UPDATE - the new normal - immunotherapy = finished kitchen (almost)

 I made a decision to go off sick from work when I was told that there was “a mass” in my sigmoid colon. We were still waiting to hear from the lab to see if it was a new primary or a secondary to my uterine cancer, but I did feel that after working through the previous month of screening procedures, then perhaps it was time to stay at home and take stock........ still feeling a little bit guilty (I think vocational work somehow enhances that guilt gene!) but I’m aware that stress is not great for cancer, and much as I love being a midwife, there are undoubtedly stresses to the job! My colleagues are all so lovely - no-one has expected me to do anything other than stay off work - but I do recognise that another body missing puts a real strain on our already stretched resources. So here’s a public thank you to my community midwives at St Helier - what a fantastic team of women....... (especially to Sam, who sent me SWEETIES, Wonder Woman sweeties!)

My treatment started on Friday 16th October, and as I wrote before, I really didn’t know what to expect - worried about how I would feel physically.... worried about immediacy of any potential side effects...worried about everything really! But, guess what? It was great. The nurses on the team in the Medical Day Unit at The Royal Marsden are just brilliant - all chirpy and calm and appearing to have time for everyone, whatever state of health they’re in, and that’s the surprising fact - there are so many people undergoing chemo or immuno therapies who appear to be totally NORMAL! (I like to include myself in that definition......  just a little reminder to my family and friends 😁 )

When cancer affects you, it’s as if a huge cloud of despair drops down around your head - well - that’s how so many others see it.... but no - you become a member of a VERY exclusive club! 

• You are special. 
• You are vulnerable. 
• You are worthy of care. 
• You are deemed treatable. 
• You are (in my case) an interesting statistic. 

Suddenly - with that diagnosis, (and especially with that secondary diagnosis) the world around you becomes: brighter, more interesting, noisier, more colourful, more worth being a part of! You become aware of your mortality to an extent that you never noticed before. I’ve told loads of friends that I’m lucky. I have been fit and well throughout my entire life - (unlike my brothers who had a debilitating neurological condition, Friedreich’s Ataxia... but who never allowed that to stop any activity). So I feel as if I’ve entered the portals of the ‘home of world leading cancer treatment’ in the best possible health (although I do recognise my advancing age, as Peter is wont to remind me....often). Every time I see a nurse or doctor, I am asked what medication I take - and I confidently say “nothing”.......(  I do however take enough supplements to sink a small boat)! So I didn’t start this treatment programme feeling compromised, or unwell.... they also ask me frequently if I’ve noticed losing weight! Sadly not!

Looking back to mid August now... I recognise that there probably were some telltale signs. I had quite a bit of abdominal ‘discomfort’, which I put down to my diverticulosis...... there was a dull ache in my lower left abdomen/groin area, and on some days I couldn’t stand up straight or take a stride without significant pain. This always went away with some ibuprofen so I didn’t take too much notice...... I had a lot of stomach cramping, and occasionally some diarrhoea (dear Lord, remembering the mackerel pate incident 😱 ). I felt tired and uncomfortable, BUT, when you are in your mid-sixties, you sort of expect to not feel great all the time. I’ve been famous for nodding off to sleep as soon as I sit still for years (some of my midwifery student colleagues will remember this from the turn of the millennium, eh Kelly, Sarah, Karen, Philippa, Kate, Tab, Marianne, Hannah, Sinead??? I think they used to run a book on how soon I’d be snoring when one of our lecturers starting droning on about anatomy, physiology, embryology etc etc etc)

    Anyway- what I’m trying to put into words is this....... after one infusion of Nivolumab (becoming easier to say and spell now as it becomes my friend), I felt ok..... tired, yes. But OK. I’m wondering if it was the adrenaline which caused the fatigue on Day 3 - but actually, I shall blame the flu vaccine, as it was the first time I’ve had it...... The following weekend, before the second infusion, I went dog sitting for the Wheelers in the New Forest, who were celebrating their firstborn’s wedding. We were supposed to be included in the guest list, but sadly, the Quineys were in the corona-cut, but I was chosen for dog sitting Bella! And I was also chief wedding Party mask maker!

 

After the second infusion last Friday, I walked back to Victoria, ( just a bit of retail therapy on the way, ) and set off home trying not to think about the impending exhaustion....... my theory is that, as one of my aforementioned student colleagues Philippa suggested, if you read the potential side effects, you’re definitely going to get them..... all of them. Far better not to know! I kept busy all weekend - my kitchen has been tiled now, thanks to my wonderful old friend Adam, (hockey family are the BEST!)  

and Peter has managed (without too much bad language..... no... take that back.... a LOT of cussing) to fit my magnetic knife rack,

and my utensil rack

 - so I am doing my best to tackle the rest of the painting jobs, before we (correct pronoun? This could be “I”) paint the ceiling, and then wallpaper - and then my kitchen (15 years in the creation), might........just MIGHT.... be finished. Those who know me well will understand this saga. As Peter said “if you wait long enough for anything to happen, it makes the happening even more special”. Peter needs to watch himself, as I have a plethora of knives at hand which just might come in handy....... 

Nuff  said.

So - the Day 3 exhaustion did not hit me. I feel energised. I feel well. I’ve cleared out two bedrooms. (Lou needs to work from home next week, so we needed an office space - she gets my craft room.....)

I’m sleeping ok. And...... drum roll.....the abdominal pain has gone. I’m rather fearful to put this into words, because I don’t want to tempt providence.... but so far.... It’s going well! 😋🙋

So all in all - I feel really happy. Being busy - doing loads of creative stuff, even if lots of that is DIY...) meeting up with old friends, catching up on life........ and a last mention needs to go to another really old friend from the hockey days - thank you Trevor, for driving round the M25 to meet up with Peter and me for lunch (and paying), and giving me two beautiful hand carved spoons, and a simply lovely watercolour of Rye..... old friends really are the best. ❤