DEPRESSION

A new year. A time I always thought of as being a new start with everything to look forward to.

But with the this disease......My last post shows I had been told there was no evidence of haemolysing (AIHA). Mmmmmmm. However, destruction of red cells continues. Yes, haemolysing has not gone away. My Prednislone dose had got down to 5mg and the pattern of the past year is that once at this dose for a couple of weeks, the destruction of the red cells starts again, which is what has happened. I have had a bone marrow biopsy this week (not the most pleasant of procedures) and depending on the result and discussion with the rest of the hospital team, I will learn on 1st February if I am to have my spleen removed. This, it is hoped, will help with my red cells.

I am tired of living with CLL and I am depressed. Ten years is a long time to be ill. I would like to book a holiday in the sun and go away and relax for a couple of weeks. But I don't feel well enough to travel far and travel insurance is a nightmare at the best of times. Travel Insurance.....maybe another topic here.

Another Hospital Stay

A quick update….. I saw my doctor in August and treatment (FC) was planned to start 25th August. I hadn’t been feeling well for a couple of weeks and the blood tests pre-chemo on 25th showed my old friend the AIHA is back with a vengence. Because I presented with a WBC of 220,000 I was admitted that day for chemo as an in-patient. I have had FC twice in the past, the last time over 2 months which ended in Septacaemia which made me very ill. This was a factor in deciding to halve the dose of FC for the time being and when the WBC drops, to add Rituximab. I had 3 bags of blood which stopped the symptoms of the AIHA and had no problem with the chemo at 50%level. However, I am anaemic (although now upto 10 which is good). My WBC is going completely haywire and from 1st Sept to today, 4th Sept, has jumped from 121,000 to 177,000 which is an average climb of 14,000 a day!! I have another appointment next Wednesday and again the following Monday. After the Septacaemia last time we switched to Campath and I think this may be worth thinking about.

Having said all that, I am feeling better than for some time. I have decided to just stop worrying about it all (from poem Desiderata) "and whether or not it is clear to you, no doubt the universe is unfolding as it should". I had 8 days in the hospital with so much TLC and laughter. My medical team are the very best you can have. This is not a political post but I do have to say that my experience of the NHS in the Uk is of the very best, despite the bad press it often gets.

Starting Treatment Again

In less than 2 weeks I have lost myself somewhere. In less than 2 weeks I suddenly have no energy, rapid heart beat, feeling of concrete in my arms and legs and everything is such an effort. Even small things leave me breathless. The AIHA is taking me over again.

On Monday I start treatment. It was to have been Campath, but it has now been decided to try FC again with Rituximab later. However, this morning my doctor phoned to say that my Creatinine test is low and although we are still going ahead with the treatment it will be a half dose. I am relieved as the last time FC was very toxic for me.

So the question is, how do I mobilise myself? Well meaning friends and family tell me I have done this before, and so I have. Three times. Three times with two remissions which have been good. But I have been warned to expect hospitalisation with infections and that this will be a very rough ride. My husband is very upset and we are both frightened. However, my hospital is excellent and the staff don't change much. I am part of the furniture there and sometimes I like to think I am a 'favourite patient'. The staff are so kind and caring.