All quiet at home

Not much to report today. The nausea is still bothering me, but I hope that it will eventually diminish. I am managing to maintain my weight at about 84kg.

Whilst at home in this quiet time, I may miss some blog posts because I have nothing to report.


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Nausea returns

Today my nausea seems to have returned, despite my taking three different anti-nausea drugs. It is annoying because it makes life a lot harder when you have to force yourself to eat, rather than enjoying your food. I have had a couple of small glasses of wine with dinner last night though, which is some compensation!

This morning we had small walk to the postbox, and I felt fine - the blood transfusion has certainly done the trick. This afternoon Val rang for a chat, but otherwise we have just been watching the golf.

More blood

We got up bright and early to get to Ambicare for 9am. They took a sample to cross-match and rang the blood bank to say it was urgent. The blood arrived just after 11, an it then took 4 more hours to transfuse it (2 hours per unit).

Whilst there, we did a crossword; it took most of the time to do! It was nice to have Rose with me and I very much appreciated the company.

Now we are back home, watching the golf. Later, just like the other countless millions around the world, we will watch Barcelona play United.

I hope that the blood will make life more comfortable for me.



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Blood

As I have written previously, I am struggling even to go upstairs, and I guessed it was because my red cell count was low. Today, the district nurse came to change the dressing of my PICC line, and to take some blood. The nurse said she would not have time to get the blood analyzed today, so Rose and I dropped the blood samples at my local hospital at about 12.

I just spoke to UCH and they had the results; my haemoglobin is only 7.6! I feel it when it is below 8.5, so this is confirmation of the cause for my tiredness. So, tomorrow (Saturday) we will go to Ambicare, and I will get a transfusion of a couple of units of blood. It will be rather a slow day (it takes a few hours to get the blood, and then 2 hours for each bag to go in), but this will hopefully solve the issue.

I am managing to maintain my weight (in fact I put on 0.2kg), which is essential. The more I weigh before the transplant the stronger I will be after it.

This morning Chris rang for a chat, which was most welcome. I spent the rest of the day watching the golf (BMW PGA at Wentworth).

A slow day

Today has been a slow day. I could have gone shopping with Rose but I felt too weak for it, so I stayed at home. I finished my book (I am reading/rereading the Foundation books by Asimov; 6 down, 1 to go). Aside from that I am feeling OK, struggling to gain weight as ever.

Yesterday, my brother Harry had his medical for the transplant. It was quite thorough by the sound of it. He had a chest xray, ECG and they took 16 samples of blood! The full results will be available in a few days, and my fingers are crossed. I will take this opportunity to thank Harry again for being a donor - he is a real life saver!

My next contact with the transplant team is on 2nd June (a week from now) when I meet the consultant in charge.

Quizes and puzzles

I am quite weak, I think my haemoglobin is low, because I get dizzy when I stand up, and get tired very rapidly. However, my tooth socket continues to heal nicely, so I am very glad that I had the tooth extracted. Hindsight is a wonderful thing. Also, the haemorrhoid is calming down, so it is really just the anaemia that is preventing me from completely enjoying myself. I am finding it hard to maintain my weight again; must try harder!

When Ray came to visit he brought me a whole load of quiz and puzzle books, and it is fun to try them together with Rose, especially the "riddle" type. Some of the mathematical puzzles are really difficult - you need to remember school maths!

We are having home-made pizza for dinner, one of Rose's specialities!

A trip to the supermarket

I slept well, in our bed. You cannot beat home luxury (especially as the mattress is quite new and we did not skimp!).

Rose got up first and went to play golf; I finally dragged myself out of bed at 9 o'clock. I cannot have breakfast cereal with my newly extracted tooth (I have to avoid crunchy foods), so I went to the supermarket (driving my car there) to get some yoghurts. There are surprisingly few full fat ones - the shelves are bursting with low fat stuff, but I did find some. It's only for a few days ...

I passed the time reading and playing bridge on the iPad, and had a nice lunch of warmed up leftovers. After lunch I had a nap. Rose came home at about 2:30pm, and she had a good round - gross 85, with 39 on the front 9! She won her division for the first time this year I think. Well played Rose!

Health wise, my tooth socket is healing nicely, and I have not had any pain from it. The nausea is under control ... just. I hope it continues that way.

Tooth extaction

I did not sleep well, despite being disconnected from the backpack.

I checked out of the hotel and went over to Ambicare at 9am, and got some good news - they could do my CT scan sometime before 10, but I would have to wait over at "Imaging". I went over at 09:15, and after a very short wait was taken for my chest CT. I was back in Ambicare at 09:45 and then went for my dental appointment.

Now, I had a "problem" with my upper left 7th. The dentist who extracted my wisdom tooth recommended extraction, and so did the UCH dentist back in January. Both times I declined, as I was in no pain from the tooth. This time, the UCH dentist was insistent that it must be dealt with before my stem cell transplant, as there was a strong likelihood it would become infected whilst my counts were flat. So ...

... at middday I went back to have the tooth extracted. I was feeling particulalry nauseous today, and worried I would gag when the dentist poked around, so she perscribed diazepam as a mild sedative. They were running late, but finally at about 2pm I got the diazepam - great drug! After waiting a while we finaly got to the procedure. The extraction went OK, the tooth came out quite easily and cleanly, but now I have to live with the after-effects for a week or more! This is not something I really need right now, but on the other hand it means things will be better for the transplant. The dentist only does clinic on a Monday, so I have another appointment to attend on the 6th June (that makes three, 2nd, 6th and 7th).

So now I am back home. Many thanks to Rose for coming to pick me up, and for her forebearance whilst I waited and underwent the dental procedre.

I have more drugs than I ever have had, and I thought I would share the list with you to give you an idea:

• Lanzoprazole: protects the stomach linng, once each day in the morning
• Imatinib: A treatment drug that rectifies the chromosome balance, once each day
• Ondansetron: anti-nausea, three times a day
• Domperidone: anti-nausea, four times a day
• Cyclizine: anti-nausea, three times a day
• Itraconazole: prevents fungal infection of the lung, liquid form twice a day on an empty stomach
• Acyclovir: anti-viral, three times a day
• Septrin: anti-biotic, twice a day at weekends only
• Deltaparin: prevents blood clots, one syringe injected each day in the belly

In addition I have an antibiotic and a mouthwash following the tooth extraction, and some cream for the haemorrhoid!

It is not easy to remember to take them all - even with a checklist! As most of them are prophylactic it is not so crucial if I miss one.

The backpack is gone

I have just been over to the hospital and been disconnected from the backpack. I had a slight scare this morning, because the creatinine level in my kidneys was too high. They thought I would have to spend another night with hydration (ie connected to the backpack) to clear it, even if the methotrexate had cleared. Fortunately, I got good results in both areas, so I can spend an unencumbered night.

Tomorrow, I will checkout and then go across for a dental checkup. It is the first of the "pre-transplant" tests. After that, I will be off home. There is an outside chance that I might get a chest CT scan as well, otherwise I will have to come back for it. It is to confirm that I do not have a fungal infection on the lungs.

The transplant is on June 23rd, and the pre-chemo starts on the 15th. This means that aside from a few trips to London for tests I will get three weeks at home.


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Lunch with Christine and Simon

Last night passed OK. I have to set an alarm for 2am to take some drugs, but with the weeing it does not make that much difference!

Today, Rose stayed with me in Ambicare in the morning in order to meet with with Christine and Simon, our globetrotting friends. They are soon off to Indonesia, but I can't say I would envy them even if healthy! Rose had a coffee with them in Pret's, and then left to go home, and the three of us had lunch in Ask:Italian. It was best described by Simon as "adequate".

This afternoon I had a nice nap, watched a little bit of the golf, and then the Heineken Cup (rugby) final. Saints started really well, and took a commanding first half lead, but they ran themselves out and looked like schoolboys in the second half. Leinster trounced them!

Health wise, I have developed some gut problems, caused by the methotrexate, and have developed a small haemorrhoid, also caused by the drugs. Both these make for uncomfortable sessions in the bathroom. The nausea seems to have abated somewhat, but I won't really be able to tell for sure until this hydration phase finishes and I am back home, which will hopefully be on Monday.


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Rose comes to visit

Another day with the backpack. I am finding it heavy going this time. Time is passing slowly! Today I had the Peg aspariginase, the last chemo drug of the cycle. I got out of Ambicare at about 2pm and after speaking to Jeremy on the phone I had a nice afternoon nap.

This evening Rose has visited and we just dined at quite a swanky restaurant (using the taste card of course - 50% off). Then she reminded me I had not posted to the blog!

My haemoglobin has fallen a bit, so I get out of breath easily. They are going to give me a unit or two on Sunday to make things better when I go home.


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A long day in Ambicare

This day (day 15 of the treatment cycle of 30 days), is a long day, just as day 1 was a fortnight ago. I arrived at 8am and it is now 5:30pm - I expect to leave at 6:30.

I did not sleep well last night, and so I am pretty tired now. I will be hooked up to fluids in the backpack for the next three days, and so will not sleep well for while (with all the weeing that is required). I still feel a bit yukky, the anti-sickness is still not properly sorted. But I am fooling myself that things are improving ...

I got lots of information today from my doctor, pharmacist and also the transplant nurse specialist, but I forgot most of it! If it is not written down it is not good for me in my current state. The chat about the transplant was interesting, and I do remember this much: she said that the three months post transplant are the worst, worse than the immediate aftermath in hospital (which lasts about 6 weeks). I am trying to focus on this time next year, when I will hopefully be pretty fit, but it is hard to see past the immediate future! We get to see the consultant on June 2nd, and this is when we will get to know the probabilities of survival given my exact condition and donor status. Generically the chances are 75% to survive the transplant.



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Back to Ambicare

Rose dropped me just before noon, and I had an easy time today, just giving blood, getting a new PICC dressing, seeing the doctor and some paperwork. I start tomorrow at 8am.

At about 2pm I checked in at the hotel, but the room they allocated was at the front, by the flagpole (outside) and the elevators (inside). I asked to be moved, but the next room was not suitable either. Finally, at the third attempt I got a decent room. A few minutes ago, some other people tried to get in! They had obviously double booked the room somehow - I am sure they will sort it out.

I had eat-in fish and chips for lunch in the local chippy. Amazingly it was full! They have a small dining area, but most of the tables were taken. It is obviously more fashionable to eat in at the chippy then I thought!


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Last day at home

Today was my last day at home before going back to continue my chemo cycle. Tomorrow will be an easy prep day - the treatment starts again in earnest on Thursday.

I spent the day quietly, doing puzzles and reading. Rose played golf this afternoon (just a social round at a different golf club). My  nausea is getting better - I don't feel as bad as I did earlier in the week.

Christian, another of our French friends rang this afternoon, having seen my recent post about Thierry. It was really nice to hear from him. Margaret also rang, and nearly managed to come for a visit. She is babysitting her daughter's kids but sadly could not get away in time.

I bought an external 2 terabyte disk from Amazon last week and it arrived today. 2 terabytes! It is slightly smaller than my existing 500 gig drive, and of course uses less power. Where will it end,  I wonder?

A trip to Shropshire

Today we drove up to Shropshire to see Rose's parents, and have lunch with them, and her brother Peter and his wife Sue.

The roads were quite busy; it took two and three quarter hours each way. Normally, I do the driving, but today Rose drove both ways. My meagre contribution was to drive to the pub once we were there. We went to the Combermere in Burleydam and Rose and I had fish and chips (as we always do). It is really good there, and did not disappoint this time. We had a very pleasant lunch indeed.

Rose's Dad has become a "silver surfer"; he follows this blog, uses Google earth, and likes to play solitaire. I applaud this embrace of technology well into his eighties!

With the addition of cyclizine, my nausea is not as bad now. It is a shame that I have lost about a kilo in weight since I came home.


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Nausea

Eurovision was fun, but a late night; Yvonne came round to watch. The favourite in our house was the Slovenian entry. Greece's success was a mystery to us! The winners were very mediocre I think. Rose correctly guessed the finishing position of the UK.

I awoke still feeling nauseous, and so rang the hospital for advice. They suggested getting my out-of-hours GP service to prescribe cyclizine, which I duly did. We drove to the clinic, collected the 'script and got the meds. Since taking one I do feel a little better; i hope it truly makes a difference.


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Un appel de Thierry

Aujourd'hui mon ami francais Thierry m'a appele. C'etait une belle surprise et un grand plaisir.

C'est longtemps depuis j'ecris quelque chose en francais ....

... but some other time maybe! My knee is calming down; I needed fewer pain killers last night and I am hopeful for this evening. However, for the last couple of days I have been feeling nausious most of the day. I do not really understand why, as my anti-sickness regime is the same as it always has been.

I spent the afternoon watching sport - FA cup final on one channel and Leicester vs Northampton on  another. I watched the rugby mostly - a great game, dominated by Leicester and won by them.

Tonight Yvonne is coming over to watch the Eurovision song contest with us. It should be a merry evening.

blogger.com has been unavailable

I am sure I posted yesterday, but it seems to be missing, and blogger.com has been unavailable all day, so now I will catch up ...

Yesterday was a restful day. I worked out a pain relief regime for my knee that seems to work. It is bizarre that the pain only gets worse in the evening/night, but whatever! I have three pain killers that can be taken together; paracetamol, tramadol and ibuprofen. I take them responsibly of course:)

Last night we watched the second semifinal of the Eurovision song contest. We are big fans of the show - the final is tomorrow, and we will be watching. We normally have party food and a bellyful of wine to accompany it, but this year I cannot drink to excess, mores the pity!

Rose played golf in the Lady Captain's charity event today, and her team came second (with the same score as the winners, but losing on "count-back"). Rose also got "closer to the pin" than the general manager on the 18th hole (par 3) and won a golf ball. Only a couple managed this feat, so well done to Rose.

This morning I had a visit from the district nurse to take blood and change my PICC dressing; it went smoothly enough.

Resting my knee

I had quite a painful night with my knee, so I decided to try resting it today, to see if it eases things. I also rang UCH and discussed it with them. I still rather optimistically hope that it will calm down if I treat it right. I have paracetamol, ibuprofen and tramadol for pain relief, and the hospital confirmed that I can mix and match them.

I have spent the day watching the tennis, and reading. Not much else to say!

Peaceful afternoon

Rose's car got serviced OK, and we spent a peaceful afternoon watching "The Apprentice" which we recorded last night. Still one of our favourites after all this time. The guy who got fired deserved it!

Not much else to report. The knee is still giving me pain, and it tends to flare up in the evenings, so I am trying to manage my pain relief accordingly. I will let you know how successful I was tomorrow.

One slightly depressing thing is that I am losing a bit of weight, even though Rose is feeding me exceedingly well - I need to eat more junk food!

Posting at home

Sorry there was no blog post yesterday, but sometimes it's hard to find the time when at home! It was an unremarkable day, the highlight of which was my walking into the town centre to the bank whilst Rose was playing golf.

My leg pain was actually caused by knee pain, which continues to be a nuisance. It is an old problem of mine, this left knee. Funny how leukaemia seems to bring out all my old conditions. I have had problems with this knee since my twenties, but it was never serious enough to,warrant any action. I very much hope it calms down again soon.

Today we are going to get Rose's car serviced while-you-wait. The weather is not so nice, so I guess we picked a good day.

I sent a heavily edited version of my Dad's obit tot the Guardian newspaper (a national paper in England). They have a section called "Other lives" on their on-line paper that has obits of non-famous people. You can read it here.

I have one more week at home; I go back to Ambicare next Wednesday.


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A pain in the leg

On the way home from the hospital I developed a pain in my left quad. It got quite bad, and I checked with the hospital that it was not a side effect of the treatment. They said "no", and if it persists I should just go to my local A&E! I have taken pain killers and the pain has subsided. For all I know it is psychosomatic - but it still hurts!

Brandy is doing well, and today she was allowed outside. This was nice because it meant we could go outside too!

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Pump up the volume

It is 2pm on Sunday. I am sat in Ambicare all alone, apart from the two nurses. I am hooked up to fluids, always fluids. I am waiting for the results of methotrexate level blood test which will arrive at around 4pm. If they are good I can go home.

Last night we had some fun and games with the backpack pump ...

Rose and I had a nice meal at the Lebanese restaurant just off Goodge Street. We were having a "normal" wee-interrupted night, when Rose woke me up at about 3:40 to say the pump is beeping, which it was. It was not the alarm, just a beep. When I checked it was because the rechargeable battery that powers the pump was running out of juice. There should be a mains cable in the backpack, but there was not! So, I rang the Ambicare mobile, which is held by the nurses on T16, and explained the problem. After a bit of panic, they managed to find a mains cable, so we got dressed and went over to the main hospital. It is surprisingly hard to gain access to the hospital at this time of night, but we managed, and we got the mains cable. After proving it did indeed solve the problem we returned; luckily, at no time did the battery fail!

However, ten minutes after we thought the problem was solved, the beeping started again. It is now 4:15 and I had just fallen asleep. It turns out the mains cable has a loose wire, and we had to position it just so to get it to charge. With the drug timings at midnight and six, the continual weeing and the pump problems, neither of us got much sleep.

We also had trouble on the first night, that was more easily solved. There was a low level beep coming from the backpack, that Rose pointed out but I ignored it. Eventually, in the middle of the night the alarm sounded! The cause was the small nine volt battery in the pump that I guess powers it's memory had run out. Fortunately there was a spare in the backpack, and swapping it solved the problem.

Still, for all these woes, it is much better to have had the treatment in Ambicare than to be an inpatient. At least I could go out to eat with Rose a couple of times, and the hotel is much more comfortable ... and let us not forget the breakfast!

Fingers crossed for the results later on ...

... The results came back at 14:30, and now I am home! I have 9 days at home before going back for the second half of the cycle.


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The last night of fluids?

I hope that tonight will be the last night of fluids. We have been planning my discharge for tomorrow (Sunday) evening; it all depends on the methotrexate having been flushed from by body. Unless the level today is very high, I will check out from the hotel tomorrow morning; if the methotrexate has not cleared I can always stay an extra night.

If all is well, I will be home for 9 days, and then come back here for day 14 of the treatment schedule - one day before the next methotrexate dose, just to make sure everything is OK to proceed.

Rose is visiting tonight. I am very much looking forward to it ...


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Transplant

At last I have found time to tell you about the transplant timetable ...

The transplant is scheduled for Thursday 23rd June. At the end of May/beginning of June I have several tests to make sure I am fit enough for the transplant. One week before it I am admitted to Ambicare for chemo (the 15th June).

It is after the transplant that my problems begin. I will be neutropenic, and have no way of making blood cells for myself, until donor cells have started generating. This normally takes between 6 and 22 days, and the chance of infection is high - for me a racing certainty I expect. This time is spent as an inpatient of course. When my counts recover sufficiently (i.e. my donor cells are working), they will send me home. They say it takes 6 to 12 months to fully recover from a transplant.

For the first three months I will attend a weekly outpatient clinic. This drops to biweekly, then monthly, then quarterly and so on. I don't think we ever say "goodbye"! For the first three months the hospital provides transport to the clinic. It says in the leaflet that it is not unusual to be readmitted to hospital during this time. I also take a drug called Cyclosporine that suppresses the donor immune system. It means that although I will not be neutropenic, and so able to fight bacterial infection, it leaves me more prone to viral infection.

With a fair wind I could be home at the end of July, and then be reasonably OK for the beginning of November. I doubt I will be playing golf in 2011 though :(

I am very excited, and at the same time very nervous. The immediate post-transplant period is surely the highest hurdle I have left to clear. I hope I will be strong enough.

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The fluids continue

Oops, I forgot to write a blog post, so I'll be brief ...

Sleep is difficult because I am weeing so much. And I have to record the quantity and PH each time, regardless of the hour.

Today I had the asparaginase. And the fluids continue; I am still carrying around the backpack. My taste is altered - all fizzy drinks taste bitter.

I will try and write more tomorrow.


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Fluids

They were not kidding when they said this treatment involves a lot of fluids!

Last night the fire alarm in the hotel went off at 3am - it was a false alarm. 30 minutes later just as I was nodding off it went off again. Despite this I still got about 6 hours sleep.

In Ambicare, they first hooked me up to a litre bag of fluid. They then explained that I must record my fluid balance (intake versus urinate), and that I must measure the PH of my urine each time. If it is too low I take some sodium bicarbonate capsules. If it is very low I must go in and get IV sodium bicarbonate. I hope this does not happen in the middle of the night! For the next few days I wee into a measuring jug.

During the next few days I will be continually hydrated with saline that contains extra minerals, to make sure I flush the methotrexate. I carry this fluid around in a backpack; currently it is full which is 3 litres of fluid, i.e. 3kg, plus the pump and power supply - it is quite heavy! There is enough play in the line to sleep with the bag next to the bed, but showering and bathing are not possible due to the position of the bath. Oh well!

The methotrexate is a nasty drug, and they did warn me I would feel a bit yukky, and I do. I am going to Prezzo with Rose tonight; I hope I will enjoy it.

It looks like the transplant details will have to wait a little longer.


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Back to Ambicare

Ray stayed overnight, and after we said our goodbyes this morning, Rose took me into London, back to Ambicare. My final home weight was 84.8kg, so a gain of about 3.5kg or just over 7.5lb.

This cycle of chemo is called "intensification". It lasts 28 days, with only 4 treatment days; days 1 and 2, and days 15 and 16, which is a repeat of days 1 and 2.

The main drug administered on day 1 is methotrexate, a drug previously administered in very small doses intrathecally. This time a much larger dose is administered intravenously.; the problem is that it causes urine to become very acidic, which can damage the kidneys. To counteract this they give complimentary treatment to make your urine alkaline. This consists of some pills to be taken strictly every six hours, starting tonight ad midnight, and a lot of IV fluids to flush things through. It normally takes 72 hours for the drug to be flushed through the system. I think I will be carrying the fluid around in a rucksack, as it infuses slowly over the course of the day and night - I will find out tomorrow I guess!

The other drug administered on day 2/16 is PEG asparaginase, which I had on the first cycle. This should be a simple IV infusion for a reasonably short period of time.

The transplant team have gotten in touch with me, and given me information regarding the timetable for the transplant. I will reveal all in tomorrows post.

Now I just need to decide where to go for dinner!


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Last day at home

This is my last day at home beore I go back to London for more chemo. I will be treated in Ambicare, so I will be staying in the hotel once more, but it is still nothing to look forward to.

Whilst at home I have had a great time; seen plenty of friends, got stronger and heavier (now 84.4kg), had great food, and best of all spent some quality time with Rose. I suppose it is a glimpse of what life will be like after the transplant (whenever that will be), and  I am hopefully cured. Until then, at the back of mind is always the fact that I have cancer.

Today I did some household chores (ironing, cleaned bathroom) which made things even more normal as I used to do these chores before I became ill. I called the AA man and he fixed Rose's car rather trivially. It was suffering from "bore wash" (google it) - the man diagnosed it, explained his cure and then cured it. Very impressive consulting!

This afternoon Ray came to visit. Ray lives in Bermuda, and is over in the UK for a few weeks. He brought me a whole load of quiz and puzzle books - thanks Ray. We went to the local Chinese for dinner, it was really good.

Visiting Pippin

I still weigh 84kg.

This morning we went to see Pippin, the new cat of our friends Babs and Nick. Here he is:

We sat out in the garden, and Babs and Nick laid on a fine spread for us; coffee, toasted teacakes, fresh strawberries and a glass of Prosecco, which was delightful with the fruit. Nick certainly knows what wine to serve at 10:30 in the morning! We had a great chat, and left just before lunch. A big thank you to Babs and Nick for looking after us so well.

I drove us there and back. The feeling of normality was never stronger! It's a shame I have just today and tomorrow left at home, and then its back to treatment in London.

We stopped at the chippy for lunch and are now watching the telly; it is quite nice outside but we are still prisoners in the house whilst Brandy's wound heals.

Moore at Hatfield House

I weigh 84kg still, which is good.

Brandy is convalescing well, which means she is very keen to go out, and consequently a real nuisance. Plus, we feel it would be cruel for us to sit in the garden while she is locked in the house, so we stay indoors too!

This morning we went to see the Henry Moore exhibition at Hatfield House (http://www.hatfield-house.co.uk/whats-on/exhibition-moore-at-hatfield/). The weather was sunny and breezy, and they have quite a few pieces on display. We had a really nice stroll through grounds admiring the sculptures.

We have been living in Hatfield for over 15 years but never visited the house itself, just the grounds. One day maybe!

We came home and had a late lunch with some very nice Burgundy, and then we went for a kip. When I woke up I had a headache -  I must have had a bit too much wine!