The last couple of months have been hard for me. I think last year I was in the groove of things, I had recovered really well from my bowel surgeries and even when I got the news that my desmoid tumour had come back, I was feeling positive and treatment didn’t seem to daunting. It soon started growing really aggressively and for a few months it was pretty scary and I did wonder if it would ever stop growing. Luckily by the end of the year chemo finally got it under control and I could notice quite obviously that it had significantly shrunk down in size which was a relief.
Now things are still stable and it is under control, but things are moving slowly and I get impatient and just wish it would disappear now. Now’s the time when it is almost harder to stay motivated each day and to get through each weekly treatment.
That’s why I try to find at least some positives of the situation when it seems like life is too hard.
I’m not in pain: I am so thankful that despite the large size of my tumour, it doesn’t cause me any pain at all. It’s one less thing to bring me down and I know that pain is often linked to desmoid tumours due to them pressing against nerves – but not in my case…for now at least.
I still have control of my life: I’m still working full time and this is really important to me to keep myself busy and occupied. Also I’m getting better at reaching out for help, both through friends and professionals and this has made a huge difference to my mental health and ability to cope and keep on going.
I get really nice, friendly care at the clinic: Whilst it’s not ideal to have to go to a cancer clinic once a week for treatment, the staff and nurses at the clinic are really caring and make the experience unintimidating and relaxed. I am a rare case as well so have provided them a challenge to learn about the no-name drug that I am currently being treated on.
I have very supportive family and friends: Since being sick, there are some of my friends who have been so great in checking in on me and taking my mind off things when I need it. I only hope that I can be as good a friend for them when they need it as well! And of course my family are always there whenever I need them, even if I don’t ask (or respond to phone calls and texts.. which is quite common for me, oops!).
This made me teary, because I know how incredibly strong and tough you’ve been but also how hard it must get. I’m so proud of you for raising awareness of this disease, I know there are going to be so many people inspired by you and that will get comfort from your words. I also know for a fact that you are definitely an amazing friend and family member, and always there for everyone else too, no matter what you are going through. My own health condition often frustrates me to the point of temper tantrum, and your post reminded me to keep things in perspective and focus on the positive things! Keep it up wonderful girl, looking forward to future posts.