Who’s Zoomin’ Who? Am I up or am I down? It’s been hard to tell lately, but as usual, I would lean towards ‘up’. Perhaps it’s because I’ve just completed my second 3 miles of my Royal Marsden Cancer Charity 40 miles in January challenge. Exercise always makes me feel good as does loud 80’s music (which is playing in the background as I type).
A year ago today I was not even a month out of hospital after my second MOAS (Mother Of All Surgeries), I was a piffling 52 kg and was desperately trying to put on weight while adjusting to life with an ileostomy. Happily, I managed to adjust quite quickly and was back at work and and out and about in February. I had a fabulous string of International Women’s Day events touting the 30% Club #theMissingMillions report just before lockdown in mid-March.
Today I am weighing in at a slightly too healthy 60.5 kg and am determined to take some off (and have ordered a Peloton to help with that). Having thought that I would never get used to my ileostomy, it is my ‘new normal’. And, like everyone else, I have adjusted to work on GoogleMeets, Zoom, Teams, etc. It’s been a very busy year for the Inclusion and Diversity business and I’ve worked with many new clients and some teammates that I have never actually met in person. My work has been a real tonic – I love what I do, I really like my clients and my team and I feel a huge sense of purpose in what I do, which has really helped me to push my cancer concerns to the back of my mind.
Health-wise, it’s hard to work out what’s actually happening. That’s the nature of this very rare disease – there is no clear path or prognosis and progression is not linear. My latest scan showed progression and I am now more aware of my symptoms than ever before. I have at least two very large cysts in my abdomen, one of which is draining on a daily basis keeping me very close to the loo at all times; the other is slightly larger than a cricket ball and is directly under my stoma (I originally thought it was a hernia). It’s not painful but it does stick out a lot and means that tight waistbands can be a bit uncomfortable (thank goodness for dressing from the waist up for Zoom calls). What will happen to these ‘cysts’ – will they continue to grow? Will they have to come out at some point? I don’t know. At this stage my surgeon is not keen to operate unless I have organ failure and given the COVID situation, I don’t know that I could get in even if he did decide to do something. My oncologist is trying to manage the fluid production in my abdomen with a drug that is used on other cancers. It’s not a cure but he hopes that it will improve my quality of life. I had the first injection just before Christmas and have two more scheduled in the coming weeks. So far it hasn’t helped, but I hope that the second injection in a couple weeks may make a difference. I don’t know if I have had any side effects or not – I’ve been napping a lot more over the past week and have really felt the cold, but that may just be a combination of taking a holiday after working full-out and cold damp weather. I’m sure everyone has been feeling a bit like that recently.
Now, as we move into January, I am determined to make a number of resolutions for 2021 – to keep living life to the fullest (whatever that means in Covid), to keep up with family and friends, even if it’s just on Zoom or the phone for now, to stay as fit and healthy as possible, to read more for pleasure (and create boundaries between work and home), to find ways to dance with girlfriends over Zoom (thanks for the playlist, Lucinda!), and to seriously consider ‘wild swimming’!