We have another amazing guest blogger today. We’re honoured to introduce Joanne. Joanne documents her experiences living with secondary breast cancer on Instagram. You can find her at @reallyratherannoying.
Like so many in the cancer community, Joanne has spent much of this year shielding and she has documented her feelings throughout – on the good days and the bad.
Joanne has written a wonderful blog for us today in which she explains what it is like living with cancer in a time of coronavirus and what that has meant for her.
We hope you find Joanne’s blog as powerful as we did. We know that this year has been very difficult for so many but Joanne has so beautifully expressed the fear and uncertainty of so many brave people in this cancer community. Here’s what Joanne has written:
“I swear a lot these days. I didn’t used to but now all the time in my head and too often in my speech. I grew up in a house where no one swore, the first time I said sh*t I was ten, I didn’t know what it meant I’d heard someone at school say it so I thought I’d try it out. My mum was horrified, I cried, I never swore again until just recently. I blame cancer……and coronavirus.
I’ve had cancer for three years, well probably longer but undetected. Secondary or metastatic breast cancer, that’s were the cancer has spread from the breast to other parts of the body. Mine is in my bones and stomach lining. Because of the nature of my cancer I’m able to take a reasonably new drug called Palbociclib. I’m lucky it’s worked for three years with relatively few side effects and I’ve led a relatively normal life. I’ve seen my two children graduate and hopefully next year my step daughter, I’ve got married, travelled to Europe, Africa, Asia and Australia. I’d probably have been to the USA too if they didn’t have that overly weird president. Life was, well not great let’s face it who wants uncurable cancer but it was as good as I could make it.
Then something happened in China that turned mine and, too be fair, the whole worlds’ lives upside down. Coronavirus, Covid-19, call it what you will it’s a damn nuisance.
In April as the whole country was in lockdown I sat by the phone nervously waiting for the results of my latest CT scan. Would the cancer still be stable? I’d already outsmarted the average time on Palbociclib so every three months the wait for results became increasingly anxious.
The call came in, still stable BUT….It was a big but, the breast team, having reviewed my medication and general health in the wake of the global pandemic, decided that I should take a three month break from the medication. They had weighed up the odds and given my propensity to low white blood cells agreed that the risk of my cancer growing was less then the risk of my catching and recovering from coronavirus. I was devastated and extremely nervous, feeling I was being asked to put my three years of stability and hope at risk but what could I do?
Reluctantly I agreed, treatment was paused and I started on a new regime of taking Letrozole, my other cancer drug, alone and just hoping I would stay safe. Two weeks later my worst fears were realised as I started to get severe pains in my right hip and pelvis. Over the next couple of days the pains became increasingly bad, I could no longer sit comfortably or indeed walk.
I rang the Christie hotline and minutes later was taken by ambulance to my local A&E, not exactly were you would choose to go in a global pandemic with a compromised immune system. I was admitted onto a ward for investigation without a coronavirus test, that didn’t seem right but when I queried it I was told by the ward nurses if I didn’t get one in A&E they wouldn’t be giving me one – WOW. I just hoped no one else on the ward had it.
For two days I had scans and X-rays , checking for spinal compression or broken bones but nothing appeared out of the ordinary, apart from the pain which was managed to a reasonable level by my old friend morphine. With no visitors allowed the only possibility of banter was with the nurses, too busy chatting about tik tok, the patients, too old to hear me or the people delivering the food, who claimed tuna bake was suitable for vegetarians. Thank goodness I’d had the foresight to pack my kindle and phone charger!
The tests revealed nothing untoward so I was released back home with a bottle of morphine and absolutely no idea where that pain had come from.
For days nothing changed still sore, couldn’t walk properly, couldn’t sleep and the morphine made me so miserable I was swapped onto a synthetic alternative.
I madly researched what it could be. Then I read stories of ladies having terrible joint pain on Letrozole, could this be the cause of my issue? Was the Palbociclib masking these unwanted side effects?
Turns out there are a number of different brands of Letrozole, ranging from the current ones I was taking at £2 a packet to the crème de la crème at £90.
My wonderful GP listened to my reasoning and agreed to prescribe the crème de la crème and the results were surprising, over the next few days the pain subsided walking became easier, all be it at first with a stick and I started to sleep.
I had another CT scan and waited anxiously for the results, hoping for the best but fearing the worst. The results came via phone call, I was still stable, I could barely believe it and better still could start back on my Palbociclib and even better I could slowly come out of shielding and start to meet with friends and family I’d not seen for four months.
Life was great for sixteen hours. Then my daughter texted me, the virus cases in Greater Manchester were rising to a dangerous level we were being told to stop socialising in our homes and even our gardens. What the hell? I’d not even got to that yet, the news was devastating, hopes of slow return to the “new normal” dashed. You could not make this year up!
But as I sit here today on a chilly bank holiday weekend we have been released from these extra restrictions and by Wednesday will able to have friends round again albeit under the social distance rules. I’ve survived those horrible three months, but who knows at what long term cost to my health? Many who’s cancer treatment was paused or diagnosis delayed face an uncertain future, many cancer patients will die needlessly as a result of the restrictions of the pandemic. As we all move towards our new normal let’s not forget those who have suffered and continue to do so.
Follow me on Instagram @reallyratherannoying because let’s face it that’s what life with cancer is.”
Thank you, Joanne, for sharing your story and explaining the far reaching impact of coronavirus on so very many lives.