By and large, the combined drug combo of Bevuzzzzzzimab-or-something-or-other and Lonsurf has been keeping my tumour in check. Not without incidents though. My constitution being all delicate (like a bomb, not a flower) has meant that every so often I’ve landed up in hospital. Most recently, I started 2025 2nd Jan, with a 17hr stint in A&E needing blood because my HB levels were in my boots and I had a cold. Having a cold is normally a run of the mill event for people with an immune system, however as my immune system is as elusive as the ruddy Scarlet Pimpernel it floored me. A hot toddy wasn’t quite going to cut it. The hospital also has to assume that you, as a cancer patient, have Nutropenic Sepsis, until tests show that you don’t.
I was in hospital again a month or so later after chemo because a routine blood test before the next round of chemo showed that I had:
LOW HB - anemic, so no oxygen in blood, breathless, fatigue.
NO Platelets - not even exaggerating, it was zero. So my blood couldn’t have clotted if my life depended on it. Literally.
LOW Neutrophils - Fucking Phil. No white blood cells, so no immunity.
I got recalled to hospital so they could keep an eye on me and support me (Blood and IV Antibiotics) getting back in shape before I got worse - which was very likely. By the way, I looked absolutely fine! As I walked onto the ward, the nurse asked for my Mum’s name as she assumed she was the one checking in. I have to admit I laughed. Mum, not so impressed.
Oh, and I also had C-diff again. Marvellous. Antibiotics have got rid of the bacteria, however my bowel is still inflamed so I’m still enjoying some of the side effects of that. I don’t want to gross everyone out, so skip ahead if you’re of a sensitive disposition, but I want to be real about these things. It has felt like I’ve been shitting myself insidefuckingout. I have an Ileostomy which my food waste goes through, before it gets to the large intestine. However, because I still have my large intestine, it still generates mucus when inflamed, which needs to exit the body the good old fashioned way. Now I don’t get much warning of when this is going to happen. I get a crippling feeling of someone wringing my insides out like a wet rag, and all of 10 seconds to get to the toilet. I then explode, leaving the bowl looking like a fucking crime scene. Now this can happen between 1 and 5 times a day which isn’t ideal, It’s physically and mentally draining both literally and metaphorically. I’m a big advocate of trying to help myself and I’ve spoken to every health professional I know to try and get back to normal, and I’ve gone round in circles doing that, one agency recommending the next, and the next and the next. My super hero name would be Spirograph Girl, but instead of pretty coloured biro’s it’s crap! Anyway, I digress, the upshot is only one thing will help, which is time, waiting for the inflammation to go down. Probiotics won’t get to the inflamed area. Immodium will bung up my Ileostomy, which is otherwise working well. So, I’m only leaving the house sparodically, knowing where ALL the toilets are at my safe destinations and wearing rubber knickers - not the sexy kind.
I think it goes without saying that I’ve had down days - a lot of them where I’ve looked and felt like utter shit and it has been hard to function. Hard, but not impossible. “We get up, we show up" has become my mantra. Even if it meant that getting up to make a packed lunch was my only reason to get out of bed.
BUT, and I cannot stress this enough… BUT.
I have been present for things I didn’t think I would be. We’ve had laughs, we’ve had lovely family moments. I’ve attended plays, musicals, and pantos. I’ve been to Jack’s concerts and watched him perform with his band - I value that more than any bastarding Oasis reunion that I couldn’t get tickets for and couldn’t guarantee being able to go anyway. And I’ve turned 45! Count those fine lines and grey hairs, you’ve earned every one and I say that’s a blessing. A sign that you are living and not a plastic doll kept in a box, never to be played with. The most treasured and loved toys are not in mint condition.
I had a scan the other day, so we’ll be able to see if anything more untoward is going on. They say the worst thing is waiting for the results. And while I do agree there’s a certain amount of scanxiety, I think my husband would say he feels more anxious when I say things like “I’ve tried a new Mary Berry recipe, but I didn’t have all the ingredients”, or, “I’ve been thinking”, or, “What do you think about such and such”.
It’s very easy to get bogged down in the ‘what ifs’ the ‘maybes’ and let imaginations run riot and quite frankly that is never going to improve your position. It's taken some practice but I try to only deal with the facts. So while I have had a scan, there’s no point worrying about what might be. It will be better to deal with facts once they’re in play. Otherwise you could end up worrying about something twice, worrying about something that hasn’t happened yet or could never happen anyway - complete waste of energy. And don’t forget I said “try”. I don’t always manage to follow my own advice.
Completely changing the subject, some of my family and friends are raising money for a couple of cancer charities.
My cousins James and Johnathan are taking part in the Fellsman Ultra Marathon to raise money for Cancer Research in memory of my Uncle Steve (James’ dad) who had Acute Myloid Leukaemia. Our Granddad used to take part in this race when we were kids, so it has a special place in our hearts for that reason too. Fellsman Justgiving
My friends Alex and Laura are taking part in Active April, an incentive by Bowel Cancer UK to get people moving more and raise money to help save lives and improve the quality of life of everyone affected by bowel cancer. Alex Donation Laura Donation
Please do donate if you can - If I’ve added links, please be amazed that my chemo befuddled mind has managed to work this out and click and donate. If I haven’t added links, their respective pages can be found on my Facebook page.
I’m back on the infusions and chemo today, a reduced dose to try and balance the efficacy of the treatment and quality of life. Hopefully I can stay out of the Royal Glam All Inclusive a little while longer this time.
To end a Haiku.
As always remember to
Please check your poo. Ta.
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