Pre-Tuesday 5th October Meeting
So, it's been a weird old couple of weeks since we last spoke.
After the biopsy, I had a few sore days but nothing too bad. I've also got a really cool scar and I'm even more certain that scars are cool. In the days following, we made sure we got out and walked round the block a few times a day and avoided any lifting (or mowing the lawn - thanks Dad!), whilst keeping on top of my cocktail of painkillers. In fact, not having a shower for FIVE days was the trickiest aspect of the whole thing. Every day felt like I was on a long distant flight somewhere with no sleep and a five minute window to 'freshen up' in the toilets with a flannel before the next leg started. I appreciate they have a purpose in life for removing make-up, skincare, etc., but flannels are crap.
The one thing that showed no signs of improvement was my sleeping. Every night I would fall asleep within minutes of my head hitting the pillow, only to wake up wide awake half an hour or so later. I continued my middle-of-the-night-filmathon and also (very late to the party) stumbled upon The Last Dance documentary about Michael Jordan and the Chicago Bulls. Clearly, Jordan is one of the greatest naturally talented sportsman of all time, but his mentality is off the charts. His ability to turn someone looking at him in slightly the wrong way, or someone else daring to have a better game than him in to a burning fire ball of motivation... well, it is something to keep at the forefront of my mind over these next few weeks and months.
And I am coming for you.
(Not MJ, he would batter me. The thing that shall not be named).
Just when my lack of sleep was beginning to be an issue, I managed to speak to my GP and she prescribed me a week of the extremely fun sounding Zopiclone tablets.
ZOP-I-CLONE!
Now, I've never had sleeping pills before and these were nothing like I expected. They didn't make me feel super drowsy straight after taking them nor did I get asleep that fast, but they seemed to do a good job of keeping me asleep. Which was heaven sent at that point.
I was able to have a good break to Bournemouth with my mates to play golf (falling asleep in pretty much every car journey - the after effects of the Zop I can only assume), before having a sort of last meal out and evening away with Evie in Nottingham before we have to lock down for a bit. So that was all good.
As time has gone by over the last few weeks, it has become harder to keep at bay the negative thoughts that swarm around one's mind in a situation like this. I don't think this was helped by receiving a call from one of the Haematology nurses last Monday saying my results were back and I could have an appointment on the Tuesday "if I wanted". What do you mean if I want? I don't want any of this. If you need me to come in, I will but Jesus, not the sort of situation to be flowery with the language. I pressed back to ensure it wasn't an urgent 'you-must-come-in-asap' sort of message and it seems it wasn't but it hasn't done anything for my headspace.
And that was a week ago!
Since then, it is fair to say my inner chimp has been running riot. This is just a taste of the things I've had swirling through my mind as we get closer to 2pm on Tuesday...
- What if the scan/biopsy shows something far worse than what was initially thought?
- What if I walk in the room and Dr Lala tells me it isn't the one that is 90% treatable?
- What if there is an end of life specialist in the room when we get there?
- What if there is suddenly a time pressure?
- What if my skin issues are actually skin cancer?
- Do I need to sort out a will?
- What if I have to tell my parents it is worse than expected?
- Am I going to lose my hair? Am I going to become a physical shell of the person I am now?
It is probably little surprise I can't sleep again now the Zop's have ran out.
Amidst all this, it is very easy to slip in to a negative mindset. I have thought a few times about writing a furious blog focusing around 'why me?' and how unfair life is, but thankfully I keep coming back to positive side of the coin. There is nothing to be gained by dwelling on it, and there is sure as hell no good in paying any dues to the questions listed above. I'm hopeful that following the meeting with the doctor on Tuesday I can close most, if not all of them down.
Until then I'll just run away from the chimp.
*Worth noting I'm still running four times a week and even more importantly, still feel fine.
Go figure.
Post-Tuesday 5th October Meeting
These appointments are never in the morning, you've always got to sweat it out till mid-afternoon. Lala and friends should take inspiration from my fertility friends in Nottingham - wham, bam, thank you mam and on the road home for 9.30am.
Alas, no. 2pm misery today.
It genuinely doesn't feel a million miles away from the walk to the gallows.
This feeling of complete dread was amplified by being taken in to the appointment by a different doctor, setting off all sorts of alarm bells that he had taken over the treatment because it was something far more serious. Thankfully, it appears there are a number of consultants in the haematology department who rotate between them, and this one, a Dr Millar was picking up the baton today.
He asked me how I was feeling (fine), and whether I had lost my appetite (nope) or lost any weight (nope) to which he seemed a little surprised. He was even more surprised when I told him I was still running without complication, expecting there to be some difficulties breathing, maybe a bit weezy.
The doctor then confirmed that the diagnosis was that of Hodgkin's Lymphoma following the biopsy and the scans. Game on.
He invited us round to see the screen and showed us the results of the PET scan. The purpley-white area on either side of my neck, and then directly below is the troublesome area. This part of the body is called the mediastinum and is sort of just below the neck at the top of the chest. Interestingly, this is what the GP had flagged on the initial X-Ray a while back.
The larger elements in my neck on the left side were presumably the ones taken out during the biopsy, whilst the one further down my chest was referred to as 'bulky' - about 6 or 7cm. This is still considered to be caught early, but the size of the bulky one and the location of it means there is quite a lot of disease that needs to be eradicated. There are four stages of this type of disease, stage one when it is in just one place, stage two when it is in a couple or more locations above or below the diaphragm, stage three is where it is both above and below the diaphragm and stage four is just a disaster zone.
Mine is stage two - but due to the size/location of the bit at the top of my chest, is is being treated like it is at a more aggressive stage. But this is ok - it is still a 90% cure rate, and there is a 75-80% chance of it being cured after the first round of chemo.
I appreciate this sounds like an absolute shit show - but the good people at Lymphoma Action have pulled together the following which explains it better than I have just now.
As we already know, the treatment for this is chemotherapy. Dr Millar was at pains to explain that finding the balance is key between treating it and not over-treating it. There are some shitty long term effects such as heart and lung disease if you go all out and with everything you've got. So that's good to know.
The chemo I will be undergoing is known as ABVD which is a combination of four ridiculous sounding drugs (Adriamycin, Bleomycin, Vinblastine and Dacarbazine) and this will take place bi-weekly over 24 weeks, therefore 12 sessions of treatment.
After four sessions (eight weeks), I will have another PET scan to see if it is still there or not. As I mentioned earlier, there is a 75-80% chance that it will be cured at this point. If it is, the drugs will be dialed down a little till the end to ensure it has completely gone, if it hasn't... well, we'll just turn the volume up.
With any luck, this will start next week.
I will need to have a central PICC line put in to my arm for the duration of the treatment which does not sound fun at all - but it will provide easier access and protect my veins against the strength of the drugs which is probably a good idea. So blood test Monday, this nonsense likely Tuesday and then the first session hopefully Wednesday or Thursday.
So there we are. Thankfully no sinister surprises, but the reality of the situation is becoming clearer by the day. But the whole point of LFG is to front up, and face it head on - so bring it on.
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