Much as the Scottish rugby team is having a rollercoaster start to this year’s Six Nations championship, I seem to be having a similar experience with my melanoma. After the drama of New Year trips to A and E, I settled back into Jan life in London. We had a January “let’s get the finances in order” trip from the financial advisor to discuss consolidating pensions. I have to admit that as I sat on the sofa and listened about different options and how much money a year we wanted in retirement, I couldn’t help thinking how the immediate priority was funding my staying alive, fashion, going out and holiday fund for the next 3 months far less worrying about 20 years time given my current situation
The side effects of the latest drugs calmed down and there haven’t been anymore fevers. However a couple of weeks ago as I was heading into Marsden HQ for a check up with the Dermatologist I noticed red patches had started appearing at the bottom of my legs. These were checked out and steroid cream prescribed to deal with them. A few days later whilst doing a downward dog in my yoga class I felt my ankle sore and a bit swollen. I contacted Marsden HQ to let them know and was informed to stop taking the drugs immediately and come in for an ECG (a test to check out your heart function) as swelling in the legs is again a side effect of the drugs and can be an early sign of associated heart issues.
The ECG ultrasound was an interesting experience with a male nurse who had definitely got out of bed the wrong side that morning and me decked out in my hospital gown with my chest covered in some lovely jelly substance (not the eating variety). I have got to the point now where these things just don’t bother me but I did think if I was being photographed now it would make for amusing viewing. I got the results later that day and was relieved to learn that my heart was functioning normally but was told not to go back on the drugs until the swelling had gone down.
The last month has also brought home how difficult it is to plan ahead when living as a stage 4 cancer patient. We had been due to travel to Yorkshire for a family weekend but after enjoying the opening night at our friend, Tony’s, latest venture – Small Beer in Crouch End – which was cut short due to me experiencing a dizzy spell, we took the decision to cancel that and stay at home for a relaxing weekend instead. Two weeks prior to this we had been due to go ski-ing with good friends in Morzine but after the A and E trip at New Year, the thought of being stuck in a ski resort needing to get to the closest hospital in Grenoble was not attractive so again we decided to cancel it. I hated having to do this but the reality is planning and paying for holidays months in advance just doesn’t make any sense, it is now scan by scan and book at the last minute. I won’t even enter the minefield of travel insurance given my current situation.
As I approached my upcoming scans to see if the Dab/Tram was working I started to feel a bit concerned. Firstly my mouth was still experiencing some numbness on the left side and I had started to notice some twinges around my abdomen just below my ribs and these seemed to becoming more frequent. This was making me very anxious and I have to admit the run up to these scans has been the worst yet. I tried to stay calm and took myself off to meet up with my gorgeous friend Jen for lunch and a day in town. We had fun catching up on gossip and treated ourselves to a bit of retail therapy which took my mind off things for a while plus a new dress and funky boots were purchased to wear for David’s birthday dinner.
I had got to the stage whereby I had self-diagnosed and convinced myself of the likely next treatment … “Gamma knife and more immunotherapy” I advised David. In his calm and more rational approach, David responded “Let’s await the results of the scans rather than hypothesize on your self-diagnosis.”
When scan day arrived last Thursday I was back to feeling anxious and it was not helped as it took 6 goes for the nurses to get me canulated for the CT and MRI scan. The cannula is used to inject the radioactive dye contrast that is used to show up any cancer on the scan. Once the scans were done there was a long weekend of waiting for results. Yoga, walks across Wimbledon common, watching Scotland playing rugby helped me stay occupied (watching Scotland at any sport is always stressful) fortunately they played well against France and it was a brilliant game. I didn’t ‘sleep on Sunday night tossing and turning all night and woke up feeling exhausted and nervous on Monday morning. I had convinced myself the latest drug treatment was not working and my mind was in overdrive. Arriving at Marsden HQ fortunately I didn’t have long to wait to get into see the doctor.
I almost passed out with delight and relief when I was told the scan results were good and my brain tumour had reduced by approximately 50% plus my body remained clear.
As I have mentioned in previous blog posts I usually have a pretty good gut reaction on these meetings but I was totally wrong on this occasion. David and I left Marsden HQ with a big smile on our faces and headed to the favourite Ivy Café Chelsea to celebrate with a gorgeous breakfast. I know I have not been the easiest to live with over the past few days so a HUGE thank you to my rock star husband David and best friends Liz and Jen who help get me through the build up to these scans. Jen sent me a gorgeous card on Friday and this made me smile when I was not feeling the best.
Fingers crossed that these drugs continue to be effective and in the meantime I continue to owe a HUGE thank you to the wonderful medical team at Marsden HQ who are currently keeping me on this planet and enjoying life to the full.
The upcoming Shomelanoma Danceathon is now just over 3 weeks away to raise money for the melanoma team at Marsden HQ. There is a fantastic fun-filled day planned with non-stop dance classics. The venue is the glamorous Rotunda, Kings Place, Kings Cross, London and the music will be pumping for 12 hours to keep us entertained. Jonny Awsum who many of you will remember from the comedy night will be taking to the mike for the kid’s hour and we have international DJs spinning the music. We would love you to join the fun, full details and tickets available here bit.ly/2ESnNLc . You can also support the team dancing for 12 hours
Before that, we have a team doing the Marsden March on Sunday 4th March, which is full but you can join us on the Jurassic Coast Walk on 22/23 July, full details available here.
The Marsden March is now full but you can join us on the Jurassic Coast Walk on 21/22 July, full details available here.
My gorgeous friend Melissa Tarver is taking on one of the toughest amateur cycling challenges – Mallorca 312 which Cyclist magazine says “Is as tough as it gets” to raise money for the melanoma team at Marsden HQ. Full details of her challenge are here.
Another gorgeous friend Kirsteen Higgins is undertaking a crazy challenge and will be swimming Loch Lomond in August. Most of you will know swimming in Scotland is more associated with the Arctic than the Mediterranean so this is one mean challenge.
If you would like to organise a curry eve, bake sale, pub quiz or sign up for your own challenge to support the shomelanoma team fundraising let me know and we can help organise it.
Now we are looking forward to celebrating David’s 45th birthday this weekend, stay tuned for more adventures on the shomelanoma rollercoaster.