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.
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.