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.