“Don’t look back in Anger “ by the legendary Oasis was my song of the 90’s, I was an original Brit pop girl and seeing Oasis at Knebworth in the summer of 96 was a highlight of my 20’s. As I have had time to reflect since leaving Royal Marsden HQ on the last year since being diagnosed with Melanoma and thinking how life has changed (my cancer anniversary was June 16, one year since diagnosis and not a celebratory day), but here’s what I have learned.
Don’t look back in anger – On receiving the news, I had Melanoma, I tortured myself for the following few days, weeks and months on what I could have done to prevent it. All those summers in the South of France walking up and down the beach selling chou chous as a student followed by 7 years in Hong Kong basking myself on junks and not protecting my type 2 Scottish skin as well as I could have. I was ignorant to the fact that once my mole was removed that that was the end of it but when told “it’s not a great diagnosis” and there was 50% chance it would return, I started to realise the full severity of my situation. But you can’t control the past, and whilst anger is completely understandable, it felt like wasted energy and emotion.
Get ready for an emotional rollercoaster – A cancer diagnosis is an emotional rollercoaster – get ready for the ride. I do worry as a lot of the focus is on myself as the patient but there’s also my husband David, family and friends who have all been significantly impacted by my diagnosis too and have been a HUGE source of strength and support to me whilst dealing with their own rollercoaster of emotions. I very much appreciate those around me and never take anyone for granted. The key is to try and keep perspective on the inevitable highs and lows along the journey.
It’s OK get upset and cry – It took a long time for me to cry and get upset; I saw it as a sign of weakness against my stubborn Scottish ways. If there is one thing I dread it’s when people start feeling sorry for you. But sometimes, it’s good to cry; the process can be overwhelming and it helps to get it out your system. It does make you feel better and it’s not a sign of weakness.
Not one but two cancers – Well as if being diagnosed with melanoma was not bad enough, December 2016 saw all my Christmases’ come at once and I also received the news that I had pre-cancerous cells in my right breast together with cancerous cells in my left lymph nodes. We learned this news on December 21 just prior to celebrating Christmas with our families’ and it was pretty devastating. I had had one of my gut instincts that all was not right after returning from Kilimanjaro but I will never forget the look of utter shock on David’s face when we were told, it’s not good news. The melanoma was the greatest risk to be dealt with and has led to the current treatment path followed.
Take control and become an educated empowered patient – I am HUGELY fortunate to be treated by Dr Larkin and his excellent team at Marsden HQ. In the early stages of diagnosis, I needed and wanted to learn as much as possible about melanoma, the treatment options and I turned to Dr google. This is not always the best solution as there is often outdated information, frightening statistics and this led me to become naturally anxious and worried. I have educated myself listening and learning from other patients via an online support group, Melanoma UK has also excellent information and resources plus I have found social media an excellent source of the latest treatments. You should never lose sight however that everybody is unique both in terms of diagnosis together with physical and mental health, therefore treatments will often vary based on individual circumstances. My rationale is that I want to have an active empowered role as a patient with the medical team in discussion about my treatment.
Get a 2nd Opinion – January 2017 started badly and looking back it was an awful month for many reasons; David and I spent a lot of time at doctor’s appointments discussing treatment plans and due to the pre-breast cancer DCIS diagnosis, I was 3 days away from having a mastectomy, reconstruction plus the axillary lymph node removal in one large operation which would have been emotionally and psychologically devastating. I owe a huge thank you to one very special nurse at the Royal Marsden who advised I should have a second opinion, which thankfully I did. This changed the course of my treatment for the better, all my care was moved to the Royal Marsden and I felt 110% more comfortable being under the medical team there. Don’t be afraid to ask for a second opinion, it’s the patient’s right, doctors expect it and in my case it turned out to be the best thing that happened.
Have fun and smile – Life goes on with cancer; don’t let it define you. Even in the darkest days of Jan 2017 and during my time in hospital, there was still laughter, fun, smiles and amusing moments that have helped get through the rollercoaster.
Stay fit and healthy as possible – I have always been a fitness fanatic and Yoga has been my saviour over the last 6 months. It has helped me relax and really keep my head straight. I also stopped drinking alcohol when I started immunotherapy and that helped keep me emotionally on the straight and narrow. I can now see a gap in the market for more decent mocktails and non-alcoholic drinks beyond elderflower presse. My tipple of the moment is Seedlip non-alcoholic gin. I can take back control of my fitness, limit bad habits and lead a healthy life as much as possible and that feels good.
I am a complex case – I have heard this said a lot! In fact it’s probably the most frequent quote I’ve heard when I meet a doctor. I sometimes wonder, is it punishment for all that partying in Glasgow, France and Hong Kong? One thing’s for sure, I am starting to know and recognize doctors, nurses, receptionists (& patients) at my second home this summer Marsden HQ.
Don’t treat me any differently – I am still the same Shiona I was before I was diagnosed with melanoma. Sadly one in two of us will be diagnosed with cancer during their life and I am getting on making the most of it. I still love marketing, adventure, climbing mountains, challenges, fashion, travel and hanging out with friends and family. I have learned don’t sweat the small stuff it’s not worth it, don’t waste time doing things you don’t enjoy. You only get one life, enjoy every day to the max. You don’t know what’s around the corner and in many ways it has helped me understand and appreciate the important things in life.
A quick update … My liver levels have now reduced to near normal levels so weaning off the energy bunny steroids has begun this week. I am still on very high levels of the steroids and its going to take time but I am currently feeling good, so let’s see if I can beat the doctors expectations in the time frame getting them reduced.
I had a gorgeous birthday on the Dorset coast staying in the lovely Pig on the Beach. It felt so good to get out of London, to walk along the coastal paths and we had a beautiful couple of days. I’m now planning the next mountain climbing training in the Lake District and Scotland here we come.
I started writing my blog to help raise awareness of melanoma where prevention is the only cure. The current immunotherapy treatment I have received is cutting edge and the team at the Royal Marsden led by my Oncologist is at the forefront of this treatment. More however needs to be done to understand why some patients respond to immunotherapy and why some don’t and also to treat the serious adverse effects from the treatment. There has been much advancement in melanoma treatment over the past 5 years and we need continued investment in clinical trials to keep advancing. There is much work still to be done. Unfortunately there currently remains no known cure.
We have started the shomelanoma fundraising initiative to raise funds to help with the Royal Marsden future research and development of effective treatment for patients with melanoma. All funds will be allocated to the research and development fund administered by my oncologist Dr James Larkin – see attached link:
More will come on the next blog about the shomelanoma fundraising and this has kicked off with the current month’s fundraising challenge my husband David’s additional 10O day no drinking challenge, (he is currently on day 111 of his 200 days in total ) If you would like to host a bake sale, quiz, curry evening, car boot sale ,Marsden March or take up a challenge to support the shomelanoma initiative please get in touch and we can get this set up.
Save the Date – Upcoming fundraisers
Oct 19, 2017 – Jonny Awsum, star of Britain’s got Talent comedy show.
Danceathon – Date TBC – If you are interested to join us, please get in touch
Oct 8 – Royal Parks Half Marathon – running for the Marsden team