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  • Lewis

Part Nineteen: The coup d’état is coming

Updated: Sep 26, 2020

Cycle two starts calmly. Room one of Ward A12 not only comes with five bars of 4G but a view which incorporates a vast green serenity of grass and trees complete with two fascinating sculpted wind turbines. 

It’s odd. When things aren’t going well, and the world slows down. The fear of mortality hangs over your head. You start to appreciate the true beauty that is all around us. 

This is the business cycle. A PET scan upon completion will determine if the IVE regime has induced remission or if there is a change of plan required. A change of plan would not be unusual; however, I’d instead not go there. 

However, again like clockwork, after four hours, the tranquillity was shattered with the labour intensive upbringing of the contents of my stomach. With an again pretty uneventful week following leading to my eventual discharge on the Saturday morning. The most notable excitement from the proceedings was not a prisoner this time, but my front-row seat at 1 am to listen to some poor sod getting a catheter. The following week I continued to get stronger and got myself back to work. 

The following Saturday night brought an ever-rising temperature and heart rate. Eventually biting the bullet and being admitted at 3 am on the Sunday morning. The initial observations they took showed a heart rate of 246. I thought I was about to crock it there and then. Christ, it doesn’t even make it that high on the infamous FIFA fitness test! Thankfully, my body settled down and played ball for a change - resulting in me being discharged on Sunday, in the nick of time to enjoy a socially distanced Nando’s with Bert.

A week last Monday, I had a CT scan at the Queen Elizabeth in Glasgow, followed by the all-important PET scan on the Thursday. Now, I still have a lump my neck. It measures 2.1x1.3cm. A marked decrease in the whopping 7cm+ it was before the initiation of chemotherapy. Hodgkin’s can leave vast amounts of scar tissue so the hope remained that it would be just that, but the usual voice on the end of the phone shattered that hope today. 

The small mass that is there still “lights up” showing active disease; therefore, the IVE has not provided the remission required to afford me the ability to go to transplant just yet. Quite frustrating and highlights just how stubborn disease is. 

My PET scan showing the lymph node causing all the issues. Also shows harmless uptake in my bones from white blood cell boosters.

Due to its stubbornness, I have decided that the best route for me is the route of the ANIMATE clinical study that I talked about earlier. The drug that is used - nivolumab, falls into the category of immunotherapy rather than chemotherapy. Hopefully, both returning my quality of life over the next two months and providing a remission and subsequently a pathway to transplant. I understand this is complicated so as usual, I will create another post that explains more about nivolumab, clinical trials and the benefits of transplant.

Things are going to start to move quite quickly again over the next few weeks with the beginning of the trial, all the relevant tests and the harvesting of my stem cells for transplant, so I will keep you all posted. 

Anyway as always I will keep the faith, the coup d’état is coming. 

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