised and impressed at the range of support available to cancer patients and their carers/families. You can have massages, facials, reiki - all free, and there is even a luxury caravan in Wales that can be booked. So, maybe one day we'll avail ourselves of some or all of these services.

Our main reason for the visit was that Dad had asked about physiotherapy for his back and shoulders... his doctor didn't think phsyio was suitable (NHS physios aren't hands on, they'd just want to give him exercises, which he wouldn't be capable of doing) and she suggested I try Macmillan to see if a massage therapist would come out to the home.

The people at the Cancer Support Centre are all volunteers and for health and safety reasons they don't do home visits. We met a lovely lady called Margaret, who'd worked as a teacher all her life and took up massage when she retired. She showed us some basic moves we could try on Dad and gave us some advice on massage oil. She demo'd on Lorraine. As we left she gave us both a big hug and asked for Dad's name for her prayers. It is so moving how people can be so giving. I know for fact that some of my cyber friends also pray for Dad. I was quite choked as we left her lovely therapy room. Dee, the Centre co-ordinator also had a chat with us (and kept offering tea or coffee) and the whole place just had such a positive vibe about it. I hope to go back there soon.

As it turned out, Dad's back massage was a bit of a disaster! We were going to do it while Lorraine was here, so that we could turn Dad better in the bed. However, we forgot and she'd gone off to work by the time I started it. Things got off to a bad start by mum and dad squabbling as I was getting prepared - I'd got the music too loud and couldn't find the volume control and mum came in fussing about it. Dad then got irritated at her fussing!!

We (Dad and I) managed between us to get Dad on his side, but it took a huge effort from him and the whole process seemed to exhaust him. I couldn't really reach all of his back properly but I did my best (and actually thought I was doing an ok job). Dad talked constantly - asking the time, asking about the music I'd put on (a New Agey relaxation CD), worrying about how we were going to get him back in position. I chided him that he was supposed to be relaxing but he clearly wasn't and we stopped after a little while. I'm not sure if it helped! As I started to turn Dad back in the bed, I realised that he'd been to the toilet and so clean up operations had to commence. Ah well, long time since I did Poop Patrol so I suppose I need to keep in practice!

Picked up Emily from school and popped back to Widnes to get some stuff from the Chemist. Then I had to get ready as I was out to meet Lynn, an old friend and colleague - she's kind of like my mentor. Sadly, Lynn lost her dad (suddenly) a few months ago. We had a good old natter and chatted about my plans for work when I'm ready to go back. Of course, I have none, other than a few vague ideas! Lynn may be recruiting in January so she's asked me to think about the vacancy she'll have and let her know if I want to throw my hat in the ring.

When I got back I sat in and had a chat with Dad for a while... he likes Lynn and her husband and wanted to hear all about her latest plans (she's always pretty active on the property market!). He was delighted when I said she'd bought a retirement property in South Africa, and I had to describe it all to him in detail.

Dad settled earlier than usual - before midnight - and I went online as usual.

I spend far too much time online - sometimes I feel like the internet is my little comfort blanket between me and real life. I visited the usual cancer websites - Macmillan, Johns Hopkins and PCUK. It amazes me how many people are praying for miracles that their loved ones will recover from PC. I started to feel quite guilty that I'm not doing so. I have only once in the last 5 months hoped for a "miracle" - in the period when the Docs started to question that Dad had cancer at all. I wished that his biopsy would come back benign. I almost convinced myself it would. Then when it didn't I just accepted how things were and started to plan for how we could deal with them. It never crosses my mind that a miracle cure will happen. Is that wrong?

So, bed at 1.15am and then up at 5am with Dad (he was vomiting) but then I got a nice lie in until 8.30am, as mum had done the 7-8am medications etc.

Wednesday:
When I finally crawled off my mattress (literally, some days now that my old bones are getting creaky!) I got dressed and had breakfast. I was picking Roy's parents up at Manchester Airport at mid-day but their flight got delayed an hour so Lol and I went to M&S for some food and stuff. Dropped her off and got to the airport just on time. They took ages clearing baggage etc., so it was 4pm by the time I got home to Leeds. I had planned to have something to eat with Roy, sort the house out for the weekend (we have guests) and then drive back.

Poor Lorraine has missed out again - I had tickets for Sound of Music this coming Saturday and Lol, Emily and I were going. With things as they are, Lorraine didn't feel happy leaving mum on her own and so she told me this morning she is going to back out and stay here. Emily's friend Fran is coming with us instead.

I felt awful tonight - I'd said to Roy that I was driving back, but he had got it into his head I was staying home and driving back tomorrow. I leapt up at 7pm and said "Right, I'd better make tracks" and his face fell - "where are you going?". When I told him back to mums, he said he thought I'd been joking about driving back. Anyway, only another two nights away and I'll be back home.

When I got back, Dad wasn't so happy. He said he felt bloated and yukky. It's very rare that he complains of not feeling well (ironic, isn't it!) and so it seemed strange to be sympathising with him over it. He couldn't get comfy, so I gave him some Oramorph. He's just settled down (just after midnight). When things like this happen, I start to wonder if we're about to turn another corner, but then he bounces back. We'll see. Brian (District Nurse) was saying to Lorraine earlier that he thinks Dad is deteriorating. I don't think I've spelled that right but my eyes and brain are too tired to check!!

And another week begins

Back over to mum's this morning. All is well. Mum is feeling a bit better, but doesn't look great.

It is so hot here. We have fans going in both the main rooms but as soon as you get up and do something you're all hot and bothered again. It's only high 70's too! Heaven help us if we get a proper heatwave in the 80's or 90's.

Dr Rathbone came out today - she said Dad's BP was slightly low, and steadily dropping. He asked if that was a good thing and she said "I don't know, really". In other words - no.

I don't know where the day went, really.... before I knew it it was 9pm! Just after 10, Dad asked me to rub some ointment onto his shoulder and buttocks, as they were achey. It is really difficult for him to turn on to his left side, but we managed it and I think he got some pain relief from the massage. He was keen to have Oramorph at bedtime (around midnight).

So everybody is settled except me... I really should go to bed!

Another weekend is over

Thursday night/Friday morning: Got to bed at 2am after having a chat to Dad about how we could get in touch with some of his old gym buddies... they'll think he's not there because of the hip operation he was due to have in March, and he wants them to know what is really wrong. He's given me directions to the house of one of them, and I'll call in and have a chat.

Later on Friday morning Dad was up at about 5-ish, for his usual early morning bout of sickness. He settled back down quickly and slept through his 6.30am alarm. I got up for the last time at 8am to help mum with the tablet routine. I wanted to be up and out early to pop to Marks & Spencer for some food before picking Auntie Stella up for her visit. Also had to clean the fan that is in Dad's room as it had gathered so much dust!

So, Stella came and had lunch and then just before I took her home Lorraine and I went to look at over-bed tables for Dad in Prescot. We ended up ordering one online as it was about £30 cheaper. I hope Dad likes it... hopefully it will arrive next week.

Dropped Stella off at about 3.30pm and then headed home. By the time I got in, Roy had set up the table in the garden as it was lovely and warm, so we ate al fresco. First time this year, I think. I had been lazy and just got salad and stuff from M&S so it was all nice and easy. And quick! I had been looking forward to a nice cold glass of white wine.

After that, just lay on the sofa watching TV - I was too tired to do much else! Also had left my suitcase at mums (accidentally) so couldn't sort my washing out.

Saturday morning we popped to Crossgates to the bank and then got back to mums for about 1. It is very hot and Dad's urine is looking really dark - not sure if it's the heat?

At about 4, Roy and I took Emily to Crosby to see the iron men - Anthony Gormley's "Another Place" art installation. It's quite impressive! I couldn't believe that people were actually paddling and swimming in the sea at Crosby - it's filthy! With brown scum on the tide. I also learned today that Liverpudlian guys still call each other "lad" - I've been away so long, the accent sounds really strong and sometimes quite alien to me now.

We walked for ages along the beach and then had to practically sprint back along the prom as we'd promised mum we'd be back (complete with chinese takeaway) by 6.30-ish. As it turned out we got back at just after 7. Not too bad! After eating, we decided that Emily would stay at Mum's rather than come back to Maureen's with Roy and I. So I set her bed up, did Dad's arms and then Roy and I left at 11-ish.

http://www.antonygormley.com/newsite/viewproject.php?projectid=13&page=2

I was a bit miffed with the carers on Saturday evening. They told Dad that they couldn't do his elbows or foot anymore as they aren't allowed to do bandages. It's hardly bandaging - all we do is wrap some soft cotton round the parts of him that are getting sore rubbing on bed clothes. I think I was more annoyed that they didn't tell us too. Ah well - as I said to Dad, he'll probably find that some of them will do it - it's just the real jobsworths who won't. I know they have rules to follow, but these aren't bandages over wounds. (Yet.)

Sunday morning we got back to Mums at 9 and she wasn't looking very happy at all. I thought she was just a bit low - she said she felt a bit upset, but nothing in particular had happened to cause it. So after Emily got up I decided to take her out for an hour. We'd had a chat last night about some bullying she's experiencing at school and I wanted another conversation with her just to get some more info and start her thinking about ideas on how she could tackle it (I need to talk all of this over with Lorraine).

As I left mum's, Colin and Dot - good friends of my parents - had just arrived. When I popped back half an hour later, Len and Angie (mum's cousin and his daughter) were there, too. And then Lisa (Neil's partner) and their three children arrived. I could see mum's face - the flat was jam packed with people and she didn't look at all well... at this point I thought it was tiredness and the heat affecting her. So I quickly dragged all the kids out and we went to Sherdley Park for an hour. I haven't been there for years! It hasn't changed. It's a great park for kids as there is a little animal section as well as the usual swings and stuff.

The kids were all great fun.... they all buzz off each other and they love to see Emily. I must make an effort to take all four of them out in the summer holidays. After they'd run off some steam in the play area, we got ice creams and walked round the animals. They all loved it... there is a very strange assortment of animals there - wallabies, peacocks, pigs, sheep!

It was funny hearing them in the car - Bethany was saying that Grandad (my dad) used to always take them out but he can't now that he's poorly. Emily was agreeing with her and saying "Oh but he's in good spirits though, isn't he?". It's so funny to hear them repeating what they pick up from adults. Emily had been chatting yesterday about all the places her Grandad has taken her to - she has a fantastic memory - and she said he was always "dead interesting" as he took her round places he grew up, etc, and always took the long way home from places if they went visiting relatives, to make it more fun.

Jack told me in the park that next time, Roy could bring them on his own. And then after that, Grandad could. How do you tell a 9 year old that his Great Big Grandad won't be doing that again?

We all piled back in the car, hot and tired, and headed back to mums. By 2.30pm everybody had gone - I think mum was glad to see the back of us all! Roy and I were home by 4pm, after a quick trip to Sainsburys for food (more salad stuff!). When I spoke to mum later on, she said her throat is really sore and her glands are up - so Lorraine is going to stay late tonight until Dad is settled to let mum get a good sleep.

And there it is - another weekend over. And a new week begins tomorrow. Who knows what it will hold.

A down day

Well, my jubilation at Dad moving his alarm clock to 6.30am instead of 5am was shortlived. He settled down to sleep at 10.30pm and was awake needing help with various things at:
3am (he was sick)
5am (he thought somebody was at the front door)
6.30am (he was shouting out - he was dreaming the carers were in with him)
and finally at 8am (when he claimed to have been calling since 7am).

Mum did the first two "calls" and I took the later two. Problem is, we both are actually awake whenever the other is up with Dad, so the sleep gets interrupted anyway.
I felt guilty at 5am cos I popped my head in to his room (en route to the loo) to see what exactly he had mum doing for him. He caught sight of me and said "Oh - do you want to do my ears?" (referring to the warm olive oil we're dropping in to loosen his ear wax). Mum looked at me and said yes, and instead of declining gracefully I snapped "He's not having routine stuff like his ears done in the middle of the night". I felt so bad later... he asked me again at 6.30am and then said "only if you're not too tired".

Soooo... pretty tired today! I was going to Tesco for mum's food shopping and made the mistake of "popping in" to Ikea on the way. You don't just pop in to Ikea though - it's at least a 4 mile hike from entrance to exit!!! Ah well, got what I wanted so that's the main thing.

Dad seems down today. I came back from my 4 hour shopping trip and walked in to his room. I asked him if he was ok. "No". He's cut his finger on the hoist while pulling himself over, and its really sore. Also, he's fed up of his hearing playing up. I said that he looked tired today. "I am".

Poor Dad. I suppose its inevitable we'll have days like this after a good day like yesterday. He's not really been in the mood to chat so we've kept it functional. He wasn't even in the mood for chat with the Doc or Carers. Dr Rathbone has reduced some of his diuretics as she doesn't want him to get dehydrated now it is warmer (plus he doesn't seem to be retaining fluid). She also said those meds are weight - related and they estimate he's down to 11stone now (from 18.5 stone in January???). That is over a 100lbs weight loss in 4 months. I don't think he's that light yet.... maybe 12 or 13 stone?

I feel bad about something from last night. Mum came in and said that between them they'd managed to drop Dad's sputum pot on the carpet and it had emptied out. I knew she'd struggle to clear it up (bending isn't easy for her and I doubt she relished doing it anyway) but my offer to help was pretty half hearted. I can handle toileting stuff, and blood. Even the pressure sore wound and vomiting (just about) but the sputum pot fills me with horror. I avoid it like the plague. So there is my confession for the week. Sorry mum, I should have got up and done it for you.

On the topic of Mum - I think I may have mentioned how disorganised she is! She has a habit of walking around the flat with things and just randomly leaving them where they don't belong. This often results in many minutes spent searching for stuff - the remote controls for the TV and DVD players usually (there are 4 of these!!!). She also has a way of starting one job and then moving on to another without ever finishing the first, so we follow her round and guess what she was about to do and then just do it for her anyway! And finally, she causes herself a huge amount of work by never, ever putting things away after using them... even when she's next to the place where they belong. Even to the point of not closing drawers behind her (when she does this in Dad's room it drives him potty!). It's like she gets within an inch of where she needs to be and then gets distracted and wanders off.

Anyway, to assist with the problem of missing remote controls, we got mum a pouch thing that you put over your armchair to hold the remotes. Just think Mum, we said, how wonderful it will be when the remotes are always where you put them - in the pouch. How much time and leg wear you'll save. Yes, she totally brought into this fantastic idea, and we spent hours trying to encourage her to use the damn thing. I went home one Friday and when I got back on the Monday the pouch was nowhere to be seen. I confronted Mum to be met with 101 different reasons why it wasn't suitable (kept slipping down the chair, pockets in it too shallow.....). So, once again I failed in my mission to get mum organised.

Today in Tesco I spotted Gardeners Tool Belts - wow, I thought, a remote control pouch for round the waist! I had to buy one... Mum was quite taken with it, even though I'd only brought it in for a laugh. She walked round with it on for, oh at least 10 minutes.

I promised a list of our daily routine - I'm still working on it.
In addition, I think I'll do a list of all the medical paraphenalia that has invaded my parents house..... we spend hours each week doing inventories of it all so we can make sure we have ample supplies of important items. So, I'll put it on my list of things to do.

Popped to Lorraine's tonight to look at her new frock (she has a summer ball at the weekend) which is gorgeous. Then back here for a shower before watching Big Brother. And now it is 12.30am and I am waiting for Dad to tell me he's ready to settle. He did warn me it might be after 1am.... after his restless night last night he's determined not to go to sleep too early tonight.

So, at quarter to one I started to wash Dad's arms (which get itchy and need washing and ointment putting on) and his head. We have a new routine! Because of the soreness of Dad's skin, we have constructed these "elbow pads" out of cut up cotton vests - apparently just the thing for sore skin. We'd been taping them round Dad's arm but tonight we discovered some very light stretchy tubular bandaging that fits over them just nicely, and keeps them in place. Hopefully they'll hold over night.

Meeting new people

Mum did Dad's early "shift" today (the up at 5 to wake him so he doesn't sleep too heavy routine) but I still woke up and heard them anyway. Then at 7-ish they were talking and every other word seemed to be "Jan" so I got up to see if I was needed to something. Apparently it was Dad trying to get mum to go back to bed for an hour or so, and let me see to his tablets, ear drops etc.

Fine by me, but mum stayed up anyway. It's amazing how long it can take to run through the daily routine stuff. I must list them out one day (those who know my love of lists will understand why I would want to do this).

I picked Dad's papers up and then headed out to meet a cyber friend I met on the Pancreatic Cancer UK website. She lives in Canada but is back in the UK caring for her mum who has PC. Funny thing is, as we were exchanging messages on a PC Forum, we realised we were both in the same (small) town at the moment! So we're meeting up for a coffee. I was telling my dad earlier and we ended up having a very confused conversation! I told him I was meeting a lady I met online, and he thought I meant Lady! He starting asking me whether she had inherited her title and if she was a down to earth or a bit la-di-dah!!! I think we ended up back on track.

So I had a nice lunch with Barb and then popped to the shops to pick up some stuff for tonight. It's "Big Shop" day tomorrow.

This afternoon, Lorraine and I spent a pleasant couple of hours in with Dad looking through all the family photograph albums. We found some really funny ones and some of Dad's mum and grandma. When he was looking at the picture of his gran he was telling me how she was a lovely lady, and then he looked at the photo and said "You're a lovely lady".

Later on, I did Dad's arms for him (they do itch and it soothes them if I wash them after his dinner) and I also washed his head, as he says he keeps forgetting to ask the carers to do it. I think he's just scared, as one of them cut his head twice with a bracelet a few weeks ago. So I did his head too (well, just the bald patch). I apply lotion to Dad's skin using a firm patting motion, and he was very impressed with how warm my hands were - he say's I should start a Reiki/Healing practice! I was highly flattered by this. We had a chat about how much we've all learned in the last four months - not only about how to do stuff, but about ourselves as people. He asked if I'd offered my services as a carer to my in-laws if they should ever need them!

Dad's still talking as if he's going to be here for a long time yet (6-9 months was mentioned at one stage) and was even telling me how he's increasing his food intake a little each day. He did eat well today (compared to some). Maybe he's in training for his Christmas Dinner!

We've had some fun today - just bantering and reminiscing and stuff.

Christmas Cheer?

I'm baffled. Today, Dad has mentioned Christmas about 6 or 7 times. Mainly in relation to Christmas Dinner. He keeps talking about what he would like to eat - a small portion of turkey, veg, potato and gravy. How Roy's parents would have to come over here this year, but there should be room for us all. How he's hoping that if he's still here he'll be able to eat a Christmas Dinner.

Mum asked him if he wanted to try a small roast dinner - but he just said "At Christmas, yes".!!!
What is meaning of this? I am sure there must be a message behind it for us. We wonder if Dad would like some kind of family gathering before he passes. We're thinking of doing something on Father's Day.

More black humour content: Mum says if Dad lasts until Christmas, then he'll have seen the rest of us off by then!!

We were discussing today how mentally draining being a caregiver is (it's also physically draining for mum, too). Every day I thank my lucky stars that there are three of us plus the Home Care team and Nurses doing this. So many people are alone and trying to cope.

Dad was happy to see his three mates - Richie, Philly and George today. He seemed anxious to know what they'd said about him - how he looked, how he seemed etc. I said they think he's doing really well. He thinks they were more relaxed with him than on their first visit to him since he's been home.

Mum and Dad argue incessantly about the most ridiculous things! Today I mediated in three quarrels -
- how we can get the towels soft enough for Dad's sensitive skin
- how to get three visitor chairs in his room without moving his bed (answer: it can't be done)
- how many glasses of water Dad is allowed on his bedside table for over night. He wanted 3, mum only wanted him to have two. I've given him three. I won't argue with him, and if he knocks one, then it's only water.
I try to tell mum that we have to remember that Dad lives in a very small world at the moment and therefore these things can escalate to major rows with him if we don't back down (or be seen to back down) a little bit. She doesn't really seem to want to give way. Her choice - and I guess that's how they've always been so.....
Problem is, sometimes they are just at crossed wires and then if I step in and Dad gives way, Mum gets upset cos he'll listen to me but not her. Ah well, these things are sent to try us.

Dad told mum tonight that he'll come for her when he's got things all sorted out in heaven. I think she must have looked a bit panicked because he then added "Not for another 15 years or so - unless your knees go and you can't cope, and then I'll come and get you sooner".
He is so funny.... unwittingly so, sometimes.

He had also told her that he might start feeling a bit frisky if he carries on "feeling better", LOL! At that, she did panic and almost ran out of his room (only kidding). Then I walked in and he said "not in front of the girls"!

Dad is now eating very little. Today he's had:
5 spoons of porridge (he was very specific when ordering this)
Half a cup of tomato soup
Half a tub of strawberry mousse
A 2" piece of smoked haddock, mixed with butter and a poached egg yolk.
How he's keeping going on that I don't know.

Roy's parents go to Ibiza tomorrow for a week's holiday.

I had some sad news yesterday from my friend Lynn - she lost her father a month ago. We're going to meet up next week for dinner.

Time for bed. My mattress awaits.......

Back "Home"

It feels good to be back and Mum and Dads. I feel more settled here because I have stuff to do and it keeps me occupied. I also feel somehow calmer about the whole situation when I am around Dad. I also found out that Mum hadn't coped too well at the weekend and got over-tired with it all.

Dad had changed in the week since I'd seen him - in that he is thinner, his face looks smaller. His eyes aren't quite as bright, and he just isn't as sharp as a week ago. He gets a tiny bit muddled over some things now. Other than that, he was on good form, chatting away, wanting his ear, eyebrow and nasal hair trimming. I seem to have acquired the job of barber as well as nutritionalist. Lorraine does manicures, pedicures and poo.

I arrived just before the Doctor's first visit for the week. She had a chat to dad about his various symptoms and their management - currently, these are:
- Dry mouth and lips (solved by gel based saliva substitute and vaseline)
- Bruised, red and splitting skin (possibly to be solved by lowering the clexane dose)
- The pressure sores (this is just part of the daily routine now - re-dress and pack, oramorph for any discomfort caused)
- Vomiting on rising (and occasionally at other times)
- Thrush in mouth (solved by Nystatin and if that doesn't work, Fluconazole)
- Pain in shoulder blades (we think this is pressure when lying a certain way)
- Sensitive and itchy skin (I now wash Dad's arms every afternoon and put Sudocrem on to relieve this, and we've stopped using scented shower gel/soap).
- Occasional Deafness (solved by putting warm olive oil in Dad's left ear a few times each day)
I think that these were the main talking points today.

As Dr Rathbone was leaving I gave her a copy of the Final Gifts book that we'd told her about. Dad wanted to know what it was, and I said it was the book that mum had told him about - one which was reassuring about death - how it happens etc. Dad promised Dr Rathbone that once he'd had chance to properly check heaven out, he'd come back down and tell her what it was like. I think he likes to send her on his way with a giggle.....

A lot of the carers comment on how pleasant it is to come to look after Dad... they think he's lovely, and he is of course. We hear them chatting and laughing in his room with him - sometimes it's like there is a party going on in there!

Later today, I was talking to Dad about his shoulder pain and he was struggling to find the words "Shoulder blade".... so he said "that bit where my wings will go when I go up to heaven". He is still making me laugh, too. I also noted that he is still doing his musical coughing, where he'll end each cough with a little "tune". Oh, and he is still obsessed with his bowel movements.
We're almost at the stage where he's got the nurse and carers weighing his output. :-)

And finally, Dad is still keen to know that he looks ok - mainly because he's been inviting visitors again. He says he wants to see "the lads", Stella and Ann in the next two weeks, before he starts "looking awful". He doesn't think it's nice for people to visit a cancer patient once they're all gaunt.

Warning - black humour content in the final sentence of today's blog.

It's June. Which means that I am not the winner of the "When will Dad Die" Sweepstakes. My prediction had been May. So maybe Lorraine has got it right - she had July in her mind.

This isn't at all because I wanted Dad to die in May, it's just the sort of timeframe I had in mind seeing how he was on leaving hospital.

The weekend - after a week "off sick".

My face is still swollen and sore, but the pain is now more of a twinge.

I'm banned from going over to mums. She and Dad have told me they want me to stay here and get properly well. So, I think I will follow orders. To be honest, if I'd woken yesterday totally well and pain free I'd have gone over there, but I still felt a wee bit off colour. We're not going out this weekend, either, so will have a quiet time in with Roy.
Mum says that they are ok... but Dad is starting to throw up in the evening now, too. Mum had an appointment at the hospital with a skin specialist about her foot - he basically said she was seeing the wrong guy and he couldn't help her. What a waste of time - she'd waited ages there, too.

I was checking through the contents of the freezer and thinking up meals I can make out of them! I'm pretty much still on soft food, so I guess rump steak is out of the question! I found some frozen mango, though - so made a nice smoothie with that.

I found out yesterday that I can't drink alcohol with the antibiotics I'm taking. Boo hiss.. just fancied a small glass of red wine with dinner. Ah well, the worse that can come of this week is that I lose a few pounds....

I am also supposed to be studying! I've got a financial services exam to do (not a biggie - total of 20 hours study). Although the longer I am away from work, the less I want to

a) ever work again

b) work in financial services

I was interviewed late last year and again in January by a firm in Preston who promised me a job offer and then appointed somebody else. They were a bit shabby about how they did it.

I think I mentioned that I met the girl a few weeks ago at the Mortgage Expo I attended.

Anyhoo... my old work mate met her last week at a conference. He's so fiercely loyal! This is what he said in an email to me today:

Met that XX last week in XX - god knows why they picked her. She is so dippy and was dressed like she was going to a wedding.She said that she saw you talking to various people in Manchester but didn't introduce her self as she had taken your job and beaten you in the race !!!!!

I took an instant dislike and told her that you weren't able to take the role even if offered due to personal family commitments. And that you wouldn't need to work for a very long time due to huge compensation from XX. And that her company couldn't afford you anyway. AND you needed a more expansive strategic role rather than an operational one !!!!!!

Then she asked (deleted next bit as it relates to some commercial deal the two companies are trying to do, which isn't going well).She went of in a huff and said Xx (her boss) wont be happy !!!!!! lol We were burstingwith laughter. She's horrid.

I know this is catty but it made me giggle today! Hmmm, I bet she's also using the draft business plan that I presented to her MD too.

Like I said, not much on the agenda this weekend. I'll keep taking the tablets!
They're giving out tickets for the Opera in The Park event today - but I don't feel like going into Leeds for them. I'll take a chance that there will still be some left next week. Bit annoying really, as my SIL2B is in town every Saturday morning. When I asked her if she was going today, and could she pick up any tickets (I used to do about 4 separate trips as they only allow 4 tickets per person, per time) she just said "not for long" and that she'd see if her friend could get any. Grrr. Help me out, why don't you! Every flipping year I organise this and on the one year I'm not around to nip in and out of Leeds for them I get no help from anybody else. So I'm going on strike. Rant over.

A quiet Sunday. Had a walk in Roundhay Park earlier - round the lake - and then came home to do some cooking and just mooch about. Have felt pretty low all weekend - a consequence of sitting about at home for a week, I think. My brain feels scrambled.... I need to get back to Mum's which at the moment is my "normality".