Dancing with a group of girlfriends to ‘Groove is in the Heart’ a week ago served to re-fill my resilience tanks just as they were getting quite low. It’s been a challenging past few weeks as I have had one abscess after another open up along my wound (counting 4 in total now) due to an infection in my abdomen that was forcing its way out. The result is that I have 4 open holes in my abdomen that need to be covered by wound bags or neo-natal stoma bags, they are all close to each other and close to my main stoma, which is a challenge in terms of fit and therefore I’m experiencing a lot of leakage which is messy, awkward and inconvenient to say the least. The good news, according to my team at the Hampshire Clinic, is that the large deposit of infection/gel is completely independent of my digestive system and it’s not affecting me otherwise (no fever or illness) and therefore it’s not a worry. However, the growing disease in my tummy means that the wounds are unlikely to heal properly on their own. As a result, we travelled to Basingstoke yet again on Friday (we’ve been there a lot lately) and ‘Goz’ cut another hole lower down the scar line on my abdomen and inserted a drain which empties into a large bag strapped to my leg. I won’t pretend that it was a fun procedure, although Karen, one of my brilliant nurses, kept me occupied joking and chatting throughout. The hope is that this drain and gravity will encourage the fluid/gel to come out of one place and eventually I may have only one open wound to manage rather than five. What pushed me over the edge was Goz telling me that my plans for wild swimming are out of the question due to infection risks (as are baths). It’s not the end of the world, but I think it was the straw that broke the camel’s back. I spent Friday and Saturday feeling tearful, tender, sore and sorry for myself and have shed quite a few tears. Once again, thanks to my brilliant girlfriends who came round on Saturday to distract me and make me feel better, and my husband who somehow manages to make me still feel attractive in spite all of the bags on my tummy and drain strapped to my leg, I’m starting to get my mojo back.
So, once again, I am getting my head around a ‘new normal’. I don’t leave the house without a full change of clothes, set of different bags, adhesives, sterile wipes, scissors, etc., and I am learning to cope with managing all of this in a public loo if necessary. It’s not the end of the world – I’m still able to eat and drink normally and, with the right outfits, no one would know that I have all of these bags that need constant emptying and management. It’s just frustrating, tiring and annoying.
However, it was all put into perspective just over a week ago when I got the sad news that one of my PMP Survivor friends had lost her battle with the disease. She was such a bright light and wonderful supporter to all of us that it’s hard to imagine her not being there anymore. She was far too young and had far too much more to do to leave this world, but in the time that she was here, she made a huge impact on so many people. It is a reminder to me that while I can take a bit of time to feel sorry for myself with this latest development, get angry, be frustrated and sad, I then need to move on and make the most of my time and my health. I know that there will be more bumps in the road ahead which I’ll navigate when I come to them. In the meantime, I’m going to find more opportunities to dance to ‘Groove is in the Heart’ and lots of other great tunes.