Today

Well, today is the first day of the rest of your life as they say.  They say a lot they do.  Whilst it's nice to know that my life is going to continue (inshallah) it would be even even better to have some sort of idea about what I am going to do with it.

Suspicion of Self

Suspicion of self (or SOS) is a way of describing a belief we have about ourselves. For example my core belief is that there is something wrong with me ie I am fundamentally defective. Now for most of my life this has not been a conscious belief but it has been the force that has driven a lot of my negative behaviour.

I will seek evidence in all areas of my life to give credence to this belief. Today I finished a report and shared it with the necessary peoples. I then read similar reports written by my colleagues and compared my own to their's - negatively of course.

Transplant Dreams

I have been in hospital since 19th December 2010 apart from 3 wonderful weeks of freedom in March.

One night I dreamed that they were cutting my head off and reattaching it. Now I am awaiting a stem cell transplant. Nothing is being cut off but there is a plan to change things. The transplant will change my blood group. My current bloodgroup (that's like saying my current eye colour or gender) is B negative. I have always been quite proud of having such an uncommon venous circulation - shared by only 2% of Brits.

I donated blood once when I was about 19. It ran slowly and they gave up after a few mls. Unfortunately a few years later I had a brush with hepatitis and that ended my relationship with venal philanthropy. Since the leukemia diagnosis entered my life I have had the privilege of receiving many gifts of blood and blood related products. Those 2% guys have really shown up. I have blessed every bag that has entered my body. It's all anonymous donors but I would love it if they had their names on the bags - this product was donated by .....

What I did see clearly marked on the bags was B negative. Be negative........ Could it be that my own body has been giving me subliminal messages all these years? No wonder the glass was half empty and there was never enough. Now, with the possibility of a transplant looming comes the opportunity to change my blood group.

BerNearly a year post SCT

Well, it's coming up to a year since my transplant.  I have recently returned from a week's holiday in Istanbul and am nursing a nice cough.  It appears that my immune system does not like any serious divergence from my usual activities and punishes me with a cold.  Cough, cough, cough!  Istanbul was fabulous and fantastic and so Turkish.  I will never forget the daytime boat ride on the Bosporhorus and seeing the porpoise breaching the turbulent waterway or the evening trip with the cacophony of sound and glaring lights.

I don't have to go back to the hospital until August.  All bloods have continued to be 'perfect' for the last 9 months or so.  The threats of CMV and Epstein Barr remain dim memories and I have been off the immunosuppressants since December.  I have gained over 2 stones in weight (which my consultant thinks is a good thing but I had got quite happy with being skinny) and now have a head of snowy white, curly hair.  It's all a far cry from 18 months ago when I was told there was maybe an 8% chance of my making it!

I have since found out that the two women of a similar age to me that were treated around the same time did not make it.  RIP Gabrielle and Bernadette.  I am very fortunate to be here.

Cat poo

Here I am at home recovering from my first cold since the stem cell transplant. Last week I travelled up to Liverpool to attend my father in law's funeral and caught a cold. I returned home on Monday and have spent the last few days lying around and eating toast in between bouts of coughing. Nick is at a conference and I am home alone. I can't believe how weak and tired I am after a week of inactivity apart from walking 50 yards from train to taxi. I decided that a shower would liven me up and ventured into the bathroom only to find that Rupert had pooed in the bath. Rupert does this as a protest when he doesn't think his litter is pristine enough. It looked alright to me and anyway I am not supposed to change litter or nappies with my compromised immune system.

I removed the poo from the bath - there was rather a lot of it but fortunately it was quite dry (made me wonder how long it had been there) and flushed it down the toilet. There was no way of getting around this - I needed to change the cat litter. We use a brand of litter that comes in its own bag that you just open up and place in the tray. That way you never have to touch it and the tray does not get all mushy. I cleaned the bath, rinsed and dried the tray. During this whole process I was naked as I had stripped off and put my stale night clothes and dressing gown into the washing machine. As I picked up the pack of litter it split and the litter poured out onto the bedroom floor boards.

Our Dyson vacuum cleaner was sitting behind me. I have not touched it since I was diagnosed with leukaemia 14 months ago and it now sits where Monika, our lovely cleaner, left it last week. I have had this cleaner for about 10 years but when I picked it up I could not remember where the plug was kept. This was quite a strange experience and made me wonder what was happening to my cognitive functions. It got worse when I decided that the cleaner needed emptying and after managing to get off the thing that holds the dirt realised that I could not remember how to get it back on again!

Ok now all done and I am showered and preparing to dress. The last couple of weeks have taken their toll with the sudden and sad death of Nick's dad and my ensuing respiratory tract infection. I am reminded that I am in complete remission and that I am alive.

the old blog

http://sallymountgrove.blogspot.com/

Fracking Blogs

Does anyone else have about six different blogs on the go? Yesterday I was moved to comment on an article I saw in the Guardian. It described the journey of a woman who had been diagnosed with a blood cancer when pregnant with her third child. She is now nearly four years post stem cell transplant and doing well coping with 3 children and life on it's own terms. It had such a resonance with my own story - in fact brought me to tears as I sat in a cafe on Highbury Park eating a cooked vegan breakfast - well I say cooked vegan breakfast but actually it was a compromise for a living foods vegan. Oh, the shame of the relapsee! More about that later but back to the article and being moved: when I got home I went to the author's blog to make a comment, as for some reason I could not comment on the Guardian site, and found this blog that I had started some time ago. This was to replace the original one I had created that was called something like Sally's stuffing recipes or words to that effect. Of course that was all years ago before I became a professional sick person......

Well back to the vegan breakfast. Saturday mornings our cleaner comes to spend three hours doing hoovering and mopping and other stuff that I have been advised against doing. Can you imagine how wonderful that is? It's almost worth having a life threatening illness to be told that you can no longer dust, touch cat litter or change nappies. Monika is our cleaner and she arrives at 9 am each Saturday morning. At this time I have to get out of bed and vacate the house. I could of course stay in bed - in fact I did for the first few weeks post hospital discharge - but now it would be far too embarrassing to actually lie abed whilst someone else cleans my house. It would further render it impossible for her to change the bed which is such a luxury. For the past 5 months I have been going out to breakfast and have explored several of the cafes in the vicinity of N5 and N16. There are absolutely dozens of cafes in the area and new ones seem to spring up each week but I am constrained by my raw vegan diet. Actually my diet does not include breakfast other than green juice and it certainly does not include coffee but I allow myself generous amounts of time off. Still, I like to try to keep to a vegan breakfast.

On Saturday as I read the Guardian article I ordered a cooked vegetarian breakfast and asked them to hold the egg. They gave me an extra hash brown to compensate. It came with baked beans, mushrooms, spinach and grilled tomatoes and a slice of white buttered toast. I tend to ignore the non veganess of butter as it is reputedly more healthy than some processed oils that go under the guise of vegan spreads. For the most part I do try to be gluten free or at least avoid white flour. Sometimes I think that my new Austrian stem cells have bestowed on me the ability to digest gluten - after all isn't Austria the home of pastries and cakes? To wash it all down I had a cappuccino made with milk (they did not have soy milk although I usually ask for this despite it being a Hippocrates no no). I followed this up with a black coffee which I drank with a grimace. By this time there was a family with two small children sitting at the next table. One of the children was coughing and spluttering and this prompted me to take my leave.

Many things have changed since my leukaemia diagnosis. In just over a year I have been forced into early retirement and have become a grandmother. My body has changed in all kinds of ways (not just the DNA) and after almost a year of baldness I now have a head of curly, white hair. Prior to the illness I was just coming to terms with getting through the menopause and was planning my next career move. Now it appears that I have been propelled into old age and grannydom and am not quite sure how I got there. Ok, back to the blogs - now that I have rediscovered this one I will be on here from time to time - well until I lose the password ....