Cancer · Living with Cancer · Melanoma

Escaping Lockdown with Stage 4 Melanoma and Milestone Birthdays

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After 100 days of lockdown shielding I was feeling euphoric to leave London for a day of hiking on one of my favourite hikes in the South Downs over the Seven Sisters to Beachy Head. As many of you are aware, I have been in the shielding category, which has been a big challenge. Even though I have been going out more in the past month I was still feeling quite trapped in the city and had major cabin fever after spending so much time at home. The sight of the sea and the cliffs was good for the soul and felt amazing, it was so quiet, and we hardly met anyone on the 20km hike. It was a shame that the pub at Beachy Head was not yet open as that is usually the half-way lunch spot but we stopped near there and had our picnic before heading back. It was a stunning day and I really loved every minute. My legs on the other hand were screaming as they are out of hiking practice; definitely more training required before we take on the next challenge on the Giants Causeway in October.

Next up was my big milestone birthday, on July 12 I turned 50. At the start of the year I was feeling so excited about my birthday as we planned a big party in a gorgeous house we had rented in Kent. The girls were also planning a trip to Ibiza but as the lockdown progressed it became obvious that both the planned party nor the trip to Ibiza was going to be possible with the COVID restrictions so they have been postponed to next year and I’ll be staying 49 for an extra year. I feel quite emotional and grateful to be turning 50. I think before my stage 4 melanoma diagnosis I may have been dreading reaching such a milestone age and worrying about getting older. Now that has all changed, every birthday is to be celebrated, (this one even more than most) as it represents another year that I am still here, healthy, happy and able to make the most of every day with family and friends. I distinctly remember almost 3 years ago to the day being discharged from Marsden HQ after my 3 week inpatient stay after experiencing extreme autoimmune hepatitis from my immunotherapy treatment thinking would I see the next Christmas far less dream of seeing my 50th birthday. So the fact, I am celebrating turning 50, I feel hugely grateful to the fantastic melanoma team led by my Oncologist Prof Larkin and Nurse Nikki Hunter and all the team at the Royal Marsden for continuing to look after me so amazingly well. You are all superstars.

Although the birthday party was postponed, I had a gorgeous bday picnic at Cannizaro House in Wimbledon with family and friends. I was so excited to see everyone as I had been missing them all during lockdown and we had a gorgeous day. I was woken in the morning bright and early with my good friend Denise calling from Hong Kong where David and I used to live. As I was opening my birthday cards, in the middle of the pile were the forms for my blood tests that had been sent from the Marsden. I quickly put them to one side, as I did not need to be thinking about melanoma on my big day. The sun shone and we had lots of fun, I felt very spoiled and after the last 4 months of lockdown it felt that I was finally escaping. The next day David and I escaped to the Pig Hotel in Kent for a couple of days, which was really gorgeous. The hotel had put lots of safety measures in place to protect guests and staff against COVID and it was really lovely to eat out again in a restaurant after so much time at home. We then spent the day walking along the Kent coastline from Bottany Bay to Broadstairs, which was stunning. Here are a few pics. We both returned to London feeling rejuvenated and rested.

By Friday I was back at Marsden HQ for scans, mask on. The hospital was so quiet; I was quickly taken for my MRI and CT scan. Since I was last there in May it is now mandatory to wear masks in the hospital and I did wonder about needing to wear a mask in the MRI scanner along with the face cage, which is already very claustrophobic. Fortunately I was allowed to remove my face mask which was a big relief. As I had such a lovely birthday week and was feeling on a big high (I managed not to think too much about the scan results over the weekend) It was gorgeous weather and we met up with friends Phil and Jo to go hiking which took my mind off the scanxiety. I had also been feeling really well although that can lull you into a false sense of security. On Monday morning I was back at the hospital for results and fortunately the wonder targeted drugs continue to work over 2.5 years on and my melanoma is under control. This was just the best birthday present and a lovely finish to my bday week. I also saw my nurse Nikki which was lovely to catch up with her in person, as I hadn’t seen her since Jan as the consultations have all been taking place by phone. After picking up my drug supply it was off for breakfast with David to celebrate, we were too early for the Ivy café so that will have to wait. I feel very grateful that my treatment has not been disrupted by coronavirus, scans took place as scheduled, and I felt very safe at the hospital.

However the COVID situation has been very worrying for many cancer patients who have had their treatments postponed, scans cancelled and recently CRUK estimates that an additional 35,000 extra deaths could result due to treatments being deferred or cancers going undetected. Deborah James (aka) Bowelbabe a fellow Marsden patient recently presented BBC Panorama “Britain’s Cancer Crisis” which laid bare the impact of coronavirus on NHS cancer care and included some really heartbreaking patient stories.

We have seen this also in the melanoma patient community and this has a significant impact on patient survival. We are seeing too many young lives lost to melanoma tearing families apart. Covid 19 is also having a huge impact on cancer research and just a couple of weeks ago CRUK which is responsible for the funding of over 50% of UK cancer research announced it was making 500 people redundant and £44m cuts to its research.   

The Royal Marsden cancer charity had also been affected and has been running an emergency appeal. I recently wrote a blog for the charity and also spoke to the team in a short video about my experience at the hospital during coronavirus and why it’s so important to continue supporting the charity during this time.

Team Shomelanoma are back training for the next big challenge on the Giants Causeway at end Oct. It has been a shock to the system getting the legs back into hiking action but it has been good to be back out in the Surrey Hills training with the team. Next up we will be off to Scotland to see the family and tackle a couple of munro’s and we have everything crossed that the challenge will be going ahead. More details to come in the next blog.

As the heatwave returns to the UK this weekend we had the news today that Brits are spending 40% more time in the sun during lockdown than they did last year with over a third of us saying they don’t protect their skin in any way in their own outside space. The sun isn’t only strong abroad so please remember to protect your skin slap on the factor 50, stay covered up and out of the midday sun and most importantly don’t get burnt. 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.

Thank you as always for all your support and look out for more Shomelanoma adventures coming your way next month.

 

 

 

 

 

 

 

 

 

 

 

Cancer · Living with Cancer · Melanoma

Lockdown Life with Stage 4 Cancer

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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.

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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.

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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.

 

 

 

 

 

 

 

 

 

 

 

 

 

Cancer · Living with Cancer · Melanoma

Three Years of Stage 4 Melanoma and now Corona Virus

I am approaching the 3-year anniversary of my stage 4 melanoma diagnosis on March 31 and just received good news that my latest scans are fine. I was at the hospital on Thursday and it felt strange as it was much quieter than normal and the radiology staffs were all in very serious mode. This is of course not surprising given that we are in unprecedented times where our amazing frontline NHS staff are being asked not just to do their regular day jobs but also take on dealing with the worst virus pandemic in a generaton. On Friday my Oncologist phoned me to let me know my scans were fine, and he was prescribing 2 months worth of drugs so I didn’t have to go into the hospital for my appointment, as they were trying to limit unnecessary footfall through the hospital. I asked him if my immune system was affected with my current drug regime and he said it was likely to be more compromised than the average person my age without melanoma. I am now being sensible practicing social distancing, stopped going to the gym and swimming but I have still been running outside and my bike is serviced, ready for action. It also makes complete sense where possible for the doctors to be doing consultations by phone/skype to save face-to-face contact for them and their patients. It also provided the benefit of having my usual weekend scanxiety worry awaiting the Monday morning appointment.

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However, despite being given the good news of my scan results I found myself becoming increasingly anxious about the corona virus and the fact I am immune compromised. As if there’s not been enough to worry about over the last 3 years with stage 4 cancer now this comes along. I have now recognized what was making the situation worse was social media and listening to the news so I’ll be doing less of that and focusing on finding fun ways of adapting to my situation at home.

I did however pop into the Royal Marsden this week to pick up my 2 months supplies of drugs and have blood tests. The hospital is taking a lot of precautions to keep patients and staff safe. I’ve heard of some patients who are having their treatment cancelled as its too big of a risk for their immune systems right now as they could be at a higher risk of serious complications with the corona virus. This adds additional stress for those already dealing with their cancer diagnosis. The NHS is under such stress right now that resources are also being diverted to other areas.

David and I lived in Hong Kong throughout the SARS epidemic of 2003 when we had home working, social distancing and travel bans to certain locations and there was fear amongst the Hong Kong people. One of David’s abiding memories is of some of the local chinese driving their convertible cars with roofs down but face masks on … We still have friends in Hong Kong and the corona virus hit there in mid January shortly after China. They closed their borders, implemented testing, shut schools and had social distancing very early on and appear to have contained the virus showing a low number of cases and deaths. Many of the other SE Asian countries have been the same. It is currently very distressing to see what is happening in Europe and in my opinion Europe and the UK have slept-walk into the current crisis. I just hope that we are not going to see the UK following Italy in a couple of weeks’ time. It does feel like we are living through a real life disaster movie.

 

To say how quickly life has changed just 3 weeks ago David and I were on the slopes skiing in Chatel with good friends Jen, Paul and family. We had beautiful weather albeit it was warm skiing in the fresh mountain air. Here are a few pics from the mountains. I did suggest to David the other day that we get a camper van and head north to the Outer Hebrides, however, reading the BBC website today, it appears others have done exactly that and are now likely to be creating a strain on their limited local services and everyone needs to stay at home.  It’s almost 2 years since we had our lovely adventure there and I am now longing to get out of London for some Scottish mountain air. If anyone can bottle it and send some to me please do.

As I mentioned in my last blog next up on the melanoma fundraising for the Royal Marsden is the triathlon. My gorgeous friend Melissa Tarver is signed up to do an Iron Man in Barcelona in July and a group of us are signed up for the Blenheim Palace Triathlon on May 31, albeit like many events, we have been advised this week that it will be postponed and will be rescheduled. On the plus side this gives me more time for training which I need especially for swimming.

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It’s hard to believe a little less than 2 weeks ago I was swimming outside on a gorgeous Friday afternoon at Hampton pool. In the meantime I will still be running and cycling and doing Joe Wicks fitness classes in the back garden to keep myself sane and fit. Welcome to the garden gym. David doesn’t think the neighbours are ready for him to join me yet!!

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We may need some virtual fun activities over the next few months to keep us entertained and sane and the idea of a virtual danceathon has arisen. Get your pink wigs and legwarmers out.

As we enter this uncertain time more than ever I appreciate the lengths that the Marsden and all NHS staff right now are going to look after patients. This goes from the cleaners to the porters to the nurses and doctors. As they say not all heroes wear capes but they most definitely are all heroes.

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Finally my patient story is included in the latest Royal Marsden magazine with a commentary from my Oncologist. I’ll include a link with the next blog In the meantime stay safe, sending lots of love to you all and more shomelanoma adventures coming from home soon.