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Cancer

Find advice & support if you or someone you know has been diagnosed with cancer

Gentle support thread for the chemo rollercoaster

5 replies

Temporarynameforthisone · 29/08/2024 09:14

Hello 😊

I was diagnosed with breast cancer in July after attending my first mammogram. I received my letter, rearranged it three times because the first two appointments clashed with the school run and the third I had cinema tickets booked to see the Amy Winehouse film Back to Black with my mum 😊. I popped along thinking it was a tick box exercise, get it done and forget about it for three years. But I received a ‘We would like to invite you to attend for further investigation’ letter. Worded like you’re being invited to something fun! I thought they just needed to do another mammogram. I arrived and was told I would be having three biopsies. Two weeks later I went back and was told “It’s breast cancer” My world imploded. Well very slowly. I actually sat there and just looked at them. And then I looked at my partner who was crying and I thought ‘this is weird’. I feel nothing. The Dr asked if I was ok? And I replied ‘I feel nothing. I can’t have cancer, I feel fine, my children are only 5,7 and 9”.

On August 23 I started chemo.

I thought I would start this thread to share chemo survival tips and things I wish I’d known beforehand in the hope I might make someone’s journey a little easier. And I would love to hear other peoples survival tips if you’re willing to share 😊

My protocol means taking steroids after breakfast and lunch the day before, the day of and the day after chemo. I was advised to have a protein based meal first as steroids can irritate the stomach. So I did. I swapped my usual coffee and biscuits breakfast for a chicken sandwich, and then I swapped my usual light lunch for another chicken packed sandwich. I did that for three days. On day 3, the day after my first chemo, I spent the evening in A&E convinced I was having a heart attack! Convinced my body couldn’t take the chemo and I was going to die. I had an ECG, bloods taken and was told it was……acid reflux! OMG I’ve never had that before! It is SO painful and the Dr said people often think they’re having a cardiac arrest. As I sat there in a crowded Saturday night A&E I sobbed to a nurse and then a Dr “I don’t want to do this, it isn’t fair, I have a life”. They were lovely and agreed it isn’t fair. A big dose of Gaviscon and an IV drip later I went home with a packet of anti reflux meds to take daily and a lesson learnt for next time.

TIP! Don’t make huge changes to your diet before taking steroids, you don’t need to and it causes unnecessary strain on your body. A protein rich’ meal can be a boiled egg and toast. If you don’t usually eat chicken sandwiches for breakfast and lunch don’t start! 😊

I’ve never been a worrier, but I’ve also never been a drug addict, so giving permission to a group of strangers to stick a needle in your vein and fill you full of highly toxic drugs definitely alters your mindset. After leaving the chemo suite I went home and spiralled in to a hyper vigilant hell hole. The next 48 hours was spent checking my temperature over and over again, checking my skin, checking my breathing - Am I breathing? Can I breathe? Checking my heart - Is it racing? Is it ok? I walked around the house with a face mask on convinced i would pick up germs which would lead to an infection which would lead to sepsis and kill me. Hyper vigilance is another trip to hell and one that needs to be nipped in the bud quickly!

TIP! If after chemo you find yourself obsessively checking for side effects, easily done when you’ve been made aware of all the ‘potential’ side effects including the life threatening ones. Pick up the phone! Call the chemo suite, call the macmillan helpline. It’s so important to calm down your fears and rationalise them.

OP posts:
Roomforapony · 30/08/2024 00:36

This is a great idea! It would have helped me last year so thank you OP😊
I was admitted with neutroponic sepsis after my first chemo treatment and almost died, my oncologist later said, quite seriously, “we’re trying to kill the cancer not you!” and promptly decreased the dosages.
Tip 1: I wasn’t aware how poorly I was, I had ticks in the red column for every side effect in my cancer diary but I just thought I was being a wimp so my biggest tip is NEVER downplay your symptoms! I am extremely fortunate that my family advocated for me and got me to hospital. Call the cancer care line and be brutally honest about how you’re feeling, I didn’t realise that my feeling of impending doom was a symptom of sepsis. You won’t be dismissed for time wasting, you’re not being a nuisance, it could save your life.
Tip 2: if having the cold cap take pain relief at least an hour before your treatment and take it regularly for the rest of the day.
Tip 3: (related to tip 2) they smother your in hair conditioner to make the cold cap more effective so try to gather the energy to wash your hair after the mandatory 24 hours. It’ll make you feel slightly better plus, as I learned when I looked in a mirror 6 days later when I was in hospital, you won’t look like you’ve lived in a damp cave for a month🥴
Tip 4: don’t try to eat your favourite foods if you’re feeling nauseous as they won’t taste the same ever again (still mourning Kelloggs cornflakes😢)
Tip 5: if your mouth starts to hurt call the oncology team and ask for artificial saliva mouth spray (forgotten the name) and the prescription alcohol free mouthwash, it really helps.
Tip 6: have tissues everywhere as your nose will run ALL the time because your nasal hairs fall out!

Sending you positive thoughts💐

Rockschooldropout · 30/08/2024 22:23

This is a great idea , I’m sorry you are starting this journey ..
I was diagnosed on 7th August with breast cancer and am due to meet with my surgeon re having a mastectomy and know I’ll be having chemo afterwards , I’m pretty terrified of the whole thing as I have a serious heart problem .. so it’s all a worry .
it’s great to share experiences and tips though ☺️

TwigTheWonderKid · 31/08/2024 07:18

OP, you'll find loads of support, on This thread.

FarmersWife3 · 07/10/2024 11:08

Thanks for starting this thread. I've recently learnt i'll be offered chemo and then radiotherapy for a form of fast-growing non-hodgkin lymphoma. Until last week i'd been told it was a follicular lymphoma and very slow growing so unlikely to need treatment soon, but having had a letter last week saying they were referring me for chemo etc its been really hard to stop worrying.

Like you OP, I've never felt unwell (found a painless lump on my tonsils which i 'knew' was cancerous, and unfortunately i was right), and have 2 children of similar ages. It seems so counter-intuitive to sign up for a treatment that makes you feel (and possibly look) awful! I have a consultant appointment next week, so hopefully will find out more then, but otherwise relying on macmillan and other websites for info on what to expect, which isn't really helping as the list of side effects is so long and scary!

I'd love to know how people got on talking to their kids about it, the side effects, and how soon these wore off! Were people able to carry on doing normal things inbetween rounds of chemo (I have no real idea what the actual treatment involes yet!).

Aussiebean · 07/10/2024 18:42

Thank you for this. I will probably be me at the end of October. Just waiting to see if my cancer has spread past my lymph nodes.

any advice is most welcome. Particularly how to tell my 7 and 10 yr old.

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