Finally going

My hair is finally falling out. After being told it may fall out from day one (that being back in June) it is now going. I had a bath the night before last and there were at least 15-20 hairs there when the water had gone. I can rub my hands through my hair and get about 3 or 4 each time (I will stop doing this). There is still not enough loss to really notice, but I know its thinner. Strangely none of the grey hairs have fallen out and yet you would think they would be the first to go.

Had my 4th and final (for a while at least) bone marrow biopsy yesterday. I have to say, no disrespect to the doctor doing it, but it was carried out slower than usual and was the most painful I've had. The pain comes when they extract the bone, it only lasts about 20 seconds but there is a bit where the dr has to rock you slightly to get into the bone and that does smart. The reason being it is possible to provide anaesthetic for the skin and flesh but not the bone. I should say that my previous biopsy really wasn't painful at all, and I say this for anyone reading that might be about to have one. Extracting the bone marrow itself is more uncomfortable than painful and just feels like someone rubbing a sensitive bit of skin, but inside you.

Fingers crossed for good results as despite the serum free light chain levels going up recently, the level of plasma in the bone marrow had gone down quite signficantly at the last check so hopefully this trend will continue as it is better going into transplant with the minimum amount of marrow infiltration.

I have been reading up on the autologous transplant and can now provide a summary of my hospitalisation.

27th Feb - heart, kidney and lung function tests plus some baseline xrays
28th Feb - central line fitted
1st Mar - admitted to Addenbrookes
2nd Mar - high dose chemotherapy: approximately 350mg of Melphalan administered over 30 minutes (to put this into perspective a normal course of Melphalan would be 40mg administered in 10mg doses over 4 days)
3rd Mar - stem cell transfusion: I have my harvested stem cells reintroduced to me ('how do you do') via canula as with a blood transfusion. Apparently the anti-freeze used to stop the cells exploding when frozen gives off a smell of sweetcorn when the cells are defrosted and this is the overriding taste in your mouth for a few days.
For 3-4 weeks after the 3rd Mar - monitoring...

The information I've read says I should feel well enough in the first week to get up shower and dress, but after this blood counts drop and the effects of the chemo kick in. It takes 12-28 days for the stem cells to establish themselves and start working (called engraftment), and during this time the side effects can be at their worst. Side effects include:

• bone marrow suppression which leads to...
• anaemia and tiredness (lack of red blood cells)
• bruising and bleeding (lack of platelets)
• infection (lack of white blood cells), most patients apparently develop an infection at some point but this is generally easily treated
• pain and ulceration of mouth and throat, levels of suffering differ but if it is so bad I can't eat it is nice to know there is a 'commercially prepared feed' available - sounds yum
• gut side effects
• alopecia (still the one that bothers me the most even though it grows back after a few months), I think it is the loss of eyebrows which I find the most disturbing, any suggestions for how to create reasonably believable fake eyebrows would be much appreciated.

So there we are, for anyone planning a visit you now know what to expect. I will be in room on my own to avoid infection, I will be on a special diet for the same reason and don't bring fresh flowers, pot plants or fresh fruit with you as you will just have to take them home again!

Recovery time is around 3 months but may be shorter, I believe on return to home I'm still likely to feel tired and weak, I have to avoid crowded enclosed spaces for a while and swimming pools for 6 months.

On a positive note, I am happy to report that the peripheral neuropathy (or numb feet in my case) that I have been suffering with for a while is slowly going away, I think. It is hard to tell as I may just be getting used to it, but I don't think that is the case.

AND I want to remind anyone who does not know or who has forgotten that Neil Fairchild still intends to run the London Marathon in aid of the Anthony Nolan Trust and needs donations. Please visit www.justgiving.com/neil-fairchild to make an online donation for this great effort.