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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

Anyone who's had / knows someone who's had chemo...

39 replies

Jourdain11 · 29/06/2020 19:04

... do you ever feel "normal" again?

I'm starting consolidation chemo for AML tomorrow, but at least have now finished the horrible induction treatment! 😂 I guess what I'm wondering... from anyone who has been through this... do you ever feel physically normal again? Honestly, I just feel like a feeble wreck or a shadow of the person I was 6 months ago. I can't imagine I'm ever going to get back to normal!

OP posts:
MinistryOfTragic · 29/06/2020 19:08

It took me a long time to get over the fatigue that comes with it. I thought that it would only be while I had treatment but honestly it took over a year after finishing treatment before I felt like I didn't get those spells of fatigue anymore. I didn't realise it was an actual thing, I kept imagining that I was ill again. Awful, I sympathise totally with you. I hope you start to feel better again soon. ❤️

Nackajory · 29/06/2020 19:14

Yes, my colleague has completely recovered from chemo. It took a while but she feels normal again. Good luck and keep the faith.

Original poster
Jourdain11 · 29/06/2020 19:19

Oh, thank you! It is good to hear that people do actually feel "normal" again at some point.

I can't imagine ever feeling hungry again... or being able to get through a day without having to lie down and have a nap several times!

OP posts:
YaWeeSkitter · 29/06/2020 19:23

I had Chemo a few years ago. It was gruelling during the treatment and I had radiotherapy afterwards so had to deal with that. But eventually it all started to come together. My hair grew back , my skin healed and my fatigue lessened considerably.
In fact I have returned to normal so much that ,almost like childbirth, I cant really believe that I went through it. I can see other people on TV say having treatment and can sympathise with them but struggle to put myself in their shoes.

lovemelongtime · 29/06/2020 19:28

You will honestly get through this and all of a sudden you realise that you got through the day without thinking about it, or feeling tired out. Good luck, hang in there. It does pass honestly.

Original poster
Jourdain11 · 29/06/2020 19:29

@YaWeeSkitter

I had Chemo a few years ago. It was gruelling during the treatment and I had radiotherapy afterwards so had to deal with that. But eventually it all started to come together. My hair grew back , my skin healed and my fatigue lessened considerably. In fact I have returned to normal so much that ,almost like childbirth, I cant really believe that I went through it. I can see other people on TV say having treatment and can sympathise with them but struggle to put myself in their shoes.
I totally know what you mean! I had a very traumatic birth with DD2 and, although I know it was scary and painful, I can't actually remember how it felt. Completely like it happened to someone else!
OP posts:
Original poster
Jourdain11 · 29/06/2020 19:30

@lovemelongtime

You will honestly get through this and all of a sudden you realise that you got through the day without thinking about it, or feeling tired out. Good luck, hang in there. It does pass honestly.
That feels so far away, but so good to hear - thank you!
OP posts:
Mydogsnotfat · 29/06/2020 19:33

I'm 52 and had chemo at 15 so was quite different from today. It took a while and I do have health issues now but I totally got over the chemo. Just a bad memory now.

lachy · 29/06/2020 19:35

My friend had chemo and I'd say that in my opinion (as hers may be very different) she looked awful bless her, and as the rounds went on, she was much more poorly each time.

She was exhausted mentally and physically, and was sleeping pretty much constantly. Looking back you'd never know what she went through because she is back to her amazing glowing self, but it took a good 6 months post treatment for her to start picking up.

Dreamersandwishers · 29/06/2020 19:35

Best wishes to you OP.
I had pretty heavy chemo about 18 months ago and I do feel normal now, but it was a year after chemo finished and my bloods are taking a long time to get back to normal. Post treatment was worse than while treatment was going on.
It seemed like it would never get better but I have definitely turned a corner. And you should see my hair 😂

nightlight29 · 29/06/2020 19:39

Hi OP, I work in haematology and chemo for AML is particularly gruelling compared to other disease groups. It can take a long long time to get past the fatigue, when you're treatment is complete you should ask for a referral to the OT for fatigue management if it is an issue for you. Good luck with your consolidation 💪🏻

iVampire · 29/06/2020 19:56

Hi!

Glad to see you back and it seems the poisoning has done its stuff!

My experience won’t help you I’m afraid. But you have age on your side, and a family connection of mine who needed a stem cell transplant (which literally wiped him out) is fully recovered now. So I don’t know how long it will take. But I do know it’s possible

What’s the regime for your consolidation treatment?

Original poster
Jourdain11 · 29/06/2020 20:09

HiDAC x 4. It sounds like it is going to be grim and I'm not looking forward to it at all... but hopefully it will do the trick!

There was talk about stem cell transplant, because it took longer than hoped for to get clear with the induction, but on balance that recommended not to go there at the moment.

Everyone has been telling me that AML chemo regimen is notoriously full-on and that it's normal to feel like this, but I still feel like I must just be being a bit feeble! The weirdest thing is that some of the side effects I'd expected I haven't had (or not very much) and others that I'd never even heard of have totally knocked me!

OP posts:
barberousbarbara · 29/06/2020 20:12

I finished chemo for triple negative breast cancer in March. I only had 4 out of 7 cycles as the first lot of chemo drugs did their job. It was grueling because the 4 cycles I did have meant I was having one of the drugs weekly and I didn't really have a recovery period between cycles. Since finishing I've had surgery and completed 5 sessions of high dose radiotherapy 10 days ago.

I'm starting to feel more normal. I have some fatigue, which could be due to the chemo or the radiotherapy or a mixture of both. My hair is all growing back, and the awful anaemia the chemo and surgery left me with is getting better. I've got some neuropathy and my veins are trashed but it's a small price to pay.

You will get through it. You have to remember they're giving you toxic drugs at a dose to not quite kill you, in the hope you'll survive but the cancer won't. I'm still having psychotherapy to come to terms with what I've been through. If you're struggling don't be afraid to ask for help.

Duchessofealing · 29/06/2020 20:18

I echo PP, you will look back and you won’t remember this horrific time. I’m 11 years past my final chemo session - and I can’t believe it was me. It took about 6m to get back to being me, a bit longer before I had enough hair to ditch the wig and rock a crop. One foot in front of the other, one day at a time - you’ll get through it and this too will be a distant memory Flowers

ceecee32 · 29/06/2020 20:25

Hi, I was diagnosed with AML last Oct.
I had 2 rounds of intensive chemo and then a weeks consolidation chemo followed by a stem cell transplant in Feb. Got the all clear last week Grin

I got an infection after the second round of chemo and had to stay in another 3 weeks. At one point I told the doctors to stop with all the IV fluids and antibiotics as I had just had enough. The knock on effect was that I only had 4 days between being discharged and being readmitted to the transplant centre and I really didn't feel that I had the strength to cope. But they told me that I had to do it, so I did.

Fatigue meant for me that I would do something and then have to lie down. But I struggled even more with weakness. Maybe because I had been in a little hospital room for 4 months and not being able to go anywhere. When I got home after the transplant I could hardly walk from the living room to the kitchen and couldn't get upstairs. I still get out of breath walking, managed half a mile last week which was unthinkable a month ago.

Dont underestimate how much help you will need, hope everything goes well x

Original poster
Jourdain11 · 29/06/2020 21:38

Thank you so much Flowers I feel like I massively underestimated how much this was going to impact on me. I just can't ever imagine feeling "normal" again. It feels like one setback after another, even though I know I'm lucky that it was caught during the pandemic and that I was able to start treatment promptly.

OP posts:
wewillmeetagain · 29/06/2020 21:48

A friend of mine has just been given the all clear, she finished her chemo in April. Her doc has told her it can take up to a year to recover from the side effects of chemotherapy and radiotherapy.

Mollymalone123 · 29/06/2020 22:25

I had chemo then rads and then hormone treatment.I would say it took roughly a year after chemo to feel more or less back to normal- still have long term issues from various bits of surgery etc- but hair took a year to fully grow back- but only a few months before I didn’t need to wear scarf outdoors.Chemo brain was a real thing for me as got words muddled and forgot stuff -better after 18 months.As you go along you get a more cumulative effect from the chemo- but just think to yourself that means it’s fighting the bad cells! You will get through it!💐💐

Original poster
Jourdain11 · 29/06/2020 23:02

Thank you for the advice and I'm so sorry that you've all had to go through this crap too! I haven't had much of a chemo brain issue so far... it's mainly been the sickness and the sleepiness. And the hair, of course! And the blood counts and the infections and "possibly infections". It gets you down after a while! Bizarrely, a few weeks ago I started to not be able to pee - like, I could feel that I needed to but it just wouldn't happen. And apparently that is a not-unheard-of side effect of chemo too, but I had NEVER heard of that. It's like all the happy surprises, they just keep coming Hmm

OP posts:
BornOnThe4thJuly · 29/06/2020 23:38

My brother had chemo 20 years ago and is definitely physically back to normal, I don’t remember exactly how long it took, but definitely less than a year.
Good luck with your treatment OP Daffodil

Babyroobs · 29/06/2020 23:46

People can complain of chemo "brain fog" for a long time afterwards. I had a client who had it so bad she just couldn't get her words out. fatigue can go on forever and blood counts can take ages to get back to normal. People can also suffer long term anxiety. Everyone is different though and obviously some regimes are far more toxic than others. The treatment for leukemia will be particularly intensive.

Original poster
Jourdain11 · 30/06/2020 07:05

Urgh, the chemo brain sounds terrible. I am praying to avoid this!

OP posts:
ceecee32 · 30/06/2020 08:48

I had a constantly runny nose which drove me round the bend. Consultant said it was because my nasal hair had fallen out.
I started to feel like my old self 3 months after stem cell transplant. Before that didn't have the brain power to read a book, still struggling with jigsaw and lying in front of mindless tv was the only thing I could cope with

themueslicamel · 30/06/2020 11:17

I had chemo when I was 36 and that was 10 years ago.

Some days I think there is a permanent ageing, particularly my memory.

But I am still here and that I wouldn't have survived without it.

You need to see it as a lifesaver!

Drink lots of water, rest you will get through it.

Best wishes OP.