T+34: A taste of golf

This morning Rose and I went to play golf on the par 3 pitch and putt at our golf club. I am not strong enough to take a full swing, but I chipped onto the green from about 35 yards using an 8 iron, and then putted. Also, I still needed a buggy, even though the distances are much smaller. It was really great fun, but I overdid it a bit and was very tired when we got home. We had a small competition, Rose starting from the tee, and me starting with a chip; Rose won by two shots.

On the way home we visited Bryan Lewis (our golf pro), to congratulate him on his son's performance at the Open. It was nice to see him but I was keen to get home so we did not stay long.

After my clinic visit on Monday, the doctor told me that I must drink three litres of fluid a day, rather than two, otherwise the immune suppressant drugs will become too concentrated in my blood. It is a real struggle to drink this much, but I am doing my best to comply. I am not sure how long I have to keep it up - maybe for the next two months (although I hope not).

I am pleased that more then a month has passed since the transplant. Just two more months to go until I am supposed to be past the worst of things.

T+29: A day at the golf club

Today our very good friend Howard came to play golf with Rose at our club, and like before (with Kevin) I followed them round in a buggy. It was quite ambitious, as I am nowhere near as strong as I was at Easter, which is the last time I did this, but I was keen to get out of the house and do something.

Here are Howie and Rose on the second tee:

and here I am inn the buggy

I had a great time, and both Howie and Rose played well, especialy Rose who shot gross 83, one of her best ever rounds. I managed to attend the pin on most of the greens, but it was quite tiring. We had a coffee in the clubhouse afterwards, and we have just eaten fish suppers from the chippy. So right now I am tired and full up!

Health wise, my worst complaint is that I still have very little appetite; I long to be hungry! I think it is the cicolosporin (immune suppressant) that causes this, so I have to put up with it for 2 more months at least I think. However, my strength seems to be returning little by little; last week I could not contemplate doing what I did today.

T+27: A nice surprise

Today I got a nice surprise delivery

Not the cat, but an "edible bouquet". It is a beautiful arrangement of strawberries, some covered in white, dark and milk chocolate. It is a lovely gift from Hilla and Yaniv, so many thanks to them. We shall enjoy eating them I hope.

Clinic on Monday was a very long day indeed. I had my normal meeting with the doctor at about 10am, but then we had to wait until 3pm to get a pentamidine nebuliser treatment (breathing in the drug) that stops lung infections. So 5 hours of waiting around. I also got a unit of blood as my haemoglobin was a bit low. And they removed my PICC line, on the grounds that it is just an infection/clotting risk, and I don't really need it anymore.

My health is improving I think. Today I went for a walk to the shops with Rose. My appetite is still not good though, but I am not as weak and tired as I was. I have a mild rash on my chest, which is GVHD related, but the doctor says it is OK as long as it remains mild.

I have started (re)reading Catch 22. It is just as good as I remembered. It is a bit of a boys book, but if you have not read it, I strongly recommend you do.

T+24: Steady progress

I don't have much to report, but it is Sunday afternoon so perhaps it is time for an update.

I am still feeling a bit down, time still dragging slowly. It has been a pleasure to have the golf and the tour to watch, especially the golf. The young amateur Tom Lewis is the son of our golf pro Bryan Lewis, so it has added extra excitement. The afternoons will not be the same when the golf is over.

I am managing to drink the 2 litres I need each day, but it is a constant struggle. My appetite is still poor, but my taste is OK. This means that when I eat, I can get some enjoyment, even if it is a struggle to get started. I have not had any wine since the transplant; I don't have much desire. Perhaps strangest of all is that I have no desire to eat bread (previously a favourite of mine). Toast is OK, but bread just seems to stick in my mouth.

I am wary of visitors, because I am afraid of getting a viral infection. I would like these three months to pass as uneventfully as possible. The doctor says that things are going very well, and I want to keep it that way. I am hoping for some improvement in my health during the course of the three months, the sooner the better!

T+20: A long slow process

On Monday I had my first clinic appointment. The hospital sends a car to fetch us, and take us home afterwards. Clinic is just giving blood, and a chat with the doctor, so not much to it. I have been told I must drink at least 2 litres of fluids every day, and this is quite a chore. The consequences of not doing it can be quite severe though, so I am doing my best. Basically it means 10 glasses of water or cups of tea across the day, plus some extras.

I am still very tired, and spend much of the day in bed. I have been enjoying the Tour de France; some very exciting finishes. Tomorrow the Open starts, which will cause a clash, but since Bradley Wiggins retired I am not so bothered about the mountain stages and the GC. I hope Cavendish hangs on to the green jersey.

My stomach cramps have subsided, so although I have no specific complaint, I feel generally lousy most of the time. Thanks to all of you who have wished me well. Pete popped round for a visit, and Babs and Nick gave us a nice present; it is good to know people are thinking of me.

Tomorrow I have another clinic appointment. This is going to be a long slow process ...

T+17: even more tired

I think I will stop posting every day, as my days are rather dull. Tomorrow I am off to clinic.

It is a struggle getting through the day. I hope things will improve rapidly.


- Posted using BlogPress from my iPad

T+16: Tired

I am constanly tired, and my day consists of some periods up and about followed by a lie down! They did tell us I would feel like this, but it does not make it any easier. Time drags out across the day, and especiallty the night. I am still carrying excess fluid, which means I need to wee approximately every hour, night and day. The interrupted sleep pattern does not help with the overall feeling of tiredness.

I spent some time lying outside in the sun, which is very pleasant. The weather is quite variable at the moment but a few minutes of hot sun is like a tonic.

T+15: Home

I am home. Transport brought me here this morning. I am still quite weak and tired, but it is much nicer being so at home!

Rose was playing golf today, and played quite well. I spent the afternoon quietly, watched a bit of golf and the tour, and dozed off a bit.

The next three months will see me going to clinic once or twice a week, on Mondays and Thursdays. The hospital will provide transport to get me and take me home again. Over the course of these months I hope to build my strength up, and avoid being readmitted to hospital. One thing in my favour is that both Harry and I are CMV negative, which is the most common cause of readmission.

I feel that I am beginning the home stretch ...

T+14: This phase is ending

The doctors have decided to discharge me tomorrow! So tonight's the end of the second phase of the transplant. Transport is booked for 10am tomorrow, and I will be back in clinic as an outpatient starting on Monday.

Rose came this morning, and we went for a walk to the cafe for a coffee and a cake. The weather was foul, very wet, but still it was worth it. Rose cannot come tomorrow as she has a golf engagement, so I will be travelling home alone.

I have been very tired all day, and spent most of the day dozing. I think this is how the next few weeks will be at home, but at least I should be able to eat better.


- Posted using BlogPress from my iPad

T+13: A quiet day

I slept poorly last night, but at least I managed to shed a couple of kilos of fluid. Time is dragging out very slowly for me now.

This morning I went out by myself to the shops, and got some more water, and bizarrely some pickled cucumbers as an impulse buy. I watched the TV for a bit, and then just dozed until lunch. I am still not comfortable, but much better than a few days ago. Lunch was terrible! This afternoon I tried to watch the cricket, but reception over the 3G network is poor today, so I have given up to write this blog instead.

Rose is playing golf this this afternoon, so I have been all alone today. The doctors are still very pleased with my progress, and are considering discharging me sometime this week. I have my fingers crossed.

Dinner was also terrible. I can't seem to eat savoury food in the hospital. I had yoghurt and ice cream. Another long night awaits ...


- Posted using BlogPress from my iPad

T+12: some relief at last

I slept badly, still totally bloated and not much sign of relief.

The doctors came and said how pleased they were at my progress! But I felt awful. It'll get better they said, same as the last few days. They even talked about sending me home, but were vague. All my meds have moved from IV to oral at any rate.

Rose came to visit, and we managed to exit the hospital and go for a coffee at the cafe over the road. It was quite hard work, but everyone says I need to exercise somehow.

I have spent the afternoon dozing, and somehow the magic has started and I have begun to wee more than I am drinking, I.e. Get rid of the excess fluid. I hope,it continues! I am still very tired, and don't have much appetite, but shedding the excess fluid is my top priority.


- Posted using BlogPress from my iPad

T+11: Yesterday

I am swollen beyond belief, and cannot do much. I am continually uncomfortable from the pressure of all the fluid. My vital signs are OK, and the doctors say it is a awaiting game.

Blogging may be haphazard for a few days.


- Posted using BlogPress from my iPad

T+10: it feels like a transitional phase

My hands and eyes are still not good, and my body is still retaining fluid, the diarrhoea frequency has dropped to manageable levels so I am on on quite a lot fewer meds than before. Most of the symptoms are now likely to be from gvh rather than the conditioning chemo, so may require different treatment regimes.

The nausea continues to bubble under, preventing me from eating much sold food.

The doctor says things are all going as well as can be expected. After a few days the engraft will be complete, and maybe we can think about getting rid of the fluid and controlling the sickness.

Rose visited today which was much appreciated.

- Posted using BlogPress from my iPad

T+9: Some improvements

I did no sleep well again, and awoke at about 6:30. Rose came to visit at about 10:00 and we chatted and did the crossword some more.

Rose noticed that I have a rash on my right foot, which I do. The doctor came at 12 and examined it. The "new" rash did not concern him; probably as a result of a pool of platelets i'd had the previous day. But he did look more closely on the palms sand soles and prescribed a steroid-baseed topical cream. Thus far, and it is early days, it looks promising. I still cannot type for toffee :(

The cause of the painful rash is probably gvh. This is very good as it confirms that the graft cells and working. My neutrophil level jumped from 0.1 to over 1.0 today! I have been told the these counts should go up and and down a bit until the donor cells have all engrafted on my bone marrow.


- Posted using BlogPress from my iPad

T+8: Still sleepless, painful hands and feet

The oedema and the painful rash on my hands render them almost useless. It took me over five minutes to write that.

The diarrhoea is controlled with laperamide and Buscopan, but the oedema continues.they gave a small tablet which is supposed to reduce it.

My worst problem right now is lack of sleep. They have changed my drug regime to try and help it.

With the difficulty typing, and the lack of sleep, I may miss some posts. I will try to write a few words if I can.


- Posted using BlogPress from my iPad