Cancer Support Thread 87 - everyone here is so supportive.

[LemonDrizzle10]

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@WorryMcGee I’m so sorry that happened to you, how completely shit of her.

On the masssge, there’s a bit about that in the Liz O’R book, so you are not alone in being upset. I’ve added a pic of the extract and hope this is ok in terms of copyright.

Do any of you use Nioxin? I've been recommended their system 2 to promote hair growth (the hair thing is really getting to me!) Any experience of whether it may actually work, or even help, for regrowth?

Mine is clinging on still but I can feel how thin it is. The girls dad keeps saying you can't tell by looking, which you can't because there was so much of it, but I know & I'm leaving a trail behind me.

I'm encouraged by one of the ladies who is usually in for her chemo at the same time as me though - her hair has been growing back for the past 3 weeks, whilst still on the paclitaxel, so maybe it will be short lived hair loss (I can keep my fingers crossed 🤞)

@WorryMcGee , what a stupid woman!
I bet you looked lovely.❤️ I used to pre empt those sort of questions by wearing my ‘my oncologist does my hair’ t shirt, but we shouldn’t have to. My friend said I looked like a trendy lesbian, which as a 58 yr old untrendy non - lesbian was a bit grating, but I suppose she meant well. It is all so tiring and stuff that shouldn’t need dealing with if people just used a little imagination and empathy.

P.S. hope your duck won…

@Fantasea thanks for your reply I completely understand where your concerns come from and going through all this must alone must be hard. In the days before cancer I was on meds for Crohns which also lower your immune system and increase your risk of infection. I was on them for 8 years so I may of become a bit blase/ casual towards the risks.
@WorryMcGee that a really crass comment made towards you people are such twats at times.
On a completely different note my son would of loved a india runner duck race! When I was first pregnant I went to my GP and said 'I think I'm pregnant' and he said ' well if it walks like a duck and quacks like a duck it probably is a duck' . The result is a 10 year old who is obsessed with ducks! X

Gosh some people just don't think do they! I'm sorry to hear some of the comments you've had to put up with.

Worst I've had so far is 'ooh I thought you'd lose weight on cancer treatment!'.

Yeah so did I mam, but the steroids have given me the appetite of a horse and having to travel four hours a day for treatment has meant I've had less time (and energy) for my pre cancer exercise regime!

Blood clot leg is showing signs of improvement - I can walk on it and am getting round the house ok. May try a short walk round to my brother's (literally about 500 yards away) as getting it moving is apparently the best thing to do. It's frustrating as I've managed to get through treatment so far pretty much continuing as normal to some degree. Despite the initial horror at having to self inject daily it's been fine so far - in fact the one the nurse did left a great big bruise and mine are only showing pinpricks.

I got chatted up twice yesterday!!! I suffered the wig in this heat and managed to shove a stetson style hat on it. My wig is lovely they describe it as beach hair🤔i donned my raybans and bright orange lippy to match my skirt. My picc line was visable but covered up. I was going to art college to see my nieces final show so made an effort. A love.y young fella on the tube opposite me started talking in the quiet parts of the journey asked me what perfume I had on and was so sweet. When I got off my stop the underground fella very handsome I described him to my sister as Idris Elbas long lost cousin😃he was lovely. Well he came up to me to help me top up and said you look gorgeous, really beautiful. I love your hair and clothes. I said thank you and ran round the corner and burst into tears! What is it about crying? Im doing it at least once a day! Do you think everyone knows we have cancer and thats why they are nice? No one is nice on buses by the way Ive had some terrible experiences lately.

Whatever the motivation for the compliment, I’d take it as a win @EachandEveryone

I’ve been for a satisfying run. I have it in mind to try to get back to being able to do 10k by September and managed 6k today. My app congratulated me and said it was my 50th fastest ever over that distance which I think is a euphemism for Very Slow but 3 weeks post radio I’ll take that as a win too!

Oh thats fantastic! My legs are aching from my 11,000 steps yesterday but im going to try and walk again today. It feels strange not having chemo for two weeks bu5 I have to get my fitness up for Glastonbury!

Enjoy Glastonbury @EachandEveryone
Have you had any alcohol recently? I had a beer a while ago and it gave me an upset stomach. Might be worth a ‘dry’ run!

We were at a street food thing yesterday and my sister bought be a pint of shandy thinking she was being nice. I haven’t touched it since Xmas. It was very lovely and no side affects so far. Although I am at the bus stop going to aldi. I must be mad. I think I will limit myself to three halves a day. I’m conscious I’m getting my bloods done the day after I get back 😀

@Brunonononooo

Yes, it's really bizarre and ignorant.

Some people do come out with the most bizarre rubbish when they hear someone has cancer I've learned. It's often very annoying dietary advice like 'you need to eat lots of almonds' etc without even knowing which of the millions of types of cancers the person even has or whether they have e.g. a nut allergy! I find that incredibly arrogant.

In the spa I think it was possibly more fear of doing something wrong and pure ignorance though (?) which shouldn't have happened because they should be trained professionals and have a protocol in place.

I am going to have some lymph draining massage and the therapist has a form with all relevant questions to fill in before the initial appt. She has asked me to get the go ahead from my cancer team though, despite me being post chemo, surgery and radiotherapy - she did it nicely though, discreetly, and well in advance of the appt. Then it's ok.

@OrangePippa

Did your team say Aprepitant was enough for sickness on EC chemo? I'm asking because I was put on the 'full house':

Aprepitant an hour before then the 2 following days
Domperidone 3 times a day for 5 days
Ondansetron twice a day for 5 days
Dexamethasone 8mg on the day and for the following 3 days

I agree with you about Dex, it was terrible for insomnia and sort of manic type unrestfulness. I noticed it helped with heartburn for me personally though. I had no nausea or sickness at all. (I did have other awful side effects and stopped chemo early, but I mean the nausea was not a problem for me).

Maybe have the tablets at home in case? I found Ondansetron really good by the way.

@Podgedodge

You saying "My friend said I looked like a trendy lesbian, which as a 58 yr old untrendy non - lesbian was a bit grating, but I suppose she meant well" did make me laugh. 😂I absolutely think I look lesbian with this hairstyle, and it's lucky, but I really don't have a problem with that at all. Several people have said how much it suits me; hopefully, those were sincerely believed comments and not just said to try to boost my confidence, but in any case I am getting to enjoy this hairstyle it's so hassle free. I do occasionally miss my lovely long dark brown hair though, it was one of my best features.

I've noticed when I go somewhere, younger people (teens and young adults) smile at me a lot more than before. I was wondering whether it was because LGBT etc (sorry with chemo brain I can't remember the other letters) is really cool amongst those age groups and they now perceive me as part of that community. I find that quite endearing.

I was in the pub a couple of weeks ago and wanted to sit away from the crowds, so explained I was on immune therapies for cancer. The three young people behind the bar went from really friendly to very ill at ease, one looked so embarrassed and stopped looking at me in the eye.

It would make a fascinating topic for research I think, societal reactions to chemo patients when the effects of treatment change physical appearance.

@EachandEveryone

He sounds lovely. I guess we'll never know whether he suspected you were on cancer treatment or not, but what a nice man. Maybe he just really thought you looked and smelled great? It's definitely possible isn't it. From your description you sound pretty glamorous. 😀

No, unless we still have no eyebrows, eyelashes and walk around totally bald, I don't think everyone knows we have cancer. I also think a certain style of bandana handkerchief thing has a very 'chemo' look to it and I avoided those, not necessarily due to its chemo-ey look, but there are so many cool turbans, scarves and wigs available instead.

No not just Aprepitant- I will have Aprepitant and Ondansetron plus Metachlopramide if needed. I reckon that ought to be enough without the steroids? I can’t bear the insomnia. I can’t think the steroids do that much as the first chemo session I had all of that (apart from Aprepitant) and was sick as a dog.

I’m getting my eyebrows micro bladed on Thursday I can’t wait

Is this pre chemo? I really wanted to do this before chemo but I didn’t have time - they wouldn’t do it less than five weeks before. If I lose my eyebrows (I’m mid chemo and they haven’t gone yet) I’d like to get them done after, but not sure if they can do it once you’ve lost them as what if they grow back and don’t match?

No it’s a three week break from chemo I regret not getting them done pre but was too she’ll shocked. They told me it’s fine they do it all the time. It’s the wig shop that specialises in these cases so I’m grabbing it. My eyebrows were quite fair I’ve still got a couple so I’m hoping she will be guided by them 😀

Oh that’s brilliant, I’m deffo doing it after then. Enjoy your new brows!

I never found people could tell or suspect I was doing cancer treatment from appearance if did not know me, at least all appeared shocked on being told. I always had short hair which helped hide it. I went from being attractive, getting my way with pretty much everything, especially men being super helpful remember DD asking me on how she could "be like me and get lots of rich and powerful men running round after her all the time" 😂to looking awful and then finding I got my way on nothing in meetings unless it was cancer sympathy and became invisible. It was quite eye opening.

I did find when I asked for cancer adjustments in hotels etc places went above and beyond mostly. Now a year on I am noticing people looking at me again especially when swimming, I am starting to not be invisible again as I get fitter and my hair comes back. Can't say I've had any flirting though one man came over and tried to talk in the pool about how he doesn't get enough time to himself because of his child as soon as wife was away and the dentist is very flirty and touchy but think he's probably like that with everyone. So would imagine those were genuine Each I do think there's a lot of fake compliments with cancer treatment appearance and I don't like it though I'm like give me a compliment well that was fake, ignore me well I clearly look awful. So you can't win with me but generally I want to be ignored until I am repaired with breast and hair back. Just need all mirrors destroyed and cameras until then.

I’ve been helping out at a sports club fundraiser and seen lots of mates who thought I had secondary cancer rather than a second cancer. I am a bit tired of explaining but they meant well. “You look really well for someone on chemotherapy” was nice to hear. I think they were expecting me to be at death’s door. It was fab because I just gave orders and lots of strong men ran around doing what I said. I could get used to that! Now home resting up with a book and a cup of tea. I quite like my chic lesbian hair.

Does anyone have advice..I’m due to start chemo this week - I’ve seen the room - don’t think there’s any privacy.

Comfortable chairs all round the perimeter of the room facing inwards…
I’m now worried I’m going to get emotional and start crying, just because it’s all become very real.

I’m not remotely worried about losing my hair (I think!), I’m rubbish at styling it - so there might be relief!

It’s just the whole picture and what chemo means - my own shortened mortality.
I just don’t want to make anyone else in that room feel worse - but equally they probably don’t feel great about life either.

Any perspectives on sitting in a room having chemo?? Do you meet the same people each time? Do people chat? I’m sure the nurses are lovely.

I know that people keep telling me I’m ‘brave’. Which is not true. I am conscious that I’m repressing a heap of emotion that comes out when I’m alone or with DH.

Bit of a long post, but it actually helped me to express it. Maybe I need to talk more? But I don’t want to put it all on DH

Bloody hell, this is hard - and I haven’t even started treatment yet.

Good luck with the chemo Red Yes in our chemo there was little privacy though people kept themselves to themselves and was silent mostly though was in a period of masks. I didn't feel comfortable too close to others, no idea why but preferred to deal with it alone, so a couple of times I got moved to a one on the end which helps. Nobody will think anything if you cry, I would imagine everyone in there has cried about chemo. Quite a few went to sleep. A lot are on phones. Might be more sociable now.

I was by different people each time though was on weekly and most on 3 weekly. I had a couple of chemo buddies and we messaged each other and moaned together, that helped so much. Nurses are generally lovely though ours were running round like headless chickens at time and lots of agency staff so different ones each time sometimes. But standard of care was excellent. Ours also had sandwiches, drinks and biscuits but you often needed to ask unless you happened to be in at 12pm exactly.

@RedRosesPinkLilies I was a bit worried initially about the chemo room, it does get easier. You recognise the people you share treatment days with and can chat and support each other. Everyone seems to have a nap at some point. I’ve kept in touch with one lovely lady who I was next to a few times.
I took magazines, headphones to listen to the radio, books, a comfy blanket, mints and snacks. I had a ton of lavender oil to sniff the first few times as I was so stressed about going in; didn’t need it after that. The staff were brilliant and they couldn’t do enough to make the whole experience as good as possible. Once you’re home the chemo unit are contactable 24 hours a day too - they’re so supportive.

@RedRosesPinkLilies the first thing to understand is that you don’t have to turn up to chemotherapy being brave. You just have to turn up! The nurses will understand you are scared stiff and will look after you. They are very kind. If you are having EC you will probably be in a small room with one nurse shooting in syringes quite quickly. It doesn’t take too long. If you are having immunotherapy or other chemo drugs like taxols or carboplatin they are infused more slowly so you get rigged up then go and sit in the main room. Everybody is different. Some like to chat and some just read or listen to music. I quite liked sitting with the jolly old men talking about cars and boats. There are always a few having blood transfusions and they seem to be more sociable and upbeat than the chemo ladies. My unit has volunteers bringing drinks round and they are lovely to chat to too. It’s quite a social day out.
Good luck!
Topx

Hi @RedRosesPinkLilies it sounds similar to the set up at my hospital - although we have one bigger room with 16 chairs and then a few smaller ones with four chairs.

It does take an emotional toll. I've had a few weeps myself and have seen other people also having a quiet sob.

Some people are more chatty but no one has been over pushy with it so far - if you want to bury yourself in a book or the phone people will let you crack on. The nurses are very kind and we get regular tea and biscuits bought round and lunch if you're over there on a lunchtime.

I don't know what type you're having mine involves a load of hydration drips pre and post the chemo - lots of weeing which is a bit of a pain with the stand!

Generally they have tried to make it as calm and relaxing an environment as possible. It's still shit having to be there but I find once I'm all hooked up and settled in it isn't too bad. First time was definitely the worst as I didn't know what to expect and whilst I wouldn't say it was a nice place to be, it does get a little easier.