I hope that you are all surviving lockdown 3, it is starting to feel like groundhog day in the UK and when I woke up one morning last week I said to David, can you just wake me up when we get to spring. In the last month there have also been more trips to Marsden HQ. I had settled into my routine and was happily going along with my 3 monthly scans and telephone consultations. After the good news of my melanoma scans in early December, just before Xmas, I found out that the biopsy done on the right breast was cancerous and whilst it is contained and very small it does now require treatment. I felt disappointed as if dealing with stage 4 melanoma wasn’t enough now there was another cancer to be dealt with too. However on a positive note it was 4 years since the precancer breast cells were originally discovered and the tumour was very small. Just before Xmas I returned to the Marsden to discuss the planned treatment for the breast cancer.
I can’t tell you how good it is that both of my doctors are at the same hospital. I had a nightmare experience 4 years ago when this was not the case. I wouldn’t even like to think about how this would have been in the current COVID crisis. Before my appointment both of my doctors had discussed my situation and there are two options for my treatment path and I was back to discussing the competing cancers risk assessment. The first is that I take the drug tamoxifen with a possible course of radiotherapy if required. The second option would be a mastectomy with full reconstruction. I have currently started the tamoxifen and so far feel ok with no side effects. This week I had an ultrasound at the Marsden, which showed that I am responding to the treatment and the tumour has almost halved in size and is now almost undetectable which is good news. At this point I wont be needing any further treatment but will continue with the tamoxifen and be regularly monitored.
Not long after my last melanoma scans in early December, I started to experience a strange numb sensation in my earlobe. Over the Xmas holidays I tried to put this to the back of my mind but I started to have this nagging doubt that something might be wrong. Three years ago when the last tumour was found in the brain I experienced a numb feeling in my mouth and the numb feeling of the ear was on the same side. I had a telephone appt with my Oncologist in mid January and told him about my concerns. He said given my previous experience, this had to be taken seriously and they were going to organize an urgent MRI scan of the brain. My head went into a tailspin as I became convinced that my targeted treatment had stopped working. I have been on my current melanoma treatment for 3 years and I have been fortunate that it has worked for so long for me as on average it works for patients for 12 months before the melanoma develops resistance to the drugs.
My MRI scan was organised for the following Monday and I had my follow up appointment scheduled for the Friday. My doctor asked me if I wanted to come into the hospital for the appointment rather than getting the results on the phone and I decided this would be better. It was a long few days and although I tried to keep myself occupied I was feeling extremely nervous. My mind was racing and I already had the next treatment plan set out in my head. In addition, due to COVID you are not allowed to have partners in the hospital with you so I had to attend the appointment on my own. Friday morning arrived and I put on my big girl pants and headed off to the hospital. David did come with me but he had to wait outside. Luckily I didn’t have to wait long for my appointment and I was very surprised and relieved to hear that the brain scan looked good and there was no change since the last scan in early December. My doctor asked if I had noticed that the numbness in the ear lobe had been getting worse and I said no it hadn’t gotten any worse. As I mentioned I do have nerve damage from the previous tumour so its possible that could be the cause or it is unexplained. He said we would monitor it and leave the next scans in as planned. I left the hospital to find David sitting on a bench outside awaiting the news and whilst there were no trips to the Ivy Café Chelsea due to lockdown there was time for a coffee and a big slice of cake en route home.
Whilst I am feeling hugely grateful that my melanoma is still under control, the last couple of weeks have really highlighted to me how quickly things can change. You can be lured into a false sense of security feeling well and then strange symptoms appear and you immediately assume there is progression of the disease. It is hard to deal with mentally as you obviously start worrying and thinking the worst. I was also reminded how awful this disease continues to be as a friend I had met through an online support group passed away recently and I couldn’t stop thinking about him and his family.
Like a lot of people I have found the latest lockdown harder than the previous ones. Of course it is mid winter and I am missing seeing friends and family. I was so excited to be going to Scotland for Xmas so that was really disappointing not to get there as planned. The COVID crisis has now been going on for so long there is a feeling that you are wasting time. On a positive note I did have my vaccine this week, which was good. Due to my treatment I am classified in the highly vulnerable group (even although I don’t feel highly vulnerable) and I headed down to the local church last Tuesday. I was very impressed by how efficient the whole set up was, the nurse did ask me if I worked for the NHS to which I responded no I am in the clinically vulnerable group. I felt fine after the vaccine except for a sore arm for a couple of days and I should get my 2nd jab within 12 weeks.
I have also signed up to the Royal Marsden/Crick Capture Trial, which is investigating how the coronavirus affects cancer patients and the effects of anticancer treatments such as chemotherapy, immunotherapy and radiotherapy on the course of COVID 19 infection. The aim is to develop better treatments to manage these patients. It involves having additional blood tests when I attend the hospital and completing questionnaires about symptoms and risk factors for COVID 19.
I have been keeping myself sane going out for early morning walks on Richmond Park, Wimbledon Common and Hyde Park which has been uplifting and it really makes you appreciate the small things in life. Last Monday a beautiful day in London I met my good friend Liz and we walked around Hyde Park, it was stunning and I have to say London looked at its glorious best. I simply cant wait to get back out hiking in the hills and am so hoping that the restrictions are lifted by May so that we can escape to Scotland and revisit the Outer Hebrides.
I am also back onto planning the 2021 Shomelanoma challenges to continue supporting melanoma research at the Royal Marsden. If anything the last month has simply highlighted how much there is still to be done to find effective treatments to help all patients with this awful disease. It may be the middle of winter but please continue to do your monthly skin checks. This video from Melanoma UK is really helpful. https://www.melanomauk.org.uk/news/21-of-melanomas-undiagnosed-during-covid-19
Thanks as always for all of your support and I’ll be back with more Shomelanoma updates next month.