I was diagnosed with Oesophageal Cancer on 12th April 2017, and I’ve been through 9 weeks Pre Op Chemo, an Oesophagectomy (Ivor Lewis), and just under 9 weeks Post Op Chemo. I’m really pleased to say that I made it – CANCER FREE (as of 8th February 2018)!
Latest update (September 2019) : I had a scan in July, which on the whole was ‘ok’ but they found fluid on my lung which is diagnosed a pleural effusion – this is not unusual, but it’s not common. I had to wait another week for the result, and I’m pleased to say the latest diagnosis is ‘there was no evidence of pleural thickening and no evidence of recurrence in the chest or anywhere else. The cytology was negative and I’ll have my next scan in December/January.
I’ve written this as a simple overview of what I’ve been through so far. It’s not comprehensive in anyway but maybe useful for those who have unfortunately been given the same challenge and journey. Feel free to ask me any questions at any time. Hope it helps 😉
( Make sure to click ‘OLDER POSTS’ to view to complete A-Z
A is for Attitude.…whilst its incredibly tough and daunting its your fight to prepare for…..try your best to keep positive you can beat this…some people do !
Chemo & ‘Cold’ Cap…….brrr f’ that…., it’s a device/ cap that’s used to prevent hair loss…brilliant if you can bear it…but not for me..soooo cold.
As for the Chemo , mine was ECX for 9 weeks both pre and post operation. I was lucky enough to lose only 50% of my hair and didnt miss any work days in the first cycle. The ECX Chemo was given via a ‘Portacath’ – a device thats been inserted in my upper left chest area (small operation procedure ) . You don’t feel a thing when the liquids are dripped in …even after 9 hours.
Side Effects… I was lucky enough not to suffer from sickness throught my chemotherapy journey, although I did feel queasy at times.
The worst reaction for me is what is known as ‘Hand and Foot Syndrome’, this made me stop my Post Op Chemo a little early, in week 8 of 9, as had my toughest side effects concerning my hands between Christmas and New Year. Udder Cream managed to soothe these side effects slightly.
Chemo isn’t a lonely treatment, my Wife and Daughter came to my infusions- here is a photo of my Daughter and I at the end of a 9 hour infusion.
Friends, Family and support network. All so important and you really find out who your true friends are 🙂
Food…when returned home from my operation, I was given a food guide by the nutritionist that detailed what food I could try week by week. We also decided keeping a Food Diary was a practical way of noticing if there were any foods which caused any issues.
G is for GERD, for many I believe this is where the issues may start…Gastroesophageal Reflux Disease (GERD) … Gastroesophageal reflux disease, or GERD, is a digestive disorder that affects the lower esophageal sphincter (LES), the ring of muscle between the esophagus and stomach. Over time I believe this can lead to a condition called Barretts Esophageus that if undetected can in time for some turn cancerous if not monitored….
J- tube...Jejunostomy is the surgical creation of an opening (stoma) through the skin at the front of the abdomen and the wall of the jejunum (part of the small intestine). It can be performed either endoscopically, or with formal surgery….post op and once home you need to ensure a regular intake of nutirents. So I currently have one tube going staight into my stomach.
There’s a portable machine that I (my Wife) plugs me into each evening and this pumps in 1 litre of liquids over 11 ish hours overnight. Totally painless and very necessary as part of your recovery process.
How to wear your J-Tube…when I first came home from hospital I was using tape to hold the tube in place, this caused my skin to be a little sore, and was not totally practical. Now I wear it on a lanyard, in my opinion this is the most comfortable and practical way to wear it!
Lansoprazole. More than likely if not on before the op you maybe afterwards. I’m now on ‘Fast tabs’ that dissolve under your tongue. 1 per day to keep reflux away 🙂
NHS rocks !! Having been my initial concern with a 10 hour op followed by Intensive care….I could not have been more impressed. The staff at the ICU unit of the Royal Surrey under Matron Sue Herson could not have been more professional or attentive. Fully communicative , great team and all on top of their game.
Oncology. I was very fortunate to be referred to Mr Seb Cummings at Guildford. Straight talking , articulate and professional. Great team of support nurses for the Infusion days. (mine was a 9 week course consisting of 3 cycles of ECX Chemo starting with an Infusion day (9 hours) at the hospital followed by 20 days of tablets….FYI on the infusion days I’d pee approx 5 litres and gain circa 4-5 kg of weight (my weight 102 kg).