This is just to let you know I’m still fine. Its now 3 years since I was first diagnosed. If you’d like to read from the start, click on the ABOUT link above, where I’ve posted some instructions.
A few people have asked me to write an update, so I thought I’d start with an email I wrote to my surgeons and oncologists in April 2019, 18 months after my surgery:-
I’m sitting at Heathrow station awaiting our train to Devon having spent 3.5 months touring NZ and parts of Australia. I’ve been reflecting on our activities during the last 2 years:
- July, August 2017 chemo and radiotherapy
- September – huge wonderful wedding and continued chemo
- October 2017 – oesophagectomy
- December, January 2018- blasted with chemotherapy, but still attended 3 weddings
- February- skiing in Italy
- March – camped Norfolk and Suffolk
- April, May – toured Andalusia
- June – Nello cycle ride – 60 miles
- July, August- toured France and Spain
- September- delayed honeymoon on Burgh Island
- October- 2 further operations
- November- Vienna
- Dec to March 2019 Bali, New Zealand and Australia
In NZ we climbed Roy’s Peak which is higher than Ben Nevis and walked various high alpine ways. We camped, swam, kayaked, sailed and enjoyed the wines of many vineyards. Best of all we caught up with many many old friends from when we both lived in Australia including my surrogate Mum in Perth who is now 96!
Now we are heading back to Devon to settle down for a while and enjoy our friends and our home.
It just 21 months since my story started. Apart from the occasional dumping syndrome and pulling feelings around my diaphragm, I feel absolutely fine. Who knows what the future holds, but thanks to you all- the surgeons , the anaesthetists, the oncologists and the fantastic nursing staff, I’ve been able to live my rather busy life pretty much to the full throughout the whole process. Being very happy newly weds at this stage in life, Neil and I are looking forward to a long happy life together.
You’ll see I had a blip resulting in 2 further operations in October 2018, after my successful cycle ride, so it caught me completely by surprise.
I’ll keep this short: I started getting severe pains across my abdomen every time I bent over for gardening or cycling or whatever. Eventually I was doubled up in pain so a friend drove me to my doctor. He referred me and I was admitted that day, still doubled up. After various scans, they determined my colon was migrating through the hiatus hernia hole in my diaphragm into my chest. They operated later that week to pull it down, but 2 weeks later they same thing happened so I had a second keyhole operation. This time they sewed a patch over the hole which has worked.
The spanner in the works was my girls trip to Vienna. Could I go? After the first op, it was a definite yes, but the second operation was just 4 days before I travelled. There were some serious discussions between the medics, with some saying GO and some saying NO! So I went, wearing those sexy surgical socks to prevent DVT and I walked up and down the aisle a couple of times. We had a wonderful time and I sent my surgeon a cheeky postcard of Klimt’s ‘The Kiss’ from the Belvedere art museum, sending him a great big kiss for all his staff to see.
Unfortunately, since this and very occasionally, I can suffer extremely painful acid reflux at night because I have no valve stopping my stomach acids from coming back up. The acids fall into my lungs, resulting in a painful cough and wipes me out for a day or two. Fortunately it happens pretty rarely and I just have to accept that this is part of my life, but I must confess it is rather irritating! The adventure photos above were taken after all this so, as you see, it’s not restricting anything we do.
In June 2019, Marc married the lovely Sarah. It was a wonderful wedding starring Neil’s Morris Minor, so here are some photos.
And now we have COVID-19. We were travelling in Sri Lanka when it started in Wuhan. We’d had a wonderful time feeling far away from it, and then went skiing. We were lucky to leave Austria just as the virus spread though Italy and the enormity of it took hold. Back home, we went through a terribly sad period supporting our neighbour whose dear partner had Covid and died. Rather than being alone, she said her goodbyes to him via FaceTime in our garden. It was very distressing not being able to go near her to comfort her and we were extremely cautious around her, not touching anything she touched and staying probably 3m away etc. She must have had Covid but was fully recovered when he died.
At the start of the outbreak, I stayed home while Neil did all the groceries shopping etc, which he does in his rather creative way! My immune system has completely recovered, but I’m probably more compromised than others, due to my age and the acid thing. Whilst acknowledging the desperate sadness around us, we’ve had a very peaceful and, dare I say, enjoyable lockdown. We love each other’s company. Our garden looks amazing and we’ve completed all those niggling DIY jobs which mount up. We’re so lucky to live in this beautiful area and we’ve enjoyed many cycle rides and stunning walks, starting right from our back gate and encountering almost no one. Neil has continued to work 2 days a week as a GP and didn’t see patients for the first 2 months. All consultations were by phone and there have been relatively few cases here in Devon and Somerset. Now we’re out and about again, everyone we see seems to be respecting the social distancing rules. We are all very aware that we are not out of the woods yet, by any means, and continue to be extremely careful.
The future remains a mystery, but for now, both Neil and I are extremely well.