Cancer support thread 91 - don’t borrow tomorrow’s worries

[LemonDrizzle10]

New thread

I don't really know why I have to carry on with the cyclizine as well?

nibbling on a cream. cracker is helpful.

I was given an awful lot more meds than needed in a way which made it sound like I had to take them but things like anti-sickness I found it was finding what worked for you and I was given about 10 times as many meds as I needed for that. Its always safest to check but people were going out with 3 carrier bags of meds though its quite rare to get lots of meds out of the NHS so some of them can just start a stash.

I really would prefer to take a few drugs as possible, but I think I just need to get through the next few days and then I can discuss it with the Oncology nurses

Good point Silkie I helped my friend clear out her mother-in-law's house after she died. And we took 4 carrier bags full of drugs to the pharmacy, for destroying

she just kept getting repeat scripts and presumably never took them.

Must've been thousands of pounds worth of drugs there just wasted

I was better on as few drugs as possible and at ours they were also happy for you to ring the chemo line for advice. I think I had 3 anti-sickness things and just used the ondansetron and far less than they gave. Its worth keeping a diary of how you are feeling day in chemo cycle and drugs if up to it so can see patterns and work out what causing what. I preferred less drugs so could tell what side effect was from what. But would check with oncology team.

I'm not liking the cyclizine as I feel light headed with it and my eyes get fuzzy

Seems like you've had the ondansetron alone so I think I might try it and see

I can add the cyclizine back in if it's not helping

Sound like a plan?

Yes I would try ondansetron on its own though it was the steroids that affected my eyes. But when you are on less meds its easier to work out what is causing what. Plus one nurse told me the more meds the more side effects and they often end up in a cycle of more meds, more side effects, more meds for those side effects and so on and actually less meds can be better.

Steroids? Are either of these steroids?
The cyclizine looked like an antihistamine

My steroid was dexamethasone. I was given an anti-histamine each chemo and that was to stop an allergic reaction.

https://www.nhs.uk/medicines/cyclizine/about-cyclizine/ seems to be anti-sickness and anti-histamine. I'ld phone chemo line and check what its for and see what they say about stopping. If its just being used for anti-sickness and not helping should be fine to stop. If its partly against allergic reaction they may need you to carry on taking, they are extra cautious at start. I didn't have that so don't know.

Good evening friends old and new! I’ve not been around much of late: chemo has been quite a dark time for me and I was boring myself with the same repetitive thoughts so didn’t want to inflict them on anyone else.
My final Paclitaxel was on Thursday so I’m now struggling at the bottom of the cycle but taking comfort from the fact that it’s the last time.
Now starting to worry about surgery though. It’s scheduled for December 27th and will be wide local excision with axillary lymph node clearance. My surgeon is very evasive as to what to expect - breezily telling me I’ll go home the same day and only admitting under torture that I’ll be trailing a drain around. Equally nonchalantly told me that if I end up asymmetric she’ll give me a prosthesis for my bra. Really worried about cording, lymphoedema, permanent nerve damage, etc.
Am fat, bald, and can’t bear to look in the mirror. This just feels like further mutilation.
So please share your stories with me!

@Silkiefloof

Did they give you Ondansetron for Paclitaxel? (I think that was the 'only' chemo you were on? not that 'only' is ever the right word for chemo) Where I was for Paclitaxel it's usually nothing at all for anti-nausea, just Dexamethasone and Chlorphenamine the first two sessions in case of an allergic reaction. Session 3 onwards nothing.

My hospital told me EC chemo could be horrific for nausea so they gave us Aprepitant, Ondansetron, Domperidone and Dexamethasone. Full house! I had no nausea or change in taste except I went off sweet foods on EC.

Weird the NHS doesn't seem to have a standard policy or guidelines. I'd understand if it was to adapt to an individual patient but it seems more like each Dr or hospital decides.

Hi @Florabritannica

I had similar except a full mastectomy instead of wide local excision. I do look mutilated plus my chest now has oedema. Thank goodness it's not on my face.

I wear a bikini when swimming but Amoena tops are secure along with their swimming prothesis it's ok. I used to wear low cut dresses / tops out in the evening so won't be doing that again. Not sure what to do with my black dress I really liked but would clearly show the mono-boobness.

Good luck with your surgery.

@SummerCycling Thanks! Is the oedema from the lymph node clearance or the mastectomy? Are you going to have reconstruction?
What was recovery from surgery like? And were you offered any options?
I’m finding it so hard to get any kind of picture of what to expect.

Yes just the Pax Summer The oncologist gave me a choice of what chemo of about 6 or so, some were combinations, as I was super anxious, and I went for Pax. EC was a choice but I have a sickness phobia so wasn't keen on that and Pax is the most gentle on the heart too.

Yes I had at chemo Pax each week plus anti-histamine and ondansetron and about 6 steroids a week (dexa..) and 6 more ondansetron and 2 other anti-sickness things. They gave industrial quantities of meds at my hospital for chemo, that was really light for them, but surgery not even a single pain killer. Just said go to Tesco on way home hmmm after a mastectomy and general anaesthetic. Thankfully we had got some in advance. And nothing for radio unless you get burns. And Tamoxifen you can only get 1 month at a time. Though I did get offered that abeb.. one which is crazily expensive but turned that down.

Flora I had a mastectomy, delayed reconstruction Dec 21, sentinel nodes out, very quick recovery no drains, minimal pain, no lymphoedema, once back to drain a bit took 1 minute, about a week to recover. Looks awful. They didn't give me anything for that until about 1.5 years later. And had spread to lymph nodes so second op needed. Again day though this time NHS paid for me to go private so got to stay overnight, nice food, and a whole bag of meds. More painful but still about a week recovery. No lymphoedema. Cording but I rammed it and snapped it, not recommended but it worked. Re prothesis I use Ameona swimming one as washable in bath / sink and looks good but hospital if you ask should give you something, silicone ones look good but get damaged if wash and are very pricey. I never wear anything but high neck now which I feel a bit sad about in summer. Though at least can cover it, better than things which affect the face. I do wear something like a sparkly Christmas dress and just put a cardigan over it, that works. Its possible there are better bras out there but I tend to try and hide that area - silver sparkly is great for that. Yes the chemo trashed hair plus that is tough. I resorted to hats for the hair.

My op was Dec 21 and they say reconstruction will be start 2025, had no idea would be that long but privately was £25k and someone said things went wrong and added a further £5k.

Yes I think the doma one was another one I had post chemo. And other one was Imodium by its real name.

God it’s all grim. I do wish I could just disappear in a puff of smoke.

I have the dexamethasone for 3 days at chemo, that's all.

Chemo line?

Now I'm having a paddy cos my gum is sore and bleeding

I could do with a gin and tonic but I fear my liver would collapse 🤣

Why so long for reconstruction?

Don't you dare!

Just NHS waiting lists and they have it as cosmetic not cancer so people with immediate reconstruction get priority. Annoying though as they told me a year in Dec 21. I didn't ask a year from when though. 😆

@Florabritannica . I had the same surgery as you and have nerve damage, cording and lymphoedema (possibly). None of that is great but it is all annoying rather than seriously debilitating. It’s all manageable. I am somewhat asymmetrical but I don’t think anyone would notice in normal clothes. You will get through and it probably won’t be as hard as you think.

The drain was annoying too but they give you a bag to cart it round in and I went out and about a fair bit with the bag hidden under a long coat. Good luck.

Aargh lost a long post! Hi @Florabritannica nice to see you back and well done surviving chemotherapy. You will feel much better in time for Christmas hopefully.

I had WLE in December 2020 with no problems, nice pert uplifted booby with scar hidden in nipple area. The Axillary clearance was more tricky. My drain fell out and I got a big seroma which was infected then burst out forming a fistula that took seven weeks to heal. It left a puckered scar which I am having revised next spring. My armpit shoulder and upper arm were numb but the sensation is coming back after three years. I get occasional arm swelling when I do too much but it isn’t lymphoedema and regular exercises keep it in order. All in all it hasn’t been too mutilating and I am pleased with my uplifted breasts. ( I had WLE no 2 in January 2022 to match) Now time to sort out the flabby belly!
I’m over on Friday if you want a coffee at the Garden Centre. Will probably take DM up to get a Christmas tree.
love Top x

Thank you @dotty2 - that’s the kind of thing I need to hear. It’s so hard to gauge from the leaflets they give you what the actual impact is likely to be. Also my leaflets advised me against doing any heavy work for the first few weeks like ironing or vacuuming but said that after a couple of weeks I should be able to lift small children. Good to know what the medical profession thinks are the key activities for women.
@TopOfTheCliff it would be great to meet up on Friday but why don’t you come here for coffee? I’ll pm you directions.

@Florabritannica I had a WLE with several lymph nodes removed last October. As one of the youngest I was last on the day's surgery list but still home by about 9pm that evening. I did not need a drain.

Although lump was biggish and boob tiny, I am still pretty well balanced. She went in through my nipple and I have absolutely no scarring on my boob. This may be too weird but am happy to send you a photo. I scared myself by looking at some awful pictures on Google before my surgery, and radiotherapy and really wish there had been more positive images to see too.

The more uncomfortable bit is the lymph node surgery. I was sent to a physio session before my surgery to learn all the exercises to do afterwards and I had no lymphoedema or cording though I guess that could have been luck?

I was told to buy mastectomy style bras with adjustable straps for afterwards.