Every 3 months when I turn up in my Oncologist’s office for my scan results in an anxious state of unrest, I am hoping he announces that my scan results are good and I pass go for the next 3 months. Fortunately my latest scans in mid July were good but I am all too aware how quickly my situation can change, my 3 month count down starts as soon as I leave his office. I realise how lucky I am still to be here living well with stage 4 melanoma 7.5 years on as many of my fellow melanoma patients are no longer here. This hit me hard recently as a fellow patient who had a fairly similar melanoma story to me and had been on the same drugs had progression of her disease, quickly became sick and ran out of treatment options and died. It shocked me how quickly this happened, I was really sad for her family and felt down. I have met some lovely fellow patients and we support each other on this melanoma rollercoaster. One of the sad things about being a stage 4 cancer patient is not everyone responds to the current treatments and why it’s so important to continue supporting the cancer research programmes and trials to find new treatments.  

This weekend Team Shomelanoma is taking on the South Coast 100km Hiking Challenge. We will be starting the hike at 730am on Sat 7 September in Eastbourne and finishing on Sunday 8 September in Arundel. It promises to be a tough long slog and feels like it has come round very quickly. When the going gets tough I will be remembering some of my fellow melanoma patients and will feel fortunate that I am still well enough to be taking on these challenges. If you would like to support the team more details are here and we will be posting progress updates over the weekend. As always a huge thank you for all of your incredible support.

https://www.justgiving.com/page/shiona-ramage-1722285835665

A couple of months ago I was in Scotland visiting Mum when I received a phone call from BBC London to say that I had been shortlisted for a Make a Difference Award in the Fundraiser Category. The Fundraiser award recognises an individual or group of people who have gone the extra mile to raise funds for a good cause. I was so excited to hear that I had been shortlisted and of course this recognises the fantastic work and support of all of Team Shomelanoma everyone who has taken time to participate and support all of the fundraising challenges. A few weeks ago I met with BBC Radio London to record an interview about the Team Shomelanoma Fundraising for The Royal Marsden Cancer Charity and also do some filming on a training hike. It was great to have my good friend Jen join for the filming and it was a beautiful day. My interview was aired on Radio London a couple of weeks ago on the Eddie Nestor Show and then I did a live interview. It was exciting to be on live radio and if you would like to listen to the interview its available on BBC Sounds go to 2hrs 42 and its available from then.

https://www.bbc.co.uk/sounds/play/p0jf6szp
 

The Make a Difference Awards are on 25 September at the BBC Radio Theatre at BBC Centre in London. Dave and my Mum will be joining me for the Awards and I will post an update and some photos on the next blog. 

Back in May which was Melanoma Awareness Month we had a very exciting evening with Melanoma Focus and a fellow patient Ben Whitehouse who organised the lighting up of Tower 42 in the City of London with the Melanoma Focus Logo. He also hosted a drinks reception at his office so that we could see the Tower lit up and he spoke eloquently about his melanoma story. Dr Mark Harries who is a Medical Oncologist at Guys Hospital and the Chairman at Melanoma Focus Charity who spoke about the developments in melanoma treatments and the role of the charity. It was a fabulous evening and we also met a number of other patients, charity staff and medical professionals on a stunning spring evening. Later in the month thanks to the amazing team at BT we were able to organise lighting up the BT Tower with the Melanoma Focus logo. I was en route to the Take That Concert on May 30 and while at Euston Station I looked up to see the BT Tower lit up with the Melanoma Focus logo which was a fantastic sight.  

The Team Shomelanoma Fundraising efforts have been boosted in the last few months by some incredible support from amazing friends and family. First my school friend Jacqueline Thompson ran the Edinburgh Marathon and did amazingly well receiving very generous support from her family and friends. In June my lovely friend Michelle de Klerk hosted a walk around Richmond Park with the Womens Chapter Members and they generously donated to the Team Shomelanoma Fundraising so huge thank you to all of them and it was really lovely to meet everyone. Last weekend the gorgeous Clem McQuoid turned 21 and rather than having birthday gifts she asked friends and family to donate to the Team Shomelanoma fundraising. This was a very special and kind gesture from Clem and her family and friends and is hugely appreciated. We had a wonderful time celebrating Clem’s birthday on Saturday evening and here are a few photos of the celebrations. The overall fundraising has now reached over £134k so a massive thank you again for all of your support. 

Next month I will be visiting Professor Samra Turajilic at the Royal Marsden to get an update on the melanoma research projects that the Team Shomelanoma fundraising is contributing towards and I will provide an update on the next blog. 

In the last couple of months David and I have been on the road round the country at weekends for training hikes, visiting family and we had a lovely week earlier in the spring visiting Royal Deeside which was just stunning. We stayed in Ballater near Balmoral and really lucked out with a good week of weather. I also met up with a fellow melanoma patient Willie Munro who took us hiking for the morning and it was fantastic to meet up with him and see the beauty of the Cairngorms and Royal Deeside. 

As we go into the South Coast Challenge this weekend which will be very tough and we will need to dig deep, I will be remembering the fellow melanoma patients we have lost this year. Tune into the next blog for more Team Shomelanoma adventures and an update on the latest challenge.  

Its been a whirlwind few  weeks on the cancer rollercoaster. A couple of weeks before the latest Team Shomelanoma Isle of Wight 106km Challenge I headed off to Marsden HQ for my latest scans. I was due back at the hospital for my results on the Friday but the day before I had a call from the hospital booking me in for a biopsy which came as a bit of a shock. I spoke to my team who apologised and informed me that I had a slightly enlarged lymph node in my right axilla that they wanted to biopsy.  The following day, I had my consultation with my Oncologist who was apologetic about the communication and told me given I have had another slightly enlarged lymph node on my chest also in the last 6 months it needed to be checked out. I also have primary breast cancer and 3 weeks prior to these scans I had a full check up for that MRI scan of breast, mammogram and ultrasound that also checked the right axilla and at that point everything was ok. Anyway the biopsy was booked for the following week with results after I got back from the IOW challenge.  This was a nerve-wracking build up to the latest challenge.

As we set off for the Isle of Wight weekend, I put the biopsy and results to the back of my mind and focused on the big challenge ahead. The Team kicked off the 106km challenge on Sat morning at 8am, the first 25km along the coastal path to the Needles were stunning and it was a beautiful day. As we left the coast to go inland the path became increasingly muddy and slippy and one of our team Pete fell and badly lacerated his hand. He then had to walk to the next rest stop to get it bandaged up and was advised to get to A and E as soon as possible. Not wanting to miss any of the hike he finished the 13km to complete the first day’s 53km before heading off to A & E for 4 hrs to get his hand stitched. He was back at the start line for 6 am the next morning ready to start day 2 at 6.30am what an absolute trouper. The end of day one was really tough for me those last 5km on Saturday early evening as the light started to dim I was really struggling and my mind wandered back to the Jurassic Coast Challenge 5 years ago when we failed to complete day 2 due to the extreme heat and exhaustion. The big difference on the Isle of Wight Challenge was that the whole team finished day 1 over 3 hours earlier than we had on the previous Jurassic coast. We were home and in bed by 10.30pm, which meant for a better nights rest than on the last challenge. We were all up and ready to start day 2 at  6.30.  Day 2 started off with everyone in good spirits and the team split into 3 groups regrouping at the checkpoints. A big shout out to the support team on day 2 as seeing your gorgeous faces at each of the check points really encouraged us all when the feet were really sore and the bodies getting tired.  By the time we were on the last leg 94 – 106km every km seemed to go slower than the last and as we passed the 100km marker the extra 6km really seemed unnecessary. As we arrived at the 105km marker we could hear the cheers coming from the finish line and the last km really did seem to go on forever. However it felt quite euphoric to cross the finish line and very emotional to see every one of the team finish the 106km. It was a very tough challenge not for the faint hearted so to see all 16 of us get over the line was really amazing and just an incredible achievement. I was feeling super proud of everyone for successfully completing such an amazing challenge thank you to each and every one of you for taking on this epic challenge. There were many stories and everyone had their own times of struggling, mine was definitely the last 5km on Sat when Dave was almost carrying me over that line. However everyone managed to dig deep and drag themselves over that line. The fundraising for this challenge has exceeded all expectations and has raised £14k, which makes it the highest fundraiser to date. A HUGE thank you to everyone who has so generously supported and donated to support the Team Shomelanoma fundraising. We are edging closer to the £100k target and I will be doing a full update on the melanoma research that the funds raised are contributing towards in the next blog.

After the euphoria of the latest challenge we had a couple of days rest and recovery on the Isle of Wight, it was back to reality and to Marsden HQ for the results of the biopsy. There had been very little time to think about it and on Friday morning all I could think about was how this would be a horrible end to what had been a very special week. Once we arrived at the hospital I was feeling quite sick and I didn’t have long in the waiting room before it was time to go for my results. My doctor told me the very good news that there was no evidence of cancer from my biopsy and we were able to return to my regular 3 monthly scans. I can’t tell you what a relief this was and I almost burst into tears. I think the whole stress of the run up to the challenge with the biopsy and then the physical and mental exertion of going through the challenge had all just caught up with me and just reinforces the rollercoaster ride of being a stage 4 cancer patient.

The recent adventures reinforced the importance to me of continuing to focus on the Shomelanoma challenges and the role of exercise to help both the mental and physical aspects of living with cancer.  I recently watched Dame Deborah James documentary  Bowelbabe – In her own Words (BBC2 and Iplayer) which if you haven’t watched it I really recommend it.  It really made me think about how she had successfully changed the narrative around living with cancer, campaigned for better and kinder treatments and since launching the Bowelbabe fund she has raised over £11m truly incredible. All she wanted was more time with her gorgeous family. Not wanting to get too philosophical here but as a stage 4 cancer patient who is all too aware you are only as good as your last scan I want to squeeze every last ounce of time with loved ones and step back and cherish every moment. Since completing the latest challenge I have thought once again what special family and friends I have around me (and feel very fortunate to have them all you are all very special to me love you all )

May is Melanoma Awareness Month and with melanoma now the 5^th most common cancer in the UK and the fastest growing in the 15-34 age group. There are 16,744* new cases every year and 2,341* deaths every year. These cases are 86% preventable. These statistics are alarming and highlight the need for better awareness around melanoma and how to prevent it in the first place and also whilst there have been significant advances in treating advanced melanoma there are still too many patients dying of the disease. This was highlighted last week when I heard news that another fellow patient I knew at the Marsden had died. We had a similar treatment history, immunotherapy, which hadn’t worked for her then, targeted treatment for 5 years that had stopped working and she ran out of options. We desperately need more options for these patients. There is a lot of research work going on to understand why these treatments stop working for some patients and I will share more of this in the next blog.

Of course the best solution is to prevent getting melanoma in the first place and as part of Melanoma Awareness Month I have just spent the morning in parliament supporting Melanoma Focus to promote greater awareness of melanoma amongst MPs as part of the knowyourskin campaign and also encourage MPs to remove the VAT from sunscreen. Wear your sunscreen, stay out of the midday sun, cover up and if you want a tan its much safer to fake it. 

 Please also do a skin check once a month. Both of the fantastic melanoma charities have excellent resources to show you how to check your skin properly (https://www.melanomauk.org.uk/pages/category/skin-check). If you have any concerns please see your GP or Dermatologist.

I will be back next month with a full update on the melanoma research projects that the Team Shomelanoma fundraising is supporting. Huge thank you again as always for all of your incredible support.    

My never give up mantra for life has helped to get through some of the most challenging times coping with cancer over the last 6.5 years.  Hope that treatments continue to work, research continues to develop new treatments and I can keep living life to the max and enjoy life’s adventures with family and friends. However, I am under no illusions and as I approach the 6-year stage 4 cancerversary next month I know that I have been lucky that on both occasions my melanoma brain tumours have been caught early and I have benefitted from the significant medical advancements in melanoma treatments in the last 10 years. Too many fellow patients are still dying from his awful disease and as time has gone on the sad fact is that I know more and more patients whose lives are cut short.  This makes me all the more determined to continue to raise awareness of melanoma, share my story and raise more funds for melanoma research at the Royal Marsden.

As we approached the end of 2022, the subject turned to what will be the 2023 hiking challenge. Normally we like to have a few months rest after a challenge (or at least Dave would!) before we get going with the next one. I am the first to admit that I love the hiking challenges and when one is over I can’t wait to  start planning the next one.  In early November we headed down to Devon to see our friends Tony and Sam who have been with us on every challenge since the Three Peaks in 2015.  Tony had already been looking at challenges for next year and he mentioned the Isle of Wight 106km Ultra challenge-taking place on 29/30 April.  For Sam, Dave and I there is some unfinished business that appealed to take on this challenge.  In 2018, Team Shomelanoma undertook the 100km Jurassic Coast Ultra challenge in mid July. After 58km on the first day in blistering heat of 28 degrees, we were absolutely exhausted, had developed severe blisters with the heat and I was feeling badly dehydrated. I was also conscious at the time that I had only been on my targeted Debrafenib and Trametinib treatment for a short while and had also experienced significant side effects. So we made the difficult decision not to continue for the last 42km the next morning. At the time I knew that I had made the right decision but of course there was also the regret and guilt for not completing the full 100km of the challenge. It is for this reason, the Isle of Wight 106km Ultra challenge is really appealing as there is unfinished business to complete the challenge for Dave, Sam and I. We are all signed up (16 of us!) and training has now begun for the Isle of Wight challenge which will take place on the last weekend of April and we are all determined to complete it.

In fact, with just 8 weeks to go until we embark on the latest challenge some of the team have just returned from a 2 day training weekend in Devon. When we originally signed up for the challenge training through the winter was one of the factors that I was most concerned about.  Knee deep in mud, cold and wet I had visions of some really horrible training walks. Of course you never know what the UK weather is going to throw at you and we have had horrendous weather in July on the Welsh 3000’s and the year before 28 degrees on the Jurassic Coast so we are used to all eventualities BUT this is the earliest in the year we have done one of the hiking challenges.  As we kicked off the training walks in mid Jan we had a day of pouring rain and lots of mud but already 6 weeks later we have just returned from a gorgeous weekend in Devon training on the SW Coastal Path lots of hills and we were blessed with absolutely stunning weather. Here are a few photos of the gang of the training walks so far.  I will say after the Devon walks on the coastal path I know that there is much more training to be done before we take on the Isle of Wight Challenge in 8 weeks time.

In late Jan, I was back at Marsden HQ for my latest melanoma scans. You may recall that the frequency of my scans had been increased from 3 months to 2 months as I have a slightly enlarged chest lymph node that is being monitored closely. The reduction in the scan frequency makes you feel you literally have a few weeks to breathe after the last scans and then you are gearing yourself up for the next ones. In order to try and stay calm I had signed up for a 21-day yoga and pilates warrior challenge which involved going everyday to a class at the local studio I attend. This was perfect timing as I really find that the yoga classes in particular due to the breathing technique help to keep me really calm. I have deployed the breathing techniques in the brain scan MRI machine for a long time and it really does work. I was back to see my Oncologist at the end of the week and fortunately it was good news. My scans are stable the chest lymph node is still slightly enlarged but it hasn’t grown since Sept so he advised me that he thought it was ok for me to resume the 3 month scan schedule. I felt so relieved and David and I left the hospital and went straight to Pavilion Road, Chelsea where we celebrated in one of the cafes there. It was a beautiful afternoon and it actually felt like spring was on its way.

Alongside hiking training and trips to Marsden HQ we have been very fortunate to get away skiing in Jan to Chatel with my good friend Jen and her family including her wonderful Dad Norrie who if ever there is inspiration to embrace life fully, take on a challenge and live and enjoy life to the absolute max he embraces it all & what we would all give to be skiing in our 80^th year! The snow has been very mixed this year but we really lucked out and there had been a big dump of snow just before we went out. It was freezing I mean -14 but with the thermals on and lots of layers it was a wonderful long weekend and we had lots of laughter and fun and got back in one piece which I am always pleased after skiing, I have enough health issues to deal with without broken bones from skiing ha ha.

Last month Mr H my rockstar husband Dave turned 50.  When I was originally diagnosed with stage 4 cancer almost 6 years ago I didn’t think I would be seeing my 50^th birthday far less celebrating David’s half century. We had the Xmas drinks/bday celebration with friends in December and this felt a big milestone to celebrate. So we headed off to Paris for a long weekend. It had been over 10 years since we had visited the city of lights and having been away for so long it was fabulous to go back and it did not disappoint. We had 4 days of fun visiting all the sights, eating delicious food exploring Paris drinking cocktails and it was a really gorgeous weekend and we both loved it. Here are a few photos of our amazing trip hopefully it wont be 10 years before we return again.

This month as training steps up a gear I also have more medical appointments to check up on my second cancer, the breast cancer. Honestly if it’s not one thing its another, I am due for my annual mammogram, ultrasound and my Doctor wants to do an MRI scan of the chest just to check that the tamoxifen I am taking is still doing its job. Lets keep everything crossed that all is still well. I am trying not to think about this at the moment and the hiking training is providing a welcome distraction. I will report back in the next blog.

In a couple of weeks David and I will be attending the Melanoma Patient Conference in Birmingham. This is a fabulous event for patients and their families to learn more about the latest medical advancements in the treatment of melanoma. It also provides a fantastic opportunity to catch up with other patients who are going through a similar experience to you and they just get it. This will be my 3^rd conference and I have found each one really invaluable. They also reinforce how much still needs to be done both in terms of raising awareness about melanoma to prevent people getting the disease and also developing new treatments to cure and extend the lives of those who end up with this awful disease. I always come away feeling more knowledgeable and I would recommend the conference to any fellow patients considering attending.

The Royal Marsden Cancer Charity recently published a blog on the Team Shomelanoma Fundraising efforts and I am happy to share this here (https://www.royalmarsden.org/blog/shiona-hits-fundraising-milestone)  In addition, we have now set up the Team Shomelanoma Isle of Wight 106Km Challenge Fundraising Page. With 8 weeks to go and training upping a gear we are grateful for any support you can provide to continue supporting the fantastic melanoma research efforts of the Royal Marsden. With the determination hat on we are very much hoping we will all be successfully completing this challenge. More to come in the next blog.

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

Thank you as always for all of your continued support and I will be back with more Shomelanoma adventures next month.       

December always brings a lot of bad memories to the surface for me, as it was Dec 2017 when I had the recurrence of a new brain tumour after immunotherapy treatment and just 2 months earlier my scans had been clear. You can be drawn into a false sense of security and as most stage 4 cancer patients know with this vicious disease things can change all too quickly. So, as I made my way back to the Marsden earlier this month for my latest scans to say I was feeling anxious was an understatement.  My previous scans showed an enlarged chest lymph node which can be caused for several reasons, infection, inflammation but can also be a sign of cancer. Six years ago in Dec 2016, I found an enlarged lymph node under my arm and that was malignant melanoma and growing very fast. I subsequently had surgery to remove all the lymph nodes under my arm.  However, in the case of the chest lymph node, I had felt somewhat reassured when my Oncologist had said at the last appointment that he wasn’t overly concerned.

My scans went very smoothly and I was in and out of the Marsden quickly thanks to the efficiency of the radiologists. There wasn’t long to wait for the results as I had the follow up appointment with my doctor 3 days later. I was feeling nervous, all the yoga and deep breathing still don’t make it any easier even after going through this for 6 years. My doctor called David and I into the consulting room and I was told that my brain scan remains stable and my CT scan is the same as the previous one, i.e. still showing the enlarged chest lymph node but it hasn’t grown. He thinks this is unrelated to my melanoma and we discussed that I would have repeat scans again in 2 months. I left the appointment feeling relieved that there was no change, I was feeling healthy but obviously the best situation would be that the lymph node had returned to normal. However, I decided to put this to the back of my mind and get on with enjoying the festive season one which 5 years ago I thought I would be very unlikely to see.     

The following Monday, I was back at the hospital to collect my medication and was en route home on the tube and I saw a missed call on my phone from “caller unknown”. Most patients will know that when you see this on your phone your heart normally jumps a beat as it looks like it is from the hospital. I had a jumbled message on the phone and my head went into immediate panic … maybe it was the results of my recent smear test and there was some issue with it. Anyway my Garmin watch told me to calm down and as I burst through the door at home to announce to David I was worried about a missed call from the hospital and couldn’t fancy another issue to deal with, he told me to calm down and he listened properly to the voice message on my phone.  I called the number left on my phone and quickly realised that it was in fact nothing to do with any dodgy smear test result but was in fact the Marsden trying to book dates for my next scans. Anyway I immediately felt relieved but it does just show the heightened anxiety that cancer patients feel around medical phone calls, appointments, scan results etc.  and this does not go away with time  and/or getting used to it and the December time of year just has so many bad memories that it just makes the situation feel much worse.

I have also recently passed my 5-year anniversary on my wonder targeted drugs Debrafenib and Trametinib, which have successfully kept my stage 4 melanoma under control for 5 years, this feels a significant milestone.  In Dec 17 when a new tumour turned up in my brain I honestly didn’t think I would be seeing another Xmas so the fact that I am still here to celebrate another one with family and friends makes it feel all the more special. I did become fixated with the fact that on average Debrafenib and Trametinib work for 12 -14 months and when that time passed I kept wondering how long they would work for and I do remember asking my doctor this question.  My Oncologist of course cant answer that question but he did remind me that this was an average so for some patients the drugs can work for much longer especially if you have a low tumour volume (less than 3) which is the case with me.  Also, I started the dab tram after responding to immunotherapy and the emerging evidence suggests that this provides a more durable response than the average 12-14 months.

After the recent hospital trips the festive season kicked off with gusto. This can be a very hard time of year for many people as we remember those we have lost. I was really pleased to attend the Royal Marsden Cancer Charity Celebrate a Life Carol Concert outside the Chelsea Hospital on Dec 8. It was a beautiful service and my 2 gorgeous girlfriends Liz and Jen also joined me for the service. This year I had a star on the tree for my cousin Brian Oates who died from bowel cancer in May 2017; we were both diagnosed around a similar time and used to share text messages. We sang loudly, remembered loved ones and listened to the words of the vicar giving such a beautiful service and it felt a very special evening. 

Another highlight of the Xmas season is our annual festive drinks party. This year the party moved to No 1 Duke Street Richmond and it was also my rock star husband David’s pre 50^th birthday drinks (his big bday is in February). The World Cup was in full force and it coincided with the England vs. France quarter-final so we had a large screen on to show the match. The England team didn’t quite manage to beat world champions France but it was a very close match. As soon as it finished we got on with the partying and the boys soon forgot about England’s world cup exit. It was really special to see all of our friends after 2 years of COVID and just let our hair down and have fun. The fact that I don’t drink anymore makes no difference to my party enjoyment. I was high on the excitement of seeing everyone to celebrate the festive season and David’s pre 50^th bday. We have many special friends who have supported us through tough times and it was lovely for David to say a few words of thanks to everyone who has been there through thick and thin for us. We appreciate it more than words can express we love you all and just want you all to know that as we enter into another new year.   

2022 has been another incredible year for the Team Shomelanoma Fundraising. Currently the grand total lies at £83,583 so a MAHOOSIVE thank you to all of our family and friends who have so generously supported and donated to the fundraising challenges it means the world and is hugely appreciated by the charity and the melanoma team at the Marsden Hospital.

I was also recently asked to write a guest blog for UK Fundraising, which is an online resource and community for UK charity fundraisers. My blog covered my Shomelanoma story plus lessons learned from the fundraising challenges. Here is the blog if you didn’t catch it on my social channels. : Meet the fundraiser: Shiona Ramage – UK Fundraising

As 2022 comes to a close I want to remember a quote from the wonderful Dame Deborah James who I found hugely inspirational and died of bowel cancer earlier this year. She said, “ find a life worth enjoying, take risks, love deeply, have no regrets and always have rebellious hope”

Sometimes dealing with a cancer diagnosis feels like climbing a mountain that is never ending but it also focuses the mind on what’s important in life. It’s not about the money and the stuff you cant take that with you, it’s the simple things having more time and adventures making special memories with those you love and that’s what I treasure every day as we go into 2023. Wishing you all a very happy new year, hug those closest to you and look out for more adventures coming soon from Team Shomelanoma and thank you again for all of your love and support.

What a difference a week makes. Last month Team Shomelanoma’s 13 musketeers were wakening up at 3 am after very little sleep in the mountain refuge dormitory ready to climb to the top of Mount Toubkal North Africa’s tallest mountain. Upon my return from Morocco I was straight into the Royal Marsden for my latest set of scans and was back to earth with a big bump.

As I had just returned from Morocco and having been on the highs of climbing Mount Toubkal there had been no time for thinking about upcoming scans. I headed off to Marsden HQ still feeling on a high from my Moroccan adventure. The scans were uneventful and all passed smoothly thank you to the radiography team at Marsden HQ who are a model of efficiency. I was back at the Marsden on the Friday to see my Oncologist for my results. My brain scan was clear which is good, as you know when my melanoma spread in 2017 it was to my brain and everything has been stable there for over 5 years. However, my CT body scan shows that I have a lymph node in my chest that has popped up. My doctor explained that lymph nodes can pop up for many reasons including infection and many other things that are not related to the cancer. In fact last year I had a similar situation on one of my scans and it was not long after I had my COVID jab. He also said he felt it was very unlikely to be related to the melanoma as if it does recur it is more likely to return where it has grown before. He advised me of my options – either we bring forward my next scans from 3 months to 2 months or he could send me to see a chest specialist for further investigation and he would most likely do a bronchoscopy and biopsy to check it out.

I left the hospital feeling very frustrated. I had just come back from the most amazing trip to Morocco and less than one week later here we were again back on the cancer rollercoaster more tests, worry and anxiety but such is the life of living with stage 4 cancer. After I had time to digest and process the news I thought about Dame Deborah and what she would have done in my situation and I know she would have pulled up her big girl pants got out a glass of wine (in my case non alcoholic beer) and danced round the kitchen, one day at a time and fingers crossed this is just a blip on the long road.

The following week I was back at the Marsden for my planned check up with my Breast Cancer Oncologist. Fortunately my ultrasound and check up were all good so I have decided to have my next scans brought forward from 3 to 2 months. If there is still an issue on the next scan then I will be sent for further investigation. I know that other patients have had this issue also had it investigated and it has turned out to be innocent so I have fingers crossed and will keep you posted.

Back to the amazing adventure to Morocco, we set off in mid September for the latest Team Shomelanoma Hiking Challenge to climb Mount Toubkal North Africa’s tallest mountain. Getting packed for the challenge was giving me flashbacks to Kilimanjaro, which we had climbed 6 years ago, and was the last big overseas challenge we had undertaken. In the run up to the trip I had called Insurance With who are a specialist travel insurance company who cover cancer patients and had insured me previously when going off on adventures to Peru and Argentina. When I called them the week before setting off for Morocco, they informed me that they no longer insured anyone to go above 4000m. With Mount Toubkal at 4167m this presented a problem and the agent told me they would not be able to insure me. As it was important that I was insured for the altitude I had to go with another insurance provider but my melanoma would be excluded. I wasn’t overly concerned about this but it does highlight the issues of travel insurance for a stage 4 cancer patient.

Team Shomelanoma all arrived safely in Marrakesh and we had a couple of days exploring the crazy city before setting off for the Atlas Mountains. Friday morning we left Marrakesh and headed to the village of Imlil in the foothills to start our trek. After a briefing with the local guides we set off on the 6-hour trek climbing from 1740 m to Toubkal base camp at 3210m. It was a hot day and there was no shade and you rise a significant amount of altitude in one day. We were all very happy to reach the Toubkal basecamp refuge to get our heads down for the night ready for the 3 am wake up call. We were all in one dormitory in bunk beds and the conditions were pretty basic. I had little or no sleep as I had a dodgy stomach and ended up at the toilet every hour on the hour. When the 3 am alarm call came I was feeling pretty tired and we hadn’t even started the climb in the dark to the summit.

We all set off up the steep scree and boulder filled slopes and it literally was straight up to the summit. Climbing in the dark, head torch on reminded me very much of Kilimanjaro summit night where you can just see the lights of the hikers torches ahead zigzagging up the slope. We could really feel the altitude and the air thinning and I found myself stopping to catch my breath on the way up. We did stop for regular breaks and it helped having Clem singing some Take That numbers on the way up to keep the morale of the team up. I was tempted to join in but my singing is not the best as many of you will know. The relentless ascent continued until we could see a glimpse of light and realised that the sunrise was coming and we should be nearing the summit. We approached the crest of the summit where we had a short break and could feel the full force of the icy winds. At this point as the sun rose we got the full effect of the amazing views as the sun appeared and we could see the full cloud inversion below. Unlike Kilimanjaro when there was still a long hike to the summit as the sun rose we could see Toubkal summit was just another short climb away and along with the views this gave us an extra boost to reach the summit.

The views were epic and the feeling euphoric as we all reached the Toubkal summit. I was feeling super proud of all of the team and slightly emotional that here I was 5.5 years on from my stage 4 melanoma diagnosis and still able to take on these incredible adventures with a very special team of family and friends. In my rush to congratulate our lead guide Craig on getting us all safely to the top when he said to me “ Don’t do that now we still need to all get down safely” I realised that we still had a long way to go until we were all back at the next hostel. As we started to descend down a very steep slope full of loose scree I realised that the toughest part of the climb was not in fact the ascent but the descent. After 4 hours of the rocky scree slopes, I almost lost it when we arrived at the boulder field, I was tired kept falling on my bum and just needed to get onto a more stable footing. We did finally get down over the boulders and we arrived at the next hostel 14 hours after we had left the refuge absolutely exhausted. After no sleep for the previous 48 hours we all slept like logs and the next morning everyone was feeling much brighter even although the legs were still aching. We spent the next day walking around the berber villages of the Atlas foothills, which were just beautiful. Here are a few photos of our amazing adventure.

This was one of the toughest challenges we have taken on so far and I feel super proud of all of the team for successfully completing it. A huge thank you to Craig Saunders and the team of local guides who looked after us all amazingly well. 5 years ago after being diagnosed with stage 4 melanoma I honestly didn’t think I would be able to continue taking on such extreme challenges. I am hugely grateful to the team at the Royal Marsden for the fantastic care I continue to receive especially Prof Larkin, Nikki Hunter and Miss Fiona MacNeill who all have actively encouraged me to continue living life to the max. The challenges have also given me a sense of purpose, motivation and have helped keep me healthy both physically and mentally. To all of my Toubkal Team Shomelanoma musketeers you absolutely rock massive thank you for creating another memorable adventure that will last a lifetime and was very special love you all.

The team was taking on this challenge to raise funds for melanoma research at the Royal Marsden. Less than 10 years ago someone with my prognosis where melanoma has travelled to the brain would survive on average 6 to 9 months’ as there were no effective treatments available. The fact that I am here 5.5 years after a melanoma tumour was diagnosed in the brain is nothing short of incredible and in large part due to the significant advances in drug treatment (immunotherapy and targeted therapy), which have transformed the treatment of advanced melanoma. However over 50% of patients do not respond to current treatments or the cancer develops resistance and they run out of options. We lose 7 people a day to melanoma in the UK and this is why we are so passionate to continue funding melanoma research to stop so many people losing their lives to this devastating disease.

Whilst melanoma has been at the forefront of immunotherapy, its use has subsequently extended to many other cancer types. The funds we raise are explicitly used to further understand immunotherapy treatments and the evolution of cancer as it metastases and spreads around the body, in the hope that further breakthroughs and improvements in cancer treatments emerge.

A MASSIVE thank you to everyone who has supported the latest Team Shomelanoma Toubkal Challenge.
https://www.justgiving.com/fundraising/Shiona-RamageToubkal

In addition, Chris Lloyd and Becky Pearce took on the Royal Parks Half Marathon for Team Shomelanoma last Sunday October 9. They were both fabulous and completed the race in good times raising more funds for the Royal Marsden. Big congratulations to them both and thank you to everyone who has supported them.
Thank you again to everyone who has supported the Team Shomelanoma fundraising challenges. I’ll be back next month with more Shomelanoma updates and keep your fingers crossed my pesky lymph node is just a blip.

Like many stage 4 cancer patients, I have followed Deborah James (Bowelbabe) over the last 5.5 years since her diagnosis and felt heartbroken to hear the news that she had died and am sending much love to her gorgeous family.  Much has been written about Deborah, her incredible campaigning has changed the conversation around living with cancer, the brilliant podcast You, Me and the Big C which felt like a warm companion being completely open about dealing with the shitshow that is cancer, her incredible fundraising which will help fund new research for innovative treatments and her amazing zest for life. She has also in the last couple of months put the spotlight on end of life care and talked openly about having the death she wanted with her family around her and has helped so many people in doing so.  She will be very much missed and leaves a legacy that her family must be hugely proud of RIP Dame Deborah.

I was recently due back at the Marsden for my latest scans. I have been going through the scan cycle now for over 5 years and I would hate to count up the number of times that I have been lying in a CT or MRI scanner it has just become part of life. Normally in the build up to the scans I am going through a period of mental anxiety, strange dreams and of course feeling worried that the cancer may be on the march again. This has become my  normal and other stage 4 cancer patients will relate to these feelings. This time in the build up to scans I had been fortunate to have spent 4 days the week before at The Cabilla Wild Calm Retreat in Cornwall.  It is hard to describe in words just how amazing this special experience was in helping me reflect and get rid of some of the anxiety and stress that had built up inside.  I spent 3 days in the beautiful surroundings of the temperate rainforest in Bodmin Moor, Cornwall. We learned about the rewilding programme taking place there, went on nature walks to spot the beavers, wild swimming in the woods, daily yoga and had the intense experience of the gong sound bath which helped you to dig deep and release that inner stress. The retreat was led by the fabulous yoga teacher Sorrell Drake and we were fed the most delicious vegetarian food by  @mindfulchefette. I left feeling very relaxed and calm and would really thoroughly recommend the wild calm retreat, it was an amazing experience. Here are a few pictures and the link to Cabilla https://www.cabillacornwall.com

By the time the date for the scans came round I was still feeling the calm effect from the wonderful retreat experience and my love of yoga had also been rekindled, I remembered how much the breathing helped me when I was feeling stressed. The scans passed without event and I had a busy week in the run up to the results appointment going to Wimbledon and Hampton Court Flower Show. By the time Monday morning came around and I was due in at Marsden HQ for the results and David was allowed to attend with me for the first time in 2.5 years due to COVID. My scan results were good, I have passed go for 3 more months and my Oncologist also reminded me that it was 5 years since I completed my immunotherapy treatment and spent 3 weeks in hospital. At that point I didn’t dare to dream that I would still be here 5 years on and I felt quite emotional thinking about it. I know that I have been very fortunate to have benefited from the latest drug treatment for advanced melanoma. However many patients do not respond to treatments or their cancer develops resistance hence why it is so important to continue funding melanoma research to find new treatments and there is so much more to be done.

Last month the Melanoma Patient Conference took place for the first time in person since 2019. The conference was start by fellow patient Imogen Cheese with the goal to provide information for patients on the current systems of care, treatment access and support for melanoma. It was really wonderful to be back at the conference and see other patients in person who are going through a similar experience to you and just get it. The patient panel where 3 melanoma patients shared their experience of living with melanoma was one of the most moving powerful sessions and you really understand that whilst we all have melanoma each patient experience is so unique and different.  I also found the Oncology Session extremely valuable particularly the session by Dr Paul Nathan that covered the latest developments in treating brain metastases (mets), which can pose a significant challenge for treating melanoma. His talk highlighted that one of the keys to successfully treating brain mets is to catch them early and there is also an improved response to treatment when they are asymptomatic.  There is also research work underway to understand more about the tumour microenvironment in the brain. The other talk that was very interesting was from Dr Rebecca Lee and focused on the Biomarkers and how they impact on Therapy specifically looking at circulating tumour DNA in the bloodstream. It has the potential to be useful for patients in the clinic to monitor for disease relapse, predict the response to therapy, identify the mechanisms of resistance and optimise the scheduling of treatment.  There are currently ongoing trials to assess whether this can impact treatment and improve outcomes for patients and it will be very interesting to monitor how it all develops.  It was a wonderful couple of days and a huge thank you to Imogen and everyone who contributed to the conference. 

Earlier in the summer David and I made a trip back to the north of Scotland to the beautiful region of Torridon and then spent a week in the Outer Hebrides. We really love it there it is hard to believe that it is part of the UK, the scenery is just stunning and it really feels like one of the last unspoiled wildernesses. The beaches are beautiful and the sea wild and we were really lucky to have a cottage overlooking Luskentyre beach. We also explored the isle of Lewis this time and it is also stunning. I felt really fortunate to go back there as I was last there in 2018 and I really didn’t know if I would return. We also ate some amazing fresh seafood, which I love and it was good to finally get there after 2 years of COVID. Here are some photos from the amazing trip.   

Team Shomelanoma is now training for their next big challenge, which is coming up in mid September.  We are taking on climbing Mount Toubkal, which is North Africa’s Highest Mountain and is 4167m.  This will be the biggest challenge since we did Kilimanjaro 6 years ago. We have a team of 15 who are signed up and in just 6 weeks we will be flying out to Marrakesh to start our climb in the Atlas Mountains.  It will take 3 days we will be sleeping in refuges and will have the altitude, heat, and tough terrain plus scrambling over the boulders to contend with to reach the summit. We will need to dig deep these challenges are often as much about the mental as the physical challenge.

 I have a feeling of nervous anticipation at the moment. One positive of the current heat wave is that we are doing our training in warm weather, which should hopefully help with the heat of Morroco. A couple of weeks ago we were down on the South Downs for my birthday and out hiking around Arundel and Amberley. It was a beautiful day although really hot. After 3.5 hrs we arrived in Amberley and whilst I had been drinking water and we had stopped for a break I was feeling like it may not be a good idea to continue for the rest of the 8km given the heat. So we stopped had a drink in the pub and got the train back to Arundel. I was glad that we listened to our bodies and didn’t push on and get heat stroke (I have enough medical issues to deal with). Since then training has continued in the Surrey Hills and the Chilterns and this weekend we are off to the Malvern Hills followed by Scotland for more hill training.

We will be raising funds to continue supporting melanoma research at the Royal Marsden Cancer Charity. As we know many patients do not respond to current treatments of the cancer becomes resistant and we continue to lose 7 people every day to melanoma in the UK and why we are so passionate to continue funding melanoma research to find new treatments as we are losing too many lives to this devastating disease .  https://www.justgiving.com/fundraising/Shiona-RamageToubkal

If you would like to support the team in their next challenge we would be hugely grateful and thank you as always for your continued support.

I will be detailing the Team Shomelanoma Morroco adventure on the blog and on all social channels. There will also be a Morocco themed food and drink party to come, which will also act as a fundraiser to support the challenge. Look out for more details to come shortly on this. I also have to say a big thank you to the Royal Marsden Cancer Charity team who have designed a fabulous new supporter page for the Team Shomelanoma Fundraising and also a new Team Shiona Marsden Fund Logo, which I absolutely love. One of my good friends who said on seeing the logo oh I love that it looks like you !

On that note,  I hope that you are all having a wonderful summer, with all of these extreme temperatures please ensure you are protecting your skin with factor 50, stay out of the midday sun and cover up. Please also do a monthly skin check and Melanoma UK has an excellent checklist. If in doubt get it checked out.  I’ll be back with more on the Morocco Adventures next month.

May is Melanoma Awareness Month

Five years ago at the end of March, I received the devastating news that my melanoma had spread to my brain and I would need immunotherapy treatment. I remember the day very clearly and my head going into a complete tailspin as I realised the enormity of what I was being told and questioned whether I was going to survive the next 3 months.  I didn’t really process anything I was being told about the treatment and I left the consultation in shock. Fortunately my husband David was with me and had managed to take in more of the detail. The immunotherapy treatment (ipilimumab and nivolumab) that has contributed to me still being here has been a game changer for extending the lives of advanced melanoma patients, began a few days later, for anyone who wants to read more about my full melanoma story is available here https://shomelanoma.com/about/

Cancer anniversaries are a reminder of how long I have been living with incurable cancer not something that is necessarily to be celebrated. However I have been incredibly fortunate to have benefitted from the huge advancements in treatments for advanced melanoma and without these and the incredible care I receive from my second home The Royal Marsden I would without doubt not still be here writing this today.  Too many patients however don’t respond to these treatments highlighting the huge need to continue funding melanoma research to continue developing new treatments and stop patients continuing to lose their lives to this awful disease.

I was back at the Marsden in late March for my latest scans and all went smoothly at the hospital. The day after the scans I started to feel ill with a bad headache, blocked up nose and I was really tired. The next day I felt worse so I did a COVID test and it was positive.  I registered it with the NHS app and contacted the medical team at Marsden HQ to find out if I should continue taking my drugs. I was told by my Oncologist to continue on the medication as long as my symptoms remained mild. I didn’t feel great the next day but it was just like having a bad cold. On Friday, 2 days after I had tested positive the GP called to check in how I was doing and also to let me know they were referring me to the St George’s COVID team to check if I needed to have the antiviral drugs which were being given to the vulnerable. On Saturday, I had a call from St Georges and they went through a series of questions with me. By this point I was feeling slightly better but the doctor said he wanted me to speak to the respiratory consultant. On Sunday, the respiratory consultant called me and we went through more questions and in conclusion he decided that based on my feedback I didn’t need the antiviral drugs. I was impressed that the COVID response had kicked in and it did take me back to the start of the pandemic when my Oncologist advised that it was highly likely that I would get the virus at some point but it would be better to get it later rather than sooner as they would likely develop drugs to treat it which obviously they now have with the vaccines.  I was due into the Marsden on Monday for my scan results and to see my Oncologist but on Sunday eve I was still testing positive so I contacted my medical team and said I think its best I have a phone consultation.  At 8am on Monday morning my phone rang and it was Prof Larkin to tell me that my scans were good, 3 more months of drugs were being prescribed and it was happy days. I was so delighted 5 years on from being told that the melanoma had spread to the brain and as always it’s a huge thank you to the amazing melanoma team at the Royal Marsden especially Prof Larkin and my CNS Nikki Hunter who have been there with me all the way.

In the last couple of months, there has been much sad news on the melanoma support group that I am a member of and we have lost many special people.  One lady in particular I used to message some times as we had a similar love of the Scottish islands and I met her at a patient lunch a few years ago Susannah Archer who died of stage 4 melanoma a couple of months ago. It all happened very suddenly as she had run out of treatment options and was on a trial. She was always answering questions of other patients even although she was going through a lot herself and I learned a lot from her about educating myself about melanoma, not being afraid to question my medical team and advocating for myself. She was also a very talented wildlife photographer and her photographs were very calming.  David and I will be going to the Outer Hebrides shortly and she loved the Isle of Harris so will have a toast to her when we are there and think of her husband and son.    

This reinforces how quickly things can change and makes me determined to keep focused on the Team Shomelanoma fundraising for melanoma research at The Royal Marsden.  I am delighted to announce that the next big fundraising challenge for Team Shomelanoma is the Toubkal trek in Morroco, North Africa’s highest mountain which we will be taking on in September 2022. This will be a tough challenge as we will be climbing in the heat of the Atlas mountains and Mount Toubkal is not to be underestimated at 4,167m. Team Shomelanoma has 16 hikers signed up and training is kicking off shortly. A huge thank you to everyone who has signed up and we are looking forward to another challenging adventure raising funds for the fantastic melanoma research team at the Royal Marsden. More to come on this challenge and how you can support the team in the next blog.

As COVID restrictions have lifted Dave and I were lucky to get away for a mini break to Madrid over Easter. It really is a beautiful city and we had a fabulous long weekend exploring all that the city had to offer. It was the first weekend of warm weather of the year and we could easily identify the Brits in the city. With temperatures in the low 20’s the Spanish were still wandering around in their winter wear whereas you could spot the Brits a mile off in their shorts and vest tops displaying as much skin as possible to get a tan. As we enter May – Melanoma Awareness Month and go on the raising awareness of skin cancer, this is just a reminder to do a skin check once a month and report any changes to your GP or dermatologist.  Melanoma UK has an excellent checklist and I recommend reading through this, I would hate for anyone else to go through the experience of this awful disease just because they wanted to have a tan.

https://www.melanomauk.org.uk/pages/category/skin-check

We are coming up to conference season and with COVID restrictions lifting we will once again be having in person conferences this year. I am looking forward to the Melanoma Patient Conference in June and my Oncologist Prof Larkin is giving a lecture on immunotherapy at the Royal Society of Medicine that I am planning to attend. There are many new and exciting advances taking place in treatment of melanoma and this week my Oncologist did an update for Melanoma UK, which provided an excellent update for patients on the latest treatment developments. Here is the short video for those of you that may be interested https://www.melanomauk.org.uk/news/melanoma-update-april-2022

Thank you as always for all of your support, with the 5 year milestone passed it is onto the next one, while living life still very much in the present and treasuring every day ( and being very glad to still be here) I am closing this blog remembering the lovely Susannah Archer.