In the days following my diagnosis, I found it very isolating. I had to receive my diagnosis alone, due to Covid-19 restrictions. It was difficult walking back to my car in the hospital car park and having to tell my husband.
I was shielding before my diagnosis as I was unwell, and I am still shielding currently. I have had the three primary Covid-19 vaccinations but have not developed any antibodies. My cancer is a cancer of the immune system. Additionally, the chemotherapy/immunotherapy further damaged my immune system. In ‘normal’ times, I would have had to have been careful not to catch any infections but the fact that I do not have any Covid-19 antibodies is the greatest threat to me. Many fellow sufferers have ended up in intensive care in hospital and a few have passed away.
I have been advised that if I caught Covid-19 I would have a very poor prognosis. Both the leukaemia and the treatment have damaged my immune system. I will be shielding this Christmas. Although I have not been told categorically to shield, I have been advised it has to be my decision. My hospital team believe it is the right choice. My husband has given up his job to help keep me safe. He was a RAC patrol meeting many people on a daily basis and unable to socially distance himself. I feel guilty that he has had to do this for me.
I am totally fed up with the prospect of continued shielding. There is no end in sight or hope for me. When I paid to check for Covid-19 antibodies, I really hoped I would have a positive result. When I got my result, I was devastated. I feel very upset and keep asking: “why me”. It is bad enough having incurable cancer but with the Covid-19 pandemic and having to shield, it makes everything so much worse. I feel my life is slipping by. Normally after a cancer diagnosis, it would be good to socialise and surround myself with positive friends and relatives, but this is not possible. I feel that some of my friends have lost patience with me and can’t understand why I have not moved on.
I used to love entertaining and seeing friends and family. I used to go to restaurants and pubs. I love foreign travel but can’t see myself ever doing that again. I only see people outdoors in my garden. I bought an awning and a gazebo and a patio heater but now it’s too cold for outdoor entertaining.
It is my 60th birthday in two weeks time. I had planned a sixties theme party. This had to be downgraded due to Covid and has now been cancelled. Everything is so disappointing. I probably won’t see another BIG birthday and life is miserable with nothing to look forward to. My one wish this Christmas would be to be cured of CLL, which I know is impossible, or alternatively for Covid to disappear.
Leukaemia Care’s services have been very helpful during this period of isolation; the webinars, in particular, have been very informative. I have watched the ones about Covid which helped clarify things and ones about the next line of treatment that I may need in the future. More specifically I have followed people’s inspirational stories, especially those with CLL like myself – it helps to feel less alone knowing that there are other people out there who understand the isolation and frustration.
Help us, to help more people like Sue, who are feeling #LonelyWithLeukaemia this Christmas by donating today.