It’s 5am, round 7 was yesterday. That can only mean one thing… it’s a steroid-powered blog baby!
I’ve been thinking about what to write and I’m going to try and keep the update to how I’m doing to a minimum. I’m doing ok, it’s more of the same and I’m progressively more tired. But we’re 7 rounds in now, which means we have truly broken the back of this beast with only (ONLY! Ha) 5 rounds to go.
Round 6 was just before Christmas and I did a deal with the devil to get me to and through the big day relatively ok, which I then paid for with a good 5-6 days of pure misery evoked by hellacious stomach cramps. I spoke to the consultant earlier in the week who said the Vinblastine element of the AVD cocktail can play havoc with the nerve endings in your bowel. WONDERFUL. Thanks for the warning pal. In any case, I’ve been prescribed some heavy duty Buscopan to counter it when it lands this time round.
*It is worth noting I did have A LOT of turkey over the festive period, but I’m gonna blame the big V-knobhead rather than the greatly underrated meat of kings.
Round 7 started yesterday and I was lucky enough to have a nurse who went through a very similar case of Hodgkin Lymphoma to me when she was 23. She’s now 7 years clear and since retrained to be an oncology nurse. She is now the senior nurse on the ward.
Amazing.
It was incredible to speak to her, compare biopsy scars on our necks and skin blemishes where the first warning signs arose on the onset of the disease. I’ve had such phenomenal support from everyone but this is the first time I’ve spoken to someone who had been through the same thing. I know I could have sought out someone before now but I don’t think I’ve been ready to. Up until relatively recently, I have been working to a process of I’ll be told what I need to know, I don’t need to fill my mind with any further what ifs or worries.
Whilst I’m not about to retrain as an oncology nurse (for one, I got a U at A Level biology which doesn’t feel like an outstanding starting point, and secondly, I couldn’t do it - those nurses are a different breed of human), it has further inspired me to use my experience and platform to help others.
As I begin to see light at the end of the tunnel, I can start to plan what I can do to help both people on a personal level and the charity itself.
So, what does that mean?
I’ve signed up to the closed Facebook Lymphoma Action support group. This has 2500 people in and odds are there’s going to be someone very similar to me getting the same diagnosis today, tomorrow and most days after that.
I’ve requested information regarding the Buddy service that the charity run. It is closed for recruitment now but hopefully I can get on a waiting list or something for when it does open. This service is matched based on experiences and provides an opportunity to phone, email or even meet someone going through this shit show over a course of three months.
Changed my Amazon Smile charity to Lymphoma Action so that every time I buy anything from there, 0.5% of the cost goes to the charity. Amazon make this a little tricky to set up, and Lymphoma Action only got 0.03% (£3,000) of the £12m received by charities in the UK last year. To set up this up on your Amazon, follow these instructions - then re-save it as a bookmark and it'll be always set up! You can set it up on the app too, just go to settings and 'AmazonSmile'.
This then prompted us to find out that most big online retailers (from Sainsbury’s to Waterstones to Boots to JustEat) do a similar percentage of sales to Lymphoma Action through Easy Fundraising. They’ve had a tick over £1,200 through this which to me is a rubbish amount for something that is literally free money. Yes it requires setting up but there is a good app and notifications to help make it as easy as possible for the customer to cash in and get the donation redirected. We did a Sainsbury’s shop earlier in the week and got a pound sent. Pretty much nothing now, but that’s £50 a year. Easy money! A damn sight easier than running a marathon I tell you that!
Talking about the marathon, I’m beginning to think about the grand return to running. My last treatment is due on the 16th March, and allowing a fortnight for recovery and the removal of the PICC line, I am targeting the start of April to gently return to training, six months and eight days before the Chicago Marathon.
Doable.
Obviously, I will have lost a lot of fitness over the previous seven months but I am hopeful that daily walks and my level of fitness before all this will have allowed me to keep a relatively solid base to build from. Whilst it has been difficult to lose running from my life, there are definitely benefits both physical and mental to such an enforced break. I’ve been running 3-5 times a week for eight years (8000 miles!) - my knees and hips are very thankful for some time off! Arguably more important than that, this break has allowed me to wipe clean the monotony and mental block that was beginning to build up. I don’t want to sound like one of those spiritual dudes, but it may well turn in to a blessing to start again, each run being a privilege rather than the chore which it was starting to become.
Also, it doesn’t half put some perspective on things. 20 miles in to a marathon used to SUCK. Well, it doesn’t suck as much as a cancer diagnosis or 12 rounds of chemo!
So that’s good.
At time of writing we have £2,359.50 in the JustGiving account which is fantastic. Thank you all for your Christmas jumper days and donations over the festive period. It means so much to me.
Evie and I (I mean entirely Evie) have started collating products for a raffle that we plan to hold at our first charity event/night that we’re gradually planning. The pipe dream is to hold it around a year after diagnosis, so early September. So keep an eye out for that!
I’m thinking a black tie shindig, with food, drink, karaoke, and a stage (for me to do a speech because it’s been too long!). And to say a hearty fuck off to cancer.
You’re all invited.
P.S. if anyone has any ideas, skill sets or useful contacts that they think might be useful, drop me a line!
So happy New Year, may 2022 be healthy and happy for you all. I’ll see you after round eight!
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