Lockdown Life with Stage 4 Cancer

Well what a difference since the last blog update! We have now been in lockdown for 8 weeks and to say there have been ups and downs would be an understatement. Whilst I have become somewhat used to dealing with the emotional rollercoaster of stage 4 cancer, I have found dealing with the restrictions of life imposed by Coronavirus pretty hard. I am one of the 1.5 million people classified as extremely vulnerable which brings with it an additional layer of restrictions known as shielding and involves staying in your house and not leaving for 12 weeks. I contacted my Oncologist for clarification and he told me there was no evidence that the targeted drugs I was on have a major impact on the immune system. However he said anyone with metastatic cancer is unlikely to have a completely normal immune system so the conservative position would be to follow the advice and delay getting the virus as long as possible until they know more about it. I felt on a major downer and so disappointed after hearing this news and the thought of spending 12 weeks not leaving the house just felt awful. I had been feeling so well and the training for the triathlon was just kicking up a gear and now I had to stay locked at home. I knew that the advice was for my own good but being totally honest I didn’t feel vulnerable and in fact felt very fit and well. I just had to take some time to get my head straight and in the correct frame of mind to cope with the situation and take it day by day. I have drawn from my experience of dealing with cancer to help but its fair to say by the end of week 3 I was going stir crazy.

 

For the first 3 weeks, I followed the stay at home guidelines by not leaving the house at all. I wasn’t sleeping particularly well and with the construction of the NHS Nightingale Hospital in the news, I kept having nightmares I would end up there in East London. I have been doing doing regular workouts in the garden plus yoga/pilates via zoom and we have been very lucky to have good weather. By the end of week 3, I had a really bad dose of cabin fever and so we decided to get up early at 6 am and do a circular walk up to Wimbledon common. At this time it is very quiet, there are a few dog walkers and joggers and it felt so good to be out of the house walking in the fresh air, seeing all of the spring blooms and enjoying the sunrise. Since then David and I have been going for early morning walks twice a week and have ventured a little further by enjoying Richmond Park, which has been truly beautiful, peaceful and very quiet. The sky has been so blue there were no cars or bikes and as we walked into the park the first time, the mist was just lifting and it was stunning. One of the benefits of the pandemic has definitely been the cleaner air, no pollution and the chance for nature to recover. We have even seen more stars in the sky, than at any time over the last 10 years. I have been really missing our hiking as normally at this time of year we are out in the hills training with the hiking gang for the latest challenge. Seeing photos of fields full of oilseed rape and bluebells, it really does make me want to escape London as soon as possible to the countryside. I can’t wait to get back to the hills and mountains of Scotland.

 

The complete focus on the Coronavirus situation has been especially worrying for cancer patients. Many have had treatments postponed, scans cancelled and analysts estimated that an extra 18,000 people could die from cancer due to treatments being deferred and/or cancers going undetected and/or treated. This is extremely worrying. In addition many clinical trials and cancer research projects have been halted as resources have been diverted to dealing with the virus which will cost further lives in the long term.

The Royal Marsden has been the cancer hub hospital for London. My nurse called me a month or so ago and said they were going to move my scans back a month so that I didn’t need to come into the hospital which I felt fine about but then the appointment confirmation arrived for mid May. At first, I was quite relieved at the prospect of pushing my scans back a month as no one really wants to be visiting a hospital right now, however, I am also acutely aware that the fact I am still here 3 years on from my stage 4 diagnosis is because my melanoma progression has always been picked up early on scans. So last Thursday it was off to Marsden HQ for my CT and MRI scans. It’s a couple of months since I was last in the hospital and during my visit I felt very safe from the security guard on the front entrance checking my appointment letter to the screens that had been put in place at registration, the social distancing in the waiting room to the radiographer with her PPE. The hospital was very quiet as there is currently no visiting, you are not allowed to have anyone with you and most clinic appointments are taking place by phone. As I headed home I was feeling quite calm and tried to forget about the results until Monday morning. Of course by the time Monday arrived I was not feeling so calm, the nerves had kicked in and I spent the morning pacing up and down the lounge waiting for the phone to ring. The current phone consultations make the appointments efficient but I did think how difficult this must be for patients who don’t know their Doctor very well and also its not a good way to receive bad news. Fortunately the phone rang and my doctor told me the news that my latest scans are good and the targeted drugs Debrafenib and Trametinib continue to work 2.5 years on. I felt so delighted and relieved but no trip to the Ivy Café Chelsea to celebrate it was a coffee and cake at home instead.

I am now just longing to be making the most of every day doing all of the things I love seeing family and friends (the zoom calls are ok but just not the same as seeing everyone in person) getting out in the hills with the hiking gang and up to Scotland to see the family and breathe in the fresh air. We had also planned a lovely trip to the South of France for early May, one of my favourite spots in the world where I spent a year at university, but that was of course cancelled. Hopefully we can try and go in the autumn. A girly trip to Ibiza in June has now been moved to next year. Hopefully training for the next challenges will be getting back on track; the hike in Ireland on the Giants Causeway is scheduled for July but we expect that will probably be moved and the triathlon has been moved to September.

It would also be good if the government could clarify what is happening next to the 1.5 million of us who they have advised to shield at home. There are a lot of people on the list with a lot of different underlying health conditions. With the exception of my stage 4 cancer I am currently fit and well (more fit than the average person my age) and I don’t want to be living the next few months trapped in the house. It’s absolutely not good for my mental health and its also hard as lockdown restrictions are lifted for everyone else. I wont enter into the governments handling of coronavirus that’s for another time, lets just say in my last blog I felt the British government slept walk into this crisis and with such a high loss of life in the UK that has turned out to be the case.

As a reminder to everyone May is Melanoma Awareness Month and with COVID 19 dominating the news there has been very little coverage this year. The government have being doing its best at press briefings to encourage the British public to get out and sunbathe but there has been no mention of wearing factor 50, avoiding getting burnt and checking your skin for any abnormalities or changes to moles. Early detection saves lives, melanoma cases are on the rise in the UK and we are still losing 7 people every day to the disease. If you do notice any changes get an appointment booked with your GP or Dermatologist to get it checked out. If you want a tan this summer please fake it, there is nothing healthy about baking yourself in the sun. For more information see Melanoma UK https://www.melanomauk.org.uk/Pages/Category/what-is-melanoma

Here is the link to my patient story with commentary from my Oncologist, which appeared in the latest edition of the Marsden magazine (p12)

https://issuu.com/royalmarsden/docs/rm42_webreadyspreads

I hope you are all well and look forward to seeing everyone soon. I’ll be back next month for more Shomelanoma adventures hopefully out of lockdown.