A week away, lemon curd, great friends.......... and the discovery that I am indeed a Unique and Rare Anomaly

 Firstly, thank you to everyone who has contacted me with good wishes and anxious questions. I am very moved by the care and love shown by friends and relatives alike. Especially to those of you who are currently going through your own personal health battles.....

This week I am away in Hastings with my three colleagues: Helen, Susan and Joyce.

We booked to stay in a lovely little Airbnb supposedly for the RCM conference. We were supposed to be in Wales at the International Conference Centre, but when the conference became virtual, we decided that we needed to go away anyway and access the conference remotely. So here we are in Ore, on the eastward side of Hastings, and we have listened to some of the conference speakers (honest), but also scrambled down the hillside to the seashore, which has a famed naturist beach, and we’ve spent a happy time in the hot tub too and dealt with a power cut as well!

Isn’t it great to spend time with colleagues who are also friends, and who you know will have your back should you need propping up? 

Our trip has been booked for some time now - before my world was tilted somewhat with this new health warning......... After the delightful experiencing of the colonoscopy which I related in my last blog, I was waiting for a new referral to a medical oncologist, because they felt that whatever they could see in the sigmoid colon needed the close attention of a gastoenterologist, and I’ve had a telephone report telling me that my new consultant overseeing my care would be probably creating a chemotherapeutic plan for me.....

At this news, I decided that I might be better off not going to work right now, so I arranged to go off sick - had an interesting time trying to get my GP to write a sick note - she wasn’t keen... she also didn’t bother to read my medical history prior to calling me........ shameful behaviour, which I shan’t dwell on.

Packing to come away, I made a big lasagne, and also some lemon curd to bring to the cottage - I bloody love lemon curd -

but I suddenly realised that this was the first time I’d dared tried  tasting anything lemon flavoured since the bowel prep of 2 weeks ago! Maybe I would never be able to eat lemon curd again? (I am happy to report that the enjoyment of lemon curd has not been ruined by the lemon sherbet laxative........ 👍👍)

My appointment to meet consultant no 3. Mr Ian Chau, was scheduled for midweek through our Hastings week, and Susan kindly volunteered to take me back up to Sutton for it. So today we went down to Pett Level, and wandered along the beach while Helen did wednesday’s week 5 run (Couch to 5K). I had forgotten just how glorious the coastline is here - unless you are an avid swimmer... (you need to walk about 2 miles to get into deep enough water to swim...... my cousins and I well remember this from childhood summer holidays....) 

The weather was kind to us and we spent a happy hour on the beach. When we got back we grabbed some breakfast and Susan and I toiled back up the A21 for my 2 pm appointment. 

At 4 pm😕, I was actually seen (another delay due to the consultant being called upstairs to the ward - vaguely reminiscent of my cancelled hysterectomy 2 years ago, when the robot was needed by someone in dire need). 

And this is where it gets complicated! The lovely American registrar, Mo, who was filling in while Mr Chau was upstairs, came to chat to me and established that I did indeed understood my medical status to date...... I did say that I struggled with understanding the genetic complexities of my particular case - and  he agreed that it was mind boggling. At one point I tapped my temples and said “full up to here....”

So..... my endometrial cancer has been defined as a mismatch repair cancer, and it seems that the bowel mass biopsies also display some type of genetic mismatch also, and not a primary bowel cancer. At this point in the conversation, Mr Chau came back downstairs and hastened to join in the conversation. We established that they think that this new cancer is therefore metastatic, which is of course what I was dreading. BUT - because they think that the cancer is another mismatch repair (you’ll have to google, I can’t explain) then, in that case, I am a perfect candidate for immunotherapy. I asked Ian (Mr Chau - first name terms due to lateness of appointment)  at this point if he was delivering ‘a shit sandwich’ - most readers will recognise that this involves: 1. Good news, 2. Bad news and then 3. Good news.......????

Mr Chau laughed. 

Registrar Mo was confused...... well. He is American..... probably calls it a sidewalk (thank you to Matt Lucas for that...)

For those of you who, like me, don’t really know the difference between chemo and immuno therapy, the idiot’s guide goes something like this: Chemo attacks the cancer cells directly, but Immuno tricks your immune system to attack the cancer itself........ sounds great. So apparently I am a prime candidate for this. It might not work. It might give me some side effects (diarrhoea being one - I haven’t researched the others yet - but I’m obviously doomed to be documenting my pooh stories in the future 💩💩💩💩)

Apparently, the treatment consists of an infusion which lasts about an hour, either fortnightly, or 4 weekly. Well. That sounds great. 

But the best bit of news????? This immunotherapy drug, NIVOLUMAB, whch is also known as a checkpoint inhibitor, and is fearsomely expensive.....was in early August, this year, approved for the treatment of my type of cancer, due to COVID. I don’t quite understand why, but thank you 🦠 virus, if this had happened to me before then, I wouldn’t be able to have this treatment........

I’m feeling positive. I’m feeling happy. I plan to live my very best life. Live well - eat well - enjoy all the things I like best. 

And now - our Chinese takeaway is about to be delivered,  and the Great British Bake off is on some weird channel! SO I’ll end this episode right now........