Should be out by tomorrow

As some of you know, and some of you don't, I was admitted to hospital on Monday with a raised temperature. I can't say I felt that bad, very tired but not poorly as such. But we've been told quite firmly: do not sit on a temperature as you do not know what is causing it, and the drugs you are on mask a lot of stuff so it is possible to feel fine, but not be fine at all.

So Jo kicked my ass into the car against my will (I was not wanting to follow the advice mentioned above) and off we went. I have been suffering with strange spot/lesions for about 10 days on my head and another area which I don't wish to discuss too much on such an open forum, which have made walking and sitting very difficult. This was considered to be GvHD, but on arrival at the hospital I was given a blanket antibiotic to cover any possible infection and in 24 hours the pain had significantly reduced, and a virus has been found on the line in my arm which has also been identified on my head and other end. So it is simply viral and being treated and I am no longer in any real discomfort. My line has been taken out of my arm which is lovely, no more tubes hanging out of my body, which are such a pain in the arse. My temperature has stayed low, and I have been told I will probably go home once the course of antibiotics is over, which is tomorrow. I feel fine, am allowed of the ward, still having to eat pureed meals as my mouth is sore, but it is amazing how quickly you get used to something and almost forget what it was like to eat normally! It is just hard trying to find things that keep my diet a bit interesting, at the moment there are a lot of milk based foodstuffs passing my lips which is getting a bit tiresome. It is all about getting calories in as even though I feel I am eating constantly I haven't put on any weight at all.

My face and scalp is still red and itchy, but not around the eyes which makes me look like I've stayed on a sunbed a bit too long with goggles on. This IS considered to be a GvHD related skin condition, along with the rash on my torso and the skin on my feet which is now peeling off in sheets (quite satisfying to pull off as it comes off in strips, bit like peeling wallpaper). I also have skin discolouration (like freckles) on my legs, which is also 'classic' GvHD apparently. None of these things are that bad so I am very happy at moment. The transplant nurse visited me today and said that to have had the hard time I've had with all the viruses (apparently no one expected me to have such a difficult transplant when it was a reduced intensity allo) and to look so healthy and be so active I have done remarkably well, which was nice to hear as I have nothing to compare my progress to, whereas she has years of seeing these things. As I mentioned before all major internal organs are operating fine and a few skin problems I can put up with right now.

GvHD!

I have been meaning to write this for weeks so the usual apologies for not keeping you all updated.

I have finally been hit with a confirmed case of Graft-versus-Host-Disease, my consultant has been very reluctant to say GvHD up until now - all the skin rashes and issues I’ve had have been attributed to drug reactions. This is good news, GvHD is something we have been waiting for, it shows that my donor immune system is recognising me as foreign, and this increases the chances of the immune system recognising and attacking any disease that might show itself.

It does come with some discomfort though, at the moment it is mainly a very nasty rash covering my torso and arms, mouth sores and dry purple soles of my feet. The mouth sores have made it quite hard to eat, which has resulted in me loosing a bit more weight frustratingly, I am now a meagre 11 stone, a weight I have not been since I was about 18. Last weekend my face went bright red and swelled up, I was put on steroids and some strong creams and this has sorted the swelling, but since then my face has peeled constantly, and is still quite red. This, combined with the weight loss, makes me look like I’ve just returned from some polar expedition, looking windswept and in need of nourishment! Not a bad look really, could be worse. The only real issue is the face cream, which my eldest informed me makes me smell like ‘ear wax’. All these symptoms are controllable though (the rash on my torso is looking better everyday) and at least at this point there is nothing significant going on with major organs. Liver, kidneys and lungs all operating fine. I am no longer on any nasty anti-biotics for CMV as the test results have come back negative for the virus, and the toxoplasmosis is also currently in check. My treatment for the pneumonia I contracted continues, but this is only once a month so is not particularly intrusive.

One of the best things that we’ve been told is that my symptoms suggest an aggressive donor and this can only be a good thing as it means it is likely to be aggressive towards any left over Myeloma. I have also had it confirmed that a bone marrow biopsy taken last week shows no disease and 100% donor marrow. I am currently, officially, a chimera. A blood test taken in September showed my blood was a 100% donor too, but a bone marrow biopsy provides a much better picture of what is going on. This is incredible news, my faulty bone marrow is gone, hopefully never to return. My new efficient, aggressive German marrow has taken over!

One foot in the hospital

I've been wanting to write an 'I'm home' blog for a week now (for it is a week and one day since I was discharged) but I have found it hard to believe that I won't just be on my way back the moment I utter the words. And for good reason...

Last week my temperature refused to behave, swinging up to 37.9, then down again, 38.1 then down again. Never quite meeting the criteria to be admitted but coming stressfully close. I admit I shed a few tears one night when my temperature hit 38 and the prospect of going back in a mere three days after discharge became a potential reality. But it just went down again one hour later. We believe that I caught a mild cold and may have actually overcome it, I did feel a bit rubbish for a few days, just like when you have a cold. Now I feel ok, touch wood everyone.

So I currently still feel like tomorrow I could be back in hospital and haven't quite relaxed into home life yet. The improvement over the last week in my energy levels and eating have been enormous and I have put on 2 pounds in weight. I now weigh 11st 7lb, I should be about 12st 10lb so I have a little way to go yet.

I still have the rash which is all over my body now, but it is mixed up with 'blood spots' caused by burst capillaries as I have low platelets. This could be caused by the drugs I'm on, the virus' I have or GvHD. This is also the explanation for all my other gripes, such as the headaches. This is the point at which no-one really knows what is going to happen. It is simply a case of wait and see...and suck up the symptoms cause it will be worth it.

To start, some good news

I had a visit from my consultant yesterday, it was brief as I had been asleep, but essentially he said that he is absolutely sure that Toxoplamosis has been the problem and that I am now on the right treatment (I must admit it's been since they changed all my treatment in response to finding the Toxo that I have felt progressively better). I have issues with fatigue, but that is to be expected I think, it was only last weekend that I was having 39+ temperatures and couldn't breath! But the consultant believes that by the end of the week I should be ready to go home, so Friday! This is obviously brilliant news but I feel like I should stay another couple of weeks - I am so scared of what will happen if I go back to our house this week.

Just to make sure no good bit of news ever reaches you without some thing bad happening too, I have developed oral thrush. Very common in my situation (I thought I was supposed to be on prophelactic anti-fungal drugs to stop this but there we go), very easy to treat and it does explain why my mouth has felt so weird the last few days.

Treating toxoplasmosis does take 3-6 weeks of anti-biotics but these can be taken orally and taken home which is good. The CMV still needs to be treated with IV anti-biotics, so my going home is reliant on what the CMV is doing, the doctor on today would not be drawn on the last result as we will get a new result tomorrow. Blood counts are really good which means that GCS-F injections have ceased, my neutrophils were 6.29 or something, really high. Low platelets though which has led me to bruise quite badly in a few places (elbow and hands mostly, the things that get bashed) and I am having a platelet transfusion right now.

I was weighed this morning too, 73kg with my dressing gown on. I was 80.5kg with my dressing gown off when I came in. That is almost a stone, there is a stone less of me now then there was 5 weeks ago. And even I have to admit it shows, I've got skinny legs and arms. My skinny jeans no longer seductively cling to my frame but hang loose like the sails of a disused trawler left to rot in the harbour. And I've still got massive feet and ankles from all the fluid they pumped into me a couple of weeks back, I can barely get my trainers on, I kid you not.

My musical recommendations for this week are album Barton Fink 'Gear', song Cage The Elephant 'Ain't No Rest For The Wicked'.

Written on behalf of

This blog has been requested by my wonderful wife who is somehow holding a home together as well working. And still she talks about what big batch of great, healthy food she's going to do the kids so they're having something proper even though she's not there. Amazing. I honestly do not know how she does it, I would have crashed and burned weeks ago.

Anyhow apparently the length of time I have not blogged has led everyone to think I am back at home. This has obviously led to the inevitable repeated questions and identical conversations with the people who care about how I'm doing, etc. The kind of thing that was one of the driving forces behind starting this blog was making sure all you lovely people are informed all the time so Jo was not the single conduit of information, so I have failed you and her on that, for which I'm sorry, I'm sorry I'm so so sorry, there's no easy way to say that I'm sorry, I'm sorry.

Having said that I have not been sat here slacking. My last blog was done last Saturday night when I'd really pulled through feeling shitty and felt I had the energy to do a quick one. The next morning I wake up, feel ok, bit of tightness on my chest but nothing much. I take a walk down to the tea machine at the end of the corridor and by the time I get there (it isn't far) I feel really dizzy, out of breath and I am asked if I'm ok as I'm clinging onto the table the tea machine sits on. I say I feel dizzy and I'm popped in a wheelchair and told to get back into bed. So on the Sunday morning when Jo turns up, having left me the night before fine, I'm hooked up to an oxygen line and really struggling to breath. I feel like I've got about 50% lung capacity and I have to pant to just to get air. A physio pops in at some point and gives me some relaxing exercises which turn out to be most useful bit of advice I get all day. Then it all got very medicalised, I got oxygen all day, then transferred to an oxygen machine with a nebuliser attached which essentially passed some steam in with the sir supply so it didn't dry out the air passages. I then got moved to the Intermediate Dependency Unit, one below High Dependency Unit.

I'm not sure in hindsight if I needed to go there, they wanted me on this special oxygen machine which 'may feel like you've stuck your head out of a fast moving car'. I managed 20 minutes of what was supposed to be a 2 hour session and had to admit defeat, I've never felt anything like it. The power of the air meant if you relaxed your face you resembled Scooby doo on a windy day, or someone falling from an aeroplane. To take a breath felt like someone ramming air down your throat. But the main issue was breathing out, with my reduced lung function I just couldn't do it and I felt like I was being suffocated. They said 'don't worry quite a few people can't do it', I'd like to meet one that could.

Now there is a happy end. Obviously I am well enough to write a blog right now, that's good. But the up shot of all the recent tests which were spurred into action by quite an unhealthy spell has found that it is VERY likely all of these symptoms, from the grumbling temperatures to the high temperature more recently even including the chest infection, are due to Toxoplasmosis. Another one of these CMV type things that just sits there and you don't know you've got it until you have no defenses. Then, oh boy, you know you've got it. Can lead to lesions on the brain but it is, as with CMV, easily treatable and this just means the doctors are no longer guessing at what the problem is, they know, so they know precisely what antibiotic to give. This is a massive result. I still need to be in, and it could still need to be a few more weeks but I now know I am on the right stuff for what has caused all these issues. You can all have a drink on that tonight, I'm having hot lemon squash.

Quick update

It's been a few days since I last wrote but three days ago my condition went from grumbling high-ish temperatures of 38.1s and 38.2s to 39.9! And this continued for two days, this morning I woke up feeling incredibly bad, but by this afternoon I feel loads better. This I attribute to my wonderful wife who came in at 10am to find me still in bed having ignored my breakfast (I haven't been able to eat during these two days and have been sick for the first time since all this treatment started - and I'm not on any chemo), she got me out of bed, got me sitting in a chair, and chatting and eventually eating. This has made me feel immensely better.

So the upshot is: I'm still in, but I now have my own room. My CMV levels over the last 3 weeks have gone 180,000 - 77,000 - 20,000 so we are hopeful the next one will be negative. My neutrophils are on the rise 0.17 - 0.20 - 0.30 over the last three days, I'm even creating red blood cells. Predictions are that I will be in another week meaning I'll have been here this time for as long as I was to have my transplant! and I'll have been on the ward for 10 weeks out of the last 13. Scary stuff.

One thing leads to another...

I remain in hospital and probably will be here over the weekend, but amazingly what I came in for is not what I am now staying in for. Let me explain.

Having come in and been diagnosed with CMV I was put onto an antibiotic called ganciclovir (gan-SIGH-clo-veer). This is doing the job and has brought the number of CMV cells in my blood down from 200,000 to 180,000, which is apparently good and would be enough to send me home with oral antibiotics. But while in I have been found to have low sodium levels in my blood. Following saline drips and a cap on my water intake of 2.5 litres a day, this didn't change so levels of hormones in my blood were investigated by the endocrine department and low and behold I was found to have low cortisol levels, which can result in low sodium levels. And this is also part of the reason I have been so tired: cortisol is released by the adrenaline glands, situated on top of the kidneys, mostly in the morning to get you up then the levels slowly decrease  through the day and are lowest at night.

The theory is that I have had quite a lot of steroids over the last 18 months and therefore my body has almost lost the ability to know when to release it's own. So I am now on hydrocortisone tablets (a low dose) to compensate. But they want to see if my sodium levels come back up to normal.

Also the ganciclovir has caused all of my blood counts to plummet, which is quite common, but it has made me neutropenic! So I have had to have injections to try and boost my white blood count, and obviously I won't be allowed home until I am no longer neutropenic, so we are waiting for those to recover. If they don't then I will have to go onto a different antibiotic, including one that has to be breathed in as a vapour on a special machine.

AND, because I have continued to get headaches they want to do an MRI scan of my head, but they seem a little concerned about the metal work in my neck. It does make you think what might happen if I was put into a really strong magnetic field with two massive titanium rods in my neck! Could be a little uncomfortable.

So it's all waiting at the moment.

I am happy that my rash has now gone, the skin is quite dry and itchy in it's place so I am back on the paraffin lotion which has helped no end but means I spend most of the morning and post shower in the evening looking like a greased up nutter waiting for a bare fist fight. Although this is getting better as my hair is coming back! A small smattering on my head and the magicians moustache and triangular beard. I feel like it has taken longer to start to recover this time, but I hope it is as quick as it was last time now it's started where it seemed to go from nothing to everything in a very short amount of time. It's so good to see it though, like an old friend.

The Answer

Well thank you to all the people who suggested ways around my conundrum. Answers varied from alternating mouthfuls, tad disgusting, to just eating the cereal and binning the toast, which I'm sorry but that just isn't an option: I have to eat everything. Congratulations go to Jack who got it on his second attempt: get the milk brought separately then you are free to eat your toast without disastrous cereal sogging in the meantime. You got to step outside the box people, that's why he is a doctor.

I've been put on a water limit as I was once again drinking too much, causing me to have consistently low sodium levels in my blood, so I am not allowed to drink more than 2.5 litres in a day. It is so hard, I have them telling me to keep drinking to keep my kidneys flushed as the drugs I'm on are quite harsh on that particular organ, but then I can't drink as much as they say as it lowers sodium levels. I'm not sure what they'll do when I get to 2.5 litres, refuse to give me any more water?

My temperature has stayed below 38 since Thursday night, but the antibiotic I was put on when my temperature went up before (a general antibiotic that you get automatically after a spike called Meropenum) stopped this morning and they stopped this before on Thursday morning after my initial spike...and Thursday night, well, I refer to the beginning of this paragraph. So I am a little nervous right now.

Felt really tired this morning and really struggled to get going, partly to do with a bad night's sleep and partly because I was found to need a blood transfusion. I had this early this morning and I felt loads better pretty soon after. I was able to really enjoy my visits from Jo this morning and Neil this afternoon. Thanks go out to Buff for once again doing my washing. Plus thanks to Neil for burning me the alt-J album 'An Awesome Wave' which I have to say wouldn't normally be my thing but it is brilliant, very different. Along with The Heavy's album 'The Glorious Dead' which I invested in the other day my need for new music this month has been suitably satisfied.

Conundrum

Here's a little conundrum that I have to deal with every morning. I wondered what other people would do.

You are brought your breakfast and it is a bowl of Bran Flakes with the milk already poured on and two slices of toast which, by the time they reach you, are warm but not hot. Thus, the cereals are going soggy by the second and the more the toast cools the more it resembles cardboard and, obviously, the less butter meltage you'll get when it is applied. Which do you eat first? If you eat the cereals at their best you will end up eating cold, hard toast and if you eat the toast first your cereals will be mush. Help me out.

My temperature has now remained below 38 for more than 24 hours which is good, I do not feel anywhere near as tired as I did a few days ago. I had a short lie down earlier but didn't fall asleep and I've read quite a bit of my book which I haven't physically been able to do for a few days as I couldn't keep my eyes open.

My rash is under control where I have applied the ointment but it is spreading so fast it is hard to apply the ointment everywhere, it is now on my legs and arms and bum, which is quite uncomfortable as I spend a lot of time on my bottom right now and it is really itchy. It does look a bit nasty in places though.

This is round my waist:

 

 And this is the best picture I could take of my back (I didn't even know I had the rash on my back as I couldn't see it!):

But wherever I have applied the ointment for a few days it does seem to clear it up, but as it is starting to cover a significant portion of my body it is not appropriate to apply so much ointment and I may be put on oral steroids, which isn't great but they do do the job.

Still here...

So, good news and bad news.

The bad news is I'm still here, with a fluctuating temperature which goes over 38 every evening. When this happens I am automatically in for at least another 48 hours, and I can't help but feel that they won't be quite as keen to let me go home considering how quickly I ended back in before. So I am very likely to be here for at least a week now, over the weekend I'm sure.

But to be quite honest this is probably the best place for me - I have never slept so much in my life, this is my typical day:
09:00 - get woken up for breakfast
09:15 - eat breakfast, clean teeth, apply various skin creams
10:00 - go back to bed, exhausted
11:45 - get woken up to choose lunch
12:00 - eat lunch
12:30 - clean teeth and go back to bed
15:00 - rouse, try to read, fail, watch DVD or 4onDemand
17:00 - eat tea, clean teeth
18:00-21:00 - try to stay awake in any way I can as I want to sleep at night
21:30 - go to bed

Exciting stuff.

The good news is that I have a rash! And it is now generally agreed between the consultant and ward doctors that it is GvHD related, not drug related. This, the consultant said, is 'good for you'. This is great news, my donor is in there fighting, which means it is likely she will be fighting the Myeloma which is great. The rash doesn't itch, although it is pretty unsightly, and if I was going to get any GvHD issue it would be skin problems - I am very used to rashes. So right now I have an ointment which appears to be controlling it so I am not worried, I am very happy.

Out...and in again

Oh dear. Released from hospital at 17:30 Friday, readmitted at 19:00 on Sunday. So I managed two days out, in which time at least I was home for the Butterfly Party, and did actually help out a bit - obviously without going near any of the kids just in case. I operated the music for pass the parcel, things like that, Jo orchestrated it. I have to say it was only 9 kids for two and a half hours but it was absolute chaos and incredibly tiring. It is one theory that going home to that level of activity is possibly the reason I have ended up back in here!

My temperature shot up to 38.8 last night out of nowhere so that is instant admission even though I'm not exhibiting any other symptoms and it seems very likely to me to be CMV related. But they have to be so careful I am back in, back on more antibiotics as it is a new spike and therefore has to be treated as any spike would. Probably for a few days. Which to be honest I think I need to rest all: I have done today is sleep, I just cannot physically keep my eyes open, I went downstairs earlier on and suddenly felt like I was going to faint, I'm just getting ridiculously tired at the slightest activity.

I'm getting a rash across my shoulders and around my belt line, but the doctors think this is a mild folliculitus and not GvHD related. Shame.

So it's back to watching Green Wing for a few days and finishing Inheritance, which is properly building for some mega dragon battle, can't put it down. Unless I'm falling asleep.

Diagnosis

A result! My raised temperature and under the weather feeling was caused by the on set of Cytomegalovirus (CMV). I can't remember if I've mentioned this before in any of my blogs but this is a virus, related to the herpes virus, which it is estimated half of all adults have. You catch it through close contact with bodily fluids and most healthy people will never know they have it, it just sits dormant.

However, if you don't have an immune system it is very likely to make the most of it. My donor had it, I didn't, but now I do and I was told that it was very likely that it would activate at some point. It is more of an inconvenience than a real problem as the doctors know exactly how to treat it. It means having around 2 weeks of antibiotics, but luckily I am being allowed to administer them to myself at home via a PICC line which I have today had inserted into my arm. It is amazing actually, the line is situated about 3 inches from my armpit. When the fellow was putting it in I could see him doing an action which looked like he was pushing something further and further in to my arm, and at the end I saw on the table a really long feeder wire. Then I went for an x-ray of my chest as they wanted to make sure the line had reached my heart! From my arm! I was stunned if I'm honest and I didn't even feel anything.

My temperature is now in the normal range and if it stays that way and I show the nurse here I'm capable of doing my antibiotics I should be discharged on Friday, so the Butterfly Party is on!

Serves me right

I knew I shouldn't have done it. Yesterday I discussed going back to work with my boss, today I am back in Addenbrookes on anti-biotics for a raised temperature. I'd been feeling under the weather for a few days and my temperature had been teetering just below 38, but yesterday it crept over and that means automatic admission.

Annoyingly my temperature did not go up until 21:00, and we didn't leave the house till gone 22:00, and that meant bundling the kids out of bed into the car (which they didn't mind at all) and getting to Addenbrookes at 23:30. For administration reasons I have to go through A&E, which is ok as haematology ensure I am ushered into a side room, but it does mean being in A&E for 2 hours before being moved to the ward. I got to bed finally at 03:00 and slept very soundly. I got one night in my own room and now I have been booted out into a bay, which is fine - the two people in here are so old I don't think they'll give me any problems.

My temperature today has already gone down to 36.7 and I have been told it is likely that I will be going home in a couple of days providing it stays down, I have no other symptoms to talk of. So I should be home in time for the Butterfly party on Saturday!

Another check in

Had a consultant appointment on Friday, and it is all still looking good. Blood counts are still ok, red blood count had gone up a bit (a tiny bit), but the consultant said it shows I am making blood which is all they want. The most stunning piece of news though is my serum free light chain result, now I think the maximum you want your serum free light chain is around 20. As I'm sure you all know mine started out back in May last year at 3880 (I was described by one haematology nurse as 'on paper you were a wreck'). My levels are, right now, 1.6! And the consultant said, right now, he is not concerned about the Myeloma. Great news.

Also feel a lot better about the current side effects I'm suffering which include high sensitivity to temperature, shakes and cramps in my hands. This is all to do with the immuno-suppressant; I am on a high dose apparently as my consultant is not convinced that I didn't suffer with a bit of GvHD in the hospital. This is also really good news as we were told the rash I had in hospital was probably drug related, so to know I may have had a bit of GvHD is great. I can live with the shakes.

He described the next few months. I am currently on Day 42, 6 weeks post-transplant, and at around day 100 he will start to wean off the immuno-suppressant drugs to see what happens. This is the point at which they are reasonably comfortable you should not suffer with acute GvHD, then a further 3 months will pass before he starts to relax about chronic GvHD. At this point, he said, you can start to think about going back to work...I'm thinking about going back to work next week! I think though when they say these things they assume you have to go into an office, I've been lucky enough to have a workplace who let me work from home, and as I feel ok I can see no reason not to start testing the water and try a day to see how it goes and build it if it goes well. Looking forward to that.

If you like caravans and you fancy a laugh click here.

So far so good

Well, yesterday marked five weeks since I received my donor cells and today my weekly trip to the post-transplant clinic threw up nothing more than 'you're doing very well for someone at this stage of a transplant, see you next week'.

I didn't get any blood counts today as the results weren't back when I saw the consultant, but I feel it speaks volumes that he wasn't too worried, and he even suggested that I didn't need a full consultant appointment next week just blood tests. Last week my counts were: white blood count 5.4 (normal range 4-11), red blood count 9.8 (bit low but up from 8.9 the previous test, which demonstrates some recovery so no more transfusions needed), platelets 227 (normal range 150-400 and mine were about 200ish on admission to hospital) and neutrophils 4.51 (normal range 2-8 and back up to were they were on admission). This has been remarked as a 'very good recovery' of blood counts, and also makes it unlikely (touch wood) that the transplant will fail now. Yes we found out that even after engraftment it is possible for my immune system to fight back and get rid of the donor cells and it is possible that the donor cells could just stop working! Incredible stuff going on inside me right now.

Obviously I am still within the first 100 days where acute GvHD can kick in at any point, but the likelihood of this happening decreases with time and so far I have had nothing at all (I must admit to secretly wanting a bit as it shows the new immune system is attacking, but the consultant said that no GvHD does not necessarily mean that the new immune system isn't going to attack the Myeloma - it just isn't that simple, there really is no telling what is going to happen over the next few months). But really no gut problems, no skin problems, no mouth problems. As I say so far so good.

I have been incredibly tired, but this is rapidly improving and I have stopped needing to sleep during the day already, and really things are getting back to normal quite quickly. Although I'm simply not able to jump out of bed when our youngest comes in at 05:30 in the morning like I used to! We've even had a day out at the beach, bit cold - needed a hood on my bald head - but very enjoyable and nice to do something normal. I feel like the more I do the better I feel, although I have paid for it the day after a few times.

My brain is still a little chemo-fuddled as shown the other day when I tried to cook a meal from a well known 30-minute cook book and had to give up as I just couldn't follow the instructions. I read them about three times then just had to put it away and make it up. It was really hot noodle soup, and my made up version was very nice actually, although I ate far too much of it which is something I am doing a lot. I think after 5 weeks of hospital food having nice food is such a treat I can't stop. Jo keeps telling me that I'm attacking my food like it's going to be taken away from me but when it tastes so good, I can't help it.

I'm outta here

Yes it has been confirmed I will be discharged today. My temperature has remained below 38, and the 38 measured yesterday morning has come into question when the nurse this morning measured 38 in my right ear and 37.6 in the other ear, to which she said I was lying on my right when she came in so that is probably the reason it was a bit hotter in that ear.

I had a nurse say to me last night 'going home tomorrow then?', which was the first I'd heard of a definite time. Since then I've have the doctors confirm it will be this afternoon, once all my drugs are sorted. I have already packed so that there is no doubt of my intentions at least, all my bags are lined up on the bed ready to go. I cannot wait. And it looks really sunny outside.

My neutrophils continue their heady rise, they were 3.05 yesterday which is great just a little way to go to get to my Day-8 (i.e. pre-any treatment) level of around 5. The rest of my counts: platelets 148 (217 on Day-8), red blood count 8.6 (12.1 on Day-8) and white blood count 4.6 (8.8 on Day-8). So all looking good and I'll be in my own bed tonight, which is even better.

Why am I still here?

This is the question I will now be asking the doctors every day until they release me. I'm sat here feeling well (not 100% but well), as I have done for a couple of days, and I'm thinking they can't keep me here for much longer feeling so well?

My current list of ailments are:

1. Morning headaches, these are quite bad but I suffered them during my auto. They generally go off once I am up and about and following my auto they stopped all together when my consultant reduced the number of drugs I was taking post-transplant. So these are not a concern.
2. Tiredness. And by this I mean I get up at 08:30, have breakfast, shower, read the paper for a bit then go back to bed till lunchtime. A bit like a baby. But this is to be expected considering what I've just been through and is of no real concern either.
3. Temperature spikes. Every day, at some point, my temperature rises and hits 38 before coming back down again. Currently none of the tests carried out on blood, spinal fluid or the line have shown anything, so this is a little mystery. But it is the thing that is keeping me here. While this keeps happening no-one is keen to let me out, as it suggests some underlying bug. It can happen at anytime, generally in the evening or the night, however today it happened this morning. I was gutted to get through the night without a spike then do it a 6am. Weirdly I do not feel hot when it happens, and I certainly don't feel ill with it, it is generally a bit of a surprise when the nurse says 38.

But the temperature thing is getting better, a week ago I was averaging temperatures of around 39. I now spend the day at mid-low 37s then spike to 38 at some point before coming back down to the mid-low 37s. One of the doctors just told me he thinks this will stop happening in the next day or two. Then can I go home? He laughed but nodded. He doesn't make the decision though and he knows it.

I'm happy to say I have had enough now, tomorrow will mark five weeks since I arrived in this room and I never at any point thought I would be spending this long here. Mission Get Home is now operational.

24 hours of hell

Which started on Tuesday afternoon.

Lumber puncture at 14:00 taking fluid from the lower spinal cord area for virus testing (still looking for source of infection). It took a couple of attempts to get through as she hit something that made my right leg shoot up involuntarily a couple of times, but it was relatively painless.

Dermatologists came up at 18:00, had a good look at the rash which could be GvHD, could be drug related but hey we treat it the same anyway here's some topical creams to get rid of it. They took a small section of skin from my foream for biopsy, then off they went.

19:00: so tired laid on bed with all intention of watching a film but just couldn't keep my eyes open so just laid there trying to get to the latest point I could before taking my paracetemol, as I would not be allowed any more until 03:00 in the morning. Problem is I don't make decisions about my own body temperature and rigurs which came at about 20:00 with a 39.9 temperature. I hold off till 21:00, then get my drugs and relax into fitful sleep for a bit.

Wake at 01:30 and the whole process starts again, tingles, rigurs and me trying to control them and eventually calling the nurse to get paracetemol. Temperature 40.1 but not allowed anymore paracetemol, giving piriton to try to calm the shakes down which works a bit, but I'm very happy when IV paracetemol turns up at 02:30. Then have to go through the heating up as it takes effect with my skin feeling like I'm in the midday sun and sweating. I go from having PJs, a hoody and a dressing gown with layers of sheets and blankets down to just PJ bottoms in about 10 minutes. Wake at 06:00 with headache and rigurs request morphine and paracetemol, temperature taken and it's 39.9, paracetemol having no effect on my internal body temperature. I get up to go to the toilet and have to use my drip stand as support to walk to the toilet as I'm so dizzy and my legs hurt. The drugs put me back to sleep for a bit.

At 09:00 I get up to have breakfast, which I force down although it makes me feel really sick. One of the nurses comes in to weigh me and I stand up, but I get so dizzy just standing that I immediately step back and slump into the armchair and put my head in hands, panting and say 'I can't even stand up'. The nurse replies 'was that weetabix or shredded wheat you had?', 'shredded wheat'. And she leaves. Most of the nurses are first class here but there a few duffers (nice but dim) that slip through the net somehow. I then start to feel really dizzy, and feel heart flutters and I'm unable to get my breath, feeling like I'm going to faint. I buzz the nurse and say 'I really really don't feel very well could you do something'. Within minutes I'm on the bed with an ECG and two doctors and two nurses. But by the time any results are obtained my stats look normal. I'm left to sleep.

Here it gets interesting. My lunch is brought at 12:15 and after about fifteen minutes of mustering up the energy to sit up, I sit up. But I'm so tired I can't physically hold my eyes open to eat it. I'm taking a mouthful, leaning back and chewing with my eyes closed and inbetween mouthfuls just forgetting what I'm doing. Then the dizziness starts again, and the heart flutters and the shortness of breath...I take deep breaths to try to calm me but I can catch my breath, and I start to feel really faint. I buzz the nurse and they come in to find my heartbeat is 130+ with a low oxygen absorption. I'm immediately put on an oxygen mask, and within minutes I have 4 doctors and three nurses taking bloods, doing obs. Then I'm given a drug via an atomiser, I ask the greek doctor here what the drug is for and he says 'this drug is kepfatackalineaseetyjusssa for the lungs'. He is lovely this fellow but I rarely understand what he says, but I take comfort in that he generally makes me repeat things I've said at least 3 times. We get there in the end. But I don't know what this drug was doing, but it was for the lungs. I'm then put back on oxygen, all the while different drugs such as steroids and goodness knows what else were being given and I was barely aware, I could hear people asking me questions at times but I could not be bothered to open my eyes, then the next thing I know the room is empty, it's around 15:00 and someone comes in to tell me I'm going down to have my line out as it could be the source of an infection (if that is the problem) given that one side of the line had become blocked. I get up to go to the toilet and nearly fall straight over, a male nurse runs in and puts me back on the bed and tells me off for getting up. Then I'm wheeled down to vascular access where the line is removed, and due to a lack of anaesthetic resulting in a short, sharp zing of head clearing pain, half an hour later I'm sat up on the bed chatting to the nurse who I barely spoke a word to on the way down.

I then had an evening feeling fine, made some calls etc. Didn't sleep until 2am as I was having intense, completely absorbing 3D visions as I was relaxing in bed which went on for hours. To not watch them took effort, so, knowing this was probably the effects of the strong steroid I just went with them and they were amazing. It was like watching a completely bizarre but continous film, where I was simply an observer, the camera was constantly moving, along a kerb, up some stairs into a room where a scene would play out and then it would move on to some abstract of a wall of heads screaming with showers of hands falling into their mouths and pushing the heads out of the wall (I kid you not). It was great. But it was a night without paracetemol, or morphine or rigurs or sweats. And today has continued almost the same: I needed some paracetemol at 10:00 as my temperature had gone up to 38.6 and I wanted to go outside with Jo so I was given that to make sure I didn't go into uncontrollable rigurs at some distant point from the ward. But that has been it. I was given the steroid again at 09:00 and this will continue now for a bit as it will help with my rash too. Yes I went outside for the first time in 17 days, and it was sunny and beautiful, just like my wife who accompanied me. And I had a Magnum on a bench and it was good.

And my neutrophils have gone from strength to strength: 2.11 today! Once the temperature and rash seem under control I can go, the consultant thinks another week, I think Monday.

Sorry that was so long, I've just read through it.

Blessing in disguise

I'm going to keep this short as my raised temperature/fever has continued since Thursday night and I am completely exhausted. My temperature has barely dipped below 38.5 for 4 days and this afternoon got to 40.3 which was disappointing because it had been 38.1 this morning and I was starting to feel a bit better. I have just slept all day, even moving to the toilet leaves me feeling a bit dizzy, and I am having to take morphine to get round the headaches which have been relentless. I essentially sleep for about three hours a night as I have a cycle of painkillers and either headaches, temperature or dry mouth wakes me regularly.

But all this crap has a silver lining. My neutrophils continue to rise: 0.88 on Saturday, 1.08 Sunday and 1.15 today, and there is a good possibility that I am suffering from 'engraftment syndrome'. Apparently when donor cells are establishing themselves in the bones as they produce blood products they also produce other chemicals which can induce, in some people, fever like effects. Which will just stop at some point. And if it is this then that is wonderful: proof at last that my donor cells are doing something. There is also the possibility that there is an infection somewhere but so far nothing has grown on my blood cultures. I have developed a mild rash pretty much all over, which seems like an odd thing to be happy about, but it shows that there is possibly a little fight going on, which is what we want. It's a shame it has made me feel this shit so close to the date I was told I would go home, but I am so happy it is working.

And there really is nothing to worry about. The consultant here told me: 'more than 50% of our patients have temperatures, this is our bread and butter. Do not worry.' So I'm not, I'm going to bed.

I got the fever

After days of threatening to do so my temperature finally spiked above 38 last night and I am now on anti-biotics for three days to bring this under control. I had to provide all manner of bodily fluids for testing but apparently sometimes there isn't a reason for spiking it seems to be something that just goes with the territory of being neutropenic. The nurses told me they actually worry more if you don't spike as this means you'll probably do it within days of going home. I would not have gone home before the weekend anyway so this is a good a time as any for me to do it. I don't feel particularly ill and I haven't had any shakes, but it has absolutely wiped me out. This is the first day I have not taken my dressing gown off, and I spent most of the morning just snoozing, I have just had my lunch and I think I will return to snoozing right after this.

The worst thing about it was I spiked at about 19:00 last night. I then had bloods taken, swab taken for MRSA and full examination by a doctor, and they told me they needed to change the dressing on my line. So I said can I have a shower before you do that? They said ok, so I did. Then after my shower I covered myself in the very oily ointment that I have to for the dry skin I suffered after my auto and then got into my pyjamas. At which point the male nurse came and said 'we've got to go for a trip', 'to where?' I asked. 'We've got to go to A&E to have an X-ray', 'couldn't this have been done before I covered myself in grease and got into my pyjamas?' I asked, making it clear I wasn't blaming him. But the doctor had only just booked it so we had to go. The nurse left the room so I said 'I do not need a wheelchair', to which he replied 'you've got to go in a wheelchair I've already got it here look'. So at half nine last night I was completely unnecessarily wheeled down to A&E in my pyjamas, with my face and head glistening like a well polished car bonnet.

The good news is my neutrophils which were 0.08 on Wednesday, were 0.19 on Tuesday and 0.45 today! I think I can round that up, it's 0.5 to 1dp, no-one ever says 'nought point five zero' (that is the consultant in me talking) so I consider that today as of lunchtime I am no longer a neutropene! And I have been given permission to see my kids on the landing outside the ward tomorrow when Jo comes, which is very exciting. It won't be for long, but then it also won't be long before I get out with neutrophils rising at this rate.

The other thing I've had time to do is write my thank you letter to my donor, apparently Anthony Nolan will translate it into German before sending it on; they really do provide an amazing all round service to the transplant process. I will be signing up to give a monthly donation very shortly. Anyway just in case this blog ever reaches any further than all you good people that know me and/or have already signed up to be donors, I am sharing the content of this letter just in case it helps convince someone that being a donor is something very, very worthwhile.

I am writing to you as two weeks ago I received two bags of stem cells which you had donated for me, and I wanted to thank you and let you know what a wonderful thing you have done.
I am a 33 year old man, married with two young children both under 5. A year and a half ago I would have considered myself fit and healthy. So when I was diagnosed with Multiple Myeloma (a rare blood cancer with a life expectancy of three to five years with conventional treatments) following the collapse of one of the verterbrae in my neck, this came as a great shock and caused us much grief.
This was not made any better when my disease did not respond particularly well to first then second line treatments and I was found to have a tissue type which showed up no matches on the worldwide donor register at the time. At one point we were told we might never find a donor, it was quite a bleak outlook. Then you came along.
Currently the only way Myeloma can be cured is by having a donor bone marrow transplant and your stem cells are, as I write, finding their way into my bones to ,hopefully, produce blood and bone marrow which is Myeloma free.
You have given me the chance to get my life back, the chance to see my kids grow up and grow old with my wife. Things that six months ago were looking quite unlikely for me.
It is not possible to put a value on your kindness and I don't think it is possible to thank you enough - although I hope this letter goes some way to showing how much it means to me.
I have also been through the process of peripheral stem cell extraction and I know it is no small act.
So thank you again for what you have given me.

I'm going for a snooze.

Nice and shiny

Thought you might like to see what it is like to have most of your hair fall out. Well not fall out exactly, I had to vigourously rub it out using a thick moisturiser. Would you? Well here it is anyway:

GOING...

GOING...

Like the best shave ever, chinny hair goes too...

GONE...pretty much, I have shaved the remaining hair off as it was a bit patchy and made me look ill.

...and look hairy palms! I know there's a saying about hairy palms but I can't think what it is right now.

You know the most annoying thing? Head hair: 'see you later', facial hair: 'I'm off', armpit hair: 'I'm outta here, almost', (and for the more inquisitive amongst you, I'm thinking Simon in particular, yes that hair has gone too), but nasal hair: 'where am I going to go I've got an important job to do'. Yes having just simply pulled my head and facial hair out I had to snip my nose hairs because those babies are attached (I tried to pull one out and that did make my eyes water).

So there we are shiny and bald again, but still with eyebrows.

At least the nice weather is over

As some of you are aware my littlest ended up in A&E on Thursday afternoon having taken a full on smash to the face with one of those circular-any-direction swings. It had just been pushed really hard and left swinging and she decided she wanted...actually who knows what she was thinking when she ran full pelt and, despite Jo's best efforts to stop her, stood right in the centre of the swing area and took it at full speed, launching her backwards and leaving her face covered in blood and Jo having to run with her to the doctors and then having to make a mad dash to A&E (big thanks go out Vicki for responding quicker than an ambulance could have to get everyone there and back, although I should make it clear that no speed limits were broken). The upshot is that she seems ok, and the doctors don't believe anything is broken (thankfully babies don't have bones in their noses for good reason) but she is developing a black eye and her nose is a bit conk due to the swelling on her face. They are going back next week to have it checked.

This has left me wanting to be at home more than at any other time I've been in here. I have seen pictures of her, and spoken to her and she is fine, but all I want to do is give her a cuddle. And the same applies to the rest of my ladies. I realised on Friday that it was Day 17 since admission (Day 8 of the transplant) which was the day I was released following my auto, so this is now the longest I have been in hospital and away from the kids. And I can honestly say it is getting a bit harder now to get through the day without feeling, for want of a less teenage expression, a bit bored.

It also got me thinking that, although she is ok, it could have been a lot worse. And it made me think about what a knife edge we live on, this tightrope where a little step to the right or left is the difference between life and death. Such little things, brief moments, small decisions can, potentially, have such a huge impact on your life. Even scarier is that it is not only your decisions, but other people's too, and things that are completely out of your control. If there is one thing being diagnosed with Myeloma has made me realise is that it doesn't matter what kind of person you are, how you treat people, how much you exercise, what you eat...shit things can happen to you. And suddenly, for me at least, all these things that I took for granted such as the blessed good health of my kids, the safety of the area we live in, and all the things I would have thought of as unlikely and therefore not even worth worrying about such as my wife and kids being involved in a huge motorway pile up - all suddenly become real possibilities. The likelihood of a 32 year old getting Myeloma is ludicrously small, tiny in fact: <1% of diagnosed cancers every year are Myeloma and the median age of sufferers is 69. Unlikely things do happen and cannot be ignored. It is a reminder of what a blessing life is, and how we really shouldn't waste a single moment, whether that's bearing a grudge or moping around about something that really isn't worth it when you put it into the perspective of: you could be dead tomorrow. And it makes me want to be with my girls all the time.

Went for a walk yesterday, I found out I am allowed off the ward when neutropenic but only down to this corridor on Level 3 in the evening when it is thoroughly deserted so I will not come into contact with anyone. If you can't imagine what an empty corridor half a mile long looks like I took a picture (I would have taken one even further down the corridor but someone came out of a side door making me suddenly put my camera away, then  I heard a security camera move and realised I was being watched and probably looked like a potential terrorist so I had to move to where there were no security cameras).

The nicest thing about the walk was finding this area where there were open windows, and although I know that the advice is not to have fresh air due to spores, I decided sod it and took a few good lungfulls as you cannot know how much you miss a fresh breeze until you haven't had one in your face for a week. I'm still ok so I assume I did myself no harm.

I seem to be getting over the small amount of nausea I was suffering now, which is great. I have not lost much weight at all and had actually gained some weight today compared with yesterday. I have developed rather shaky hands today, but this is apprently a side effect of the Tacrolimus (the immunosuppressant) and it is not that bad and nothing to worry about. My hair has finally decided it has had enough and is departing and I have a funny feeling I am going to be balder this time than last time seeing the rate of loss...as long as I keep the eyebrows I don't mind!

My neutrophils are on the way up 0.01 on Friday, 0.02 on Saturday and 0.03 today, but I think any doctor would say that these are not significant rises and more likely demonstrate the error margin in the measurement technique when neutrophils are this low. I have been a neutropene for 7 days now, so we are expecting them to rise any day...come on neuts 0.5 then I can go home!

Flatline

Today I finally flatlined in terms of neutrophils, I now have 0 white blood cells and 0 neutrophils. It is now just a period of waiting for my new stem cells to start making my blood and hopefully in that time I don't catch any bugs as this results in days on anti-biotic drips which is just a pain more than anything else. So I am no longer making blood, my platelets have plummeted too. The only blood count not coming down in the red blood count, but then red blood cells apparently have a life cycle of 120 days so do take longer to decline.

Bizarrely, I think anyway, I'm still feeling fine. I have no gut issues, no mouth problems and I've taken to doing 5 mile sessions on the exercise bike to expend some energy stored up from doing nothing all day. This has made me feel even better and less lethargic than I was a few days ago. I would be seriously worried that this treatment wasn't working if it wasn't for the fact that I have no blood cells!

Currently the doctor doing the rounds on the ward is a lady from Barcelona who is head of the European Transplant Board. I was told if I have any questions about current research she is the lady to speak to. So today I asked about my chances of being cured, given that the figures we were given was based on research started in the mid 90's. Her answer was that there is currently lots of research going on into comparing the outcomes of auto-auto and auto-allo tandem transplants (I am having an auto-allo tandem) and her opinion is that for me, being young (relative to most of the codgers with Myeloma) and having had a strain of the disease that was proving difficult to control, an auto-allo holds the best chance of a cure and that the chances of being cured is 40-50%. This is what we told way, way back when we first discussed allo transplants with my consultant. I then asked what about the things you can do now post-transplant that would not have been available 10 years ago, such as donor lymphocyte infusions, and she said taking into account DLIs you could increase your chance of being cured by 10%. Which is great, this makes it more of a chance of being cured than not, which I'll take quite happily.

Neutro-peenic, yeah!

I've officially gone neutropenic today, neutrophil levels are down to 0.47, so just below the 0.5 threshold. This means I am no longer allowed off the ward and could not have the cheesecake I ordered for my pudding today. Having said that, it is nice to see things going as expected. The general projection for neutrophils from now is that they will flat line in the next couple of days then it is 10-14 days before they get above 0.5 again.

I woke up this morning with really achy hips and legs. When I got my donor stem cells one of the nurses said it would take 24 hours for the cells to find their way to the 'long bones' and she sort of waved her hands around her hips. So asked another nurse this morning if achy hips was a good sign that the stem cells had found their way into my bones. She said some patients do get achy but I was informed by a doctor that it has no bearing on whether the stem cells are in my bones or whether the transplant is going to be successful. Every stage of this I have the immense joy of one bit being done, followed by endless worry that the next bit isn't going to go to work. Now I've got the cells, I'm just agonising over whether the cells will engraft, I need to stop this as it really isn't healthy and doesn't make success any more likely, and actually just makes my time in here a bit more tense. Need to relax into this, 'take every day as it comes' the nurses keep telling me. I shall try.

I have one bit of good news today. I have recently found myself becoming quite angry at cook books that refer to a 'glug', 'lug' or, more worringly, a 'slug' of olive oil. What is this? I would shout. Is a slug more than a glug? Well thanks to the main proprietor of this problem Mr. Oliver we now have an answer to one of these questions. In his monthly mag he reveals various measures in the rear index and I can happily report a 'glug' is 'about 20ml'. So approximately two thirds of two tablespoons. Or around four teaspoons. There, we can all rest easy knowing that we will no longer be under/over oiling.

Not much to report

I thought I had better blog, but there is little to report apart from how ok I'm feeling. I'm not neutropenic, my neutrophils have gone up today to 2.4 from 1.4 two days ago, but this is apparently nothing to be concerned about. I have been warned that the next week will be the hardest: low blood counts, Melphalan making itself felt in my gut and nether regions, sore mouth, etc...but so far so good.

Not being neutropenic meant I could go out for a walk round the park today with Jo in the first rays of summer sunshine which was lovely. I have been warned that I may burn easily post-transplant so I wasn't allowed to sunbathe, but I wouldn't do that in a park anyway so that's not a problem. Had a Magnum and a Coke in the sun (really this is as exciting as it gets), had sausage and chips for my tea and now I'm sat here trying desperately to think of things to write.

Ate a pork pie really late last night and ended up having weird dreams that involved work colleagues and some precarious climbs up railway sidings. Didn't feel rested when I was brought my breakfast at 8am. The weekend staff do come a bit early with brekker for my liking.

Day 0

Day 0 finally came today. The cells were in the lab this morning and were processed and counted and goodness knows what other checks they have to do, before being delivered to me on the ward at around 14:15. I had to have some pre-meds of Piriton and hydrocortisone to avoid any nasty allergic reactions, and I was given some nerve drug to calm me down as it was agreed that I was beginning to look pretty stressed. I had been feeling really sick after lunch and had been given some dexamethasone (steroid) to help with this, this probably got me all a bit racy and tetchy so they needed tramazepam to bring me back down again, then a heavy dose of piriton meant that I fell asleep while I had a visitor here this afternoon, bit embarrassing, but I think he understood.

So all the worries about medical fitness, donor eligibility, cells being extracted, cells turning up...all gone. Two bags of stem cells flowed steadily into me over the course of just an hour. My view of the cells in the bag is shown above. It looked like a bag of passata. As with the auto transplant the cells were big enough to see with the naked eye, pouring down the tube into my chest. And then...nothing.

I've been told it takes 24 hours for the cells to find their way into the bones, then 2 weeks(ish) to settle and start producing blood for me. Then there is 60-100 days where I remain on immunosuppressants even though the bone marrow is working, to avoid any rejection issues. Then after this time period the immunosuppressants are eased off, and then we wait to see whether the cells are happy together or whether they are going to attack each other. The severity of any reaction is gauged and medication is varied depending on that to avoid any signficant damage to me whilst not suppressing things so much that the new immune system doesn't fight off the Myeloma (which is ultimately what we want). This continues until things settle down (you might be able to tell from that comment that I am not sure what happens after this point but I have read it can be up to two years that the Graft-versus-Host issue may still be signficant).

But I don't think I can end this without stressing again how unbelievably wonderful this day is. A day we never thought we would see as we were told there were no donors. A lady in Germany who does not know me and I do not know her has undergone what is essentially a week of treatment: 5 days to get her body producing stem cells and then eject them from the marrow into the blood, and two days of donating. Yes, the reason the cells were late is that she had to donate twice to get the required number of cells for the transplant to go ahead. She gets no money for this, no recognition (apart from the fact that I am allowed to send a card via Anthony Nolan), and she's probably got a day off work tomorrow before the weekend. And all the transport connections from her to me worked, the cells got delivered, still fresh, and I watched them go down a tube into me earlier today. And now I'm waiting for them to do the business. That is just amazing.

Apparently some transplant patients consider this their second birthday, so every year they have a proper birthday and a born-again-birthday. I think this an excellent idea and I shall be instigating my second birthday party (my other having been already celebrated in April on my proper birthday) for me this time next year. And you're all invited.

Day -1 v2

Found out today that the donor cells will be arriving tonight at around 10pm, and therefore I will not get them until 10am tomorrow as they need to be processed by the lab. So tomorrow is now my new Day 0.

Having not really slept last night due to build up of nerves this was a little disappointing, but at the same time a little exciting as it confirms that they are on the way. They have been successfully donated and are on their way to me as we speak, so those fears of them not turning up ebb away just a little more.

Day -1

So tomorrow is the big day. I have been informed that the donor cells are due to arrive at either 13:30 or 17:30 tomorrow, depending on whether the donor required one or two sessions on the stem cell extraction machine to get the necessary quantity to fill me up. The cells will arrive in a bag, be administered like a blood transfusion and will be over in an hour. And basically nothing happens. I should become neutropenic at the end of this week, meaning I will not be allowed off the ward, and then it is a wait of 1-2 weeks to see if the donor stem cells can start to generate blood cells for me. Once they do, I go home. It is months down the line before issues of Graft-versus-Host start to become significant.

After spending 22 hours on a drip from 11am yesterday morning until 9am this morning I managed to get out today and go for a big long walk round the park in the sun, which was nice. Got a bit hot and sweaty though and really needed a wee for a large part of it, but it was good to get out while my neutrophil count is still around 4 point something.

I am starting to feel the effects of the Melphalan, just a little loss of interest in eating. This underlying nausea when food turns up, and about halfway through I could just leave it...but for the sake of my health I plough on and eat every last crumb. Although I had to level a complaint at lunchtime when my chicken curry turned up and the portion appeared to be a single large spoonful with only one small chunk of chicken breast in. I was told that too many people ordered the curry today, it was a popular choice. But then the other choice was burger and onions (and I think it's the tinned type if you remember those?) which isn't appealing. On the plus side because of my dissatisfaction the lady who does the meals gave me the 'choices' menu like I had last time which means I can, within NHS reason, have whatever I want. Fish fingers, chips and tinned spaghetti anyone?

Leggy Blonde?

I wanted to post a picture of myself for a couple of reasons. I shall speak of these after the picture.

The first reason was there are a number of people who follow this blog who saw me perhaps 2-3 months ago when I was completely bald, a bit on the pale side and half a stone lighter. So I thought before that happens again I should show how much things have changed in the intervening months, how quickly the body recovers. Hair back, beard back, eyebrows fully restored to their former bushy glory plus I've surpassed my pre-auto transplant weight. It is funny that in this calorie-counting world we live in a transplant ward is probably one of the few places in the world where 'I've put on half a stone' is met with 'Excellent', and telling your consultant 'I'm eating as much as I can', is praised as a 'really good idea'. So refreshing.

The other reason was that I had to shave my head again as my new hair growth was starting to resemble the soft, springy side of velcro. Growing in really thick tight curls, very wiry. And as I have to moisturise my head to avoid dry skin it had to go. I had read that having an allo transplant can change the colour of your hair as it affects the DNA in the body. So with this being a German lady, and I hope I'm not being too racially stereo typical here, I could become blonde. So I thought I had better document my, potentially, last dark days.

However on a bit of further reading I have found out some interesting stuff. When I receive the donor cells they should replace my bone marrow and start to produce all my blood components. If some of my bone marrow is left the new blood cells may become some mix of mine and her DNA, or her cells may take over and my blood may be completely my donors. But, this DNA change does not permeate tissue and other cells in the body, meaning if I were to be DNA tested using a skin sample the test result would be different to the result of a blood DNA test! This would make me a chimera, i.e. someone with more than one set of DNA. Chimera Nash. But my hair colour won't change, I won't get a bigger beard and my beer drinking capacity will remain woefully inadequate for a man of my size.

Managed to get off the hospital site today, even drove the car, out to a NT property with Jo. Had a walk round some lovely herbaceous borders (herbaceous: a plant that has leaves and stems that die down at the end of the growing season to the soil level), then went for Sunday lunch. Only to find the Sunday lunch on offer was very bad value for money at £9 for what appeared to be one slice of organic meat and only a smattering of locally grown vegetables. So we had curry at Waitrose for a fiver, lovely.

Have my dose of Melphalan tomorrow (280mg compared with 430mg I had for my auto transplant so hopefully side effects will be a bit reduced), but because it is such a nasty drug (is related in some way to mustard gas I understand) I have to be on saline drips for 24 hours simply to keep my kidneys well flushed to minimise damage to them. So the next week or so is likely to be similar to the first week of my auto: going off food, sore throat and gut troubles (that is all I'll say). An uncomfortable week, but nothing that can't be tolerated, and I've just got the box set of Lead Balloon so that's me entertained at least.

What a dull day

What an incredibly dull day. I don't even know if there is any point in writing this. I didn't even come out in a rash today, which is what has happened for the past couple of days after receiving Campath (which I have to correct again is NOT a chemo drug it is a 'monoclonal antibody', a biological therapy used to fight cancerous lymphocyte cells but in my case used to get rid of lymphocyte cells and thus disable my immune system). No side effects at all, so I just sat here watching DVDs and reading I, Partridge (thank you M&B that was a good pres).

The problem is is that I am tied to a drip for at least 5 hours, so even though I'm feeling ok I have no choice but to stay in my room for much of the day. I was so bored I even tried to find out if Tunnock's claim to make and sell 5 million Milk Chocolate Coated Caramel Wafer Biscuit bars every week was true. That is what it says on the wrapper, I mean 5 MILLION, EVERY WEEK, that's ridiculous. Although I have to admit having had one today they are really nice. But 5 million?

After 30 minutes on Google I could find nothing to disprove this mad claim. But I did find that all the Tunnock's confectionery is still made in one factory in Scotland, and the factory makes all the wafers, caramel, marshmallow and the especially sweet chocolate. 550 employees. That's it. To make 5 MILLION wafer bars (plus all the rest of the stuff they churn out like teacakes and those horrible coconut marshmallow things), I don't buy it, but what can I do without hard evidence? I did find a rather amusing eating challenge blog related to Tunnock's wafer bars here.

Went for a nice long walk round the park after being disconnected. Had my tea: cheesy cauliflower and broccoli pasta with a corned beef sandwich and soup. Jo told me I should say that the reason my tea's are a bit odd is that they serve main meals at lunch (today was fish and chip Friday), tea is supposed to be a small portion of something such as pasta, and only greedy people need to bulk it out with a sandwich. This is true, but I don't think this should stop me ordering bizarre combinations and documenting them for my own entertainment. You never know some might work.

NB: cheesy pasta and corned beef sandwich isn't one of them.

First day of drugs

My day began with a nice lay in, till about half eight. I wasn't woken by nurses for blood today and I made the most of the relative peace. At around 10am a nurse poked her head round the door and asked 'are you ready for chemo?', like it was the hairdressers. I'm not used to being asked this, you don't normally get the choice, so I said yes.

I then had 30 minutes of Fludarabine and 4 hours of Campath which I now believe is also a chemo drug. Get this: (taken from the info on campath) 'Campath locks on to a protein called CD52, which is found on the surface of a type of white blood cell called a lymphocyte. This trigger's the body's immune system to attack the cells and destroy them'. It's like a war going on in my body, with drugs created to make me attack myself. The side effects of this are that on the first administration of Campath for about 1-2 hours you go into a bit of a fever state, high temperature, rigurs...I also got a pulsing pain in my spine similar to that I suffered the day before my stem cell harvest. This was all adequately controlled with pain killers and anti-histamines, but these left me rather drowsy and I spent most of this afternoon dozing in bed. I get another 4 days of this but apparently the first day is the worst one.

Tea tonight was a bit of an odd one: veg soup, chicken in breadcrumbs and scrambled egg with a cheese sandwich on the side. Dessert: ice cream and yoghurt. I cleverly decided to put the chicken in the cheese sandwich and with a little lug of ketchup made a slightly more appealing McChicken-on-a-shoestring-style sandwich. Which I had to dip in my soup as it was a bit dry.

Day -8

I've been admitted! There was the small possibility of me not going in today following my line insertion if there were any emergencies or people needing a bed more than me, but thankfully that was not the case and I am now in my own little room on the ward simply waiting for my treatment to start.

I would like to thank everyone who sent a message yesterday wishing me all the best, thank you it means a lot to me that there are so many people rooting for me.

My day started with my second ever Hickman line insertion. The surgeon performing the procedure again offered me the sedative, I said that last time I didn't have it and therefore I wasn't bothered about having it this time. She said most people have the sedative, but it's fine if you don't want to...she repeated this about three times before moving on, making me worry that maybe she wasn't overly confident of performing this without causing pain and that maybe I should have the sedative...but it was too late by this point as I'd been a bit too adamant about not having it. And I have to report that, although uncomfortable, it really didn't hurt that much during the procedure, although as she stitched up one of the holes it became quite apparent that the anaesthetic had worn off a bit as I felt her push a stitch through my skin and pull it out again. To which I drew in a large breath and, I admit, uttered the F word. But far from offering more anaesthetic she just said 'sorry mate' and ploughed on! For four further stitches! Each one followed by some expletive from me. So it's in, a bit sore right now, but so much nicer than having a canula on your arm.

According to my schedule today is day -8. Next Wednesday I will get the donor cells, which is Day 0. It was really nice today when Jo said someting along the lines of 'if the cells turn up next Wednesday' to the consultant to which he replied 'what do you mean if? they will turn up'. After all this uncertainty about getting these donor cells it was nice to have such a definite from him. He also, without ruling out any of the nasty things that can happen during transplant, gave us a much more positive run down of side effects. Phrases such as 'but this doesn't happen in the vast majority of cases' and 'this only really happens in 3-4% of transplants' were used rather than 'some patients who have these transplants wish that they'd never had them'; which is the kind of thing they were saying a few months back when far riskier procedures were on the table. We left with the impression that he thinks that I am going to get through this ok, which is something I've not got from him before. Which is great. Plus as he went through the consent forms he ticked a box that has never been ticked for me before, a box which said 'Curative', and he added 'we are aiming to cure this, ok?', oh yes.

Also got a serum free light chain result from the 19th June and it was 39.8, down again from the last test. I am so close to remission, if it was just below 20...still I am going into this in the best possible state, with very low levels of Myeloma cells, and that is what matters.

So up until Sunday I will get 60mg of Fludarabine (chemo) and 10mg of Campath (immuno-suppressant), on Monday I get Melphalan (more chemo: 280mg, so about 2/3 of the dose I got last time) and then on Tuesday I get the immuno-suppressant drug Tacrolimus which I then take daily all in preparation for the cells on Wednesday. All this is to knock out my immune system to stop me immediately rejecting the incoming cells, allowing them to engraft and, hopefully, take over.

Out there somewhere this German lady is finding out that next Tuesday she needs to donate for me to get them on Wednesday. So as soon as I possibly can I will be having a Bratwurst and Riesling party in honour of this great lady. And you're all invited.

Up Again

I was reminded today of a conversation I had with my transplant nurse a few weeks ago when she informed me of my donor being medically unfit, but there was a second donor: the wonderful 50 year old German lady. I said that with her being 50, surely she has been on the register for a while as the cut off (I thought) for new donors is 40? My nurse said 'are you suggesting that this is someone who was missed when we first looked?', I hadn't thought of this implication in my question as it was off the top of my head but I said 'yes I suppose so'. I was then, in the nicest possible way, told that I have enough to worry about without spending time worrying about whether the experts involved in my case are doing their jobs properly. She was very nice about it and assured me that this lady was a new donor and that I should not waste time worrying about them doing their bit, they were doing everything they could for me.

So it was today that I was suffering with rising anxiety levels because it had been so long since I'd heard anything from the hospital. I should remind everyone that the last time I didn't hear, the whole thing was cancelled, so I think my anxiety was justified. But I really didn't want to appear to be questioning them when I had been told to 'wait until you hear something, it could take 3-4 weeks'. I had half decided to give my transplant nurse a ring tomorrow and then I get a call from my consultant - which immediately put me into a scared silence. He must have sensed this as he told me straight away that he wasn't ringing with bad news. He asked me when I was due to come in, and I said I hadn't heard. He then looked in the schedule and said 'you're due in next week'. He explained there was a note on my file which said the lady had had the medical done yesterday and we should get clearance on Friday. So, I asked, it is possible she could still be unfit? Yes but generally if there is anything serious they ring him straight away to let him know. As he had not heard anything, that is a pretty good sign there is nothing serious, and if that is the case, he told me, 'I'm expecting to see you on Tuesday'. Tuesday?!!! What the frip? So this weekend is suddenly my last weekend before going in (cancel camping again), so I need to pack again...My consultant apologised for the fact that I didn't know, but I said this is great news, this is what we've been waiting for, we've been ready for weeks.

So, although there is a always the possibility of some hiccup, I should be going in for transplant on Tuesday. It's finally upon me and I don't feel scared, I feel ready, it's been such a long wait and this is the 'very small light at the end of a long tunnel', which is how the potential cure for Myeloma was put to us by a very good registrar right at the start of all this. A lot of my anxiety has been based on half believing this transplant will never happen because something will always go wrong...well God bless the Germans.

Slightly gutted that I have been keeping my hair short as when it gets long I see these thin white hairs sticking up and I think they really typify the chemo/cancer fuzzy look, and also I was told to keep them short to avoid breaking these feeble hairs and damaging the follicle. Well, I've realised they are grey hairs, more then I ever realised I had. And they grow so much faster than all the rest of my hair. Does pulling one out create two?

Not so bad

I've had a few phone calls and messages from friends who have read the last blog and are really sorry to hear the bad news, and I realise that I may have been overly negative in that post as that was how I was feeling at the time. I shall acknowledge the disappointment of having the transplant pushed back 3 maybe 4 weeks and proceed on a much more positive note...

I had an appointment with consultant yesterday and we have it confirmed that we have another donor. She is a female, 50 and from Germany. She is a 9/10 match, so as good as the Portuguese male, and the slight increased risk in GvHD which we will get due her being female is generally controllable and this can also be a good thing as it also means an increased chance of GvD which we want. He discussed the odd balancing act or trade off which exists because of this, i.e. they want to minimise GvHD but they want GvD, GvHD is nasty but is generally controllable and generally short-term, GvD is desirable as it results in the long-term cure. So for short-term discomfort you get long-term cure. The less short-term discomfort the less likely this is to cure. Are you happy to take a little bit more risk with short-term affects if it means you are more likely to be cured? Yes I bloody well am. So bring on the woman.

I don't want any more jokes about getting a sudden urge to knit in hospital.

We also found there is another potential donor they are looking into before this goes ahead just to make sure she (it is another woman) is any better. Results of SFLC and bone marrow aspirates show no increase in Myeloma cells again which is great and maybe the reason my consultant feels he has a bit of time to look into another donor first. The urgency is there but not as bad, and I think the fact that 2 donors have been found has possibly made them think it is worth keeping on looking for more. Which makes me feel that any nasty procedure which was discussed a while ago is well off the cards now. Which is great.

So we feel loads more positive about all this having had this meeting so I want to make sure anyone who cares realises that this loss of a donor, although disappointing, really isn't that bad.

I also passed my lung function test, so I am happy that nothing to do with my body that will hold this up. It was also conducted by a much more relaxed fellow who explained everything to me, let me see the computer screen as I was doin it and just kept telling me 'that was spot on'. He made me realise the last tester's hammering for that 'last little bit' in my lungs was actually a bit unnecessary as my lungs are well within the normal range and that last little bit would have made no difference to the results!

Delays

Today was supposed to be my last week before going in to hospital for the transplant, we were waiting for confirmation from my donor of a date when he wanted to donate and I would undergo tests this week to check my fitness to go through the procedure. I went in today for the kidney function test which involves me being injected with radioactive material then having blood tests after 2 hours, 3 hours and 4 hours to see whether the substance has been adequately dealt with by my body. On Thursday I will be having the dreaded lung function test.

Now I have been getting progressively more anxious in the run up to this transplant and have stated I would relax a bit when I heard the donor had set a date, but would not be completely happy until those cells were there in front of me. This anxiety was based on my fear that he would pull out, that they would not be able to find a suitable time or that the plane carrying the cells would crash with my cells on it. What I had not planned for was him being found to be 'medically unfit' to donate; this is what the transplant nurse informed me this morning. In what way we will never know, but in one second suddenly all the hope and happiness that had hinged on this one fellow being found, against the odds, to match me was gone. My stomach dropped in that way that reminded me of the feeling of pressing 'send' and realising that you have just replied to all. But worse, much much worse.

Then in the next breath the nurse told me that there is another donor who has always been there and who is an equally good match in terms of tissue type, the reason they chose the Portuguese male is that the other donor is a 50 year old German woman. However, if she had been the only donor available they would have gone with her straight away. She has had 2 children, and both this and the fact that she is a woman make Graft-versus-Host Disease more likely. The nurse was quick to point out that GvHD to some extent is desirable as this means you are more likely to get the desirable Graft-versus-Disease effect, and she also told Jo later that they do plenty of female-male transplants and that the GvHD is generally controllable. She also said it would be very unlikely for both my donors to be found unfit to donate - however it is very unlikely that a 32 year old would get Myeloma, but I did - so my anxiety about getting these cells will not diminish now until they are there, in a bag, going down a tube into my arm. Her age may affect how long it takes to get the number of stem cells required to do the transplant as the bone marrow is not as efficient at producing cells as it gets older, but there is no reason to think that the quality of the cells would be any less than those obtained from a 37 year old man. The ball is now rolling to get in touch with this lady in Germany to find out a suitable date for donation, and undertake the tests for medical fitness, this will take a further 2-3 weeks.

So another rollercoaster day at Addenbrookes. After the conversation with the nurse I didn't know what to feel. I went to loos and cried for about 5 seconds then pulled myself together as I am in no worse position than I was in yesterday. I am still a man (for now) awaiting a transplant with a suitable donor for whom we are awaiting confirmation when and whether they can donate. It's just another 3 weeks of limbo time.

Result! Now to the next one...

Just returned from a pre-transplant clinic appointment where I was provided with two great results: my serum free light chains have reduced to 54, which is fractionally less than last time where the result was 62, and back to the level recorded in March. As far as my consultant is concerned these movements are so slight he considers them to be negligble and therefore my levels are stable. He also had the results of the bone marrow trephine biopsy which is where the core of bone marrow is subjected to some dye which shows up the Myeloma cells (a bone marrow biopsy is made up of bone marrow aspirates where the liquidy bone marrow cells are sucked out and put onto slides then inspected under the microscope, the number of Myeloma cells present is estimated, this is less accurate than the trephine method but, as noted in my last blog, the pathologist reported no excess plasma cells). The pathologist reported that the trephine biopsy also showed no excess plasma cells. This means I have achieved a 'very good partial remission', the only thing standing in the way of me and remission is that my SFLC are still a bit higher than a normal persons, but this is still an amazing result. And this is why my allogeneic transplant is now planned for the week of June 24th!

This has kick started the whole process, meaning over the next three weeks I will again have lung and kidney function tests, another bone marrow biopsy and I will find out shortly when my donor is available to donate giving me a precise date for transplant. I was right in saying that the cells are collected from him the day before I need them. They will be transported from Portugal to me within 24 hours on ice, and 'not by Parcelforce, we have our own couriers' my consultant reassured me.

My consultant also confirmed I will have a 'mini' allo - he screwed his nose up at the term, saying there is nothing 'mini' about it and prefers the term 'reduced intensity' allogeneic transplant. It is very unlikely I will have any radiotherapy as part of the conditioning and will receive a combination of chemotherapy drugs, Fludarabine and Melphalan (again), to knock out my immune system, plus an immuno-suppressant Campath, all to stop me rejecting the incoming donor cells. The Melphalan will be around two-thirds the dose I had before but it will still make all my hair fall out again. I was slightly disappointed with this having read a blog last week of someone about to have a mini allo being told that the conditioning would be a walk in the park compared with that of the auto she had just had, her hair won't fall out and she only needed a tube into her arm (a picc line) rather than into her chest (Hickman line). I am having a Hickman line again, and the Melphalan is being used again because it has been very successful in killing the disease and I tolerated it so well. So there we are, every case is different and I should not assume because one person is having something I will also have that. I am unlikely to be part of the clinical trial I mentioned as this is currently on hold and my consultant does not want to postpone treatment based on getting onto a trial, which is fine by me.

I asked whether the mini allo is less likely to result in a cure as it does not provide the conditioning treatment normally used for allogeneic transplants, which my understanding was a big influence on the effectiveness. I was told that the data to be able to answer that are just not available. How could my consultant agree to a full intensive conditioning regimen, which would increase my chances of dying during procedure, when there is no data to say whether or not this is any better than reduced intensity conditioning? The conditioning treatment is used in this case to suppress my immune system to avoid immediate rejection of the donor cells rather than wiping out my bone marrow and Myeloma, which is what the conditioning is used for in the auto, and my Myeloma levels are very low, so really the reduced intensity should achieve what they want, and my new immune system should do the rest...we hope.

Finally my consultant went through the rather scary side of this kind of transplant which is Graft-versus-Host-Disease, both acute and chronic. Both of these tend to show up in a similar way, generally skin rashes, gut problems and liver malfunctions. Acute GvHD can happen in the first 3 months after transplant, chronic starts later, can be long term and can also affect the lungs. In severe cases the patient can suffer liver failure, or skin that thickens and hardens so much it starts to affect how much they are able to move. GvHD only starts once donor cells have engrafted, meaning once it starts there is no turning back, you can't get your own cells back and it is simply a case of treating it and suppressing the immune system to minimise the effects. When GvHD subsides some people are left with lifelong health issues, but it is worth noting that most people suffer GvHD which is suitably controlled, with no signficant long term problems, and the effects reduce with time as your body becomes more and more your donor's! As this happens the amount of immuno-suppressant drugs is reduced, allowing your new system to take over.

Bizarrely some GvHD is wanted because this means the new immune system is recognising your body as foreign, and the hope is that it will also recognise the Myeloma as foreign leading to the desirable Graft-versus-Disease (GvD) where the new immune system does something which mine doesn't, which is attack and kill the pesky Myeloma cells. And there is this balancing act because the transplant doctors need to suppress the immune system to stop rejection and minimise GvHD, but if they suppress it too much they don't get GvD. If the immune system does not attack the Myeloma cells, then Donor Lymphocyte Infusions (DLIs) can be given whereby my poor donor has to return to donate lymphocytes which are then given to me to boost the GvD effect. It can also increase GvHD too, so these are not given lightly and not during the early stages of the transplant (6 months down the line at least).

Despite this I feel that this is a moment to celebrate, I have officially very, very little disease in me and I am about to embark on what I hope to be the road to being cured. I will certainly be enjoying a few beers over what promises to be a wet, windy Jubilee weekend. I will also not cancel the proposed BBQ, if I did I couldn't call myself British could I?