24. 19th October - 31st October 2021 - Living in Limbo

Today I receive a phone call from my Oncologist who tells me he is really happy with me and proud that I managed to complete the 6 rounds of chemotherapy. He says my bloods are fine and he will send a prescription to start me on the oral hormonal chemo drug Letrozole, which I will take for 5 years. He says that I may notice an increase in hot flushes - as if I have room for any increase! Honestly, since I stopped my HRT and went into immediate menopause I am a constant hot flush! I do a bit of research following his phone call and am delighted to say that not only will I get more hot flushes but I may also get joint pain and may gain weight - what joy - as if those weren’t already problems I am suffering from - I can’t wait for the prescription to arrive! Mr V is also happy for me to restart my RA drug Methotrexate which is great as it may help to counteract the Letrozole side effects with my joints so I will contact my Rheumatology Nurse to sort that out. Whilst I was having chemo a lot of my RA symptoms were suppressed but now that I have finished it is flaring again. My hands are very sore and swollen and most of my joints are painful so I will be very happy to restart it, despite the fact that it is an immunosuppressant which increases my risk of infection.

I am going through a lot of weird feelings and emotions at the moment - after the initial high I felt on completing my chemo I now have some real lows too. There is so much going on in my brain and I’m sure a lot of what I am worrying about is perceived rather than real. One thing that has really bothered me is the couple of times I have been out I have put on makeup and tried to look a little presentable despite my bloated face and lack of hair - I mean I do look pretty horrific but going out always perks me up and makes me feel a bit better. A couple of people have said ‘ Oh you look really well, much better than we thought you would’. I’m sure they are being kind but in my head I’m hearing ‘ Well you’re not even ill, what’s the problem with you, you look fine.’ Well I look fine because I’m covered in makeup, but I’m really not fine. I wonder if people are expecting me to be better than I am, after all the chemo is now finished, and then I wonder why aren’t I better than I am? I know I can’t compare myself to other people, we all recover in our own way and time, but so many things are running through my brain constantly - and I'm just waiting for the next bit of treatment to begin - will I ever feel normal again?

Despite no longer being on chemo or steroids I still seem to be suffering with a puffy red face which is annoying but it would appear that my hair is starting to grow back - result! I speak to my Rheumatology Nurse who isn't happy for me to restart my Methotrexate as my bloods show that my white cells and neutrophils are too low and she doesn’t want to risk lowering them further and putting me at risk of serious infection. This is a bit of a setback as my joints are really sore but I do agree it would be remiss to take any unnecessary risk so I agree to have another blood test next week and we will review.

I visit the hospital again for my next Trastuzumab injection, which all passes without incident - and yes, I know you can all guess that my weight has gone up yet again! This is so frustrating as I can’t seem to be able to do anything about it. All the time that I was on chemo and feeling rubbish I kept telling myself when I’m better I can exercise and drop the weight and get the endorphins flowing to help me mentally but I just can’t seem to do it. I just about manage a daily dog walk without being absolutely shattered. It's such a catch 22 situation, I need to do more to start to feel better but can’t do more because I feel so awful! I just feel so old and decrepit, I’m neither ill nor well. I feel better in my head but my body just won’t play ball and I am really struggling to do anything. Honestly, one day someone will come to visit and I will have become a part of the sofa - it will just swallow me up and I will be no more. And life carries on.