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Stem Cell Transplant Journey

Month

August 2016

Day +201 Daunting dating….

I’m settling in nicely in my new home, I still have a truck load of things to do but the ‘to do’ list is gradually decreasing. One of the main things on the list was to register with a GP, I’ve registered therefore the mountain of paperwork which I fully expect to terrify the surgery doctors should be with them any day. I have also instructed Barts, with their approval, to refer me to a hospital closer to my new home. I feel that now is as good a time as ever to move to a local hospital, my recent bloods are all normal and very good, the GvHD is under control in that my mouth isn’t any worse and right now it’s just my mouth / saliva glands Dylan the donor seems to be keen to ‘attack’.

When I was diagnosed I was in a long term relationship and until recently the relationship rode the storm of AML and stem cell transplants. A few months ago when I was mulling over the decision to move we decided to call a day on our relationship because we wanted different things. In truth I would go so far as to say, my life had altered so dramatically, along with my dreams, perspective etc. that we just found ourselves on different pages to what we had been on eighteen months prior. Naturally, people ask me my relationship status and frankly this is a very difficult subject for me post AML & SCT.

Having enduring treatment for AML, undergone two stem cell transplants I’ve gained an enormous confidence in myself and my ability of deal with adversity. On the other hand my confidence in other respects has been dealt a significant blow. Prior to being diagnosed I was relatively happy with my appearance, I’d come to terms with the fact I’d never give Angelina Jolie cause to worry about Brad’s faithfulness and was actually relatively content with my appearance, shape etc. Since I was diagnosed I have lost my hair twice, had a Hickman line (tube coming out my breast) for 8 months, then a Picc line (out of the arm) for 2 months, my weight has fluctuated with the lack of exercise, medication etc. and now my hair has grown back like a dodgy 80s perm, I’ve started early menopause and I have oral GvHD. For the first time in many years, I actually want to be a wallflower as I feel very uncomfortable with my appearance which I’m sure is perfectly fine but it’s all about how you feel. At some point the hair should return to its original state and in the meantime it will continue to grow, hopefully the weight / length will at least start to pull the curls down and make it more manageable. The oral GvHD could go on for months or even years, sadly I have no control of over it other than to manage it with the various mouthwashes. Time, healthy living and mouthwashes are the key to rebuilding confidence in my physical appearance. I’m a true believer that you have to be comfortable in your own skin in order to be in a healthy happy relationship therefore right now I can’t even conceive the idea of attempting to date based on how ill at ease I feel at present.

I’ve alluded to the fact that I believe I will regain my confidence in my physical appearance with time, I suspect the bigger issue is the mental / emotional element of dating post AML & SCT. How do you go about telling someone that you have been so critically ill? For me the journey between March 15 and today has been a difficult and emotional one, which is still very much an open wound to share that with someone would be extremely challenging which leads to the next question. When do you tell someone? Then there is the fact that my age would normally put in the ‘last chance saloon’ for children however they aren’t an option so that is also something I’d have to address should I consider a relationship.

I’m in no hurry, currently I’m focusing all my efforts on my new start in the Cotswolds; settling into local life which including going to watch football being played in a river, making friends, finding good walks for Aster and trying to encourage the cat to kill his presents before giving them to me. Even so, I am rather daunted at the prospect that one day I may want to date and how to go about that given all the changes which have taken place physically and emotionally in my life in such a short period of time.

Wordpress

On a more positive note, my Macmillan Worlds Biggest Coffee Morning kit has arrived and work seem to be in agreement to hold a coffee morning with a Bake Off Competition. Get yours at: http://coffee.macmillan.org.uk/ Friday 30th Sept…..a fabulous excuse to indulge in lots of cake.

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Day +185 1980’s Poodle Perm

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!!!

bad perm
People actually thought this looked good? I’m not impressed with the poodle look myself…grow hair, grow…….

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 

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