Two years on and living life to the full with Stage 4 Melanoma

The churning stomach exam nerves returned to SW18 earlier this week after a blissful 6 weeks of no visits to Marsden HQ. After 2 years of going through scanxiety it just never gets any easier and the mind plays games with you, as the scans get closer. I woke up the other morning thinking I had been in an MDT meeting listening as my Doctor discussed my latest results. It took a few minutes for me to realise I hadn’t actually had the scans yet and I was a week too early. The scan date arrived and I kept occupied awaiting the results going furniture shopping in West London, walking 23 miles in the Surrey Hills training for the upcoming Jurassic coast 100km with Team Shomelanoma and catching up on gossip with the gorgeous Denise Callow who was over from my old stomping ground Hong Kong.

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Monday morning arrived and it was good news as Dr Larkin told me the Dab/Tram treatment is continuing to work and the latest scan shows further shrinkage of the tumour in my brain. Of course, I was reminded that it is scan by scan for me and the challenge with the current treatment is the melanoma can develop resistance to the treatment after an average of 10 months. This only reinforces the importance of much needed further research to better understand why resistance develops to the drugs and development of new future treatment options.

In the next 2 weeks, I am looking forward to attending the Melanoma Patients Conference on June 22/23  http://www.melanomapatientconference.co.uk/  This conference will provide information for patients on the current systems of care, treatment access and support for melanoma. It will be attended by patients, carers, leading medical professionals and representatives from Melanoma charities and connected organisations all united in the quest for better outcomes. I am particularly excited as I was due to attend this conference last year but it coincided with me experiencing the adverse side effects to immunotherapy treatment and the start of my 3 week stay at Marsden HQ.

I will also be meeting with Dr Larkin this month to learn more about the current melanoma research projects that require funding and will share more details about this and the melanoma conference in the next blog.

Team Shomelanoma has been very busy in the last few weeks and the fabulous news is the fundraising total has now reached almost 26K which is just amazing news. I want to send a HUGE thank you to each and everyone of you who have been taking part and supporting all of the fundraising activities.

In the last month alone, we have had everything from Melissa Tarver’s extreme Majorca 312 cycle race definitely not for the faint hearted to Chris Lloyd’s Brighton marathon where he smashed his personal best. On the social side Lindsey Graham’s office had a “Wear what you want to work day” and Jennifer Clark hosted a Girls Curry night in Thame, which was lots of fun and the curry’s tasted better than most at any Indian restaurant. Liz Martin and my rock star husband Dave also recently completed the 365 days of the Dryathlon, which also raised more funds. Liz celebrated with a drinks party where she had one too many and Dave had a few glasses of red after winning a golf tournament with his brother. I am still on the teetotal regime and that’s not to say I’ll never drink alcohol again but for now I feel happy with it, my rationale being I am taking strong drugs to control my melanoma and my body is already dealing with enough. Saying that if you had told me a year ago how easy it has been to stop drinking, I wouldn’t have believed you. I have also been reading I am now part of a growing trend of adults who are reducing/abstaining from alcohol (perhaps not for the same reason as me!).

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Next up for Team Shomelanoma is the Jurassic Coast 100km walk on July 21/22. The team are training hard and I am loving being back out hiking in the gorgeous UK countryside plus we’ve been blessed by the recent gorgeous weather. From Skye to the Isle of Harris, North Downs, South Downs to the Chilterns I have been lapping up the fresh air which has been clearing my head, helping me feel well and banishing melanoma to the back of my mind. Saying that my legs were shot this week after 3 big hikes in the one week and I crawled into the physio on Thursday for some relief. I am also back in the gym doing strength training plus David was surprised to walk in last week and see me standing behind the sofa doing the bingo wing workout. I explained I was using tins of tomatoes as weights and he commented that in the grand scheme of my current health issues bingo wings are the least of the problems !!!

We have also been lucky to have an amazing holiday to the Outer Hebrides in Scotland last month. Having been fortunate to travel to many wonderful places around the world this was up there with the best of them. It was peaceful, gorgeous, remote and really everything that we needed. At times, I had to pinch myself that we were actually still in the UK. The unfriendly sound of the tube rattling by in the morning was replaced with being awakened by the sound of the lambs outside the door. Larry the lamb from the Isle of Harris is definitely one of the best looking lambs in the world hence why the Harris Tweed comes from there. There are also some of the most beautiful beaches and when the sun shone you could have believed you were in the Caribbean. My woolly hat gives it away that even although the sun was out it was still pretty cold but it didn’t matter we had an amazing time. As one friend told us there is no such thing as bad weather only the wrong clothing and the bikini was definitely not needed for this holiday. We also spent time in Scotland catching up with a lot of the family and Dave was fortunate to play in the first Brian Oates memorial golf day to raise funds for Crohns and Colitis, which was lots of fun.

Since the return from Scotland summer has arrived in the UK. I started this blog to raise awareness of melanoma through telling my story. May was melanoma awareness month and more still needs to be done to get the message through to the public to protect their skin, check their moles regularly and slap on the sunscreen in all weathers to prevent skin damage. If you want a tan faking it is a far better option than getting baked. For more information on skin safety please refer to Melanoma UK http://www.melanomauk.org.uk/about_melanoma/faqs/

As I approach my 2 year cancerversary on June 15, I continue to be hugely grateful to the medical team at Marsden HQ led by Dr Larkin, CNS Nikki Hunter and all of their teams who continue to look after me so well and are keeping me on this planet, plus my wonderful hubbie David, friends and family who keep me smiling, enjoying every day to the max and are there to pick me up when I am feeling down. Cancer, I have learned is as much of a mental as physical disease.

If you would like to support Team Shomelanoma fundraising organise a curry eve, bake sale, pub quiz or sign up for your own challenge to support then let me know and we can help organise it.

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

More to come soon on the Jurassic Coast 100 KM plus the gorgeous Kirsteen Higgins adventure swimming Loch Lomond coming up in August.

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

https://www.justgiving.com/fundraising/kirsteen-higgins4

Watch this space for more to come from Team Shomelanoma

 

8 thoughts on “Two years on and living life to the full with Stage 4 Melanoma

  1. Looking forward to seeing you both in the summer… Martin will be home with me for 2 weeks in August and I know he has been in contact with Dave to meet up xx

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  2. Another inspirational blog and read Shiona. Well done you!

    Fantastic news on the latest scan results – just brilliant! Great news also on the fund-raising. What an achievement! The Shomelanoma team have been busy.

    Great to see that you’ve been living life to the full in the usual Shiona fashion and wonderful that you got to go on and enjoy a well earned holiday – without having to cancel it! Long may this trend continue. Sending heaps of love 💕

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  3. I’ve been waiting for this blog so am delighted it’s arrived today and all is well – better than well, you have had an amazing year so far and more to come. Well done to you, Dave and all of Team Shomelanoma – what stars they all are. Looking forward to meeting up on July 7th and sending lots of love from us both
    Anne + Fred xxx

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    1. Hi Anne and Fred so looking forward to seeing everyone at the wedding next month and catching up over a few mocktails (well for me, Jon and Fred anyway). Have been loving all the fundraising activities lots of fun and keeping me on the straight and narrow. I’ll be back with another blog soon after the conference and meeting. Lots of love and thanks as always for all your support ShionaXX

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  4. Such good news for you and thank you for yet another inspirational blog. You are amazing and so so is David and all your team. Lots of love Carol xx

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