Cancer · Fundraising · Living with Cancer · Melanoma

5 Years with Melanoma, What I’ve Learned and Living every day to the Max

As I passed my 5 year cancerversary on June 16, I am feeling very thankful still to be here and also looking back thinking how naïve I was when I initially received my melanoma diagnosis.  In fact just last month when I was at the Holy Trinity and Christ Church schools presenting to all the children taking part in the Skipathon one of them asked me ”Was I shocked when I was diagnosed” ? When I look back on that now the answer was probably no as I suspected something was wrong with the mole, but what I really didn’t realise was when the Doctor said to me , only 50% will survive 5 years and its not a great diagnosis, I did not appreciate the severity of it all.  Many of you know the story from there or you can read the summary here. https://shomelanoma.com/about/

Whilst life changed forever on that day in June 2016, and the melanoma rollercoaster had only just begun, one of the most important things that happened was the plastic surgeon Mr Simon Wood who gave me the bad news that I had melanoma also referred me into The Royal Marsden to see Oncologist Prof Larkin. At the time I really wondered why on earth I was being referred there when my PET and MRI scan had been clear. However he knew that I had a thick 4.5mm melanoma that was ulcerated, I was stage 2C at very high risk of spread and how right he was. This decision got me under the care of one of the best cancer hospitals and melanoma specialists and for that I am forever grateful.

I have learned a lot about melanoma over the last 5 years. Just a few weekends ago I was logged onto the ASCO Cancer Conference – the world’s largest clinical cancer conference.  As it was a virtual event they allowed patients to attend this year.  As you know there has been much progress made in treating melanoma in the last 10 years with both immunotherapy and targeted therapy. However 50 % of advanced melanoma patients don’t respond to immunotherapy and many develop resistance to targeted therapy. The results of the latest clinical trials were presented at the conference and there are some promising new drug trial results. However it takes time to get the drugs through the approval processes plus every country has different funding requirements and many patients just don’t have the luxury of time. We have seen with COVID how quickly vaccines have been developed, approved and rolled out and whilst I realise cancer is a very different disease it is still killing hundreds of patients every day. I just hope that some of the learnings from COVID can be applied to cancer and help get these life saving drug treatments to patients more quickly.

It has been a hard few weeks for many melanoma patients in the support group I am a member of. We continue to lose patients far too young and there are many struggling as the disease advances all too quickly and they run out of options. It is heartbreaking watching all of this unfolding. As I have been approaching my latest set of scans I have found myself having strange dreams and whilst I have been feeling well in myself you just never know what is going on inside. Two weeks ago it was time to go back to Marsden HQ to find out what has been happening with my pesky breast tumour.

As many of you know I had a nervous wait a few months ago when a chest lymph node had popped up on my scans that then turned out to be due to my COVID vaccine so I did feel anxious going to my ultrasound to check if the tamoxifen was doing its job on the breast tumour. I am pleased to say that there is now no evidence of the breast tumour and the tamoxifen is doing its job. My doctor told me you are very responsive to drug treatment, a walking miracle and I left feeling massively relieved to have passed go once again for the next 3 months.

I couldn’t switch off yet as I still had the melanoma scans coming up this week and it was back to my second home last Tuesday for a CT and MRI scan. There were no dramas, it all went smoothly and the RMH radiography team were at their efficient best. I didn’t get much sleep on Thurs eve before going into the hospital on Friday to get my results. I had my best friend Jen’s 50th bday party on Fri eve so I was really hoping it was going to be good news and a double celebration and fortunately it was. Prof Larkin told me my latest scans are clear so its happy days and I can now go and have a good summer. As always a massive thank you to the wonderful team at the Marsden who look after me so well, you are all amazing.

I know that I have been incredibly fortunate to benefit from the advances in melanoma treatment over the past 10 years. But there is still so much more to be done and that is why the fundraising for the melanoma research at the Royal Marsden is so important to continue funding the research and helping the team develop further life saving treatments.

Over the month of May (Melanoma Awareness Month) the Shomelanoma team including the wonderful children of Holy Trinity and Christ Church primary school in Chelsea took part in a month long Skipathon fundraiser raising funds for melanoma research at the Royal Marsden. It has been such a successful and fun fundraiser and I want to say a HUGE thank you to everyone who has taken part so enthusiastically and also generously supported the team.  There were many highlights to the month including bringing together friends and family from across the globe, the sheer enjoyment of seeing everyone skipping every day for a month, the fancy dress Friday which the team embraced and the improvement in skipping skills and tricks. It was getting quite competitive by the end of the month. 

The top highlight for me was the day I spent with the children of Holy Trinity and Christ Church School. I spoke at all of their assemblies sharing my melanoma story, the care I receive at the Royal Marsden, why I am fundraising, the wonderful research they are doing and educating them in sun safety. They asked me lots of intelligent questions and were very engaged. After each of the assemblies I had a skipping session with all of the children. It was such an enjoyable day so lovely to see how much they were all loving the skipping and also to see how engaged they all were in the assemblies. A MASSIVE thank you to Headmistress Mrs Avis Hawkins and also Katie Rose for their incredible fundraising support plus all of the children, parents and carers.  Also for my return to school I did forget to address Avis as Mrs Hawkins, black mark for that one must do better next time.  

One of the parents wrote “Such an amazing inclusive fundraiser, our girls have not stopped skipping all month and are so proud of their new skills. Such an important cause and brilliantly organised. “ I was slightly sad when the month came to an end it has been so much fun. I know that for some they were delighted when May 31 arrived and they could put down the skipping ropes.  We raised £6,382, which is just fantastic so huge thank you once again, and an update on the melanoma research projects the funding is supporting will be featured in the next blog.

Next up is the Giants Causeway Challenge, which is now just 2 weeks away. The team will be hiking 26 miles over the steep undulating coastal path of the Northern Ireland Giants Causeway. We are very much hoping that the weather gods will be kind to us and we wont be having a repeat of the Welsh 3000’s 2 years ago when it rained cats and dogs for 3 days. We will be prepared for all eventualities so look out for a progress update in the next blog and all support for the team is much appreciated.

https://www.justgiving.com/fundraising/shiona-ramagegiantscauseway

As we celebrated Jen’s fabulous 50th birthday on Friday eve with her special friends and family, I briefly reflected on the fact that 5 years ago I never thought I would still be here and it really is thanks to the wonderful advances of medical science, a kickass medical team, rockstar husband and amazing friends and family. I have hope and options, it’s still one day at a time enjoy and savor every moment and live every day to the max. I hope to catch up with you soon, wear your factor 50, protect and check your skin regularly and have a wonderful summer. I’ll be back soon with more Shomelanoma adventures.

Cancer · Fundraising · Living with Cancer · Melanoma

Its May – Melanoma Awareness Month and Time for the Skipathon

Living scan to scan can take its mental toll and as you know I have been on a bit of a rollercoaster over the last few months.  As my last scans had showed an indeterminate anomaly with a chest lymph node on my scan I was feeling slightly nervous as I headed to the Marsden for my latest results last Friday.  It sometimes feels like turning up at the teachers door for exam results not knowing if you have managed to scrape past or not, except in this case the results can have a much more fundamental meaning as there may be no resits. This may sound over dramatic but I felt rattled to the core earlier this year after my experience earlier in March plus I also saw from 2 other friends who also had stage 4 melanoma just how quickly things can change and they are sadly no longer with us.

I am a glass half full person and live every day to the fullest as my Dad taught me that and cancer has made me even more determined that that’s how I’ll be living my life. I used to be worrying about deadlines for work or what I’d be wearing to the next party but that all falls into insignificance when you are waiting to hear if you’ll sill be alive and kicking in 3 months time.  Of course no one knows that but living with not one but 2 cancers means my odds are not ones you would be betting the house on. Saying that and with my positive hat on I am still here four years on from that stage 4 melanoma diagnosis and that almost certainly wouldn’t have been the case 10 years ago. So my trip to the Marsden on Friday was a good one, my latest scan results are all good, there is no issue now with the chest lymph node and my Oncologist was correct it was likely due to the COVID vaccine. I left the hospital armed with cycle (months) 42, 43 and 44 of the wonder targeted drugs Debrafenib and Trametinib looking a bit like a Mexican drug lord and felt elated to be passing go for the next 3 months.   Thank you as always to the fantastic melanoma team and also a big thank you to the radiology team. I am a frequent flyer at the Marsden for scans I haven’t counted the number I have had but it is a LOT. The radiographers are amazing calming the patients, chatting to you knowing your name as they see you there so often and putting you at ease while understanding you  are going through a stressful experience. They are then reporting on the scans in super speedy turn around time so that everything is ready for your doctor by the next appointment. They are some of the unsung heroes at the hospital and often go under the radar when they play such a key role in your overall care and deserve a big thank you.

With the lockdown starting to lift in the UK I have been beyond excited to catch up with friends and family. It has felt so special to see people in person and such a treat to go out and eat dinner. It was also lovely to get out of London and see the hiking gang and those simple things that you used to take for granted are really a special treat. We are also in countdown mode for our trip north of the border after 3 cancelled trips from the autumn through Xmas plus we have had to postpone our planned trip to the Outer Hebrides until next year, however, we are all set to head there later this month and cant wait to see the gorgeous parentals and family.

As we reach the start of May it’s Melanoma Awareness Month and Team Shomelanoma are kicking off the Skipathon Challenge starting today May 1. It’s going to be a lot of fun, we’ll be skipping for 10 mins every day and there’s going to be some funny videos and pics to share.  I have to say a HUGE thank you to everyone who has signed up for the challenge and a big mention to Christchurch and Holy Trinity Primary School where my lovely friend Avis Hawkins is Head Teacher and approximately 400 of the children there will be joining the Skipathon for the month to help raise funds for melanoma research at the Royal Marsden. Having seen some of them practicing their skipping this week they are looking pretty good.  We’ll be sharing some fun photos and videos throughout the month so look out for them, we are beyond excited to get going well some more than others David will be getting his new skipping rope out of the bag tomorrow and attempting to skip for the first time in many years, look out for that video.  Full details of the skipathon .

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

I also have to say a BIG thank you to gorgeous friends Chris Lloyd and Nicki Millward who both took part in the virtual Royal Parks Half marathon on April 11. Chris ran along the banks of the Thames with David alongside him on his bike for moral support. As many of you know Dave is a regular at the Royal Parks half marathon (he is featured in the Marsden Progress Magazine this month) but he is saving himself for the next Royal Parks half marathon in October so that he can get his running back up to speed. Jane and I were on our bikes too in the support crew and Chris finished in a good time under 2 hrs. Nicki was running close to home in the Malverns and also did an excellent time of 1 hr 54 Thank you to both of them and everyone who supported their amazing effort.

If you would like to join any of the upcoming fundraising challenges or organize your own please let me know. I will be doing a full update on the melanoma research projects the funding is supporting  in an upcoming blog.

As the weather starts to heat up in the UK we will no doubt see the excitement of the British public stripping off as soon as they see the sunshine. Remember that UV damage is cumulative and to protect you skin and stay out of the mid day sun. Most importantly don’t get burnt and if you do notice any changes to any moles or new skin lesions get them checked out by a GP or dermatologist. The motto is if in doubt get it checked out and don’t delay.   Melanoma UK is an excellent source of the key warning signs to look out for

https://www.melanomauk.org.uk/the-abcde-rule

Thank you as always for all of your support. I’ll be back soon to report on a full update on the Skipathon next month.

Cancer · Fundraising · Living with Cancer · Melanoma

Milestones, an anxious wait and a new challenge

It is feeling like we have turned a corner after what can only be described as an annus horribilis.  One year on we have been remembering all those who have tragically lost their lives not just from COVID but cancer, heart disease, strokes and other illness.  We are also feeling thankful to all of key workers especially in the NHS who have kept going through unimaginable stress.  As spring arrives we can start to feel hope with a vaccine programme that is currently going well and I cant wait to see family and friends again.  As I write this I am feeling very thankful to still be here 4 years on from that horrible day on Mar 31, 2017 that I was told melanoma had been found in my brain.  A BIG thank you to the fantastic team at the Marsden still doing a kick ass job of keeping me alive and kicking.

As you know from my last blog, 2021 started for me back on the cancer rollercoaster.  Many fellow patients will identify with this rollercoaster as it goes on from scan to scan (currently every 3 months) but doesn’t take much to disrupt the apple cart.  After the worry of the numbness in the ear in January I turned up for my latest scans feeling a bit more relaxed.  As I now have breast cancer checks along with the melanoma scans the team at RMH had booked all of my tests in for the same day so that I didn’t have to return to the hospital over several days.  It was all going well, I had my CT and MRI scan and turned up for my ultrasound on my breast when I noticed that my arm was bleeding badly.  The nurse patched me up and the ultrasound went fine and I set off to get some lunch, as I was starving not having eaten all morning.  

I usually enjoy a trip around Chelsea but with everything closed and it being a bitter cold day being sat on a bench outside Marsden HQ didn’t hold the usual joy.  As I munched my sandwich I noticed that blood was still running down my arm so headed back into the hospital where I was due for blood tests.  It seemed my vein had burst after the cannula was removed from my scans so the nurses were fantastic as by this point I was feeling faint probably a combination of the lack of food and the stress of seeing my blood covered arm that made me look like an extra from a horror movie.  It was decided to leave the blood tests to the next day they gave me cup of tea and a biscuit made sure I was ok and I headed off for my consultation with my breast doctor.  This was all going well; the tamoxifen continues to work when she noticed the results of my CT scan that had taken place in the morning had come through.  The scan showed I had a chest lymph node that was “indeterminate”, this could be caused by the cancer or inflammation but could also be a result of the COVID vaccine which I had recently and has resulted in several patients having lymph node anomalies pop up on scans.

Anyway I left the hospital with my head in a bit of a tailspin especially after the day I had just had.  I jumped in a taxi to head home and as I opened the door my nurse Nikki had called David as they had been told I had received my CT results and left the hospital worried. I spoke to her as soon as I got home and she reassured me not to be too concerned and I had my consultation with Prof Larkin the next day and we would discuss it further then.  I felt better and by the time I returned to the hospital the next day I was feeling less worried and in a better frame of mind than the day before which had been long and stressful.  After the meeting with my doctor at which my MRI brain scan results had also come through and these were fine it was decided they would bring my next scans forward a month to double check the chest lymph node.  He was positive the brain scan was good after all the concern in January, the tamoxifen was working for the breast cancer and fingers crossed the chest lymph node is nothing untoward. I left the hospital feeling much happier and have managed to put it to the back of my mind.   

One of the positives of my cancer diagnosis is that it has made me really focus on what’s important in life. The last year has been hard for everyone but it has taught us not to sweat the irrelevant and make the most of every day plus appreciate the small things.  I have also enjoyed channeling my energies into fundraising to support ongoing melanoma research projects at the Royal Marsden. It’s my way of saying thank you and giving back whilst the challenges keep me fit and active along with those that I love. The challenges have been curtailed for the last year due to COVID but are about to kick back into gear with a new challenge the Shomelanoma Skipathon , which will be taking place during the Melanoma awareness month of May.  Team Shomelanoma will be skipping  for 10 mins every day in May, having fun, counting their skips, getting fit, sharing photos and videos and raising valuable funds for melanoma research at the Royal Marsden. We would love you and your kids to join us. Full details are available here  https://shomelanoma.com/fundraising-skipathon

I also have to say a huge thank you to Phil and Sharone Slavin who made a very kind donation to melanoma research in memory of Phil’s father who sadly passed away last year.  In addition, Russell and Anna Bliss have also made a kind donation to the upcoming Giants Causeway Hike, which is due to take place in mid July.  The support we have received over the last 4 years for the fundraising has been amazing and I want to thank everyone who has participated in all the fundraising activities and generously supported them. This means the world to me, the melanoma team at the Marsden and the charity so a HUGE thank you. It also keeps me motivated to continue and also helps keep me fit and mentally well.

If you would like to join any of the upcoming fundraising challenges or organise your own please let me know. I will be doing a full update on the melanoma research projects the funding is supporting  in an upcoming blog.

As the lockdown starts to lift, I am excited to get back out to see friends and family and very much looking forward to a trip north of the border to see the Scottish family plus a trip to one of our favourite places the Outer Hebrides. We have been spending the last few weeks with regular trips to Richmond Park, which is a pretty beautiful spot and with the arrival of spring is looking lovelier each week.  It will be good to go further afield and catch up with the hiking gang soon as we have been missing them all and all of their banter.

As the weather starts to heat up with the UK forecast to have a mini heat wave this week we will no doubt see the excitement of the British public stripping off as soon as they see the sunshine. Remember that UV damage is cumulative and to protect you skin and stay out of the mid day sun. Most importantly don’t get burnt and if you do notice any changes to any moles or new skin lesions get them checked out by a GP or dermatologist. The motto is if in doubt get it checked out and don’t delay.

Thank you as always for all of your support. I’ll be back soon to report on an update on the Skipathon and to offer some training tips. In the meantime happy skipping and I’ll be back with more Shomelanoma updates soon.

I

Cancer · Fundraising · Living with Cancer · Melanoma

Back on the Cancer Rollercoaster and Vaccine Time

I hope that you are all surviving lockdown 3, it is starting to feel like groundhog day in the UK and when I woke up one morning last week I said to David, can you just wake me up when we get to spring.  In the last month there have also been more trips to Marsden HQ. I had settled into my routine and was happily going along with my 3 monthly scans and telephone consultations.  After the good news of my melanoma scans in early December, just before Xmas, I found out that the biopsy done on the right breast was cancerous and whilst it is contained and very small it does now require treatment.  I felt disappointed as if dealing with stage 4 melanoma wasn’t enough now there was another cancer to be dealt with too. However on a positive note it was 4 years since the precancer breast cells were originally discovered and the tumour was very small.  Just before Xmas I returned to the Marsden to discuss the planned treatment for the breast cancer.

I can’t tell you how good it is that both of my doctors are at the same hospital. I had a nightmare experience 4 years ago when this was not the case. I wouldn’t even like to think about how this would have been in the current COVID crisis.  Before my appointment both of my doctors had discussed my situation and there are two options for my treatment path and I was back to discussing the competing cancers risk assessment.  The first is that I take the drug tamoxifen with a possible course of radiotherapy if required. The second option would be a mastectomy with full reconstruction. I have currently started the tamoxifen and so far feel ok with no side effects. This week I had an ultrasound at the Marsden, which showed that I am responding to the treatment and the tumour has almost halved in size and is now almost undetectable which is good news. At this point I wont be needing any further treatment but will continue with the tamoxifen and be regularly monitored.

Not long after my last melanoma scans in early December, I started to experience a strange numb sensation in my earlobe.  Over the Xmas holidays I tried to put this to the back of my mind but I started to have this nagging doubt that something might be wrong. Three years ago when the last tumour was found in the brain I experienced a numb feeling in my mouth and the numb feeling of the ear was on the same side. I had a telephone appt with my Oncologist in mid January and told him about my concerns. He said given my previous experience, this had to be taken seriously and they were going to organize an urgent MRI scan of the brain. My head went into a tailspin as I became convinced that my targeted treatment had stopped working. I have been on my current melanoma treatment for 3 years and I have been fortunate that it has worked for so long for me as on average it works for patients for 12 months before the melanoma develops resistance to the drugs.

My MRI scan was organised for the following Monday and I had my follow up appointment scheduled for the Friday. My doctor asked me if I wanted to come into the hospital for the appointment rather than getting the results on the phone and I decided this would be better. It was a long few days  and although I tried to keep myself occupied I was feeling extremely nervous.  My mind was racing and I already had the next treatment plan set out in my head.  In addition, due to COVID you are not allowed to have partners in the hospital with you so I had to attend the appointment on my own. Friday morning arrived and I put on my big girl pants and headed off to the hospital.  David did come with me but he had to wait outside. Luckily I didn’t have to wait long for my appointment and I was very surprised and relieved to hear that the brain scan looked good and there was no change since the last scan in early December.  My doctor asked if I had noticed that the numbness in the ear lobe had been getting worse and I said no it hadn’t gotten any worse. As I mentioned I do have nerve damage from the previous tumour so its possible that could be the cause or it is unexplained. He said we would monitor it and leave the next scans in as planned. I left the hospital to find David sitting on a bench outside awaiting the news and whilst there were no trips to the Ivy Café Chelsea due to lockdown there was time for a coffee and a big slice of cake en route home.  

 Whilst I am feeling hugely grateful that my melanoma is still under control, the last couple of weeks have really highlighted to me how quickly things can change. You can be lured into a false sense of security feeling well and then strange symptoms appear and you immediately assume there is progression of the disease. It is hard to deal with mentally as you obviously start worrying and thinking the worst. I was also reminded how awful this disease continues to be as a friend I had met through an online support group passed away recently and I couldn’t stop thinking about him and his family.   

Like a lot of people I have found the latest lockdown harder than the previous ones. Of course it is mid winter and I am missing seeing friends and family. I was so excited to be going to Scotland for Xmas so that was really disappointing not to get there as planned. The COVID crisis has now been going on for so long there is a feeling that you are wasting time.  On a positive note I did have my vaccine this week, which was good. Due to my treatment I am classified in the highly vulnerable group (even although I don’t feel highly vulnerable) and I headed down to the local church last Tuesday. I was very impressed by how efficient the whole set up was, the nurse did ask me if I worked for the NHS to which I responded no I am in the clinically vulnerable group. I felt fine after the vaccine except for a sore arm for a couple of days and I should get my 2nd jab within 12 weeks.

I have also signed up to the Royal Marsden/Crick Capture Trial, which is investigating how the coronavirus affects cancer patients and the effects of anticancer treatments such as chemotherapy, immunotherapy and radiotherapy on the course of COVID 19 infection. The aim is to develop better treatments to manage these patients. It involves having additional blood tests when I attend the hospital and completing questionnaires about symptoms and risk factors for COVID 19.  

I have been keeping myself sane going out for early morning walks on Richmond Park, Wimbledon Common and Hyde Park which has been uplifting and it really makes you appreciate the small things in life. Last Monday a beautiful day in London I met my good friend Liz and we walked around Hyde Park, it was stunning and I have to say London looked at its glorious best. I simply cant wait to get back out hiking in the hills and am so hoping that the restrictions are lifted by May so that we can escape to Scotland and revisit the Outer Hebrides.

I am also back onto planning the 2021 Shomelanoma challenges to continue supporting melanoma research at the Royal Marsden. If anything the last month has simply highlighted how much there is still to be done to find effective treatments to help all patients with this awful disease. It may be the middle of winter but please continue to do your monthly skin checks. This video from Melanoma UK is really helpful. https://www.melanomauk.org.uk/news/21-of-melanomas-undiagnosed-during-covid-19

Thanks as always for all of your support and I’ll be back with more Shomelanoma updates next month.

Cancer · Fundraising · Living with Cancer · Melanoma

Its December 2020 – The Forgotten 2nd Cancer

We have arrived in the final month of 2020 and for many of us I am sure we will be glad to see the back of 2020. What a contrast to Nov/Dec 18/19 when I was fortunate to go on the adventures of a lifetime to Argentina and Peru. I have had the photos pop up for the last month to give me a reminder of those amazing trips. Back in reality the latest national lockdown has ended and we are feeling hopeful about a trip to Scotland to see family over Christmas. But first it is December and back to Marsden HQ.

As some of you may recall 4 years ago I discovered that along with melanoma I also had DCIS (precancerous breast cancer) found in my right breast. As if dealing with one cancer wasn’t bad enough there was also a second to contend with. At the time, I had a horror month of a lot of tests and appointments at different hospitals across London with different doctors and several opinions and the situation only improved after all my medical care was all moved to the Royal Marsden. Shortly after this, the melanoma advanced to stage 4 and the precancerous breast cancer was put on the back burner as the melanoma was treated as high priority.  As my Oncologist explained to me its all about managing risks. Last month I received a reminder to go for a mammogram so it was time to revisit and check up on the forgotten 2nd cancer.  

I had a mammogram 10 days ago and a follow up appointment to review the results. My doctor said the mammogram looked very similar to 4 years ago which I took as positive but there was one area of thickening that they wanted to double check so they were sending me for an MRI, ultrasound and biopsy. I have to admit that I left the hospital with my head in a bit of a tailspin.  As I have been so focused on melanoma for the last 3 years and have felt very fortunate that it has been brought under control and for the last 2 years I have been able to live a fairly normal life with minimal side effects from the drugs I am on.  I was feeling that a Pandora’s box had just been opened and the December factor was about to rear its ugly head.

It just happened that last week, my regular melanoma scans were also scheduled so it was a week of almost daily trips to the Marsden. I had an MRI scan of the chest; this was an uncomfortable experience as you are face down breasts in cones and arms over your head as you go into the scanner.  After lying still in that position for half an hour, I came to the conclusion that this made the brain scan seem relaxing and I never thought I would be saying that. On Wednesday, I had my body CT and MRI of the brain plus blood tests which proved to be a challenge as one of the veins in my arm burst.  Feeling stressed, I left the Marsden and headed off for lunch with my good friend Liz and chatting with her helped to calm me down. It is amazing what a bit of lunch and a cup of tea can do for you so big thank you Liz as by the time I returned to get the blood tests done again in the afternoon it was quick and successful and I was able to head home for the day.

On Friday morning it was back to the hospital for an ultrasound and biopsy of the right breast.  I spoke to the doctor and she told me that the MRI scan of the right breast had shown up 2 very tiny lumps which they were going to biopsy.  On the ultrasound they could only see one of the lumps so they did the biopsy and now I have to wait for the results later this month on to see what happens next. On Friday afternoon I was having my regular clinic appointment with my Oncologist to get my latest melanoma scan results and this was making me feel very nervous. I had a quick walk up and down the Kings Road to calm myself down before returning to the hospital. You are not allowed to have partners with you at the hospital just now due to COVID restrictions so there was no rockstar husband by my side. I just had to put the big girls pants on and get on with it and this is sometimes easier said than done. I took big inspiration from the amazing Bowelbabe who has recently been documenting her latest surgery on social media and thought if she can be getting through this on her own without any fuss then I can get on with getting my scan results.

It was good to see my Oncologist and nurse in person (well masked up)  as consultations have all been over the phone due to COVID. But since I was already in the hospital then it made sense for me to get my scan results in person rather than rushing home to wait for a phone call.  I was delighted to hear that the melanoma CT and MRI scans were good and 3 years on from started my targeted drugs Debrafenib and Trametinib my melanoma is under control and I was told as far as the melanoma is concerned we are in the best place possible. I felt a huge relief that at least it was good news. The other positive is that as both of my Doctors are at the Marsden then they will talk to each other if I do need further treatment following the results of the breast biopsy. I left the hospital feeling in a better mood although I do have to admit my delight was slightly tainted by the fact I have to wait for the results of the biopsy and what happens next.

At this point I have to say a big thank you to the teams at the Royal Marsden. I know that in the time of COVID it has been hugely challenging for staff and patients.  I know I am very fortunate to be treated by such wonderful teams and there is a village of them from the security guards on the door to the receptionists, cleaners, radiologists, pharmacists, nurses and doctors everything has been handled efficiently and quickly so whatever is next I know I am in the best hands and that is hugely reassuring.  

Since the last blog when we were just a week away from the Giants Causeway Challenge like all other events it was postponed to next year. It was disappointing as we had been training hard and were looking forward to it. But next year we will be back onto the challenge cause and raising more funds for the team at the Royal Marsden. If you are interested to join us we have a number of challenges planned for 2021 including a team at the Royal Parks Half Marathon, the Giants Causeway Big Hike in July and the Blenheim Triathlon in September.  If you would like to join us or plan your own challenge please let me know and thank you as always for all of your support.

Last month, the Duke of Cambridge laid the foundation stone to mark the building works of the new Royal Marsden Oak Cancer Centre, which will be a state of the art cancer research facility, based at the hospital in Sutton. The new facility will bring together over 400 researchers under the same roof as patients and clinicians in spaces designed to encourage collaboration and to put patients at the heart of research. The building is due to open in 2022 and you can find out more here. https://www.royalmarsden.org/blog/hrh-duke-cambridge-lays-foundation-stone-state-art-cancer-research-facility

In addition, I made my first billboard appearance on one of the hoardings going around the building.  I haven’t seen it yet but ones of the girls at the charity kindly sent me a picture. As the saying goes it’s never too late to make it onto a billboard.

In the meantime, I have been out and about staying active and doing some hikes during lockdown to keep myself sane and stay fit and well preparing for the next adventure. Enjoy the run up to Xmas and I’ll be back soon with more Shomelanoma updates.

Cancer · Fundraising · Living with Cancer · Melanoma

Scanxiety in Service Stations and the next Shomelanoma Challenge

On a high in the Peaks

Since escaping lockdown and the lifting of the shielding restrictions, I’ve loved the freedom of catching up with friends and family over the summer. It has passed all too quickly and after a lovely weekend in the Peak District last month to celebrate my mother in laws 75th birthday it was back to awaiting for the latest scan results. I had a new experience going to the Marsden for my latest scans as they took place in the car park.  I understand from the radiographer that the MRI scanner in the car park will be moving into the main hospital building later in the year but actually having it there was good given all the current COVID restrictions. The experience was efficient as ever but part way through the scan I began to need the loo and lying still became an issue for me.  The radiographer stopped the scan and told me I needed to stop wriggling as they had to repeat a section of the scan. I had to hang on a bit longer and then bolted straight to the nearest loo, memo to self always go to the loo in future before scans.

After a gorgeous weekend in the Peaks where I didn’t have much time to think about scan results, it was back in the car on Monday morning for the return to London.  The consultations with my doctor are currently taking place by phone so David suggested we stop for coffee around the time of my appointment. As my appointment time passed and I was anxiously looking at my watch, David said  “you didn’t expect to be called on time did you?”  And yes the clinic was running late so we stopped at a service station and I was feeling anxious.  It wasn’t helped by the fact there was nowhere to have a private call and there were lots of screaming kids in a playground and I kept needing the loo.  However, after the stress came the relief when the phone rang and I was told that my latest scans were all good. My wonder targeted drugs Debrafenib and Trametinib that I have been taking for 2 yrs 9 months are still working and I am feeling well which is amazing.  I left the service station feeling much happier than when I arrived but receiving scan results in service stations definitely won’t become the new normal.

Team Shomelanoma training around Henley

With the sense of relief that my scans are good comes the worry of the resurgence of COVID cases in the UK.  The thought of returning to shielding is just not something I can bear to think about and of more concern is the continued priority focus on COVID at the expense of other serious health conditions including cancer which are becoming part of the collateral damage of this pandemic.  Charities such as CRUK, Macmillan and Maggies are all making huge cuts to their funding which will impact cancer research, support services and end of life care. The reason I am still here alive and kicking is very much due to cancer research. Only 10 years ago the average prognosis for a stage 4 melanoma patient was just 9 months.  If it wasn’t for cancer research and clinical trials I would not still be here today.

The Royal Marsden cancer charity has also been severely affected by the pandemic and fundraising has dropped by 70%. As you are aware, we have been fundraising to support melanoma research at the Royal Marsden and now more than ever with so many fundraising events cancelled due to COVID it is a critical time to support the charity.  In just under 2 weeks Team Shomelanoma will be taking to the epic coastline of the Giants Causeway in Northern Ireland. In this tough one day challenge we will be trekking a marathon distance along  the  undulating terrain of the Giants Causeway ascending over 1000m along this dramatic coastline. The team have been training and we are so excited to get back out there and continue raising funds to support vital melanoma research to continue developing new treatments to save more lives. https://www.justgiving.com/fundraising/shiona-ramagegiantscauseway

Over the last 5 years impressive progress has been made for the treatment of advanced melanoma with the introduction of immunotherapy and targeted treatment and for many patients who respond to these treatments the outlook is much brighter. However much still needs to be done as many patients (50%) don’t respond to immunotherapy and resistance is often developed to targeted therapy.  In the UK alone we still lose 2500 people every year to melanoma.

Despite the COVID 19 pandemic involving a partial closure of trials at The Royal Marsden the hospital is now in progress of getting trials back up and running as quickly as possible. One of the major programmes the melanoma research team is working on is trying to understand which patients with advanced disease will respond to immunotherapy treatment.  Immunotherapy drugs boost the body’s own immune system to attack cancer cells.

Dr Samra Turajilic – the Melanoma Unit’s Consultant Medical Oncolologist. – has found that a particular type of mutation in melanoma patients, called Frame Shift Mutation responds strongly to these kind of immunotherapy drugs. By analysing many different melanoma datasets over the last year, the Unit now have more information about Frame Shift Mutations.  From this information, the team is now developing a more precise way to stratify patients according to how likely they are to benefit from this kind of immunotherapy.

This research has also presented new approaches to information on locating and targeting cancerous cells.  Being able to identify Frame Shift Mutations may also allow researchers to look for and find cancerous cells in the body which are otherwise difficult to locate. This has great implications for the development of new therapy approaches.

Using techniques such as this to study the samples has enabled the team to make novel observations regarding the way that melanoma spreads to other sites in the body. This has shone a light on how these cancerous cells escape the immune system helping to understand why tumour response to immune therapies in melanoma cancer patients is so diverse.

These preliminary findings have already been presented at numerous scientific meetings and ongoing work in this area will significantly advance the Melanoma Unit’s understanding of how cancer evolves and remains undetected in the immune system.

A big thank you to the melanoma research team for providing this update on the melanoma immunotherapy project. Its thanks to your support and generosity that the Melanoma Unit at the Royal Marsden can continue to be at the forefront of melanoma research improving the lives of patients world wide and I feel very fortunate to be treated at such a wonderful hospital.

Team Shomelanoma has been out training for the next challenge in various locations around the UK and here are a few pics. The conclusion this week after a few steep climbs on the SW Coastal Path was that the legs may not have had enough hill training in preparation for the Giants Causeway. With just under 2 weeks to go we are praying that the lashing storms of the Welsh mountains stay away from the Irish Coast but at the end of October in Northern Ireland we will be preparing for all eventualities. A full update on the Giants Causeway Challenge will be provided in the next blog.

Team Shomelanoma training on Devon’s SW Coastal Path

In the meantime thank you as always for all of your generous support it means the world.  This has been a very difficult year for everyone and I hope that you are all staying safe and I’ll be back with more Shomelanoma Adventures soon. 

Stunning views on Devon’s SW Coastal Path
Fundraising · Uncategorized

The DECEMBER Factor and a HUGE THANK YOU.

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As December arrives with the festive season in full force, I always find myself feeling slightly nervous. This year I was very lucky to spend most of November on an amazing adventure to Peru (more of that later) and while away I found myself thinking less about melanoma. But it was back to reality last week with 2 appointments at Marsden HQ one to see the Dermatologist for my skin check up and the other on Friday to see my Oncologist. At my Friday appointment my Doctor reminded me that I had now been on the targeted drug treatment Debrafenib and Trametinib for 2 years and its good news that it continues to keep my melanoma under control. I did mention that I always feel a bit anxious when December rolls round as I had such horrible news in Dec 2016 and 2017 and I suppose its only natural that these memories rear their ugly head at this time of year. I also became quite obsessed last December with the fact that on average my treatment works for 12 months before the melanoma develops resistance. I have been repeatedly told that this is an average and for some patients it can work for years. I was also interested to know if I was still getting any benefit from the immunotherapy treatment I had or was it just the targeted treatment that was keeping my disease under control. I was told that is the million-dollar question and he didn’t know the answer. There were a number of patients who had both immunotherapy and targeted treatment and their disease was under control and that I should focus on the most important facts, which was that my melanoma is under control and I was feeling well.

Every 6 months I also have a skin check up with the Dermatologist Dr Fearfield and last week she noticed that the moles on my body have faded further and some of them completely disappeared. This is positive and shows the immune system response against the antigens shared by the normal cells in the melnomacytes and the melanoma. This could be caused by the targeted treatment that I am currently on or the immunotherapy treatment I had previously but it is generally seen as a good sign and will continue to be monitored.

Before leaving for Peru, I was at the hospital for my latest scan results, which were good, and also to present Professor Larkin with the big cheque for £50,000 to support the melanoma research projects at the Royal Marsden. This is a result of all of the shomelanoma fundraising efforts and I want to say a HUGE thank you to each and every one of you who have been instrumental in taking part and generously supporting all of the fundraising challenges. When I was hospitalised for 3 weeks in June 2017 for severe side effects from my immunotherapy treatment I had no idea what the future held but decided I wanted to give something back for the outstanding care I have and continue to receive by raising some funds for further melanoma research. There was no plan or target in mind but along the way so many people have contributed by organizing their own events, taking part in wild challenges, dancing for hours at the danceathon, laughed at the comedy night (or waxathon) and given so much to all of these efforts. David and I have enjoyed and had many laughs and a few tears (me not him) doing these challenges and have created many special memories along the way. I feel extremely fortunate to have such fantastic family and friends both near and far and your support has raised this incredible sum of money to support the research of my Oncologist Professor James Larkin and his wonderful melanoma team at the Royal Marsden who are doing a damn fine job keeping me alive. They have also involved me in the decisions of where the funds raised are allocated and are keeping me regularly updated on the immunotherapy research projects and the latest update of was included win my last blog. Whilst hugely impressive progress has been there are still too many patients dying from the disease and there is a long way to go which is why the fundraising to support melanoma research is so important and you will not be surprised to know we are already planning the 2020 challenges and David is already bracing himself.

Here are a few pictures from the latest fundraising efforts, which in mid October saw a big team running the Royal Parks Half Marathon and raising a lot of money. It was a wet muddy day but all of the magnificent eight runners Dave, Matt, Chris, Fraser, Jo, Tony, Christy, Ronan and Thomas did a fine job and raised over £7,000 towards the fundraising. Well done to all, David will be back for round 4 next year the under 2-hour target is there to be broken.

Last weekend the gorgeous Nicki Millward ran the Cayman Islands half marathon in very hot conditions in a speedy 1.57 so huge congratulations to her plus a big thank you to all her family and friends who have generously supported the fundraising efforts. Last Saturday we all got into the Xmas spirit when Liz, Johnny and Clem had an incredible joint birthday/anniversary party for and in lieu of presents had their lovely family and friends donate to the Shomelanoma fundraising. Their incredible generosity helped us reach an overall total over £57K, which is simply incredible.

In early November David and I went to see adventurer Ben Fogle on his tour Tales of the Wilderness at the local Wimbledon Theatre. I have followed Ben’s adventures for the last few years love his TV show “New Lives in the Wild” and his maverick adventurer approach to life. One thing he said in his talk really resonated, as I was about to head off on the latest adventure trip to Peru “Smile, Look up and Dream, Dare, Do”. I thought back to experiencing the horrid side effects when I started the current Dab/Tram treatment, spending New Year 17/18 in A &E fearing I would never again be well enough to leave the UK far less go on adventures to South America and I felt very grateful and fortunate to be well enough to go on the latest adventure and take some of Ben’s maverick adventure attitude with me.

Peru is such a diverse country; we started off in the crazy city of Lima, which made Bangkok look calm. We loved the arty district of Barranca where we stayed in a colonial guesthouse – Second Home of the renowned Peruvian artist Victor Delfin. We then moved onto Arequipa and the stunning sights of the Colca Canyon. From there it was onto staying with a Peruvian family in Lake Titicaca (the highest inland lake in the world at 4000m) on the island of Uros where the lodging was remote and built on an floating island made of reeds with solar power and a compost toilet. It was utterly stunning, had no wifi and felt lovely to be totally away from the craziness of modern life, chilling out on a boat, learning about the Peruvian way of life and watching my favourite blue-beaked duck of lake Titicaca. It was a long way from London. The last night we were reminded of the remote location when a fellow traveller developed a bad eye infection and had to cut short his stay and be taken for medical help. I then read in the Lonely Planet if you do get sick in Lake Titicaca don’t think twice about heading to La Paz which is the Bolivian capital as the medical care in Puno is poor. Fortunately I didn’t have any issues and was happy to move on to Cusco, Machu Picchu and the Sacred Valley where we spent a week exploring, hiking in the mountains and staying at the fabulous Explora Hotel, which exceeded all expectations. Finally we had the last few days in Mancora in the north of Peru chilling out by the beach before the long journey back to reality. It was an incredible trip and I loved every minute. Here are a few pics.

 

With Xmas just over a week away I want to wish you all a happy festive period with all your family and friends and thank you once again for your amazing support. Here’s to a happy and healthy 2020 and to more Shomelanoma adventures … stay tuned.