I’m no longer waist deep in boxes, if I go into my spare room I’m probably ankle deep in boxes therefore I tend to keep the door to that room closed! I’m really pleased with my decision to move to the Cotswolds. Back in January 15, I felt well in general, possibly a little tired but then I believed that was the price of a hectic lifestyle. I worked in London, resided in the Home Counties with my cat and had a five year plan for improving my home etc. AML was a complete curve ball and at the time of diagnosis I really didn’t know what the future held or to be blunt, if there was a future at all. There are days when I catch myself finding it hard to believe I endured 2 Stem Cell Transplants, 40 days of high intensity chemotherapy, a Hickman line, a Picc line, 7 bone marrow aspirations / biopsy, a skin biopsy, countless blood transfusions, platelet transfusions, and no doubt lots of other torture procedures from Mar 15 to Feb 16. The reason it’s hard to believe at times is because I feel well, I look well (I’ll come to the curly chemo hair later) and physically other than not being a super fit (as I was back in Jan 15) I feel the same and yet someone else’s blood runs through my veins. Of course I have a few scars, where the Hickman, Picc and biopsies where undertaken and I’m pleased to report that they are fading nicely. The true scar/s for me of AML is a mental scar. Post moving I had a number of bruises, most of which I couldn’t explain individually and as bruising is a sign of AML, the moment I was in clinic I was asking what my platelet count was even though being bruised posted lugging, packing and unpacking boxes is to be expected. As much as loath blood tests I suspect come the day I am signed off I’ll be coming up with reasons to have blood tests. When I recall the trials and tribulations of the last eighteen months I often struggle not to well up and blub like a baby. It’s not that I intentionally think about blood cancer, every so often the bugger sneaks up on me. It might be hearing about another patient or simply the fact leukaemia / cancer is part of a film storyline and the moment that happens, the emotions rush to the surface before I have time to compose myself. For me personally the move has been very positive as I now have new adventures to look forward to which make me feel as if I am living. To feel the wind on your face, to sample delicious foods at the market, to meet new people truly makes me feel as if every hellish moment was worth enduring. Some adventures aren’t so new, last weekend I went horse riding for the first time since diagnosis and although I can hardly walk I had a fabulous time back in the saddle and I’m counting the days till the weekend when I get ride again. The adventures, new and dusted off, all help to stop me dwelling on the fears which come with life post cancer, namely will the cancer return, and focus on living life. Being honest I’m not so sure I would be so optimistic if I were still in the home counties, planning a new bathroom, post AML I needed a change for it was the only way to put it behind me whilst acknowledging it has altered me mentally and physically.
I still have GvHD, the skin rash quickly cleared up with a course of steroids which I am now off, thankfully as I hardly slept a wink when I was taking them, but the mouth GvHD remains. Therefore I’m using lots of mouthwashes daily to keep the mouth in ‘tolerable’. Tolerable means feeling dirty however no amount of brushing of teeth, cheeks, gum or tongue remove the feeling of having a grubby mouth. It’s really not all that bad or inconvenient, I just keep hoping that when my consultant starts to wean me off the increased cyclosporine the skin rash stays away. I gather the mouth GvHD can take months and in some cases years to normalise, I keep reminding myself GvHD is a good thing as statistically it suggests the chance of relapse is at the lowest it can be. The mild GvHD is my only remaining physical sign of AML and frankly unless you have an odd desire to look into someone’s mouth, I doubt you would notice. What is noticeable on the other hand…..chemo curls. Having had relatively straight hair all my life to suddenly have curly hair is testing my hairdressing capabilities which were limited prior to being unwell. I struggle every day to tame my hair into a ‘style’, the hair simply has a mind of its own and by the time I’m ready to leave the house it resembles a 1980s poodle perm. I went to the hairdresser at the weekend and even she grappled to tame the mane with limited success. I desperately need to apply for a new passport as whilst I was sick my passport expired and now as long as I remain well I am allowed to make travel plans within Europe which is very exciting nevertheless I fear I’m going to be saddled with a horrific photo for the next ten years. I might look up a ‘hair growth dance, desperate times, desperate measures!!!
It must be time for a mouth wash, especially as I just received my MP’s response to my request to support funding for second stem cell transplants…..keep the dirty words from popping out and refresh my mouth