The Final Taxi

This isn't a post that is easy to write but dad was determined to keep the blog going right to the end.

After a long and restless night, dad passed away peacefully at home this morning.

The chemo blog enabled dad to offload his thoughts on dealing with cancer, but has also helped to keep you all in touch with how he was. Your support throughout has helped keep us all positive right to the end.

Lauren, Sharon and Ian.

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It's all a bit of a blur ...

Lauren again.

I've taken over blog writing again, the breathlessness has got worse, dad had several visitors, hallucinations started again, appetite completely gone, sleeplessness nights, kind of sums up the blur of the past couple of days.

Currently waiting for the district nurse to come out to assess dad to see If there is anything they can do to help with the breathing.


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Seems like a long time

And lots will have happened. That will have mainly been doctors Macmillan nurses and Occupational Therapists. All very boring. So let's go with what I see as the highlights of the last couple of days.

Sharon has been sleeping in th front room with me. I am sure it is not very important to you, but to me it has been really comforting and re-assuring. She can get my breathing and heart rate down to a normal relaxed state with a 5 minute hug. None of the drugs do that.

We seem to have got the balance of the morphine free pain killers right. I haven't had any of the intense pain attacks recently and my hip is comfortable unless I do something stupid.

We have mastered using the wheelchair to go to the loo. This makes it easier for everyone and doesn't take me an hour to recover from. Sharon needs some manoubering lessons or the chair needs better wheels, but we haven't damaged too much.

Had another excellent foot massage from Aud yesterday and Sharon had a brief lesson. Sharon has been doing them anyway, but I am looking forward to her improved technique. It really does get the blood flowing in the lower leg, wish I had started them 18 months ago when the Vinchristine first started to hit them.

Right enough of this blogging, ought to at least pretend I have had some sleep.
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Bed didn't work

Went off upstairs (much effort) and thought we had got the magic electric bed somewhere near the angle of the recliner. The distance between the back riser and the knee riser is all wrong though and after an hour I was in agony and couldn't breath. Took some oral morphine substitute. We had a play around and thought we had it better, but at about 4:00am I moved back to the recliner. Slept there until 5:30 then dozed through to 8:30ish when Sharon appeared with medication. So back on the recliner all day. I did struggle up to the bathroom to test the new toys and shower. Bloody hard work and took ages to recover.
I admitted to Sharon this afternoon that I think it has finally beat me. I am trying to fight and say strong but for the first time since it all started I don't feel like I can beat it. Even with the Oxygen at 4 litres an hour I feel breathless. Simply stumbling to the toilet leaves me breathless and takes ages to recover from. I have no appetite, if I do eat it is a struggle.

I will carry on blogging whilst I can.


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Children in need.

You lay on the sofa having a good/bad day with a terminal prognosis and Terry Wogan still manages to find people in a worse state than me. Shed a few tears and donated a few pounds. You should all do the same.

My GP has been in. She bought me a nebuliser. I put saline solution in and it creates steam/mist. It is supposed to ease the tightness in my chest and I think it did for about an hour, but it all tightened up again. Think I will try it again tonight, she said I could use it 3 or 4 times a day.

The adjustable bed has arrived, along with a hand rail and seat for the bath. I haven't tried them yet, job for tomorrow.

Have had periods of sitting on the sofa hugging Sharon and feeling good, then within 10 minutes I have felt down, miserable and out of breath. The Oxygen nose specs make a noise all the time and the full face mask is hot and horrible. With the nebuliser I have to wear both.

Was going to write more blog but nurse Sharon has just started a foot massage with frankincense and grapefruit oil gotta go....................
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Average day

The exertion of climbing the stairs to go for a wash resulted in a long sit down on the loo with a plastic bowl. Would have filled the bowl, but there wasn't enough inside me to do so. You probably didn't need to know that, but I felt I should tell you to give you an understanding of how bad things have got.

Fairly quiet day, my brother rang for a chat. I love being in touch with everybody, but chatting use up oxygen so I had to have a rest after the call. I had my laptop out to clear my emails. I was going to write some Auto Biography, but I was knackered so I watched an Elvis Costello documentary instead.

So I dozed most of the afternoon, had some risotto for tea and then visiting time started. The Kings turned up to do some removals, I have a hospital bed coming tomorrow. Then Andy looked in, really good to see him, than Lauren and Ian turned up. Was nice to have it busy, it meant I didn't have to say much and it keeps me busy.
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Latenight Blogging

Fell asleep on the sofa, so I haven't blogged. Sharon woke me up about 11:25 to take the evening cocktail of painkillers. Now wide awake watching tele and blogging.

District nurse came this morning she is happy with everything. She will leave it until next week to come again unless we call them for something.

Brian had been to see Andrew at Enstone, so he called in. We spent an hour or so going through my scriblings so far for the Auto Biography. Must type some more up.

I have managed to eat a slice of fruit toast, some pommebear crisps and some cheese. Not the worlds most nutritional food, but it's in and it's stayed in. My digestive system has been very loud with rumbles and groaning.
Mike came to see me after he had finished work at Vision. Really nice to see him. He had bought his laptop with video of his rally car out in south wales. It's a beast when you consider it is home built as a cheap fun car.

Fiona turned up whilst he was here, so for a while the talk was just high level chat. I need a more in depth discussion with Fiona about funerals. Let's hope she has time to pop back.

Falling asleep on the sofa has upset my body clock. Guess I will be awake for a while.
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Health professionals today.

Macmillan nurse and an occupational therapist today.

Spent last night downstairs on the recliner, went to sleep watching Tokyo Drift, managed to wake up and switch it off though. Slept from 12:15 through to 6:15 and then dozed for a couple of hours. Got up about 8:45 and dragged myself up the stairs. It was hard work, my lungs were really struggling.
Glynis(who used to work at John Matchetts) came round about 10:15, great to catch up with her.

After she had gone Mandi, the Macmillan nurse came in to see me. I had told her I wanted some straight answers and I got them. It is highly unlikely that I will get any better, the oxygen, blood clots and wobbly leg are here to stay and will get worse. We have reviewed all my pain killers and discussed the side effects of morephine. As a result she has got the GP to prescribe an alternative to morephine, oxycontin that will have the same pain killing effects without the side effects. Let's hope it works.

This afternoon the Occupational Therapist came in to offer loads of aids. We are having a riser for the toilet, a hand rail by the shower, a step to get to the bath, a seat in the shower nad a walking stick. I have asked for a basic un-tuned one I can then tune and customise myself.
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Went to bed and ......................

I started off in bed last night, built a mound of pillows to get the same angle as the recliner chair and it all seemed good.  But within half an hour it had all fallen apart and I was uncomfortable, I re-arranged but couldn't get it right and about 1:45am I gave up and Sharon helped me move to the recliner where I got a good 6 hours sleep.

Got up and just about managed to get upstairs for a shower.  My GP rang just before I got in and asked if it was OK to pop round , she arrived just as I was drying myself.  She has put me on some anti-biotics just in  case I have a chest infection, upped the dose of Gavapentin pain killer alongside the slow release morphine, she was a little concerned about my hallucinations and doesn't want to increase the morphine.  I have to say, I have felt less pain today, felt more tired and been a bit queezy.

The GP left and I got dressed and sorted and went downstairs.  Rob turned up, great to see him, he wants to help, and I am sure we will find things he can help with.  Had a good long chat with Rob and he 'looked after' me whilst Sharon walked Lucky and made several phone calls.  He also coped with me throwing up, well beyond the duty of friendship.  So there you go Rob, you have already helped.

Karen and Kevin turned up just as Rob was leaving, I was getting tired by this point and I am sure I wasn't the best of company for Kevin whilst Karen and Sharon went to the post office and Sainsbury's.  Kept going all afternoon with a couple of dips.  Then Rebecca turned up as well, but I kept going.  Great to see Rebecca, her caring personality always lifts me.

So it has been a busy day, as well as all the visitors an over bed table and air mattress were delivered and loads of other things have been achieved, well done team.  I was worn out and dropped into a morphine induced snooze late afternoon.  Couple of weird points where I had a conversation about non-existent loaves of bread, but that's morephine.

Lauren and Ian have just called round to check we are alright :-) which we are.  Think I am going to sleep on the recliner tonight.

Never had such a good bad day

Had some more great visitors today and went out in Ian's car.

We had said on Friday that we should make the time to do. It hurt all the way, but we were out abut half an hour so I can do reasonable runs out.

Not sure where to sleep tonight. I tried to go to bed but couldn't get to sleep and ended up On the recliner in the front room. Physio and Doctor told me not to sleep in chairs, but if that's where I am comfortable, that's where I am sleeping.

Thanks Frances, Chris, Jude, Bella and Sam great to see you and sorry Simon but we were tired, we don't normally both fall asleep on the sofa when you call in.

Nearly time for bed. I wonder where bed will be????
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Bad night, but great day.

I struggled through the night, the tumour was grinding on my bones and I think I may have lost some of the background pain killer when I threw up. Anyway I did get a few hours sleep here and there in between thrashing about in pain. Unfortunately I kept Sharon awake as she was worried about me and is in charge of dispensing my morphine.

Today we have changed to the slow releases morphine which are 10mg and mean I am on morphine all the time and if that doesn't overcome the pain I can top up on oramorph. Going to start the stronger laxatives tonight as the current ones aren't working.

We were both up reasonably early but I couldn't move much until Sharon reminded me I was expecting visitors. Lucky, the world's coolest dog, has come to stay and Graham and Pat were making the trip from Stoke to see me.

Lucky turned up about 10:15, I was still in bed, but up by the time Graham and Pat arrived around 11:00. We had a pleasant time chatting, eating a light lunch and drinking coffee. Lucky enjoyed laying on the floor cushion snoring.

The day was topped off with a visit from Andy, who was on his way home from Vision and bought chocolate. There will only be a couple in the box I fancy, but I am sure there will be plenty of help with the rest.

Hope tonight is better.
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Not much to report

Fairly sleepy day. Had a shower, went back to bed, got up before lunch. Lauren has re-arranged her work hours so she can be free Friday afternoons. So she came round to keep an eye on me whilst Sharon popped into town to sort out bank accounts and do some odds and ends. She is such a good girl.

We finally got confirmation from the hospital that I didn't need to go to an appointment at 4:00 today, they would call me instead. Dr Pratap rang about 7:15. I reported all my new symptoms and changes but she made little comment. She has discussed me with the doctor at the hospice and there may be a radio therapy option that could offer some pain relief. I showed great disinterest and even less when she said it has about a 25% success rate. I don't think it is an option we will be pursuing. We have left it that she won't be seeing me in clinic unless I ring and make an appointment.

So, it looks like I am in the care of my GP, my Macmillan nurse and the hospice.
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New post on the auto biography

http://gwautobiography.blogspot.co.uk/

A Good Bad Day

Felt OK first thing.  Woke about 5:30 am but went back to sleep.  Eventually decided to rise about 11:00.  Showered and got dressed and a pain spasm hit.  Dosed up on morphine and rode it out.   John and Geoff had both said they would pop in to see me, which means plenty of good motorsport chat.  John  turned up first and I was still upstairs at the end of the morphine.  We chatted for a while and eventually I summoned up the energy to get going.

I know Geoff through Land Rovers and John through classic trialling, but after introducing them to each other I discovered they have shared friends from the past. Had a good chat about trials cars, greenlanes and life in general.  They have both offered any help and support they can give, ranging from a phone chat to a lift through the deep snow we are promised to get to the hospital. It is so good to be surrounded by good friends.  Both asked if I was up to receiving visitors and I told them both, real friends like them are always welcome and I can always tell real friends to go home because I am in pain/tired/nauseous or what ever.

Sharon and Lauren were supposed to be going to the theatre in Oxford again, but I was a bit nauseous and sleepy and whilst I was asleep Sharon decided not to go and sent Lauren and Frances.  I told Sharon on Monday that there would come a time when she had to make decisions without me, I thought she might have got the first one rights and left me at home snoring and puking with Ian.  No, she made the right decision, she would not have been happy sat in the theatre having left me at home in that state.

Another real friend called in for a cup of tea, Chris.  He had been playing violin with Glyndebourne on tour in Norwich and was on his way to Oxford, but he found the time to call in and drink tea and chat.  He has promised to call in when passing.

After I was sick, I felt a lot better.  I bet you all wanted to know that.  We have got the doctor to prescribe a stronger laxative as I have run out of room to eat anymore.

Andy was working at Vision today and rang me and passed me round the A team who were on duty.  Great to catch up with them and they miss my smiling positive attitude.

Ooer

Had a really good day. Woke up about 8:15 and was raring to go. Took my medication and the morphine kicked in. So I dozed until about 11:15 and then showered and got up

Aud and Ken came down to see us and I kept going. Aud is a qualified masseur, so I had a foot massage and Sharon had a back massage. We invited them to stay and eat with us, I tried to help the chopping with Ken in the kitchen but the pain started. Interestingly I noticed early, got flat out in the recliner took some oramorph and it didn't develop into anything more than a twinge. We enjoyed a team effort vegetable biryani.

After Aud and Ken left Simon turned up. I was in pain and realised I hadn't had any afternoon paracetomol. Got those down me with the dose of oramorph and dozed on the sofa whilst Simon chatted.

So I have been busy all day, not had a pain attack and kept going. Roll on tomorrow.
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Another day, more pain, more sleeping.

I did 5 hours un interrupted sleep last night and then dozed for a couple more hours. Was feeling pretty good, the different pain killers were making an impact. They have changed the feeling to a dumb ache rather than its previous sting.

After showering and dressing the big pain kicked off. I dosed up on morphine and stayed in bed. Penny turned up, as expected, and had to watch me thrash about and mutter through the morphine. She does a good line in nursing though, so she has been added to the standby carer list.

Spent the early part of the afternoon in a morphine mist. Got up about 15:30, Lauren called in and sat with me whilst Sharon went to the building society. I am putting all my accounts into joint names to make things easier in the future.

Also had several phone calls, emails and facebook messages offering help and support. Thanks to all of you. We will be making use of your offers.

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Motorsport it!

I was discharged from hospital with a folding backrest, that, I hoped, would enable me to sit up in bed whilst Sharon slept.  A quick test on arrival home said it would work if I was under 5'4" and weighed less than 10 stone.  Even extended and modified, it seemed unlikely to work for Sharon and me in bed together, but it had to be worth looking at for use on my own in bed as I have been trying to sleep with about 7 cushions.

So Andy had a quick look and Cornermotorsports went to work to produce this.

It comes complete with a Land Rover Station Wagon Rear Badge.  Does the job.

My GP, Dr Lourenco was here for about 45 minutes this morning.  We went through all the pain killer options and I think Sharon is clear on what I can have and what we should do if they don't work.  Have decided to start the Gabapentin tonight and she has left me a prescription for Dymazopan, lets see how it goes.

Sharon and I chatted and cried about music, format and speakers for my funeral.  The hospital chaplin got me thinking about it and it is starting to come together in my head.  Couple of other people I need to speak to, but it is getting there. 

Had another pain attack an hour or so after she went.  I got up, had a shower sat on the bed to put my socks on and away it went.  7.5mg of Oramorth overcame it and I then slept up until Mandi, my Macmillan nurse, turned up about 3:00.  We had a very productive session with Mandi, establishing what support will be available and how we access it.  We also completed my advanced care plan, which should keep me at home as long as I can be treated there without causing Sharon and Lauren too much stress.  We are all agreed that is the best place for me and we will do all we can to achieve it.  Mandi is in full support.

Another one that was all going so well.

Up at a reasonable hour.  Abluted, I have even got my bowels moving a bit past all the morphine.  I know you probably didn't need to know that, but it is the chemo blog and it is about my health/lack of it.  So I was feeling good and listened to The Strypes album.  Fances and Oliver came round, was good to hear a bit about Oliver's trip to NASA and I look forward to seeing pictures and hearing more.   Made Frances 'OOOO' and 'Cor' a bit by going through some of the pictures I have started collecting for the Auto Biography, which I will write some more of next time I feel good.

About 15:45 we decided to make the wheelchair and gas bottle expedition over to Mum's.  All went well with organising and loading, Sharon nearly tipped me out down one of the kerbs but we will get the hang of it.  Then whilst at Mum's the pain started.  Now, if I can't sit in the wheelchair without going into severe pain getting out and about is going to become a BIG issue.  Decided to come straight home, dosed 2.5 mg of morphine before leaving and Sharon pushed me home, by which time I was in agony.  Straight up the stairs and onto the bed.  After 30 minutes the morphine still wasn't kicking in, so I had another 5mg.  Sharon rang 111 to get advice on how much morphine I can use and what alternatives there are.  Lauren turned up as expected and she held my hand whilst Sharon was on the phone.  Eventually, either the morphine kicked in or the pain went, I don't know which.  In the middle of it all I had to sit on the loo again and hoped that this might give a clue as to what causes the pain, but no such luck.  Slept for a bit to get over it and then got up and eat a very small roast lamb dinner, feeling pretty good again by 7:30 pm.

My Macmillan nurse is coming tomorrow, we have lots of questions for her and hopefully my GP will be doing a home visit too, so there will be lots of painkiller questions for her.

If I can't cope with the wheelchair across to my Mum's I will have to go to my hospital appointment on Friday by ambulance.  Not a thought I relish.

Pattern Emerging.

Felt good. Got up. Dispatched Sharon and Lauren for a haircut and Ian turned up to babysit me (which he did an excellent job of, he can come again).

Showered, got some clothes on and made it to the sofa. After a while the pain and the cold sweat set in so I went back to bed. Ian joined me, not in bed you fools, upstairs and did an excellent job of measuring the morphine, had he not been here I would have been drinking it from the bottle.

He also took the phone calls and txts from all the people checking I was OK without Sharon, thank you all. Everything calmed down again in about an hour and we moved in front of the tele to watch a DVD about Tony Pond lapping the Isle of Man TT circuit with an average speed over 100mph in a Rover Vitesse. Awesome piece of driving.

My brother and his other half turned up mid afternoon and we sat and chatted about new houses, moving house and many other things. Really nice to see them again. Sharon and Lauren got back about 5:30 and joined us. Norman and Lesley left and Lauren and Ian went home to test their newly installed gas cooker.

Simon turned up for a cuppa and a chat. Sharon cooked us up some sweet and sour chicken and rice. Everyone has gone now and we are on the sofa having a hug. Some people want so much from life. I am pretty happy with what I have got. Who could ask for more than a loving family, caring friends and a daughter who's boyfriend makes excellent lemon tea.
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OOoooooUuuuuuuucccccchhhhh!!!!!!!!

Got up mid morning after Sharon and I had breakfasted together and felt really good after a shower. Decided to go and tidy up my outlook inbox and switched on the office computer. Sat in the chair about 5 minutes, my leg started to go numb and twitch, so I moved back to the bed, but it was too late. Another BIG pain attack which took about 2 hours (and loads of morphine) to get over.

I have been fine since. We had our oxygen installation checked and got answers to some technical questions. Also found out that we can visit anywhere in Oxfordshire and take the condensor with us. Watch out Oxfordshire.

Had a long chat on the phone with Mark. Really nice to catch up. Would quite like to see him, not sure that between us, we can be well enough to do that.

Andy called in to visit, really nice to see him. I don't think I have ever seen him sit in a chair so long and not fall asleep. Must have been the noise Sharon was making with the iron.

Sharon also cooked a fabulous lasagne for tea, which was just what I fancied and Lauren joining us made it even better. Would have liked a large glass of Chianti with it, but I am not sure how the other drugs would get on with it.

Since then I have laid on the sofa laughing at Friday night comedy with Lauren. Spoken to Simon on the phone and not moved much at all.

Bit concerned about the pain attacks. If they are bought on by sitting in a particular position will I be able to sit in the wheelchair or a car? I liked Andy's solution, borrow his American camper. Sharon didn't seem to keen to drive me round in it. Shame really as it has its own on board generator so we can take the oxygen machine..........
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