Cancer Support Thread 87 - everyone here is so supportive.

[LemonDrizzle10]

New thread

Thank you all so so much for the support xx

Hi everyone my posts are very sporadic so apologies for just randomly jumping in every now and then. I am reading all of your posts as I try and navigate various appointments etc and really finding your questions and answers and general support of on another a big comfort.

I have a question about massage/advocating for yourselves - my husband booked me a spa day and overnight stay (spa day yesterday) and I had booked a back neck and shoulder massage as I am very tense and sore. Anyway I put on my form that I have anal cancer and they refused to do the massage saying ‘it’s not good for you and can spread the cancer’. Now a very quick google has told me that’s almost certainly not the case but my main problem is that I feel really unwelcome and like I shouldn’t be here just because I am ill. I have not yet had any treatment so that is not an issue.

Do any of you have any experience with how to deal with this type of scenario? I am ashamed to say I just cried and said I would like a refund then left. My husband is my biggest advocate and has very politely told them that they have handled this badly (they actually have apologised and given us some lovely extra bits while we stay here) but I would like to be able to advocate for myself as well without just getting upset. I spose I am asking for advice on that really?

I think its pretty normal to get upset easily on cancer treatment so its very understandable that situation was difficult and distressing. I've not really found a way not to get emotional though I find when I do swimming helps. Also with spa things I would sort all in advance so no issues on day. I can't see how it would spread via a massage but I think it can be an issue with treatments having cancer, maybe insurance? Or fear of being sued? So would either sort in advance or don't say you have cancer. Or could a husband or a friend come with you, I normally take someone with me if feeling vulnerable. I think anyone would be upset by that though, you've got for a nice treat then they've cancelled it and told you they can make your cancer worse. Not great. Hope you can still enjoy your break.

Aw, @Brunonononooo that's awful of them & would upset anyone, I think. I'm glad your husband was with you to help handle it.

I don't have any experience of that sort of situation, to help you there. But I would channel my inner super confident person (even though I'm not feeling it atm) and explain/show them that they are wrong. Maybe ask your oncologist what sort of evidence there is that this is wrong?

I'm busily pottering about this morning - they changed my anti-sickness meds to ondansetron this week, to see if they make any difference to my heart function, alongside the ramipril. So far, no side effects. I did notice my right foot tingling away last night though, at about 2am when I nipped to the loo. Not uncomfortably so, but enough for me to be wriggly in bed 🙄

@Silkierabbit it makes me feel better that I am not the only one who would feel shit about this - I wasn’t sure if I was being over sensitive or overreacted but I think even small things set me off these days. Luckily I was with my husband and he did speak to them on my behalf.

@lucysmam you're right maybe I should ask at the hospital in case I brave a spa session again at some point! Even if they still wouldn’t do the treatment I would at least feel like I had made an effort to help people not feel shit like this in the future. Hope you’re not feeling too sick today I have heard ondansetron is pretty good although to be fair that was only in the case of pregnancy rather than cancer…

@Brunonononooo surprisingly I haven't felt sick at all! I did expect to - I was sick the first week. I was in Western Park though, unexpectedly, and very very scared/nervous about what was actually going on, so maybe that was a factor. I'll probably take a third one this evening & then leave it until next week, unless I do feel bad tomorrow.

Hopefully not though 🤞 my best friend and a work colleague are coming for a brew in the garden.

@Brunonononooo I think the issue with massage is that it stimulates the lymph system & therefore there's the link with cancer spreading through lymph nodes etc I don't know if there's an officially accepted oncologic view on this but a lot of places like spas & beauticians will avoid doing treatments on anyone with all sorts of medical conditions just in case.

It is very upsetting when you have cancer as you are very vulnerable. There are spas that offer specific cancer services, often called oncology massage. A quick Google will find them - maybe getting something booked will give you a lift, although it still feels like we're being treated differently, like it's a stigma, but the actual treatment should be lovely & relaxing!

@HauntedDishcloth thank you, yes I have looked into that now and found someone nearby who is trained in it (or at least has knowledge). I think the reason I was upset was more because they made me feel stupid - also they didn’t tell me any of this in private, literally just in the reception area of a busy spa! So I felt very vulnerable as you said. And they just tried to say it ‘wasn’t good for me’ I would rather they had just told me they weren’t able to due to insurance etc as I do understand that. Luckily the rest of the time was much nicer anyway…managed to salvage things!

Hi @OrangePippa , I found pac easier than EC but I did get some neuropathy which concerned me and I mentioned it to the treating team as soon as I experienced it - they lowered the dose for me for the last 2 cycles which helped. It completely disappeared once I finished and I have no after effects from it.

I also felt a bit light headed on pac - not all the time and it wasn’t too bad but I definitely felt a bit off balance. It didn’t stop me doing normal though stuff (except driving). All in all it was easier than EC which wasn’t that bad either so I was relatively lucky. The only downside is that it takes longer to administer then EC but otherwise it was fine.

I am 5 months on from chemo now and doing well; although my big toenail turned black about a month after chemo finished which I wasn’t expecting. I am otherwise pretty much back to my normal self physically but with wild tufty hair! Best wishes xx

@OrangePippa all my gastric side effects went away which was nice, but I found paclitaxel harder as it was the one that made my hair fall out ☹️ I cold capped all the way through and lost no head hair on EC so thought it was working! I had a rash up my arms after the first infusion but it went eventually and that never happened again, and I had joint pain in my lower body for 48/72 hours after each one but that went away too. I was in the minority in my little “group” on chemo day, they all found it much much easier than EC. I hope you do too!

@Brunonononooo thats pretty shit - and in front of everyone too! You did the right thing in informing them but they really could have handled that better.

The whole massage spreads cancer bit is actually not true, and massage can be a good part of any cancer patient's care. As someone noted, look up oncology massage, which will be more gentle than say a deep tissue or Swedish. Be aware that they may ask for a letter from your oncologist for clearance as a matter of course, but mine wrote one no problem when I told her I was interested in pursuing something like that. The bonus is that an oncology specific masseuse will also be aware of perhaps more uh, extensive scarring than your run of the mill massage person. I have radiation tanning on parts of my spine that I am very very touchy and embarrassed about (its a tanned square and so weird looking) but with an oncology masseuse they will be aware and have seen something like that before.

Was at the farm with DD today, minding my own business looking at the ducks when a woman came up to me and said, and I kid you not:
“did you have to go to a man’s hairdresser to have your hair cut like that?”
(no wig or hat today as too hot. I have hair across my whole head now but it’s giving 11 from Stranger Things vibes…)

😶

I said “no I had chemotherapy”. And of course everyone stopped looking at the ducks and looked at me instead 🤦🏼‍♀️ ffs

@Brunonononooo I'm so sorry this happened to you and in front of everyone makes it even worse. Cancer makes you vulnerable and I still find it hard to advocate for myself three years later. I'm pleased to hear they've tried to put it right and hope you can enjoy the rest of your break. Cancer takes away so many things but dignity and privacy shouldn't be among them.

@WorryMcGee oh dear, you poor thing, having your hair commented on is just awful and being out with your DD just having a nice time and then this happens is horrible. I still feel self-conscious about mine which has now fully grown back and wear a hat in public if I can. I keep it short in a 'man cut' too as it's so wispy and uneven. Any attention drawn to my hair is just too much.

I've recently starting going to a new church and sit on my own at the back with a mask on and a hat as a 'prop' and usually this is enough to keep people from getting too close. Last Sunday, a lady came up to me and got really close to ask if 'I was Judy'. I said she must have me confused with someone else (in a mask and a fair-isle woolly hat 🙄) and she leaned in to get a closer look at me. I found my voice from somewhere and said, 'could you stand back please as I have a very low immune system?' and then she was all huffy with me! Tomorrow, I'm considering wearing the badge I got during Covid which says 'Please stand back I'm shielding, Macmillan Cancer Support' on it but I'm uneasy as then I've got my cancer 'label' on. It's all so hard isn't it?

@Fantasea were you told out had to shield with Niraparib? I shielded for so long at the start of the pandemic if I had to do it again I think it would break me.
I started Niraparib yesterday so far I've had some nausea and a small nose bleed this morning. I'm very tired I've been trying to keep busy Park Run volunteering this morning, sons swimming lesson then local literary festival in my little town I'm ready for bed now though x

@Lisdeflores I've been wondering how you were getting on with Niraparib. I'm really sorry to have worried you. No-one told me to shield but to be mindful that my immune system would be depressed and to avoid those with any active infections. I wear a mask if I go out and am very careful but this is self-imposed. I'm single and have no-one to look after me if I get ill and this frightens me terribly. The reason for wearing my badge in my earlier comment is to stop people getting too close to me, rather than the fact that I'm actually shielding, if that makes sense. I was wiped out in my first month when I was on 300mg, hope the tiredness eases for you, it sounds as though you've done loads today.

@WorryMcGee I can’t believe what I have just read. WTF? I think you showed such restraint by not shoving her into the duck pond. You’ve already had your share of crass comments from stupid people…I just can’t understand why anyone would feel the need to say that to a stranger. 🤷🏻‍♀️

@Whattodotomorrow I still can’t believe it happened. There was a runner duck race about to happen (as epic as it sounds 😂) so I was talking to DD about which duck we were going to cheer for and this random woman just sidles up while I was talking and says that to me! WHY??!

Put me right off my duck choosing game. Made me think Maverick would have it and he was really quite slovenly.

@WorryMcGee It is just crass behaviour. There is no way to spin it as an awkward compliment she was just being rude and mean. I’d be thinking up clever insults hours afterwards. “My hair may be short but it will grow back whereas you will always be a tactless idiot” I hope you enjoyed your day out despite her.
@Lisdeflores I shielded for most of 2020 and 2022 so it got to be a habit. I never really stopped and now I socialise outdoors, rarely go into crowded places and am quite antisocial. I have missed out on a few events I would have enjoyed but it doesn’t seem worth the risk while I am on chemotherapy still. I have learned which friends to steer clear of too. Some have had Covid three times that we know of!

DD redeemed herself by cooking dinner tonight which as I was up at 5.30am taking DH to the start of his event was very welcome. Tired now!
Top x

I also vote the pac is easier than ec. I’m so glad my chemo is done. Although I’ve just had a text that woke me up saying the oncologist wants to see me again this week. Last treatment went down to just one drug because of swelling and tingling and the Dr was away with covid so she couldn’t check me properly!

Really pleased with my peachy fuzzy hair which is coming back! Nails are still very weak. How long does it take for the puffiness to subside? (I’ve been eating a lot of dairy milk chocolate which can’t have helped.)

Ive gained a lot of weight post hysterectomy and now on this six month chemo - I really need to get myself back into a proper healthy eating and exercise plan but then I will have surgery in a few weeks. So that will delay fitness a bit. Any tips? I’m walking the dog for an hour a day but I think the chocolate balances that out! 🤣

Regarding EC versus Paclitaxel/ Abraxane, I found EC appalling for chemo brain and general zombieness. Pac / Abraxane were appalling for peripheral neuropathy but without the zombie effect. I didn't have nausea, I think I was on a megaton of anti-emetics.

@WorryMcGee

What a bizarre question, a man's hairdresser???? Can't women's hairdressers do very short styles then? Why not? Good grief what a stupid bitch.

My hair is growing back post chemo and is a few mm long. I've actually had several people say it suits me. Hope they don't privately think 'oh what an awful man's hair style'.... Tbh I don't actually care!!!! I think it makes me look a bit lesbian, which I think is totally fine. I'm going to keep it this length for a few more months till i finish the immune therapies, then think about what I want to do. It is very convenient this ultra short length.

@Brunonononooo

I'm so sorry to hear what happened at the spa. I think they reacted unprofessionally and sort of weirdly - you'd booked a neck and shoulder massage! If you had neck cancer I would see their point in a way, massaging over a malignant tumour is unwise I'd imagine, but it was a totally different part of your body. After all, it's very common for chemo patients to be offered reflexology isn't it, which is a type of massage.

As for you getting easily upset, I do too! I cry soooo easily. Anything sets me off. But them saying that to you was really upsetting; I would have cried, 100% certain.

I noticed that if I took slightly less Dexamethasone, my heartburn was worse on EC chemo. On 8mg a day it was better: on the day of the infusion, then 3 more days each cycle.

Not sure if those of you saying the heartburn is bad on EC chemo have been offered Dexamethasone?

Thanks, that’s really good to hear. Glad you’re doing well now x

Thanks. My hair is long gone so at least I don’t have to worry about that! Xx

Yes I do take Dexamethasone on the day and three days after. Although I’m actually not going to take it this cycle, for me it’s only to help prevent sickness but since I was horrendously sick on the first round I take Aprepitant, so I don’t think I need the steroids and they give me awful insomnia so I asked if could not take them this time (as the Aprepitant should be enough for sickness) and they said that was fine. Now hoping it doesn’t make the heartburn worse!!!

@WorryMcGee honestly I really think some people’s brains don’t connect to their mouths. What a bloody bizarre thing to say to someone?! Just no tact is there. How dare she put you off your duck choosing game too haha!

@SummerCycling I’m glad I am not the only one who seems to cry easily (not that I want anyone else to be crying) but yeah now I have calmed down I find it bizarre that they said that. I think it must just all be to do with their insurance tbh but if they had told me the truth instead of some weird bullshit reason then I would have been more ok with it. He definitely wasn’t going to be massaging the area my tumour is as it’s anal cancer…….