The Ups and Downs of “the glass half full” Shomelanoma

Most people who know me would testify I am a glass half full girl. I get it from my lovely Dad who always tells me “don’t worry about things until they happen” and is positivity personified. I have always tried in the last 18 months since my cancer diagnosis to stay as positive as possible and the most common thing people have said to me is “stay positive” which I can testify is not always easy. One of the challenges I have found is that I immediately think any pain or twinge is related to my cancer. If I have anything worrying me I wait a few days to see if it subsides and then contact my lovely nurse at Marsden HQ. My motto is if in doubt get it checked out. They are amazing and respond quickly telling me to either go to the GP or come and get it checked.

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I have recently developed horrid red dry skin around my eyes, which has been sore and hurting. I put it down to a new anti -aging eye serum I was using to help any wrinkles. This didn’t seem to do the wrinkles any good and I fairly quickly developed an “I’ve been through 12 rounds with Mike Tyson look”. I contacted Marsden HQ with a photo and they organised for me to see the Dermatologist. One of the many side effects of the steroids I have been on is that they make your skin thin. I can’t tell that it’s thin but I do know it is drinking up moisturizer!

I saw the Dermatologist this week and she did my regular skin check of all my many moles, which were ok plus prescribed a special Elidel cream for my dry skin around the eyes. Hopefully this will get rid of the Mike Tyson look before the party season kicks off.

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The second trip to Marsden HQ this week was for my synacthen test to measure how well my adrenal glands are producing their own cortisone and to see if I could come off the steroids. This involved having a blood test then special injection in the bum (rather painful) and half an hour later another blood test. Fortunately my results were good and I have now been allowed to come off the steroids, 5 months on from the “bouncing off the walls” mega pulse of 1000mg to the 5mg of predisone I have been on for the last 6 weeks. Fingers crossed I wont have any adverse reaction without them but all things considered my body has coped pretty well. I am still being weaned off the mycophenolate and that should be completed before Xmas so I may still reach the goal of being drug free by the time I tuck into turkey on Dec 25. I have one more blood test in 2 weeks and then no appointments until Jan.

I recently had the chance to meet some lovely fellow melanoma patients from the online support group where I am a member. We met up for lunch in London and it was really lovely to share experiences and trade stories of what we are all going through. There were plenty of laughs along the way and to any other observer we looked like a bunch of women out for a girly lunch with no wine involved! If anyone had tuned into the discussion it was somewhat different than the normal girly lunch. A number of the ladies are also treated at Marsden HQ by Dr. Larkin and team so there will now be some familiar faces to catch up with in the waiting room on treatment days.

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With my husband David back at work, I have also been doing a bit of work and did discover recently that my brain was somewhat out of “executive gear”. I turned up a couple of weeks ago to give a client presentation and 2 hours later I walked out feeling quite exhausted. It went well but it had been a while since I had been grilled with questions and had to think on the spot to answer them. I enjoyed it and look forward to getting my brain back into mode more often.

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David still manages to have the odd day off and we recently managed to get off to one of our favourite spots West Wittering a couple of weeks ago. It was a stunning cold November day and as we walked along the gorgeous beach (very like New England) I realised how lucky we are to have all these beautiful spots on our doorsteps. I am now getting excited about the New Year trip to Cornwall definitely one of my favourite places in the world. Last weekend we had a freezing trip north of the border to see the family, which was lovely and caught, up with Mum and Dad plus Catriona and family. As it was SO COLD the boots required for this trip were not the new red ones but the black furry snow boots

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I started my shomelanoma blog to raise awareness of melanoma plus keep family and friends up to date. Sadly, I can often receive a cruel reminder of how awful this disease truly is. Earlier this month, one of David’s friends from Hong Kong (a former work colleague and teammate on the football field), Robin, sadly passed away. Robin had uveal melanoma, which develops in the eye and is very rare and challenging to treat. Despite his own issues, Robin was regularly in contact with both David and I throughout the summer often offering advice, motivation, comparing adverse liver experiences and just asking about our general wellbeing. We caught up a couple of times at Marsden HQ whilst Robin was investigating potential further treatment options; he faced his own challenges with much courage and a good deal of humour. Robin was 47. David attended his funeral earlier this week and all our love goes to his lovely wife Bunty and their 2 gorgeous children, Owen and Ava.

This makes both David and I doubly determined to continue to try and help raise funds to help research better treatment options and ultimately to find a cure for this awful disease.

Ten of us have signed up for the Marsden March on Sunday 4 March 2018, which is the annual 14 mile walk between the two Marsden Hospitals, starting in Chelsea and finishing in Sutton. Please let me know if you would like to join us  https://www.royalmarsden.org/support-us/marsden-march

Next up for the shomelanoma fundraising is the Danceathon, which is now confirmed for March 10, 2018 at Kings Place, Kings Cross, London. More details to follow and if you would like to take part please get in touch You may be missing Strictly Come Dancing after Xmas and this could be the perfect tonic to channel your energies and help raise much needed funds for melanoma at RMC

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We also have a shomelanoma team signed up for the 100km Jurassic Coast on July 22, 2018. If you would like to join us you can sign up here.  https://www.jurassiccoastchallenge.com/

Don’t forget the dryathlon – David, Johnny, Liz and myself have almost reached the 8-month mark. Will we make the year? Xmas is going to be challenging this year.

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

If you would like to host your own Bakeathon, Curry Evening, Quiz or undertake a challenge to help the shomelanoma fundraising please get in touch.

Thanks again for all of the support you have given, all your messages have kept me going when times have been tough.

 

One thought on “The Ups and Downs of “the glass half full” Shomelanoma

  1. Hi Shiona,

    So pleased that the Meds continue to fall and fingers crossed for you being drug free by Christmas.

    Sorry to hear the news of your friend Robin.

    Andrew, Dave and I are keen to join you guys on the Marsden March on 4 March.. Let us know what we need to do to sign up.

    I hope you are all getting into the festive spirit albeit a dry one!!!

    We must meet up, if not before Christmas then early in the New year. It would be lovely to have you and David over.

    Kind regards,

    Karina

    Xxx

    Sent from my iPhone

    >

    Like

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