Wide awake and happy club

 It’s 2 am, and I’m awake again. 


Last night I was watching the clock at the same time, and went downstairs to make a cup of tea and have a piece of toast. I’m feeling like a shift worker again. Very odd. It might be resulting from my treatment. Who knows? Who cares???

I don’t mind. I don’t mind at all. As I’m off work at the moment - I can have a nap during the daytime if I feel the need........

Yesterday, I may have been slightly anxious (subconsciously), due to my impending Marsden appointment. 

I haven’t, at any point, been beside myself with anxiety - but I will confess to unease and sadness when I was in the midst of the investigations for the bowel tumour. One sort of accepts that it’s out of ones control (check out the subbuteo player reference from previous blogs, if you will!), and the old adage of “life must go on” comes into play. There were a few times when I caught myself saying this - and felt immensely grateful that I was alive enough to to even think the thought!

Well. Here I am at 2 am. Alive (not kicking), but pondering my great good fortune.

I had the PET scan last week. This was on 3rd December - my dear brother Paul’s birthday. Paul would have been 72 if he was still around. A dear soul. Kind, peaceful, accepting of his circumstances, bookish, witty, clever.....so many adjectives to describe him. Anyway- the PET scan was on Paul’s birthday. The plan was to compare this scan with the one done on 7th September, to see if the Nivolumab was working - doing its stuff, teaching my T cells how to work as infantrymen (or infantrywomen, in my case....)

Wednesday 9th December....... I came up to the Marsden in good time. Arrived at the front entrance, used to the routine now. Cheerily bidding a ‘good morning’ to the Janus at the revolving door, accepting my fresh mask (held out towards me in forceps), through the whirligig doors, hands sanitised, questions re COVID symptoms answered in the negative, temperature taken and good behaviour badge applied to my chest, up the stairs to Outpatients. Busy today....... Queued up with my lottery ticket for the phlebotomists. No seats, but happy to stand and people watch. Ticket number 004 on the screen - my turn. In and chatting to the vampires who do such a great job, hardly feeling the “sharp scratch” (why they say this, i just don’t understand!) Bloods taken (FBC, Us and Es, LFTs) and I was free to run off to Sloane Square to do a spot of special shopping. 

I trotted back to the tube- one stop to Sloane Square, and straight in to Peter Jones. I was tasked with finding that “little extra” present for our MSW Julie, who retires from work on this very day. Julie and I started at St Helier at about the same time in 2003, and we’ve always got on so well. We’ve laughed lots over the years. One of my lovely work family - and we are going to miss her greatly. I wanted to get another special present for her to remember us by. We have already purchased a beautiful Lutyens bench for her new garden (she moves next week), and vouchers for gardening goods, and a lovely calligraphy slate to hang on her bench.  After mooching around in the glass, china, and kitchen departments, I found what I thought would be perfect - a lovely oak recipe book stand. Yes, I thought. She can have that in her kitchen and see it every day and be reminded of her work family! Perfect...... just time for Gift wrapping (great service), and a treat for my lunch in the roof top restaurant while I wait.


Yum.Wild mushroom and truffle soup is the Soup of the Day....... I AM WORTH IT....(Denys tells me this all the time - especially when I’m pondering on whether to spend money or not....)

Present purchased, and wrapped, and I’m back to the Marsden for my clinic appointment. I’m due to see Dr Charleen, I am told by the HCA, who takes my BP, weighs me (depressingly same as ever) and I sit and wait. Charleen comes in and says bloods are all good - isn’t it wonderful that I’m tolerating the meds so well?????? Should we book  another scan? “But I had a scan last week” - Oh? Did you??? Let me go and check!

Sitting quietly in the room waiting.....

Waiting (she’s obviously reading the report)

Waiting

And in she skips! “Great news Madeleine! The Nivolumab is working! Would you like a copy of the report? WOULD I???? Yes please .......

We have a discussion about date and times for the ensuing treatment after this Friday - my next scheduled  two week infusion would be on Christmas day. Strangely enough, the Medical Day Unit will be closed (outrageous), so I shall come back on the Tuesday following for bloods, clinic appointment and treatment - all on the same day! That will be a treat. I shall bring my knitting, books to read, the crossword - more than happy to sit it out for the day. 

So that left me dancing out of the hospital, and back to St Helier for Julie’s farewell party. Couldn’t have been any better.


I carried this bit of paper in my hand for the entire journey on public transport back to St Helier. I looked at it closely every few minutes - hardly believing what I was reading. 

NEAR COMPLETE METABOLIC RESPONSE! 

My little infantrywomen T cells have been doing their stuff. 

They have been switched on by the Nivolumab , and have been scurrying around my body, concentrating their assembled efforts on seeking out and destroying the invading cancer cells (Legolas, Aragorn and Gimli versus the Orcs from Lord of the Rings in my media driven imagination)



If anyone has become as fascinated as me with the Immunotherapy revolution- I can recommend a film to watch on Amazon Prime :- “Jim Allison Breakthrough’. This is a great piece, which gently tells the tale of the stubborn and determined harmonica-playing Texan doctor, who watched his mother die from cancer when he was a child, and who refused to give up researching the immune system’s role in defeating cancer and developed the first immunotherapy drug. Jim was awarded the Nobel Prize for medical research two years ago. There are  now many thousands of people throughout the world who would personally like to thank this wonderful man - myself included. 

Back to more humble stuff - me........ By the time I arrived back at work, the report was a wee bit more crumpled than it was when we had started the journey, and I was slightly better able to understand the words........... 

Isn’t it strange that when you’re happy you seem to drift rather than walk, step, tread, plod????

I floated into the community midwives office, said hello to work colleagues who I haven’t seen for a couple of months, and we had our little party to bid dear Julie well 



Good luck to you Julie. This is the start of new things for you.I shall be spending some time with you, helping you get your little garden beautiful. Happy days ahead!

And now?

Goodnight........... 

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