Whew, it has been a few weeks huh? Sorry for not updating sooner but, in all honesty, I often haven’t been in the right headspace to do so and, when I might have been, my body and my general energy levels have let me down.
I’ve also felt pressure to make every post meaningful in some way, which I now realise is daft. I don’t have to provide pearls of wisdom nor deep insights every time I click ‘post’ – that’s not what this blog is about. It’s a frank look at every day life living with a shitty disease. So bollocks to putting silly expectations on myself.
Hopefully a relatively short update today just to bring everyone up to speed and to get back into the swing of things.
Last time I posted I was in the middle of round 3 of chemo. I, of course, got Neutropenic Sepsis on day 12 (like clockwork each round!) and ended up having another hospital stay. It was short though, and to be honest the routine is so familiar now that it just feels like part of the process.
I’m now on day eight of round 4! That means tomorrow might (everything crossed for me please) be my last day of infusion chemotherapy.
Yes, it kind of sucks that I have to go for it on Christmas Eve, but I’m actually a little bit excited to visit the chemo ward on such a festive day – the place is strangely a lot of fun on a normal day, so I can’t imagine what it’ll be like tomorrow.
My lovely Dad will, of course, be right by my side for the whole thing and we’re even spending today making mini ginger and orange cakes for the other patients and the staff of the ward (top tip if you’re wanting to make baked goods for a cancer friend – ginger and citrus flavours are great for chemo mouth and nausea!).
Mum is busy prepping their flat (which they’ve rented in Bath on a short term lease so they can be near me, the absolute angels) for Christmas, which we are celebrating together with Barney’s family. I’m really excited about it – everything has taken on a new importance to me, and I want to write about that at length in a separate post BUT this tweet sums it up quite nicely for me at the moment:
Bumps in the Road
Of course, this is cancer so nothing runs completely smoothly. As well as round 4 of chemotherapy kicking my ass more so than usual in terms of fatigue and other side effects, we had some potentially worrying news.
During my last stint as an in-patient with Neutropenic Sepsis, I had an MRI to investigate some groin and right hip pain I was experiencing. Red flags already, because much of the cancer is/was/whatever in the right hip, and had ‘eaten’ away a lot of my bone in that area.
Anyway, the MRI showed an ‘anomaly’, and the medical experts just can’t seem to agree on what it is. My oncologist and a radiologist believe it’s an oedema, which is a build-up of fluid in the body that causes the affected tissue to become swollen. Not too scary, and in fact potentially a sign of healing in that are. My orthopaedic doctor thinks it’s a sign of the cancer spreading. Too scary to contemplate right now.
The fact of the matter is that there’s no point getting my granny knickers in a twist until I have my (maybe) final PET-CT scan on the 10th of January, because that will hopefully reveal all. It is, like always, just a case of waiting, hoping and trying not to pull my last three eyelashes out with the frustration of not knowing.
Other Bits and Bobs
Mobility & Weight: It has been so frustrating having mobility at an all time low, and the scales at an all time high. Thanks to my bone damage I’m not allowed to do any impact exercise at all (even walking for more than 2 minutes results in pain) and thanks to my lovely PICC line I can’t even do the recommended exercise for someone with my type of damage; swimming. Once it’s out of my arm (hopefully by the end of January if all goes to plan) then I’m going to basically live at the pool, I think. Right now I feel like an overweight, hairless thumb.
Mental Health: There is so, so much I could write about the state of my mind right now, but I’ll save that for a lengthier post. In short, I’ve signed up to attend sessions with a hospital psychiatrist to help with navigating all of the current and future feelings that cancer is throwing my way. Everything from loathing my own body and looking for comfort at the back of the fridge (thanks prednisone steroids, I hate you so much) through to fear of chemo being over (yes, you read that correctly).
I’m also feeling hugely guilty at the moment because so many people have sent me such wonderful cards, letters and gifts, and I’ve just not had the energy nor the focus to write back to many people. So, if you’re one of those whom I’ve not been able to get back to, please don’t take it personally; cancer is just making me a bit shit, but I am so so grateful for your love and support. It makes all the difference to my mood and to my ability to face the day.
Socialising: Closely tied in to mental health is the fact that I’m spending most of my time in a neutropenic purgatory, wherein everyone and everything is a potential infection risk to my depleted (and often non-existent) immune system. It can get really lonely, if I’m honest.
However, I do have a few amazing lifelines.
Firstly, my family. Mum, Dad, Barney, Tracie, Nick and Finn are honestly doing their best in their different ways to stop me from going completely mad whilst I’m stuck in the house. I’m grateful every damn day for how much love and support I’ve got.
Secondly, my amazing group of friends. Earlier this month they rocked up to mine bearing yummy goodies, a whole non-alcoholic cocktail bar (oh my GOD Seedlip is so good. If you’re not drinking alcohol at the moment, do yourself a favour and get some with a good bottle of tonic water) and a lot of love. We played games, laughed and just…felt normal. It was honestly magical to forget about cancer for a couple of hours thanks to this lot.
Thirdly, it goes without saying that the ‘Badass Babes’ Whatsapp group I’m in, which has now grown to 14 amazing cancer warrior women, is a priceless help. It’s true that, no matter how good their intentions, people who have not personally experienced cancer can never fully understand what you’re going through as you fight it. That’s why it is vitally important, in my opinion, to have a group you can turn to that have been where you’ve been or are currently facing the sam trials. What I particularly love about these gals is the openness and dark humour we all thrive on.
Finally, I’ve been really getting a lot of fulfilment from crafts. Who knew that underneath this workaholic campaigner there was someone who adored working with their (admittedly damaged thanks to peripheral neuropathy) hands? I’m spending way too much of my very limited finances at Hobbycraft at the moment, and enjoying all things polymer clay. I am even planning on opening an Etsy shop for my jewellery soon – so watch this space!
Anyway, that’s enough for now. I think you’re mostly up to speed, and I’m really going to try to get back into the swing of regular updates so that they don’t all end up sporadic and lengthy like this one.
Drop me a note to say hi, okay? Happy Holidays, Merry Christmas, and have a great New Year!