D+68 - "One Step Forward, Two Steps Back* "

It's been a mixed week so far. My brother Patrick popped in on Saturday morning and together with his dog, Dylan, we went for a lovely walk through Bestwood woods, the southernmost tip of what is left of Sherwood Forest, lots of ancient trees and a favourite hunting ground of Nell Gwynn and Charles II. We ended up walking down to the winding house of the former coal mine in Bestwood village and back again. I got rather short of breath on the way back up the steep hill but I'm sure it did me good.

Unfortunately the rest of my body had other plans. I've had the runs for the past four days which is now making me much more tired. Sunday was the first day I didn't do any exercise, just too tired. I've also lost much of the weight I'd gained in the last month, grrrr! I feel very frustrated. Several of the drugs I take have this side effect so it could be one of them that is to blame. Some of the chemotherapy has this effect too so I'm spoilt for choice here! 

This afternoon we're off to ENT to see what they can do to fix my hearing. It looks like being a tiring day again. Hope it's worth it.

As I've said before,it is one flipping thing after another. Someone at rehab said it is about six months before you begin to feel you're really improving. Several of them at rehab were in and out of hospital in these first few months so I suppose I should be thankful but it isn't easy.

Off to clinic in two days so I'm hoping my bloods counts will show some clear progress. I deliberately haven't asked fo the actual numbers for three weeks knowing that they fluctuate day by day. Prof Russels looks at them and says they are alright. This time I'll ask for the details!

* Lenin 1904 book of the same name

D+64 - "Doors Open* " or perhaps "When I'm 64** "

Been to clinic yesterday for my weekly blood tests and review. My kidneys are improving, though they are not back to where they were six months ago. The Ciclosporin is nephrotoxic so this is not very surprising. Some of the chemotherapy drugs I had ten weeks ago were toxic to the kidneys as well and I still get side effects from some of them, rashes, no hair etc.

Prof Russell is very keen to get me off the Ciclosporin as soon as possible so the dose was reduced again yesterday. There was a slight mishap last week. We had a phone call on Friday afternoon telling us to increase the Ciclosporin dose slightly thereby reversing the reduction of the previous day. It turns out the wires got crossed somewhere and I should have stayed on the lower dose. A minor problem and no harm done. I'm now back on course.

I've gained a kilo in the last month so the dietician doesn't want to see me anymore but I still have to take a daily Complan build up drink and a Fortisip for the foreseeable future, yuk! We have enough in stock to last another couple of months at least worse luck.

Gradually I coming back to life, more doors are opening. I'm doing more, seeing more people and gettting out beyond Burlington Road more thanks mainly to Karine's love, care and encouragement pushing me when I need it and protecting me from myself and also thanks to the Haematology department's continuity of care and close follow up.

I'm getting to know some of the rehab group a little, I can even remember a few of their names! They are a very sympathetic and supportive bunch, always very positive which is just what I need. It's leaked out that I used to be a quack but no one has held that against me yet! The physiotherapy is quite hard work especially the upper body stuff so it must be doing me good.

Today my brother Richard called round and we went for a walk round Mill Lakes in Bestwood village. I'm not sure of the distance but I managed two circuits which is a first, so I feel quite pleased with myself. It was great to see him and to talk about everything under the sun - well it has been a sunny day!

Karine has been involved in the Macmillan 'Biggest Coffe Morning in the World' all day at the Tewkesbury's, next door. She and Janet have done both a morning and an afternoon session. It is still going on now in the late afternoon. Lots of cakes and lots of people. I went along this morning and stayed for about 45 minutes. It was great to catch up with friends and neighbours but it's difficult to follow conversations when there are so many people in the room.

Macmillan have been very helpful to us. Their booklets and leaflets on everything from Living with Cancer to AML, from dietary advice to Stem Cell Transplants etc etc have been invaluable to both of us. The are both authoritative and well written. I didn't know a great lot about stem cell transplants apart from the general principals. They are one thing but the reality of actually going through it is a completely different matter!

* Ian Rankin, "Doors Open"
** Beatles "Sgt Pepper's Lonely Hearts Club Band" of course - track 9

D+60 - "Maggie's Farm* " - well not exactly a farm

Hurray - I am 60 today - 60 days post transplant that is, so I suppose my stem cells are 60!  The rest of me won't see 60 again!

Mostly good days in the last week or so but every now and then there is a day when I'm quite a lot more tired, something to be expected but frustrating after a run of better days.

On Saturday my brother Patrick called in & Karine suggested he & I take a walk in the top of Woodthorpe park. It was a lovely morning & we ended up walking all round the park, quite a lot further than intended but well worth it.  It was lovely to spend time doing something so normal & to talk about everything from family matters, the nursing home & even Jeremy Corbyn! That afternoon Karine & I did a circuit of Mill Lake in Bestwood,  When I think that walking half way along our road was all I could manage five weeks ago the change is fantastic. The next day I paid the price, tiredness ++ but still worth it!

Maggie's Centre

We have a Maggie's Centre in the grounds of the City Hospital. It is a haven of peace & beauty in the midst of all the hustle & stress of cancer. I have only been in there two or three times, too busy being an inpatient etc but Karine has called in fairly often & is always welcomed & supported. Below is a quote from their website.

Maggie’s provides free practical, emotional and social support to people with cancer and their family and friends, following the ideas about cancer care originally laid out by Maggie Keswick Jencks.

Built in the grounds of NHS cancer hospitals, Maggie’s Centres are places with professional staff on hand to offer the support people need.

Our Centres are places to find practical advice about benefits and eating well; places where qualified experts provide emotional support; places to meet other people; places where you can simply sit quietly with a cup of tea.

The first Maggie’s Centre opened in Edinburgh in 1996 and since then Maggie’s has continued to grow, with 17 Centres at major NHS cancer hospitals in the UK, online and abroad.

The building in Nottingam is wonderful to look at & the Paul Smith interior is just right. More are being built around the country. Every cancer unit should have one.

There is more on their website - Maggie's Centre 

*Bob Dylan "Bringing It All Back Home" 3rd track

D+57 - "Rehab* "

Had my weekly clinic visit together with the usual bloodletting yesterday. Everything stable which is good news. Prof Russell reduced my Ciclosporin again and confirmed the plan was to continue reducing it at this rate so it will stop at about the end of October barring unforeseen problems. I am now down to 104 tablets per week! Karine has pointed out that this is a little misleading since for example when I go from Ciclosporin 50mg twice a day to 40mg twice a day I'll be switching from a single 50mg tab to four 10mg tabs. Nevertheless the load is going down and I don't have so many of the huge tablets to swallow. There are moments when I feel very fed with all the tablets especially first thing in the morning when there is half a dozen or more to take. I can see very well why patients don't always comply with them and feel like throwing the whole lot away. Multiple tablets five times a day and different amounts on different days isn't easy to maintain for months on end.

Prof also indicated that he would start reducing the antiviral drug in about three months times. Another sign that things are going well- so far! No MRD result yet, perhaps next week! My weight continues to creep up very slowly which is a good sign. I'm now about 6kg under my usual weight.

I still tire easily and can't control my temperature very well. I need to wear a ridiculous amount of clothing just to keep warm. I'm still full of cold and very deaf. The infection in my left ear has settled thanks to drops from the GP. I see ENT a week on Tuesday.

Before seeing Prof Russell, I did a quality of life questionnaire as part of the Figaro trial which I am on. Basically my quality of life is 'rubbish to mediocre' - those weren't the actual names of the categories for some reason! Overall though I continue to improve little by little so there is a distant light at the end of this very long black tunnel. I feel as though I've been to death's door (which with hindsight was frightenly easy, I had no idea how parlous a state I was in in the weeks leading up to being diagnosed) and have returned from that dark place by way of hell, a very rough road indeed.

After seeing Prof, Lynne the transplant nurse had me do a walking test in the outpatient corridor which consisted of walking up and down a given length at ever increasing speeds till either I or she had had enough! She gave up first so I passed!

For my reward! I was sent to the Haematolgy rehab session which started a little later that morning in the physiotherapy department. Just time for Karine and I to have a drink at the marvellous Maggies Centre which is on the hospital campus and then an hour's gentle exercise/work out (for me that is!) in a hospital gym mostly to '70s disco music though they did finish with Peter Green & Fleetwood Mac's Albatross. This was followed by tea and buns and a Q & A session for an hour with one of the haematology registrars and a specialist nurse. Karine was with me the whole time which was invaluable since I couldn't follow the conversation.

There are about 6 or 8 of us in the group and they seem a friendly bunch. Everyone of us has had a stem cell transplant for some sort of haematology cancer, mostly leukaemia and lymphoma of course. It is marvellous that the NHS provides this kind of ongoing support. It is tough getting going again after the kind of chemotherapy onslaught we've all been through and this is an excellent way of building morale and helping us to start getting back to a normal life, so important. Nominally it is for ten sessions but they are very relaxed about you staying on if you wish to. At least two of the group have been coming for a year. It is not uncommon for new side effects and problems to arise later and to have a group like this to turn to is invaluable.

Today, Friday,we went into town to have a look at a small exhibition of treasures from Chatsworth. It was great just to go somewhere different. We had lunch in town by which time I was 'pooped' and was glad to come home for a nap. Another step along the road back towards 'life'.

Next time. Perhaps something about the Maggies Centre.

* Amy Winehouse "Back to Black" first track

D+53 - "Keep on Running* "

Yesterday Alexi & Lucy did the Great North Run half marathon along with about 57,000 other people. Their time was 2hr 10mins. Being 'non runners'  they had hoped to do it in 2hrs 30mins so were thrilled with their actual time.

So far they've raised £2,491 which together with the Gift Aid and less the 5% that JustGiving charge amounts to about £2,880 for 'Bloodwise' (Formerly Leukaemia and Lymphoma Research) which is a fantastic result. Karine and I are very proud of them. The JustGiving page is still open!!

Meanwhile I continue to slowly improve.  Some of the less important but unpleasant and/or irritating symptoms are beginning to lessen a little.  They are not serious but there are a lot of them and they don't do my quality of life any good.  Apart from my pancreas and my joints I think every part of me and every system in the body is upset in some way!

The main immediate trouble is deafness which is quite a problem.  The radio is completely out and subtitles on the TV are a necessity.  Over the weekend I developed an infection in the left ear so have been to the doctor this morning and got some drops.  It's just one thing after another.

Still the important things are coming right, blood results etc. Also my stamina is improving.  I'm up to 6 km on the exercise bike albeit not very quickly because of tachycardia, my weight has started to creep up at last, about half a kilo in the last week or two and my appetite is a little better though food still tastes very bizarre and sometimes quite unpleasant.

Our first trip out of Nottingham last Saturday was to see my sister and was marvellous but all too brief and tiring but it was great just to be out and about a little.  Karine did the driving thank goodness.  I haven't driven since mid April.

Next Time: Hoping to have the MRD results from the Bone Marrow Aspirate this coming Thursday.


* Spencer Davis Group, written by Steve Winwood

D+50 - "Rolling Down The Road* "

Good news from Thursday's clinic. My bone marrow looks normal so I'm still in remission. As usual Prof was right to be so unconcerned about the result when I saw him last week.

The cytogenetics etc are not back yet so no news on the Minimal Residual Disease front. My bone marrow is virtually all my sister's - 98% - which is good. The tiny bit of my own bone marrow doesn't appear to be doing anything. 100% of my peripheral blood is coming from her. I am definitely a chimera - sounds weird - a living being with two distinct populations of genetically different cells ie   from two separate beings! In Greek mythology, a monster!

My remaining immunosuppressant, cyclosporin, is gradually being reduced. If all goes well then at the present rate it will finish in late October or early November. That will just leave me on antimicrobials - antibacterial, anti-viral and anti-fungal agents. Still quite a cocktail but fewer tablets and not toxic like the chemotherapy and immunosuppressants.

After clinic we walked all the way round the Mill Lake in Bestwood village. It is not very far but last week I could only manage about a third of the way round and had to turn back. This time I did it with ease. Next week I have an assessment to see if I can start rehab and physiotherapy at the hospital. The department runs a seven week course for recovering haematology patients.

I have gone very deaf in the past few weeks which is very trying for both of us. Fluid in the ears. This is a separate problem to the leukaemia so I'm off to see ENT but not till mid November which is a long wait. Our GP is trying to get it brought forward but nothing yet. It is a real pain. It's just another thing we could both do without - grrrr!

This weekend we plan to have a few hours in Longstone in Derbyshire. This will be my first time outside Nottingham in five months and Karine too has only very very rarely been away from Nottingham in all that time. The weather forecast is not great but who cares.

Finally as I've mentioned before Lucy and Alexi are doing the Great North Run this coming Sunday in aid of research into blood cancers. Please do consider supporting them if you haven't done so already and a very big thank you if you've already donated. As usual the link to their JustGiving page is below.

Alexi & Lucy's JustGiving page

*Dylan again - "Wheels On Fire". Basement Tapes, I think!

D+45 - "The Future's Uncertain ........* "

Karine & I have been thinking about the future recently, assuming I have one! I have a 75% chance of surviving the next two years and my five year survival rate is about fifty fifty. These figures are of course very approximate. The fact that I was moderately fit and generally well before diagnosis is in my favour, non smoker, no heart disease or diabetes etc, not overweight etc etc. On the other hand I'm 63 and that worsens my prognosis, the chaotic genetic make up of my tumour (cytogenetics) is also pretty bad, but the fact that it reverted to normal after the first cycle is a good sign.

Make of this what you will. You can see that calculating an individual's prognosis is guesswork at best even though the above survival rates are accurate. As always, the laws of large numbers don't really apply to individuals. One key point is that the longer I survive the better are my chances. One of the consultants told me that the relapse rate after two years is small and after five years is 'vanishingly small' which is very reassuring. Anyway, enough of this, back to the future to coin a phrase!

For the next year I am confined to the UK because of the increased risk of infection, GVHD (graft versus host disease, do try and keep up!) and of having a relapse. So as soon as I'm well enough, our plan is to start visiting family and old friends and to explore parts of the UK we don't know. To begin with this will be shortish visits not too far from home.

I have switched from twice weekly to weekly follow up so that will help. The main limiting factors are fatigue and dietary problems. I'm on a 'pregnancy diet' because of the increased risk of infections, so no unpasteurised or blue cheeses, no soft boiled eggs etc. Also I'm having a pretty bland diet because of the taste problems though thankfully that is slowly improving. As for the fatigue I was having two naps a day, now down to one but I'm in bed by about 7.30 most evenings. Again this is slowly improving. I keep being told that my progress will be uneven, two steps forward, one step back. I made a big jump forward about twelve days ago and so far haven't gone back for which I'm very grateful. Of course some days are better than others.

Meanwhile my exercise tolerance is slowly improving. Karine and I walked part way round a small local lake on Thursday and I think I'll manage the whole thing next time. My walking speed has improved from the slow shamble of ten days ago. All in all there is progress albeit much too slowly for my liking.

Next time: Bone Marrow Aspirate result, 

possibly the MRD (minimal residual disease) and chimerism results

 though I think that is more likely to be one or two weeks later.

*The Doors, Morrison Hotel, "Roadhouse Blues"

D+42 - "Wait*" "Can't Wait**"

Six weeks post transplant, it's been a lonnnggg six weeks for both of us.

Just seen Prof Russell in clinic this morning. He has been away for the last few days so no result from Tuesday's Bone Marrow Aspirate yet. However he did say that the blood counts (red cells, white cells, platelets etc) are all stable and he is confident that the aspirate will be normal. It will now be looked at early next week so I have to wait till next Thursday - grrr. Patience David, patience!

The cytogenetics and the other fancy tests looking for MRD (minimal residual disease) and chimerism should be back in ten to fourteen days which is quicker than I expected but still means a bit of a wait - grrr. More patience David please!

My medication has been reduced. One of the immunosuppressants (MMF if your interested!) has been stopped and the other one, cyclosporin, reduced slightly. Overal this means 35 less tablets per week so I'm down to only 134 tablets per week, yippee! All in all I am making progress and can really feel the difference. I'm now doing more walking and more on the exercise bike. That said it takes me six or seven minutes to do two kilometres on the bike. It is progress which is the important thing but it is painfully slow - grrr. Patience David, patience!

Some of the other minor symptoms are lessening as well. There are a myriad of these and I try not to think about them. Sometimes though the brain just takes over. I found myself in the small hours of the night a couple of weeks ago counting them and I'd got to nearly thirty when I woke up enough to realise this was not helpful and rather depressing and persuaded myself to think of something positive. Fortunately I can usually get back to sleep fairly easily so no patience needed here!

*"Wait" Beatles, 'Rubber Soul' track 12
**"Can't Wait" Bob Dylan 'Time Out Of Mind' track 10

D+40 - "Getting Better*"

Had the Bone Marrow Aspirate this morning. It seemed to take a little longer than usual but went very well. It hurts a little at the time but five minutes later the pain has 99% gone. They take samples to go onto slides for microscopy and lots of sample tubes to look at the cytogenetics etc etc (the genetic make up of my bone marrow) which hopefully is back to normal. It was 'chaotic' when I was first diagnosed and chaos is not so good when it comes to bone marrow apparently!

They also look for MRD (Minimal Residual Disease) which is pretty important from my point of view. There are a host of other samples sent to another haematology centre for more analysis and research. These results will take a few weeks to come back.

I see Prof Russell on Thursday 3rd for a routine weekly visit and hopefully he'll have the microscopy result. All being well there will be no 'blast' cells and I am still in remission. The MRD result which comes later will tell us how good the remission is.

Meanwhile I have maintained the improvement which started quite suddenly last Tuesday. My energy level is better though I'm still in bed by 7.00-7.30 and have a nap every afternoon. My exercise tolerance is much improved and Karine and I are now doing circuits of the street everyday, about 1 3/4 miles and I do a bit on the exercise bike as well. Appetite also improving and the taste problem is slightly better (ie slightly less bad!). I actually feel I'm getting better - marvellous!

Finally Alexi and Lucy are in the last stages of training for the Great North Run a week on Sunday. So far they've raised £2,056 on their JustGiving page which when the gift aid is added and JustGiving's 5% is deducted amounts to £2,3650 for 'Leukaemia and Lymphoma Research' (soon to be called 'Bloodwise'), fantastic.

Alexi & Lucy's JustGiving Page

Next time - The initial bone marrow result, hopefully.

*Sgt Pepper, 4th track!