Right deep breaths, let’s talk about chemo then eh.
What does chemo feel like? Well, nothing when it goes in, you can’t feel it. For my chemo I had a PICC line - you can see him on my Instagram and my process of insanity to cope with that. You can’t feel it at all, if feels a little cold initially when they do the flush and that’s it. Boring.
I tell you what isn’t boring, the antihistamine they gave me before each chemo of my first 12 lots. That felt bloody fantastic, it was like all my anxieties melted away and I was so chill. A true story, my 2nd ever chemo I was crying my eyes out terrified of feeling like shit again, angry I had to leave my children in the Easter holidays having a lovely time & missing out. My boss actually held my hand from the door to the chair and sat me down because I just absolutely did not want to. I cried for ages, then the antihistamine hit. Baby when I say I didn’t care after that, I 👏🏻 did 👏🏻 not 👏🏻care 👏🏻. So calm. So if you’re having chemo that requires an antihistamine first, enjoy it. They stopped giving it to me when I started the next lot of chemo and I was truly considering saying I was itchy so I’d get it but then decided that was quite insane, so I behaved.
I had to have steroids too, I have nothing to say about steroids other than thanks for what you do but I hate you. (Weight gain, hunger, bloating, ugh !!!!!!!)
I will try to keep this light and funny because I refuse to take this too seriously and become a shell of myself.
My first ‘lot’ of chemo I couldn’t even tell you what it was called, carba something pembro pembra blablabla hard to say whatever & immunotherapy. This isn’t because I’ve forgotten, this is because I decided to be ignorant and didn’t want to know anything about anything, including whatever those drugs were.
So I had chemo every week for 12 weeks. How many breakdowns? I think 2 or 3 good ones, how did I keep them so low? Dark humour and goals. ANYWAY, every 3rd week I’d have chemo & immunotherapy, then the 2 weeks between those it was just chemotherapy. My first ever infusion was the full whack, chemo & immuno. I’m sick of typing that already so I’ll be referring to chemo as different things from now. After this I went home and wondered what had just happened, my hair was on my head and I was…alright? So my cancer busting infusion days were a Wednesday, Thursday came and I was tired, then I spent Friday, Saturday, and Sunday in bed unable to keep my eyes open, popping antisickness tablets. It was rough. SO ROUGH. Now you see why when I felt normal again on the following Tuesday and had to go back for more poison on the Wednesday I was in tears.
Weirdly, I had my 2nd week and was waiting, waiting…waiiiitingggggg for that feeling to come again but it didn’t? I was very fine, normal, but nauseous but barely touched my anticikness pills. Excellent.
After this I did really well throughout the next 10 weeks, I never had days knocked out in bed like the first time again, I had my moments and I was tired but I could handle it. I also had a 10 year old and a 4 month old that didn’t (and still don’t) rest for anyone.
It felt like I was standing at the starting line of a never ending race, so I made goals and milestones. We were renovating our kitchen so it was trashed and hideous, we wrote a countdown on a wall, 12-1, and every week me and my husband would decide on a song and do a video to match that song. It was funny and our nearest and dearest did also look forward to our creative masterpiece of the week. (I made a reel of it, it’s on my Instagram tooooooo)
When I was 7 weeks in, so had 5 weeks left, it got really hard for me emotionally and mentally. Everyone kept saying “wow hasn’t that gone fast”, “yay over half way now!”, “I know it’s hard but you’re nearly there”. When I tell you so many people are lucky I can nod and smile instead of saying what I want to say 😑. BUT also, there is no right thing to say to someone going through it and everyone is different, who really knows what to say to someone going through abnormal cell busting, beating treatment like that? I will say, not everyone who’s had cancer can say the right thing either. I was very lucky to know two legends who beat breast cancer that always said the right thing, but I also knew others who said the worst things.
The way I felt was like this - “what the fuck, what the shit, how have I only got this far, this is never going to end, what’s the fucking point, I hate everything and everyone, I don’t want to do this 5 more times I want it to be over now”. That’s what needed validating, not “wow good girl here’s a treat”.
At this point I accepted the offer for counselling and tried to deal with my emotions and it was the best thing I could’ve done. So just know, even if you refuse all services at first, they’re always there when you’re ready.
Do you notice any changes when you’re having chemotherapy? I did! Not only hair loss, pretend menopause, weight gain blablabla but my actual cancer lump, or as a dear friend called it “the Cance” Hahaahaha, fantastic.
I found my “Cance” when I stopped breast feeding and my boobs shrunk again. I had a big lump near the top of my right breast, I had an icky feeling immediately but stayed calm contacted the doctor blabla breast clinic biopsies horrible shit that’s a different blog. Back to Cance, it was 4.1cm on the CT scan and when they measured it with my “skin” included it was about 5cm. Scary as fuck right that’s huge. Week 3 of chemo I noticed my Cance felt really small, I couldn’t see it when I moved anymore either. Week 4/5 I couldn’t feel it at all. Amazing right? No, see when you’re diagnosed with cancer everything is not amazing, I went into full panic mode and decided that the Cance had buried itself in my chest wall instead, like it had been disturbed by the 300 (chemo and immuno) and packed it’s bags to go and hide somewhere else. When I look back on that I realise I should’ve got counselling a lot sooner hahaha. Anyway, luckily my oncologist checked in every 3 weeks so when I told her the lump was gone and asked “WHERE HAS IT GONE?!” She so, so kindly (considering how ridiculous I sounded) told me this was a good thing and that it wasn’t in my chest wall now, it’s the drugs working. Hilarious. And yes, excellent job. This was also confirmed by my midpoint MRI that showed my boob and pit looked normal, thank you science nerds for this toxic cocktail of success.
My hair loss happened around week 3, I had a shower and my hair was just dropping out In huge clumps it was actually really scary. Then my head got this burning itch all over that was so bad it stung. This was when I decided it had to come off & I had it shaved off. The relief was unbelievable. I didn’t opt for the cold cap, I have my own reasons and each to their own so I don’t know how well it works or what it feels like at all. (If you want to know more about that process, I talk about my hair loss in a previous blog, I think the one about headscarves).
I haven’t been asked about chemo and taste changes and it wasn’t something I’d really been told much about but there’s lots of leaflets with recipes for ice lollies you get given…
Right I was lucky I’d didn’t get a sore mouth, I didn’t get a single ulcer, but my mouth tasted horrible all of the time. Once I got so desperate I ate a whole pack of mints…you don’t need me to tell you that’s a mistake and do not do that ever. I’m a different person because of that, scared to look at a mint.
Everything started tasting so weird, I could cope with mash and strawberry water, just find your thing and be prepared to hate it after chemo. If I see strawberry water ever again it’ll be too soon. My advice would be to not throw away the ice lolly recipes, don’t think mouthwash will help you because it won’t, and don’t eat a whole pack of mints no matter how desperate you get. No, no, no.
12 weeks actually came to an end, it felt like a miracle, I did it?! Ok but listen up, that’s not over. I then went onto the next chemo which I remember is EC - I’m not typing out the name I cannot be bothered alright this isn’t being marked is it?
This was every 3 weeks for 4 cycles. 12 more fucking weeks. I had my first EC the week after my last carbo pembro whatever and it went well, I felt realllllly sick on it but my antisickness tablets were out of this world, those lovely docs know what they’re doing.
Important to know, PICC line dressings have to be changed every 7 days and under an aseptic non touch technique (keep it sterile!!!!). I am a nurse but my husband is not and having me explain how to change a PICC line dressing whilst he’s doing it would’ve been like building flat pack furniture together, a disaster. So the girls in the macmillan unit taught husband and sent us home with packs so I didn’t have to go in every week and I got a break from hospital. Bloody lovely. So if you know someone who could learn and you don’t want to go to hospital all the time they can teach you how to do it! I’d like to take this opportunity to say I was VERY impressed by husband and his PICC line dressing skills, well done xx
You can’t go abroad when you’re on chemo because you’re so high risk of neutropenic sepsis. (Neutrophils are part of your immune system and if you don’t have any of those,
You have no immune system, so if you get an infection you’re going to need to stay in hospital). We went to Cornwall though babyyyy what a lovely place. I felt a bit crap but put it down to the chemo, a few days in I woke up at 4am and knew I was not ok. I took my temperature and it said 38.4. OHHH DEAR. I woke husband up and said oh no I’m sick. I called the AOS number and was of course told to go to my nearest a&e. I don’t want to slate Cornwall but have you ever tried to find an a&e there? It opened at 8am hahahahah, incredible. Anyway long story short I ended up coming home instead of staying there & that’s where I found out my neutrophils were 0.1 (lol) and my white blood cells were something stupid as well. Bye immune system.
How do they treat this? So loads of antibiotics whilst they’re trying to find the cause but also, they have filgastrim injections (these make your body create an immune system), so I had my antibiotics and the injections. What was my source? COVID. How humiliating, 2024 and I was hospitalised with covid. Ugh. Anyway I was really well looked after but just don’t be shocked if chemo winds you up in hospital with a touch of neutropenia and be vigilant of how you feel and if you’re unwell don’t take any chances, call that damn number!!!
Those injections weren’t new to me, I had to have 3 days of injections every week for the first 12 weeks, then on the EC chemo I had to have 7 days of injections after each chemo, I despised them. They make your bones hurt, the ache is like when you have the flu and it’s bloody awful but just try to focus on the fact that you need that immune system so you need those injections and they are not forever. I did cry through a few, I had something like 68 altogether, yikessssss.
Did I ring the bell? No, I ran out of there and went for a “spontaneous coffee” and was greeted by family and friends who got balloons, flowers, and gifts and I cried and cried.
Throughout toxic infusions I tried to be as normal as I could, I went for dinner, I saw friends, I went to the gym (gently), I played with my children. You have to stay as sane as you can and you still have a life. Be safe, be sensible, but be you.
If anyone is about to go through this, is going through this, wants to talk, please know my inbox is open always.
Stay rad & if anyone does any hilarious countdown videos please tag me/send it to me. Cancer and chemotherapy is very serious indeed but if you can’t laugh a little what’s the point?
This is a good opportunity for self reflection too and I’d just like to thank all of the oncology unit staff for putting up with me, hats off to you xxxx
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