I’ve had a lot of messages the last week asking about the results of my scan on the 6thJuly. It was very much a make or break moment as to whether or not I could continue on my clinical trial of immunotherapy and targeted drug. And before we get into the knitty-gritty of my current situation I’d like to thank each and everyone one of you – friends and strangers alike for your good wishes. I’d also like to apologise for not being able to keep up and reply anymore to all the wonderful messages I’ve received from you. I read them all but if I tried to reply to all I would be spending my last days glued to this laptop. If the power of positive collective thinking could have helped me – I would be in A1 grade health right now, cancer free and flying.
MORE BAD RESULTS
Sadly, as the more perceptive of you will have picked up from my social media posts the last few days, that is not the case. I headed into the Christie for my CT-Scan results last Wednesday full of trepidation. On clinical trials you generally live or die (excuse the pun) by how the results inform the doctors. I knew there hadn’t been masses of improvement in my cancer and the previous week I’d had to have more than 2 litres of fluid drained off my lung due to a pleural effusion. My skin metastasis have been incredibly painful, imagine hundreds of hot little needles threaded under your chest and every so often some cruel fashionista makes another stitch. So I knew I wouldn’t hear my tumours had shrunk but up to a 20% progression and I could stay on the trial and that was all I wanted really. The way immunotherapy works, your immune system can take a while to really get up to speed to I had seen charts online with anything from 3-9 months for initial response.
My first clue all was not well was when I sat down for my regular pre-appointment bloods with the nurse. I immediately clocked she only had 4 vials to fill. There are normally about 10 and different plastic bags to separate them off for phlebotomy and immunology to have a look at. One always needs to go straight on ice. There was no ice, no immunology bag and the nurse said she’d just check we didn’t need more bloods for the trial and came back from the office proclaiming cheerily – ‘no none needed today’. I asked if I was having an ECG, and she told me no, it wasn’t written on her sheet. But I knew from the trial schedule if things were on track then I should have been. Double red flag. Every time I’m in and having my observations done, I have to take a little walk around the corridors to see if my oxygen sats go up after a little exercise. As I passed the waiting room and saw Steve down the corridor I shook my head at him, he could see from my expression, things were not going to go well.
THE GREEN MILE
Then I got put in the consulting room to wait for my doctor. By now feeling like I was walking the medical equivalent of the Green Mile. You always have a little wait for the doctor to appear and we again joked about Schrodinger’s Cat as Steve voiced his wish for her to hurry up and I said I’d almost take that perpetual state of not knowing in that room at that moment as it was better than being told I was off the trial.
But without further delay my doctor arrived… with the trial nurse in tow. Another bad sign, normally it’s just the Doc. The CT-Scan was a page long, so she offered us the edited headlines which we gladly took. First the one bit of good news: it was the first time I’ve had my head scanned and nothing is currently showing in the brain. But it was all downhill from there. The main killer headline was my measurable liver lesion had grown by more than the 20% allowed. Quite significantly more, and that meant I was not allowed to continue on the immunotherapy. They could have left me on the trial but another 2 months of that kind of progression and I’d be in liver failure with no options left. As it turns out the options are kind of thin on the ground anyway but we’ll get on to that later. On top of all that I now have widespread nodal involvement across much of my upper chest and down into the liver region. Before cancer I was barely aware I had lymph nodes and the importance of their job to drain toxins away, now I’m hearing about them in areas of my body I didn’t know existed and still can’t pronounce. One of the nodes is pressing on an area where the liver and gallbladder drain which explains the gradual creeping up of my liver blood test results over the last month. That can be dealt with with a stent should needs be.
Despite all the bad news we’ve still been having fun…
HARD TO BREATHE
But the most problematic area currently are my lungs which are quite frankly a bit of a mess. I haven’t been able to breathe well under any exertion for weeks now. The small pleural effusion – where fluid builds up in the cavity between the lung and ribs due to irritation from malignant cells there – turned into the massive one that 2.3 litres of fluid was drained off two weeks ago. My poor little lung was basically crumpled up like a ball of paper at the top of my chest, I was still doing a bit of work and podcasting and going to all the amazing events my fairy-godmother friends had got me tickets for. One of the doctors told me how us younger and fitter patients tend to mask our symptoms more. Two nights in the Christie and I was pacing the wards like a caged animal waiting for the over-stretched weekend call doctor to come and take out the drain so I could get home to enjoy that sunny Saturday. There were some very poorly people on that ward and I knew I wasn’t one of them because I was desperate to get out. When I don’t care where I’m laying down, that’s when I’ll know I’m ill.
The CT showed the effusion hadn’t yet refilled, which is a very common thing to happen in this situation. But it showed a horrible condition called Lymphangitis is now developing where the lymph fluid isn’t being drained away from the lungs and they are gradually sucking up the remaining fluid like sponges and severely hampering my ability to breathe. There are also areas of inflammation in the lungs which is probably down to the immunotherapy ramping up. They put me on some steroids to try and calm the situation. My reaction – ‘I don’t want to be fat and have a moon-face’!!! Then overnight things deteriorated somewhat as I woke up every hour totally out of breath and just knowing that I needed oxygen. Add to that chills and a high temperature and oxygen sats of 74 on arrival at hospital and I was snatching the steroids out of their hands.
So, I’m home now from another 2 nights in The hotel Christie. I was sent home in an ambulance on oxygen and had to agree to a ‘do not resuscitate order’. I have a bag full of pharmacy drugs that any dealer would be proud of. I am taking steroids by the bucket-load, and swallowing along with them my vain worries about dying fat! An Oxygen machine has been installed at home. I hate it, it is noisy and a sign of the creeping medicalisation of our home that I watched happen when my dad died. It has an incredibly long plastic tube attached to it so I can move around the house and garden. Anytime a toddler, dog or family member treads on it my head gets whipped back like Beyoncé in full swing.
So, the low down is – they had one more trial left for me at the Christie. I have already pre-screened and have the necessary mutation required to take part. But any respiratory issues must be stable. That means not being on oxygen and not having my lungs fill up with fluid again. I managed a full day without extra oxygen yesterday, now I just need my lungs to stay fluid free this week. The doctors said we just ‘need a few days of stability’ so I can sign up. I see them tomorrow, I’ll have my best game face on. Let’s do this.
GALLOWS HUMOUR GETS US THROUGH
I should mention that on the same day I got my bad news, my wonderful friend and fellow You, Me & the Big C podcaster Debs aka Bowelbabe also heard her cancer was back. She is still full of the fight for this as well and we have kept each other, and the rest of the You, Me and the Big C team, on Whatsapp amused with our death GIFs and plans for sponsored goody bags at our joint funeral. We have laughed about beating each other to the finish line in a race neither of us fiercely competitive ladies want to win. But if you don’t laugh you’ll cry and sometimes a GIF of two Grim-reapers chest bumping is just what you need to put a smile on your face!
That feeling when you finally find someone who GETS your death jokes!
I have planned for some time to write a memoir for Freddie, just a book about all those old stories your parents tell you over the years and the advice they give you. I want to leave as much of an imprint of myself around him as possible. This has now given me the impetus to get started on that. As regular readers of my blog will know and as you’ll have garnered if you’ve read this far, I’m never one for brevity! So, it’s going to take a lot of my time up over the next few weeks to get everything down in a coherent and entertaining way for him.
I’ve started my ‘memoir’ for Freddie so he can know me/my take on all the imp moments in my life. Anyone want to publish it so I don’t have to worry about him being short of a copy?#ForFred#AdviceThatLastsALifetime#LeavingAPieceofMeBehind#PublisherAndAgentRequired#Stage4 pic.twitter.com/3FbmczcDNP
— Rachael Bland (@Rachael_Hodges) July 16, 2018
I can’t thank you enough for all your support, I’ve been truly overwhelmed. Keep your positive affirmations coming my way and here’s hoping I get another shot at kicking this cancer where it hurts.