Home Sweet Home and Climbing More Mountains

September 24, 2017September 24, 2017 shomelanoma2 Comments

The last month has seen adventure and holiday girl shomelanoma reappear which I know has been a welcome relief to both my husband David and also the Marsden Medical team (!) Last year after scaling Kilimanjaro (one of my lifetime best experiences), we signed up to Trek 8 Peaks in 48 Hours in the Lake District to raise funds for WellChild. At the time this seemed it would be a minor challenge compared to Kili and one that would be easily achieved. Little did I know that even taking part in the challenge let alone completing it would be a major personal achievement. Back in June while on my staycation in hospital, I didn’t even dare to think that I would be able to undertake the 8 Peaks in 48 Hours Lakes Challenge but it stayed in the back of my head as a goal and one I was determined to undertake.

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Training for the challenge commenced in July when we started getting back out on walks which I loved, it was so good to leave London where it felt that I had been trapped for what seemed like ages. When the medical form arrived for the challenge, I knew this would need discussion with my Oncologist. The next visit to the Marsden I told the team I was taking part in a challenge … “What challenge?” my Oncologist inquired and when I told him the details he asked if there would be any scrambling? No, I responded. He told me he wasn’t going to stop me taking part but did warn of the effects the steroids may have had on my joints and bones making them weaker and told me to take good care.

A trip to Scotland was planned for late August and it was so good to catch up with family, go to the Edinburgh festival and also get out in the hills to do a bit of hiking. It felt great to be out in the fresh air of the Scottish hills and we were blessed with beautiful weather as we scaled Ben Lawyers near Killin in the Trossachs. Only one year before we had climbed this munroe as part of our Kili training and had been unable to see much as it was snowing (and that was in May!) but what a difference a year made. I was feeling the effects of the steroids as my ankles were getting really swollen and I did feel my heart racing climbing up the mountain but as David told me his heart was also racing and it just meant taking a few more stops than normal. We had a wonderful day in the hills and I felt sad leaving Scotland on the return back south.

During August, I continued to have weekly blood tests at the Marsden to monitor my liver ALT levels, which were now in the normal zone (below 40). The steroid weaning process was in progress and given I had started on such a high dosage 250mg it was going to take a while to get me off the drugs. I have been fortunate not to really suffer many side effects but by mid August I definitely felt I had the steroid moon face (albeit David and the girl squad reassured me that it was more a case of being ultra self-conscious and that it was barely noticeable) and I could feel weight shifting around my abdomen area, which made me feel a bit bloated. However, I was told by the team that given the level of steroids I had been on they were really surprised I hadn’t suffered more side effects and as David reminded me these drugs were necessary to get my liver levels stable again. On the plus side and I know the girls will like this the steroid puffy effect does iron out any wrinkles on your face and makes any ideas of botox or fillers unnecessary ha ha! There is always a plus for every negative!

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September arrived and I felt excited about the month ahead. First up was the annual girly trip to Copenhagen with my two best girlfriends Jen and Liz. We do a girly weekend every year and these are always special times. In the past these have usually been to sun drenched locations with lots of vino, retail therapy and beach action. This year we had a change and were off to the Scandi style capital Copenhagen. Both Jen and Liz have been amazing friends to me over the years and this year even more, words can’t say how much I have appreciated them being there for me. When I was in hospital earlier in the summer I don’t think any of us thought the girly weekend would happen this year so it was a real bonus I was well enough to go. Copenhagen is a gorgeous city and we had lots of fun. There was no alcohol consumed for the first time ever on a girly weekend but that didn’t matter as we discovered non-alcoholic cocktails and still sat up chatting in restaurants until 2am with the bonus of waking up with clear heads. We were not blessed with good weather apart from the last day when we cycled round the city but that didn’t matter as we went exploring with the waterproofs on and did a bit of retail therapy. The Danes have got their priorities right in life, they are very relaxed, healthy and have some of the most amazing food in the world. We had a special fun weekend and are already onto planning the destination for 2018!

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Next up was the Lake District 8 Peaks in 48 Hours Challenge. Having taken part in these challenges over the last few years I knew I was definitely at my least fittest compared to previous years. I went to see my physio Des the day before setting off and told him I would be listening to my body and wouldn’t do anything daft. It wasn’t a race it was about completing the challenge. Friday morning dawned and we all set off to meet the rest of the group to start scaling the first mountain Hellvelyn (the first peak of 8). A number of the Kili team were also doing the challenge and it was so good to see them all and catch up. I started off in the front group but by the top of the Hellvelyn I knew that the pace they were walking at was going to be too quick so we moved into the second group. This felt much better as there were more breaks and I felt more comfortable. We climbed 3 Peaks on day one and day 2 scaled 5 Peaks including Scafell Pike. David and I had been up this mountain 2 years before as part of the 3 Peaks challenge and had seen nothing at 3 am in the morning in the pouring rain; it was fascinating to retrace the steps up Scafell Pike in the daylight. We were lucky to have clear views for the whole day and dry weather (a rare occurrence). I absolutely loved the 2^nd day of climbing and a huge thank you must go to the WellChild safety team who look after us so amazingly well on these challenges. It is no mean feat getting 48 climbers of mixed fitness and ability safely up and down 8 mountains with no major injuries. I was feeling quite euphoric completing the challenge and on a real high, we celebrated with a becks blue at the local pub in Keswick and were already onto discussing the next mountain challenge, watch this space.

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David and I are now heading off to Corsica for a much-needed proper overseas holiday the first since my stage 4 melanoma diagnosis. I have had my picc line removed so that I can go swimming and more of the trip in the next blog.

I am now down to 20mg of steroids a day and when I get back from Corsica hopefully that will go down further assuming the liver ALT levels stay normal. Fingers crossed I will soon be off these drugs, get rid of the steroid puffy face and be feeling normal again with no major issues. I will be back to see my Oncologist on return from holiday and my next scans will be coming up next month.

I have learned and gained much support from the online support group melanoma-mates but this summer has been a sad time and there have been a number of members who have lost their lives to this vicious disease far too early and it is heartbreaking. It does further highlight how much more there is to do in finding a cure for advanced melanoma.

I am excited that we have a number of shomelanoma fundraising initiatives coming up in October and would love you to come and support them.

The shomelanoma team of David, Chris, Fraser and Fiona will all be running the Royal Parks Half Marathon in London on October 8 to raise funds for the melanoma team at the Royal Marsden.

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

On October 19, the amazing Jonny Awsum will be hosting a comedy fundraiser in aid of the melanoma team at the Royal Marsden. Full details here, please come along bring your friends and help us raise funds for a very special cause.

http://buytickets.at/jonnycomedyfundraiser/115668

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The no alcohol challenge continues and David has now reached day 168 (6 months on October 10) to support him reach day 200.

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

The date for the upcoming danceathon is to be confirmed, more coming in the next blog.

Thank you again for all your messages of support, they all keep me smiling. Stay tuned.

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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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