Getting Normality Back To Life – What is the New Normal?

August 21, 2017 shomelanoma2 Comments

Following one of my recent visits to Marsden HQ, I began to think about one of the questions posed by my consultant when she asked “And what is the new normal for you Shiona, you’ve had a somewhat stormy year?” At that point, I realised visiting the Marsden two or three times a week had become the norm this summer but more worrying was the fact, I didn’t even question it.

Its been a couple of weeks since my last blog post and during that time I have been in steroid drug reduction mode getting myself weaned off my energy boosting drugs. This has been a slow process and one that I can only imagine in my head as similar to a withdrawal from cocaine. As of today, my liver ALT levels are now normal (36) for the first time since May and my steroid level has been reduced to 50mg/day. The medical team had warned me about the length of the weaning process in advance and fortunately my body has been able to withstand the relatively high steroid dosage without too many side effects, although I am now starting to get a bit of the attractive puffy moon face. Following a trip to the world athletics championships last week, I did get a bit of a wake up call and was feeling quite exhausted by the end of the day. Prior to my cancer diagnosis, I have never been one for taking a lot of medication and was very reluctant to pill pop unless absolutely necessary but that has all had to change … my initial daily dose was around 18 pills with my breakfast followed by another 6 pills before bed. Fortunately my morning steroid pills have steadily reduced from 10 to 4 pills, which is more bearable

I also decided it was time for a follow up to check what was going on with the pre-cancer cells in my right breast. Whilst this has always been much less of a risk than my melanoma it was still lingering in the background to be dealt with. A trip to the breast consultant was booked and following a positive meeting with my consultant the plan was to have a mammogram in 6 months and treat the breast cancer with tamoxifen (more tablets!). At the request of the melanoma team this treatment will not start until the steroids have reduced further (as all tablet medications ultimately end up in the liver and they don’t want this to complicate my progress).

David did pose the question as to whether the immunotherapy treatment for the melanoma could have had any impact on the pre-cancerous breast cancer and once again the quote “We don’t know … you remain a very interesting and complex case for us “ came up. The reality is that the immunotherapy treatment I have had for my melanoma is so new we are still in the realms of the unknown if it will have had any impact on treating the pre-cancerous breast cancer cells.

Looking back I am so thankful that I didn’t go through with the mastectomy and reconstruction at the same time at the axillary lymph node clearance as I would have just been recovering from that surgery when the tumor was discovered in the brain which would have been pretty devastating for me.

So that brings you up to speed on my current medical situation, now for the fun things, I am now in full holiday planning mode starting with a trip to the famous Edinburgh festival next week to take in some shows, visit my Scottish family plus climb a couple of munroes as part of the WellChild Trek the Lakes 8 Peaks in 48 hours training plan, which takes place in mid September. Before the WellChild trek I am off to Copenhagen with Liz and Jen for our annual girly weekend, which will be followed by a much-needed holiday for both David and I to lovely Corsica. David has requested that we have a couple of days of R&R before I plan any stages walking of the famous GR20 whilst we are there! Lets see …

I have also returned to do some work which has been a relief to get back to my marketing as that also brings normality plus it is my passion and its great to get back using my brain doing what I love.

We are also in full steam ahead planning fund raising activities for the Melanoma team at the Royal Marsden. Coming up in the next couple of months, we have planned a comedy fundraiser on 19^th October with the fabulous Jonny Awsum and Guests. We also have a shomelanoma team running the Royal Marathon Parks Half marathon on the 8^th October. Huge thanks to David, Fraser, Chris, Fiona and Katie for volunteering to run. A date and venue for the Danceathon will also be coming soon

I am also getting myself back to full fitness and health, which has also been a welcome relief. My bike is in for a full service and will soon be back out on Richmond Park. Yoga and Pilates has resumed and walking training for the Lakes is full speed ahead. There is no doubt that having a strong positive mindset has been hugely important in the last few months. This feels good as it helps me feel I am in control.

Thank you again for all of your support and messages, they are hugely appreciated and I hope to see and catch up with you all very soon.

Here is my god daughter Imogen, her sister Felicity, brother Cameron and cousins getting creative with their fundraising for shomelanoma in Scotland this week – ” guess the number of sweets in the jar ” Well done team !

https://www.justgiving.com/fundraising/shomelanoma

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Don’t look back in Anger ! – My Top 10 Learning’s since Melanoma Diagnosis

July 28, 2017 shomelanoma2 Comments

“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:

https://www.justgiving.com/fundraising/shomelanoma

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

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Manic to Happy Mondays in SW19, London

July 11, 2017July 12, 2017 shomelanoma6 Comments

It was manic Monday at Wimbledon for more than just the epic five set match, which saw Rafa Nadal exit the tournament. As all of Wimbledon was buzzing with the excitement, I was in a mad panic worrying about going to the Marsden to get my scan results and see if the ipi/nivo immunotherapy treatment was working for me. As fellow cancer patients will know the anxiety surrounding scans and results is something that you have to learn to deal with in your own way, it’s not easy and very stressful. The words of advice given to me by Dr Wood, after my first set of scans stuck with me. He told me you have to find your coping mechanism and then get on with your life. Personally, I find keeping myself as distracted and occupied as possible between the scans and results works well plus I am a big fan of yoga and that helps me relax.

To bring you up to speed, I was finally discharged from the Marsden on July 4 after 3 weeks in hospital. This was after a 5-day mega pulse on high steroid dose that made me feel I was bouncing off the walls. (As someone who already has a lot of energy this wasn’t a good experience) In fact, on the Saturday evening, I had so much energy I was tempted to go and dance it off in Brixton at the Ministry of Sound but didn’t think that would go down so well with the nurses (or David!). The good news was that this finally saw my liver ALT levels come down far enough that I was able to be discharged which as you can imagine I was over the moon. Dave and I left the hospital with a suitcase load of drugs to take home as I had been transferred from taking the drugs intravenously to orally. I was warned that my body would take some time to adjust and if the levels increased I would need to be readmitted. I also had to come to the hospital every morning to have my bloods checked. None of that mattered though as I was so excited to get home and sleep in my own bed and felt on cloud 9.

It was really blissful to be back at home and have some normality back in my life. Even walking to the gym on my own and doing a workout felt so good. I was also excited to go to watch Wimbledon the day after I got home which was a special treat and catch up with family and friends. On Friday my gorgeous girlfriends “the girl squad” had planned a pre-birthday lunch for me and this was an amazing afternoon. At one point, I seriously thought I’d be going from the hospital heels on tottering out of the Marsden.

Friday morning was stressful as I had my scans first both brain MRI and body CT then bloods done before rushing home to get set for the birthday lunch. I didn’t tell anyone about the scans, as I just wanted to enjoy the afternoon and weekend and also have time for David and I to process the results once we received them on Monday. Friday afternoon was such a happy occasion, my two very special friends Liz and Jen plus 10 other girls pulled out all the stops, the venue, company, food, drinks, laughter, presents, games and fun were just the tonic I needed. This was me sober although don’t forget the steroids! It was such a special afternoon that I will always remember, for the 7 hours over lunch we had a blast with some of the lovely friends and family that have helped support me through the last 12 months. I was very spoiled and it was a gorgeous. Huge thank you to all of you who came it is massively appreciated.

The weekend was also lovely seeing family then friends who were over from Hong Kong where David and I used to live.

Monday morning arrived all too quickly and I was feeling panicked at the prospect of getting my scan results. Normally when going for scan results I have a gut instinct of how things are going to go. I sometimes find that it is easier to prepare yourself for the worst and then anything better is a bonus. This week I didn’t have a gut instinct how it was going to go and when I woke up I felt calm. This didn’t last though and on arrival at the hospital my mind was all over the place imagining all sorts of scenarios. Luckily David was there to keep me calm.

It was soon time for my appointment and walking into the room I felt sick. I sat down and my doctor was smiling and said your scan results are good with no evidence of any new melanoma spread and the tumour in the brain has also shrunk; this means that the immunotherapy treatment has worked and my immune system has been taught to recognise and fight the cancerous cells. The best way to describe it is that the immunotherapy has stopped / halted the melanoma in its tracks. For some patients this can be a long-term status whereas for others the cancerous cells find a way of again overcoming the immune system, hence the need for regular monitoring/scans. There is no doubt this is the best news we could have hoped for and I felt a wave of euphoria come over me and felt so happy. This is the best birthday present I could have and I am currently on a high on the shomelanoma rollercoaster.

I want to say a HUGE thank you to all the melanoma medical team, nurses, catering and cleaning team at both Granard House 2 and the Marcus Ward at the Royal Marsden who have looked after me so amazingly well. I feel hugely fortunate to be cared for at this very special hospital.

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. Unfortunately there currently remains no known cure.

https://www.justgiving.com/fundraising/shomelanoma

More will come on the next blog about the shomelanoma fundraising and this has kicked off with this month’s fundraising challenge my husband David’s additional 10O day no drinking challenge, i.e. 200 days in total!!

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My Extended Stay at Royal Marsden Hospital HQ

June 30, 2017June 30, 2017 shomelanoma2 Comments

When I checked into the Royal Marsden HQ on June 13, I didn’t for one minute expect to still be here over 2 weeks later and facing my 3rd weekend here; I don’t think my medical team did either. However, as I was told every patient is unique and my liver enzyme levels have stubbornly refused to fall far enough so the steroid dosage has been increased. (Will I soon look and feel like the incredible hulk?) The reactivation of my immune system has been described as akin to slamming your foot down on an accelerator pedal … i.e. difficult to control, as there is no on/off switch. So here I am still in residence at the Marsden 16 nights now and counting and it’s becoming VERY frustrating to say the least.

Over the last week, I realised I underestimated the adverse affects that can result from the immunotherapy treatment. When my doctor told me at the onset of the treatment I needed to stay in London over the 12 weeks, it was now clear why this was the case. My patience has been tested to the max, however I am now in the daily routine of being awoken early each morning to have my bloods taken and then have the morning treatment intravenously. I was fitted with a PICC line last Wednesday (a tube inside a vein just above the right elbow which feeds round to the main veins my chest) as they were struggling to administer the treatment through a cannula in my arm – my small veins could only take so much and my right arm looks like that of a drug addict (allegedly) covered in bruises. I am then free from around lunchtime and return to the hospital in the evening around 9pm for the next treatment and to sleep.

Residing in Chelsea has not turned me into a Sloane (there was some concern from my cousin north of the border that this may be the case), but I have been enjoying the delights that Chelsea and Kensington have to offer. Whilst the hospital food is ok, I have been out and about enjoying the local dining scene and have been eating pretty well at the local restaurants from oysters to sushi, tapas and fish its all been tasted over the last couple of weeks. As we live relatively close by to the hospital, I have also gone home for a couple of afternoons, which has been blissful. It’s amazing how the simple things like showering at home feel so good when you haven’t been able to do them for a while.

Special friends and family have continued to keep me entertained coming to visit, take me out for the day and keep me well distracted and for that I feel very blessed. A visit from a good friend Susan from Ireland and all my lovely HK girls was lovely and just the tonic I needed after a very frustrating week. We had a gorgeous tapas lunch, spent the afternoon in Hyde Park on deck chairs and finished off the evening sampling mocktails in the Ivy Café.

I also sneaked off for a pamper afternoon with my favourite hairdresser Craig and this was a welcome relief to have complete distraction and relax for a couple of hours. I thought this may need to be cancelled but fortunately doctor visits were moved to the next day and I had control of my life back for the afternoon. As you know girls there is nothing like a trip to the hairdresser to make you look and feel good.

The lack of control over your life is one of the hardest things to deal with as a cancer patient and I have really felt my life is completely out of my control this past 2 weeks. You have to live day by day and also keep your expectations in check. I have found this challenging especially when it looked like my liver (alt) levels were starting to fall only for the next day’s results to show they had stalled or slightly increased. When I have felt disappointed, David, lovely friends or funny messages have helped to keep me going with a big smile.

The medical team at the Marsden have also been amazing explaining everything to me, visiting me daily and I have also had fun and laughter with the nurses on the ward. They have all looked after me like a VIP for which I am hugely grateful.

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. 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:

https://www.justgiving.com/fundraising/shomelanoma

More will come on a future blog about the shomelanoma fundraising but to kick things of his month’s fundraising challenge is David’s additional 10O day no drinking challenge, i.e. 200 days in total!!

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An Unscheduled Stay in Chelsea

June 18, 2017June 18, 2017 shomelanoma8 Comments

Its been an eventful week ! no one ever said being a cancer patient was dull. I was due for my 4^th immunotherapy treatment this week and arrived at the Marsden for my regular blood tests on Tuesday as planned. I had started to feel nauseous and was losing my appetite in the few days running up to the blood tests and had reported this to the team. Arriving home from the Marsden, I had literally just walked through the door at home when the phone rang telling me to immediately pack a bag and come back to the hospital. My blood tests revealed that my liver levels had gone off the scale to dangerous levels and they needed to admit me to hospital to get this under control. I was in complete shock and felt upset as I quickly threw clothes in a bag and ordered a taxi to take me back to Chelsea.

On arrival, the doctor told me that my liver ALT levels (which is a measurement for the liver) had gone from the average person’s reading of 40 Units/litre to in excess of 1200 Units/litre, which is a very dangerous level and needed to urgently be addressed to prevent complete liver failure. This increase of over 30 x the normal level had occurred in the 3 weeks since my last blood tests & immunotherapy treatment. To decrease the liver inflammation, I was put on a course of high-level intravenous steroids to control the adverse reaction to the immunotherapy treatment, i.e. my own immune system had started to attack my own liver. As a consequence, I would also not be receiving my final immunotherapy treatment.

It all became clearer after a visit from Dr Larkin and his team who explained that this was the 2^nd most common adverse side effect from the immunotherapy experienced by patients and it also demonstrated that my immune system had been kicked into action which was after all the original goal of the treatment. Unfortunately, the immune system doesn’t have a switch or trigger point, which automatically re-sets it, so each patient is unfortunately subject to an element of trial and error and effectively my own immune system had started to attack my liver.

The liver levels have started to drop but not sufficiently enough so in addition to the steroids, I am now also having infusions of antibiotics to help the situation twice a day, two hours a time. I really just thank my lucky stars that I gave up alcohol, as I would not be allowed to drink now however, I definitely am looking forward to having a glass of champagne when my liver has started behaving again.

Fortunately, I have been allowed out of the hospital during the day and the Kings Road, Chelsea is not a bad place to hang out for the day. It didn’t take long for a bit of retail therapy to take place and even although I am staying in hospital there’s no excuse for a girl not to have nice nails right! We have also been exploring the local restaurant scene, which is pretty decent with lots of “Made in Chelsea” good-looking girls and guys. If you’re single girls there is definitely plenty of eye candy walking around. On Friday eve we stopped in one open-air bar and with my mocktail and dance music when I shut my eyes I momentarily felt transported to Ibiza.

I have also had plenty of entertainment with David taking me out every day and treating me like a princess and all of the lovely friends and family who have been popping in for coffee, lunch and dinner. I even saw the lovely Fiona Cumming my gorgeous friend who was over from Hong Kong for the weekend, which was a special treat.

Back to reality, it’s back to the Marsden this evening and I will see my doctor tomorrow morning to see how things are progressing. If the levels are reducing I hope I will be discharged and can be treated as an outpatient which will be lovely to get home (much as I love the Kings Road).

The team at the Marsden looking after me are amazing and I feel so fortunate to be cared for such a top medical team. Prevention is the cure for melanoma so as temperatures soar over 30 degrees in the UK remember to slap on your factor 50, protect your kiddies and look out for changes in your moles. Stay tuned!

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The Reality of Immunotherapy Treatment

May 30, 2017 shomelanoma19 Comments

The morning of April 10 dawned and I was ready to start immunotherapy treatment at the Royal Marsden Hospital. I had managed to work myself into stressed state, thinking about the laundry list of potential side effects and how these would impact me especially given I was feeling so good. Arriving at the hospital, I went for blood tests, only to find out that I have small veins, it took 3 nurses and the best part of an hour to actually take my blood. I used to find these situations made me squeamish, but I am now less of a prima donna and take them in my stride.

I had lots of questions for Dr Larkin mostly about the side effects of the treatment and was told that as everyone reacts differently, I should stop worrying about what’s happening to other patients and that the team can deal effectively with all the side effects as long as they are kept informed of all symptoms if and when they arise.

After signing lengthy consent forms, I was ready to get started on the first of 4 treatments of the combination immunotherapy drugs ipilimumab and nivolumab. I will have the treatments (3 weeks apart) and then a scan at the end of June to assess its effectiveness and decide on next treatment path. Keep everything crossed folks that I respond to these wonder drugs.

Having the treatment itself takes 4½ hours attached to an intravenous drip seated in a comfy lazy boy chair (fortunately you can go to the loo). David sat with me for the 1^st treatment but I have found that the time passes much quicker with one of the “girl squad” in tow to chat, gossip and have a laugh, so Jen attended treatment 2 with Liz at treatment 3.

All of the staff at the Royal Marsden are amazing, where you are treated as a VIP and nothing is too much trouble. When my friend Jen accompanied me on treatment day she commented how calm the atmosphere is and how it doesn’t feel that you are in a hospital. This is testament to all the staff from the cleaners, receptionists, nurses to the consultants who treat you as an individual, with lots of care, respect and a big smile. Despite the severity of my current health situation, which obviously I would rather not be in, I feel extremely fortunate to be one of their patients.

We have also got into a routine from treatment 2 and 3, whereby I have my bloods taken the day before the treatment to help speed up the process. David accompanies me to the appointments with Dr Larkin and then we are allowed to pop out for breakfast whilst the pharmacy makes up the immunotherapy drugs. These have to be made up on the day and only after I have been weighed and my blood tests approved by Dr Larkin. The drugs take around 2 hours to make and have to be used within a 24-hour window. The discovery of the Ivy café on the Kings Road 5 mins from the hospital has made the treatment days pass by quicker and we hang out there with the Chelsea wives while the pharmacy makes up the immunotherapy drugs. The people watching, and girly chat all make for top entertainment and you even have to book a table there at 10.30am. We head back there after treatment is finished and celebrate with a virgin mojito before heading home.

I have now completed 3 of my immunotherapy treatments and am feeling really well. Fortunately I have had no significant side effects with the exception of a dry mouth and strange metallic taste which is being dealt with drinking copious amounts of water (where is it all going?), eating water melon and using xylimelts during the night. I have also given up alcohol, which is also helping me feel really well. I have been told I am glowing and my skin feels amazing so maybe there is some truth in what they say about drinking. Apart from a couple of evenings out and listening to the utter garbage people talk at 1am after a few drinks when sober, I have not missed it.

At the outset of the treatment, I feared that the adventurer in me was going to be taking a 12 week break, after the oncologist told me in no particular order there should be no driving, cycling or climbing up ladders with a chain saw. However, there was no mention of rock climbing, so at the first opportunity David and I headed off to the Peak District at Easter and I was soon climbing up mountains, which I love. We have also had wonderful weekends in Whitstable, West Wittering and the South Downs with very special friends and family.

I would also like to say a HUGE thank you for all of the lovely messages of support I have received since publishing the first blog. There is no doubt that I wouldn’t be coping as well without the very special love and support from David, plus family and friends and that means more to me than words can say.

We have also been planning the fundraising for the Royal Marsden and the next blog will follow shortly and reveal more details. May is also Melanoma awareness month and to find out more about how you can prevent this horrible disease that currently kills 6 people in the UK every day please refer to http://www.melanomauk.org.uk/about_melanoma/

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Don’t Die for a Tan – My Melanoma Ride

April 26, 2017May 2, 2017 shomelanoma1 Comment

It may be a cliché, but it is true that nothing can prepare for you for being told you have cancer. At 45 years old; healthy, active and enjoying the prime of my life, it was a shock. When I look back walking into the doctor’s office last June to be told the dodgy mole that had been cut from my back was a thick (4.5mm) stage 2c melanoma cancer, I had no idea how severe the journey I was about to embark on would be. I was ignorant in thinking that once it was cut out, this would be the end of it. Melanoma is an unpredictable and aggressive disease.

What followed was a series of scans (brain (MRI), body (PET) and a wide local excision (WLE) to remove more tissue around the original mole site. All of the scans came back clear and I was referred to the Royal Marsden Hospital to see oncologist “Dr James Larkin”. I wondered why I was being referred to an oncologist when everything was clear at that point, but this proved to be a great decision for my journey ahead. All my care was transferred to the amazing skin team at the Marsden, and no further treatment was required at that point. This led to a path of regular monitoring.

JENSHOTT

The summer passed and I slipped back into normality, enjoying the simple things in life and spending quality time with family and friends. I put the cancer to the back of my head, went back to work and got on with training for the WellChild Kilimanjaro Challenge. I had scans just before setting off for Tanzania in late October and luckily they came back clear. We felt even more excited to get on the plane – to take part on our WellChild charity climb to the summit of Kilimanjaro. I have been fortunate to experience a lot of adventures having lived in France, Beijing and Hong Kong, but this trip goes down as perhaps the most unforgettable. I love traveling, hiking and exploring the world, and this one proved to be all of that and more.

But soon after we returned from Tanzania, I started to experience a strange pain in my right breast. After numerous tests and scans, it was discovered that the melanoma had progressed to the lymph nodes under my left arm. I was booked in for an axillary lymph node clearance at the Royal Marsden Hospital on February 8th. Although the operation to remove the infected lymph nodes was a success, my surgeon warned that he found more melanoma than appeared on the original scan and that this could mean it was an aggressive form of cancer. It obviously was not the news I had expected or hoped for, and it naturally led to a tremendous amount of worry. I didn’t sleep that night. But the next day was different. Many friends and family turned up to the hospital to visit and that propelled me on a positive route to recovery.

SHOSURGERY

As anyone who knows me would attest, I am a glass half-full girl and do not wallow or whinge. Springtime is a beautiful time of the year in London, and so there I was back at the Royal Marsden. As someone who has led a healthy life and fortunately experienced little injuries, it was weird but indeed accepted that this was the new norm. I am now a frequent visitor to the world-famous cancer hospital in Chelsea. I was feeling good and my oncologist explained what the next steps in my treatment plan would be. Scans were planned for late March, and in the meantime we had booked a weekend to Barcelona. It was fun and relaxed, but soon after we were back I started to feel some abdominal pain and as you can imagine by now that played on my mind. If there’s one thing I have learned since my cancer diagnosis, it is to trust your instinct and flag it up to the medical team when something does not feel right.

The next few days were plagued by worry and anxiety. I decided to phone the team at the Marsden and ask them if they could move my scans forward. They agreed and my scans were brought forward to the next day with results due by the end of the week.

Friday, March 31st arrived as somewhat of a doomsday. By then I had convinced myself that there was something wrong, as I now find it easier to prepare for the worst going into these meetings. Still, I was not expecting to walk into the Doctor’s office and be told what I was. The MRI scan had detected a tumour, albeit small at 4mm, in my brain. At this point, I was speechless and the appointment went foggy from there. My head ached as I tried to process the awful news. I did not digest much about the planned immunotherapy treatment except that there was a laundry list of side effects. DAVEAWED

We spent the weekend at a friend’s gorgeous wedding, drinking too much red wine yet smiling and feeling distracted with the lovely company of good friends. The weekend after that we escaped to Devon to chill out and clear our heads before starting the immunotherapy treatment. This really was ‘What the Doctor ordered’ before returning to London and commencing the first of many trips to the Marsden in Chelsea. SHODAVEDEVON

My hope in writing this blog and sharing my story is to raise awareness of this dreadful disease. It is one that is actually considered 85% preventable. It also is the fastest growing cancer amongst 15 to 34 year-olds in the UK.

This blog is also meant to keep my amazing friends and family up-to-date with my melanoma ride. In the past 10 months, I have come to realise how lucky I am to have a wonderful husband, true friends and an exceptionally caring family. All of you have supported me every step of the way so far and there are no words that can describe my appreciation for it. My mantra has always been to live and enjoy every day to the max, but ironically I have found that there is even more to that. I feel grateful for the simplest of things and I don’t take one thing for granted. I feel good, loved and I am not going to let this beast take the best of me.

I am going to pour my energy into raising awareness about this disease and I hope that it makes a difference to other potential patients. We are planning a number of fund-raising activities and all proceeds will go to Melanoma research for the Royal Marsden, where I am being treated.

Please stay tuned…

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