I hope this finds you all keeping well and getting ready for summer.
We met with the oncologist last monday after a frankly terrible couple of weeks, that included projectile vomiting, stomach bugs, terrible pain, increased steroids, lack of sleep and various maladies that were making me a bit nervous about the outcome of my MRI.
So, it didn't come as a huge surprise when when we were told that the tumour had grown significantly. Unfortunately the oncologist let me waffle on, whilst just staring blankly at us. He then left us hanging with an incredibly long awkward silence and then said 'I'm afraid it isn't good news.' He needs to work on the length of his pregnant pauses. They are uncomfortably awkward and long.
The disease area is now at T4 to C7. Anything in the 'C' part of the spine is bad news for me as that controls movements in your hands. I stupidly went crazy with handgrips as I thought exercise would strengthen my hands and arms. Cue 4 days of freaking out as I coudn't play guitar, open a soft drink or hold a cigarette. Thankfully it's only on my right side. It seems to be manageable.
So back to the cancer: chemotherapy is to stop immediately. The oncologist is of the opinion that it is doing me more harm than good and after 2 treament cycles there should have been some signs of the chemo arresting the growth of the little b**tard or even reducing it. So as the disease has progressed aggressively, that clearly hasn't happened. So bye-bye Temozolomide and bye-bye chemo in general.
Again, we asked about Radiotherapy. Too risky apparently and could destroy what cord I have left remaining or even kill me. Ouch. Talk about lots of good options.
So where does that leave us? Up a certain fragrant creek without a paddle it seems. The doctor has replaced my existing steroids, Dexamethasone, with Prednisolone. The side effects seem the same, but this is my current 'treatment'.
The side effects are the heady mix of acne, insomnia, increased appetite, weight gain, impaired skin healing, depression, euphoria (that one has passsed me by), raised intraocular pressure (my eyeballs feel like they are going to pop), confusion, amnesia, irritability, nausea and headaches. Ha ha talk about a personality transplant. Maybe I need one.
In the past I have always been able to hide behind the fact I was at least taking something.
So, when asked, I could reply confidently that I was taking chemo, despite the fact that all the doctors, nurses and Jay and I knew full well that none of it would 'cure' me. I mean at one stage I lost all my hair whilst taking chemotherapy for lung cancer that had an off-chance of doing something. You cannot say I haven't tried everything possible.
Back in 2011, my chemo was lost in the post when we ran away to Africa. My wonderful consultant at the time, Frank Saran, gave me a few months supply of chemo and a friend posted it to Botswana. Of course it was lost/stolen. So I bought the same chemo from a dodgy website registered in Fiji, and used a coat hanger to hang the fluid pack and just did it myself with the help of the only oncologist in Botswana. We have put ourselves through hell because it's the least we deserve, especially Jay.
I promised I'd never say this, but it actually feels appropriate now. I have never stopped fighting this disease. Not for one second.
But now I feeled incredibly 'naked'. It is very scary to realise that this is it and no more can be done. I am trying to make comms with some pioneering doctor who uses Marijuna oils for tumour treatment. He is a hard man to find, but worth a shot. For some reason I can picture him in an Indiana Jones Trilby wondering through a steaming jungle, picking magical elixirs from the bushes, and I greet him and he offers to help me...wow maybe I don't need any magical drugs after all
Update; Indiana's secretary called and it didn't start off too well. I was asked if I had health insurance. Needless to say no insurers come near the terminally ill. I once tried to get travel insurance for a two week holiday and was quoted £25,000.
Honestly, I'd love to just head off to Norfolk and hide from everyone for a few days, but I have pointless appointments coming up. I have had quite a few long 'reviews' where someone taps away furiously at their laptop asking inane questions.
You know, 'Do you use a wheelchair full-time? ' Yes.
Next question - 'Can you climb stairs?' What? Um, No.
'Would you consider your mobility to be restricted.' Holy shuddering. Seriously.
WTF?
On a brighter note, my mother and sister are visiting from Australia fairly soon, so they bring a lot of smiles and laughter to the party. Grant, Chubbs and Cal will visit later in June/July for some more s**ts and giggles. Lots of other family members are heading over at some stage soon too. We also had Den Pegs staying with us recently and managed to use Christmas vouchers for an afternoon tea at the Petersham hotel.
So it will be good to have family around to distract us. I just wish I had a bigger place as we can't accomodate guests comfortably on our couch in the lounge. Our tiny flat will be pumping.
For a long time I have been leaning over the precipice, staring into the abyss, with an incredibly strong thread stopping me from falling to my death. My situation has always been precarious, but this chemo 'thread' has been my illusory safety mechanism even though it was last resort chemo. Monday is the day the thread was cut and yes, I feel like I am falling.
The one thing that keeps me pushing on is my darling wife. She is so strong and we like to think we keep each other going, but truth be told, I'd be lost without her. I am so grateful for everything she does for me and we truly have been lucky to have fallen deeply in love, pretty much right from the beginning.
I remember telling Granny Jon I was dating someone and this would involve going to the films and going for long walks. She nearly fell off her chair as she was so shocked at how seriously I was taking the whole thing, and then when she met Jay, my gran told me in no uncertain terms to make sure not to c**k it up. The rest is history and despite nothing turning out how we wanted it to, I have never been short of her love in my life. So in many ways I am luckier than most.
So again thanks for your messages of support - we really need them. I am struggling to keep up with the sheer volume of messages so please don't get offended I don't reply to you individually.
I go back to the Marsden on the the 4th for a symptom update. So have a drink for us, eat a juicy steak (or choose a bloody plant-based alternative), hug your baby or puppy and just do something that makes you smile.
Better start writing my book 'toot sweet eh?
Lots of love and peace out.
Here's a bit of Monty Python.
Mr. Praline: Never mind that, my lad. I wish to complain about this parrot what I purchased not half an hour ago from this very boutique.
Owner: Oh yes, the, uh, the Norwegian Blue...What's,uh...What's wrong with it?
Mr. Praline: I'll tell you what's wrong with it, my lad. 'E's dead, that's what's wrong with it!
Owner: No, no, 'e's uh,...he's resting.
Mr. Praline: Look, matey, I know a dead parrot when I see one, and I'm looking at one right now.
Owner: No no he's not dead, he's, he's restin'! Remarkable bird, the Norwegian Blue, idn'it, ay? Beautiful plumage!
Mr. Praline: The plumage don't enter into it. It's stone dead.
Owner: Nononono, no, no! 'E's resting!
Mr. Praline: All right then, if he's restin', I'll wake him up! (shouting at the cage) 'Ello, Mister Polly Parrot! I've got a lovely fresh cuttle fish for you if you show...
(owner hits the cage)
Owner: There, he moved!
Mr. Praline: No, he didn't, that was you hitting the cage!
....Does this make me a dead parrot?
