D+35 - "The Times They Are A-Changin'* "

I have been feeling much better for the last three days. It's as though a switch has been thrown and I feel as though a great weight has been lifted. Quite why this has happened I don't understand so I don't know what I can do to sustain the change apart from using commonsense and looking after myself as best I can. Fortunately Karine is very good at this! With better energy levels I've been able to eat and drink more and have felt much steadier on my feet. My weight has gone up this week. Admittedly I think I was getting a little dry over the weekend which reflected the fact that I was really struggling to eat and drink anything very much.

Lucy and Mike came down to Nottingham for the day on Tuesday to give Karine a break and to 'babysit' me! Karine went out for several hours and had a lovely time in town with friends. I managed to walk around the block which is a distance of just under a mile and managed the same feat again the next day. It was lovely to see my sister/stem cell donor! and spend some time together. Karine and I are very grateful to them for everything they have done for us.

Lucy commented that there had been quite a long gap between the two previous blogs and that people may wonder what is happening or may give up looking to see if there is a new entry. I'm afraid I felt so awful that I just didn't feel like bothering and anyway what I had to say would be just me moaning and complaining which would be rather dismal and not very interesting. I've tried to put something positive into each blog entry and to finish on a positive note. She suggested that I should write an entry at least twice a week however short and I wouldn't dare disobey! so I will try and stick to that resolution! Also I think there is a 'follow' function on the 'blogger' site somewhere so that when I post a new entry the system sends you an email notification.

Been to clinic this morning and seen Prof Russell who very was pleased with my progress. My blood counts are stable or slowly rising so I'm back to see him in a week hopefully with a preliminary result from Tuesday's bone marrow aspirate. This will tell me how well the graft has taken and that I'm still in remission. At some point I'll get a result on chimerism, I'm not sure when this comes into play! More on this anon.

We saw the dietician today as well because of my weight loss in the previous two weeks. After reviewing my diet she said I was being fed really well. Karine was given a metaphorical gold star for managing so well under such difficult circumstances.

The Haematology Outpatient Department and the Day Case Unit at the City Hospital both work very efficiently. It is unusual to be kept waiting very long. On arrival on an OPD day and having booked in you pick up a numbered card for blood tests. Being a haematology dept everyone has blood tests every time! Usually your number is called within about five minutes. About ten minutes later the consultant calls you through, usually Prof Russell because I'm on a trial called 'Figaro' which he is very involved in. The haematology results are already on his desk and we discuss the various issues.
On DCU days you book in at a different desk and see one of two specialist Bone Marrow Transplant nurses who takes my blood, nips round the back and re-emerges five minutes later with the blood count results. There is then plenty of time to discuss symptoms, problems and next steps etc. They have immediate access to Prof if they need his advice.

We are usually home in a under an hour and a half, occasionally within the hour. This compares sharply with the U.S. system where the patient has more freedom to choose the date of their appointment but then is very frequently kept waiting for hours. Karine sent me an interesting article a few weeks ago written by someone with experience as a patient in both systems. Amongst other things it compares outpatient experiences. If you're interested here is the link.  US or UK   Stand up Britain and take a bow!!

Finally, I shall be glad when I get the preliminary results from next Tuesday's Bone Marrow Aspirate. Waiting for the result is always a bit of a wind up although nothing like waiting for the one after the first cycle which was more like waiting to hear whether I had been given a life sentence or a death sentence. We all expect this one to be OK at the very least. The odds are in my favour for once but the uncertainty whilst waiting is still not easy, especially at 3am!

*Bob Dylan - Title track of his third album

D+33 - "Hard Times* " but the Underlying News is Good

I've now been home for three weeks which has been great and I'm nearly five weeks post transplant. The last two weeks have been really hard going with extreme fatigue, the taste problem and also nausea. The result has been that I'm not eating much and probably not drinking quite enough. I've now got oral thrush just to add to the joy of everything! Karine keeps trying all sorts of different things to tempt me to eat and drink. Mostly they smell great but taste foul. It is frustrating for both of us.

The fatigue has meant that every little thing I do has been leaving me feeling absolutely shattered. I've been having a rest after breakfast, then having a shower and another rest etc etc, very tedious!

Going to clinic twice a week (Mondays and Thursdays) has been a real trial although generally a positive experience. Sometimes it has taken me until the end of the following day to recover.

My exercise tolerance dropped and walking around the block became too much. My weight dropped a further 1.5kg and for a few days I dipped below 64kg (less than 10 stone). Still, no need to trouble the X-Ray department, just hold me up to the light! The old jokes are the best, I first heard that one about forty years ago. 

However the good news is that the clinic tells me that on paper everything looks great, my counts continue to rise and I have a rising number of lymphocytes, something I didn't expect to see for sometime. (I think I must have got the wrong end of the stick a few weeks back when I said they might take as long as a year to return). Last week in clinic Prof Russell looked me in the eye and said 'you are doing much better than most at this stage' which coming from him is a big boost. I just wish I felt it!

More good news is that we have started to reduce one of the immunosuppressants and I'm expecting that it will be stopped altogether in a week or two. Hopefully sometime after D+50 (about mid September) the other immune suppressant will also start to be reduced. Unfortunately as one tab reduces others take its place. A quick count today reveals that I'm averaging just over twenty tablets daily so if you want to know why the NHS is in deficit and what happened to the budget, it's to late do anything about it, I just swallowed it!

At yesterday's clinic the anti-emetic was changed and the new one seems much much more effective. The regular antifungal has been stepped up and I have a liquid medicine for the oral thrush. Hopefully this will solve ALL my immediate my problems, no nausea so better appetite and better fluid intake which make me feel less tired, allows me to put some weight back on and enables me to exercise more (well you have to hope don't you!). The thrush might improve the taste problem if I'm really lucky!

I try to keep a perspective on all of this. These problems are really only froth on the surface of the greater scheme of things. By that I mean, yes they are what trouble me every day and occupy much of my attention and generally stop me enjoying life. But that aside they are not terribly important. The thing I try to focus on is that the blood results are gradually improving and getting me back to normal albeit much too slowly for my liking.

Karine and I have bumped into a 'patient volunteer' in outpatients two or three times. He had AML some years ago, had the chemo, subsequently relapsed, had more chemo and a stem cell transplant. Nearly eight years later he is incredibly fit and well so there is hope for us all! He describes having a torrid time after the transplant and how progress is uneven, two steps forward, one step back. It is very heartening to talk to someone so positive.

Next week is the acid test. I have a repeat bone marrow aspirate on Tuesday the first of September and I'm due in clinic two days later so may get the preliminary result then.

Wish me luck! More anon!

* Dickens

D+22 - "The Long & Winding Road* "

I hope you enjoyed Karine's contribution to the blog a couple of days ago. I certainly learnt from it particularly how tough it has been for her and what it was like in the first few weeks. I was pretty much 'out of it' at that point so was not really understanding all that was going on. Perhaps we should have called her contribution "I Get By With a Little Help From My Friends (and Family)"!

Back to the here and now, thank you to everyone who has been emailing us, your support is so good to have especially for the morale of both of us. I am using the blog as a reply so apologies for not replying individually.

Alexi sent a text the other day commenting that the road to recovery doesn't seem to be much like a motorway. I'd settle for a quiet B road. To me it sometimes seems more like a cart track full of ruts and potholes. Every rut and pothole I fall into is a new symptom. Talking of the symptoms I have at present, none of them are anything serious thank goodness so each day is a day nearer to recovery and a battle won. Nevertheless the symptoms are an unruly lot. They don't wait in a nice orderly queue to replace the previous ones but come barging in whenever they please. To misquote Alan Bennett's The History Boys, when the Russell Tovey character is asked what is history he replies 'just one flipping thing after another'. That's how I feel much of the time about my current medical history!

I won't detail my day by day complaints, I find it boring telling Karine so I'm sure others would find it even more dull. I continue to go to haematology clinic twice a week which is pretty exhausting. It usually takes a day or two to recover. They take an armful of blood and review how I'm feeling. Quite often my medication needs changing. So far they seem pleased with my progress which I find very reassuring. However it is very frustrating feeling so grotty and tired all the time.

I bought a dosette box to organise my tablets but it was too small so I now have a huge one. I am currently taking somewhere between 150 and 170 tablets a week! All being well it should start to reduce a little quite soon but some of them I will be on for a year or more till my lymphocytes return and eventually I hope to be down to about 15 a week which I will stay on for life, quite literally,

Finally Lucy and Alexi are doing really well with their fundraising for Leukaemia and Lymphoma Research thanks to your generosity. They've reached £1,671 and have reset their target to £2,000. Many thanks to everyone who has contributed.

Alexi & Lucy's JustGiving Page

*Beatles "Let It Be" track 10

D+21 - What About The Carer?

What about the carer?

Although I can never really know what it is like to have gone through everything D has had to face since diagnosis back at the end of April, I also went through the shock and the fears, the denial of what was happening. Nothing can ever prepare you for something like that. The speed at which it happened, information being thrown at you by the consultant warning you of the worst scenarios, the immediate admission and start of treatment does not leave you time to digest the rapidity of events. 

Cancer in general is always a shock for anyone but AML tops the chart in many ways. The first few weeks, well actually, the first month was truly awful. I became more or less "paralysed", unable to get going, cook or feed myself. I only survived thanks to our close family, a few loyal friends we are blessed to know, some members of D's family and our extended family who all fed me in turn or provided some food easy to eat without the hassle of cooking. Some of these friends and close family also offered time to be with me, to keep me company, sometimes sleep over or have a short walk with me. I am so thankful to these friends and family, you'll know who you are if you are reading this. 

Some people are well intentioned and keep saying: "let us know if you need anything" but even if asking them little things, you don't really see them again. Either they don't really mean it or are unable to offer true support. This is sad but hey, not everyone has a Samaritan soul.

Eventually, results indicated some improvement and a better prognosis and life moved on but the twirling of doing everything on my own went on. I suddenly became no 1 chief organiser ranging through cooking, cleaning, gardening, accounting, caring, coming and going to and fro between home and hospital, etc, etc...no rest for the weary, whether I wanted it or not, I just had to get on. Getting up in an empty house and returning to the same empty house day in, day out, week in, week out was not nice at all. 

As David mentioned, when he was allowed some time at home in between treatments it was so nice for me too despite having to tend and care to his needs. 

Anyway, by necessity I became expert at " sanitising" the house so well, sterilising utensils, pots and cutlery, that you could probably eat a meal on the floor without risk of infection!!! I also became expert at providing meals both at lunch times and evenings and carting it to hospital in my newly acquired battery of wide neck Thermos flasks and insulating bags. 

Don't kid yourself though, this is all extremely tiring and exhausting for the "carer". You may see someone doing well and coping well but at times I was screaming at the unfairness of it all, wishing I could just catch a plane and get a sunny warm break somewhere with D or just be able to do normal things as and when I could instead of just collapsing in a chair or in bed for short periods (and falling asleep at short notice!)

All in all, it is not just the life of the patient that goes upside down or topsy turvy but also the life of the person left to deal with everything that used to be shared before it all happened.

When the patient is finally home, it is certainly nice but unlike nurses and doctors at the hospital who, although they work long hours, have time off between their days on duty or even manage some holidays, the carer does not. It is a 150% all on your own full time job without the support of a back up team. 

Having said all this, David has only lots of praise for the Haematology teams and we are certainly blessed to live in Nottingham with a centre of excellence, the offer of the best treatments and the expertise of renowned consultants.

As for me, I certainly appreciated being able to go to the Maggie's Centre, it is not just for patients or ex patients in recovery but for anyone living or knowing someone with cancer. It is a haven of caring people who take time to listen. You can go there just for a quiet time or to join in some of the activities on offer. It became like a second home to me and I am grateful for the people I encounter there on my numerous visits.

That's it folks. End of carer chapter. I'm handing it all back to no 1 patient from now on.

May be in few months time D & I should start a family support group for carers/partners/relatives of patients going through AML specifically as this lady did http://www.leukaemiacare.org.uk/inspirational-stories/amanda-menage

D+18 - "Thank You Very Much* "

Two 'big thank yous' really. (What's the plural of Thank You?)

Firstly to the 'French Frogs' group here in Nottingham who held a fund raising event in the Fade cafe yesterday afternoon. Lots of people made food. They raised nearly £400 (so far) for 'Leukaemia and Lymphoma Research'. A fantastic achievement for a comparatively small group. Such generosity.

A special thanks to Sylvain who organised it and to everyone who supported it either by bringing food or by coming along on the afternoon or both. I really appreciate everyone's kindness and support.

Secondly a big thank you to Alexi and Lucy (our son and daughter-in-law who are doing the The Great North run in September). So far they have raised £1401 on their Just Giving page again for 'Leukaemia and Lymphoma Research'. This doesn't include the gift aid!

If you would like to support them with a donation the link below should work, I hope!!

Alexi and Lucy's Just Giving page

* Scaffold - "Thank You Very Much (For The Aintree Iron)"

D+16 - Post transplant - it's still tough

I'm now D+16 (16 days post transplant) and have been home for four days. I hadn't expected the fatigue to be so profound and disabling.  Doing any little thing leaves me completely worn out, having a shower, coming downstairs or having a meal. I usually rest in bed for an hour after breakfast just  recovering and then have a nap for an hour or two after lunch. I've been going to bed about seven o'clock and either reading or watching something on the box. I'm physically drained but mentally still awake although I'm sure my IQ has dropped to about half what it used to be, I can't remember things like I used to - "chemo brain" the nurses called it.

My other big problem is my taste buds. Food tasted strange until about five days ago when it suddenly changed. Since then everything tastes disgusting and when I say everything I mean absolutely everything. It makes eating a real penance. I've tried to find a word to describe the taste and have utterly failed. Everything tastes truly horrible. I force down food at every meal but am probably not eating enough. My weight is falling which is quite common anyway after transplant apparently. Still, if I could eat better I'm sure I would have a better chance of maintaining it. It is probably one of the immunosuppressant drugs doing this, though it could be a late effect of the chemotherapy or even the disease itself, who knows?

The treatment also causes a myriad of minor side effects most of which are subsiding thankfully. I've had rashes on my elbows, eyelids, knees and wrists due to one of the chemo drugs from about three weeks ago. It is now slowly fading. The rash on the eyelids wasn't much fun. I've also had soreness in some rather delicate parts of my anatomy and that is now improving.

The chemotherapy attacks cells which have a fast turnover rate so this includes the bone marrow of course but also hair follicles (hence I'm completely bald) and the lining of the bowel. This just adds to the general misery that the disease and the treatment causes. Bowelwise I swing between one extreme and the other.

Two days ago I went to outpatients, an exhausting but necessary experience. A great load of blood was taken from my arm for a whole battery of tests. One of these requires blood direct from a vein so they can't use the PICC line unfortunately. Then I saw one of the consultants. My neutrophils have fallen back to 1.5 from 4.0 which was a bit of a shock until it was explained that this was because I had stopped the GCSF when I came home. GCSF is the magic injection that I had for the last four days I was in hospital, it stimulates the bone marrow to produce neutrophils. Otherwise other results were ok. Liver and kidneys are gradually recovering. Nothing doing for the fatigue and the taste problem worse luck.

The good news is, all being well, I can stop one of the two immunosuppressant drugs I'm on in about a fortnight - hurray! In about a month we may be able to start reducing the other immunosuppressant with a view to being off it by late October, even bigger hurray!. Finally my PICC line should be removed in a week or two. I shall be sorry to see it go, it has become like an old friend and a security blanket giving quick access to my veins when I run into trouble.  I'm still not very keen on needles despite having lots of them in the past three months.

Many of the other tablets I'm taking I will need to stay on, two of them for life. There is another group of white blood cells called lymphocytes and these protect us against viruses and fungal infections. At present I don't have any of these and it will take a year or two for them to return. In the meantime I remain on full dose antiviral and antifungal treatment. The antiviral is four times a day and they are huge! The average horse would baulk at them! We stem cell transplant patients don't have a choice and have to saddle up and carry on.

I'm not out of the woods yet by quite a long way but have made fantastic progress so far.  Thanks for all your support.

D+13 - JustGiving link and being at home

It looks like the Justgiving link doesn't work.

To find Alexi and Lucy's page go to the Justgiving website and search for Alexi-Lucy Thornhill and you'll find them.

My first night and morning at home has been wonderful but completely exhausting! I'm back to the day case unit tomorrow to check my counts, kidney function, cyclosporin levels and heaven knows what else. Then see one of the Drs to review everything. I'm going to ask them if we can stop some of the tablets I'm taking to counteract side effects which I don't seem to be getting any more.

I have a dosette box but it is too small for all my treatment so have ordered the biggest one I could find.  Some of the tablets I have to take are enormous,

Still I'm not complaining, being at home with Karine and in familiar surroundings is simply marvellous, I have broad grin on my face!

D+12 - "Going Home* " - I Am home!

My neutrophils have risen from 1.3 yesterday to 4.0 today thanks to my sister's five star stem cells. It is only twelve days since my transplant so this has been incredibly quick. The  booklet we had been given said fourteen to forty two days!

It is absolutely wonderful to be home but the first thing I did was to have a two hour sleep. Just the process of coming home was exhausting.

I'm much more fragile than after the first two cycles of chemotherapy. Everything requires a very big effort. Hopefully this will pass quickly. In the meantime I will try and get as much uninterrupted sleep as possible, no nurses coming in to change my IVI or do my observations - hurrah!

Please, no phone calls between one thirty and four in the afternoon or after about eight thirty in the evening.

Although I'm home there will be twice weekly visits to the Haematology Day Case unit for blood tests, review by the doctors, see the transplant coordinator and the trial coordinator. I'll probably need some blood products from time to time. My haemoglobin is still roundabout half to two thirds what it should be.  This will take months to come back to normal, quite possibly a year or so. They tell me I won't feel back to my usual self for about a year but that sometimes this can take a couple of years. There will also be physiotherapy visits for a few weeks as soon as I feel up to it.

After a month I'll have a repeat bone marrow aspirate to see exactly what is going on.  I am now a "chimera" which means I'm made up of cells from two different beings. More correctly I'm probably a partial chimera. It is quite likely that my bone marrow hasn't fully converted to my sister's yet in which case I will need a different type of cell from her. They have already taken these when they originally harvested her stem cells back in June. I'm glad someone's thinking ahead!

Finally, please consider supporting Alexi and Lucy in Newcastle who are going to do The Great North Run in September in aid of "Leukaemia and Lymphoma Research". As they say on their Justgiving site neither of them are keen runners so this is a big thing for them to do. The link is......

Alexi & Lucy's JustGiving Page

Many thanks for all your support in the last few months. It continues to make a big difference. I'm not out of the woods yet but but am making good progress. More anon.

* Rolling Stones "Aftermath" track 6

D+11 - "Good News* "

My neutrophils are back!

Yesterday I had 0.1 which is the lowest level you can have. I had been told that after transplant the neutrophils might come and go for a bit before the new bone marrow gets properly established. However my sister Lucy's stem cells are absolute stars. Today I had a neutrophil level of 1.3 which is absolutely wonderful. A really good steep rise.

I still need to complete various courses of treatment, mainly the IV antibiotics so it is largely up to microbiology what happens next.

The important things are that I have a functioning bone marrow again and consequently the dangers from infection have fallen very dramatically.

* "Good News" - Good News Bible or Russell Howard's Good News - take your pick!

D+10 - "A Day In The Life* " or life on the ward

I thought I would describe a day on the ward or rather a day in my room since I'm not allowed to leave this room whilst I'm neutropenic.

The day usually starts between about five and six thirty with observations (BP, pulse, O2 level and temperature) and the day's blood samples being taken. My first IVI starts at about six and lasts two hours, then there is a flush (saline IVI) to clear the drip line of the remaining drug. In this case an immunosuppressive agent to help me accept the donor cells. A second IVI for a further two hours for a different immunosuppressant follows straight away. Often there are little gaps between stopping one IVI whilst I wait for my nurse to be free so by the time the second treatment is through it usually time to run the first one again. What with a further flush this finishes about mid afternoon. Time for a shower

The room I'm in has an en-suite shower room as do all the rooms on the transplant ward. I'm very lucky to have a view from my bed through a window looking out onto lots of trees and rooftops which catch the every changing afternoon light, wonderful.

I have a PICC line in my right upper arm which has twin lumens so two preparations can be given at once. The line can stay in for months so this means I don't have to have so many needle punctures. It is an absolute godsend, much much better than a drip cannula.

In addition to all this IVI treatment I have to take oral medication, powders, liquids, pills, capsules, sub-cutaneous injections etc. Most days I have about fifteen or so different medications.

Whilst all this treatment is going on a nurse or health care assistant (HCA) has changed my bed, someone has brought in fresh water, breakfast has been served, lunch order taken, the room has been cleaned, someone changes the bins and perhaps a physio has been in. Twice a week there is a consultant ward round, on the other days a registrar comes round. All in all it is nonstop especially in the mornings.

On some days I need additional IVI treatment, antibiotics, vitamins, fluid replacement etc. In the evening I have further immunosuppressant IVIs which finish somewhere between one and four in the morning. Some days I need blood products, blood itself and or platelets. The latest finish for the day's treatment so far has been seven forty-five am!

The biggest problem is sleeping. The constant interruptions make it difficult to say the least. Luckily I'm a good sleeper and can snatch short naps. Nevertheless there have been times when I've been desperate for sleep. I'm not complaining because I realise full well that all this is solely for my benefit.

One final word on cost.  I met a fellow patient a few weeks ago who was diagnosed whilst in the USA. It was deemed too risky to be flown home and the first cycle of chemotherapy for AML was given over there. The total bill was $700,000 for just the one cycle. The next three cycles will be on the NHS. What's more I had an additional very expensive drug which the Americans don't give despite the fact that the trials in France and the UK have been very promising. Thank goodness for the NHS.

* Beatles - "Sgt Pepper's Lonely Hearts Club Band" track 13