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We're not that old but we're losing our hair... Do you still need us, now we're sixty four?! - CANCER SUPPORT THREAD 64

999 replies

WhatWouldLeslieKnopeDo · 11/08/2018 13:43

Me again. Even attempted a vaguely witty title. Hopefully not in poor taste Blush

If you have cancer, or you're waiting for test results to see if you do, then please pull up a chair and introduce yourself!

Some of us have been here for ages and others are just going through the testing process now, so there's bound to be someone who understands what you are going through.

Whether you are a newbie or an oldie it can be helpful to post a quick recap of your diagnosis/treatment to date just so that other posters can keep track without having to search previous threads :)

If you have a relative who have cancer then there is a thread just for you in the Life limiting illness topic, with lots of others who are sadly in a similar boat and able to support each other. Other threads in that topic might also be of interest. We wish you and your loved one all the best Flowers

Below are some links that might be useful. But feel free to ask any questions at all. Nothing is off limits here.

Cancer patients are eligible for a medical exemption card for prescription charges - there is some information on the NHS Business Authority website or you should be able to get the form from your pharmacy or GP surgery

You can find information about the individual chemo drugs or regimes on the Macmillan website here

See if there is a Look Good, Feel Better workshop near you - they are especially useful for advice on disguising missing eyebrows and eyelashes

Ellie's Friends
Something to look forward to
Cancer Research UK
CRUK science blog - this is interesting and very useful for getting the facts behind any big cancer headlines
Breast cancer care
Shine cancer support (for people in their 20s, 30s or 40s with cancer)
NHS What do cancer stages and grades mean?
Macmillan staging and grading (this is in the breast cancer section but applicable to many other cancers too)
CRUK stages of cancer
CRUK cancer grading
Don't forget the kids

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ranoutofquinoaandprosecco · 01/09/2018 21:12

@TwittleBee that sounds horrid. Hope they sort you out soon. Have you anyone with you?

So, to lighten the mood on this Saturday evening in the ranout household I seem to be losing my pubic hair in a very speedy manner, anyone else had this? I cold capped for my first chemo a week last Tuesday and have had a bit of hair loss but I wasn't expecting to lose off hair!

ranoutofquinoaandprosecco · 01/09/2018 21:14

Sorry I meant pube hair not off hair! Hope everyone doesn't mind the tmi!

WhatWouldLeslieKnopeDo · 01/09/2018 21:16

This reply has been deleted

Message withdrawn at poster's request.

TwittleBee · 01/09/2018 21:17

purple they said Im being out through the "target" pathway so should be within 2 weeks. Yeah I'll see how I feel tomorrow morning if I manage to get some sleep.

prosecco luckily DH is off work so he's with me all weekend and has promised to deal with DS through the night.
Blimey about your pubic hair loss, never think about that being lost.

TwittleBee · 01/09/2018 21:19

leslie ah thank you! I shall try to get the wind out, yet to do this almighty fart everyone seems to talk about! Yeah they did start it, just didn't finish it! Glad you enjoyed your carrots haha xx

WhatWouldLeslieKnopeDo · 01/09/2018 21:19

Eek. Maybe you need some cold pants ranout Grin

I think it's quite normal with the breast cancer chemo drugs. I only lost head hair and my eyebrows thinned. But I'm on a drug that causes hair growth as well so it's more complicated Confused

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WhatWouldLeslieKnopeDo · 01/09/2018 21:23

I didn't have that either, thankfully. I'm very prudish and would've been mortified. Hopefully it released itself gradually over time Hmm

OP posts:
WhatWouldLeslieKnopeDo · 01/09/2018 21:23

If you happen to have any peppermint tea or capsules then some people swear by them

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Saidthesharktotheflyingfish · 01/09/2018 21:27

Just popped on to say that shoulder pain isnt a usual side effect after a colonoscopy. It can be a side effect of laparoscopic bowel surgery, where the gas is pumped into your abdomen, but not when it is pumped into your bowel. Probably worth keeping an eye on that.

purpleunicorns · 01/09/2018 21:40

Grin at cold pants. I haven't had that problem so far. I had one lot of chemo and the only hair that's fallen out is on my head. My next chemo is Monday and I'm hoping that makes my leg hair fall out and not my eyebrows and eyelashes

WhatWouldLeslieKnopeDo · 01/09/2018 21:41

Hm maybe I'm a weirdo then Confused the nurse told me it could seep through the bowel and float about, which does sound a bit odd now that I think about it!

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TwittleBee · 01/09/2018 22:01

I've no clue how the things work. I'll just keep tabs on it!

WhatWouldLeslieKnopeDo · 01/09/2018 22:04

They didn't have to pin you down, did they? I have had that during endoscopies. That could cause injury I suppose. I'd dose up on painkillers and see how you feel in the morning. And obviously seek medical help sooner if you become unwell in any way Flowers a hot water bottle might help like purple said. What type of pain is it?

Presumably they didn't get as far as taking any biopsies?

I hope it eases up soon whatever it is Flowers

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TwittleBee · 01/09/2018 22:47

Yeah they did which then set me off into a panic attack as I suffer with PTSD which I didn't tell them because no one asked and tbf I haven't had an episode for a good half year+ . I just remember them constantly trying to shove the oxygen up my nose which freaked me out too. No biopsies, says they didn't get chance to get far on the report anyway. Tbh I can't recall much apart from the pain and fear. Feel stupid. Pain in shoulder is like a shooting pain. Pain in belly feels like spasms, it's actually really tender to touch too (attempted a belly message which made me yelp). Thank you lovely xx

TwitterQueen1 · 01/09/2018 23:05

oh Twittle you poor thing. Sounds awful. I hope you manage a peaceful night. I guess they'll need to try again too...

Purple ha ha - fire rear is as good as a dire rear. Still got it unfortunately. I don't know whether it's a bug or the cancer interfering with the natural processes...

ranout yes, pubes went here too Blush. Eyelashes and eyebrows were the first to go.

noodles44 · 02/09/2018 00:08

Twittle that sounds hideous, as Lesley says, peppermint tea and capsules may help. I hope you are feeling more comfortable now. That must have been awful to be held down unexpectedly.

ranout I cold capped for the first 2 and as I was starting my 2nd, my pubes thinned dramatically. They have not changed since though. I still have my eyebrows & eyelashes and shaved my legs and under my arms about a week ago, but no regrowth. After 2 without cold caps, my patchy shaved head is now a whole lot patcher. The nurses said it takes 2-3 weeks for hair to start coming out from the 1st EC I had if I was going to lose it.

I have had a run in with my ex this evening and as a result cannot sleep. That combined with it being my last day of steroids... All stuff we needed to talk about, but he hasn't wanted to burden me as I have cancer, but his not telling me has made the situation worse. Aaaargh!

CrazyDogLady87 · 02/09/2018 08:37

hello everyone.... a MN name @DameJulie pointed me here after a post i made a few days ago, her is my original post

I'm 30, I had cervical cancer 3 years ago all clear now)
friday I found a small lump in my right breast, went to the GP on Tuesday because of the bank holiday. I was thoroughly examined, and she told me she was referring me to the breast clinic as an urgent case, because of my history, I fully understood that.

I am not a stupid person I Know I am being sent as a precaution and it is likely nothing to worry about but I cannot help thinking if I have cancer again what it will do to my family, I'm not concerned about cancer I know I'm strong enough to fight it, therefore I'm not scared, in that sense, what I am scared of, is everything that comes along with it, surgery, pain, nausea vomiting etc, and I worry about the effect it will have on my family. I haven't told any family or friends (other than DH DSS) I need to go to the clinic as not to worry everyone else, as its likely to be nothing, also because everyone doubted me last time that I would pull through as i was so sick, and to be honest it really pissed me off!
Now I feel selfish for not telling them, I have told DSS if he wants to tell his mum (she is a nurse) he is welcome to so he has someone to talk to if he is worried when he is not here with us, he is 11 and starting secondary school next week so doesn't need anything bogging his mind down, we are all very open and he rarely bottles things up which is great, she can also tell him the clinical in and out of the tests if he asks, as I have no clue what happens a mammogram I expect.

basically, I suppose I am asking should I tell my mother and mother in law at least what is coming up or keep quiet and not worry them? also, my sister is due with her 3rd daughter on Tuesday and having her sweep, dont want to put a dampener on this, in case she feels i'm taking attention away from her special moment, as I haven't even been to the clinic yet, as I've already had cancer it will be worry and be a talking point, it would be a bit mean really wouldn't it...

Pandoraslastchance · 02/09/2018 09:18

Hey lacies, sorry I've been a bit mia but I've been so tired and my family are doing my head in.

Bit of back story. I was raised by my grandparents due to a neglectful mother. Grandmother died of breast and spinal cancer 15 years ago.Ive got 3 siblings with vary degrees of mental health diagnosis including autism,adhd and other diagnosis. Brother no.1 lives with grandfather as mother kicked him out a number of years ago as he challenged the golden son.

Since Xmas when grandad was in hospital I've been going over to help my grandfather 3 times a week and cleaning and cooking and keep him company which he loved as we would sit and watch all the quiz shows just like when I was younger and he loved it. Mother waded in and promised she would visit twice a week as well to help clean etc. She stuck to that for 3 weeks. I've been doing it on my own for 8 months.
Ive had to organise everything for both of them to be honest. Gp appointments, physio,wheelchair assessments, catheter supplies, medication being delivered etc
Since diagnosis I've been busy with tests and chemo and being so tired etc. Grandad understands this completely and wants me to rest etc.

In May I found out that brother had been spending lots of grandads money. Police agreed that it's financial abuse but can't prosecute as grandad refused to press charges. Grandads care bill is now £3000 and is still not being paid.
I informed Social services who said they can't really do anything as grandad is choosing to live like that (he is chair bound so how is choosing not to clean?) But agreed that grandad doesn't have financial capacity and gave mother control of his finances which is a laugh when she can't manage money and knew about brother stealing grandads money but did nothing about it.
You'd think that the rest of the family ie mother, sister and 2 brothers would have stepped up a bit as none of them work. But no. I managed to drag myself over there as ive not been for 3 weeks or so and the house was filthy.

The fridge needs condemning, the thermometer said 12° and was full of gone off meat. Stacks of dirty dishes all over the kitchen as brother doesn't wash up. Days old food on kitchen sides. Rubbish everywhere.

I visited for 4 hours on Friday and as a result I spent all day Saturday sleeping as I was so exhausted. Sad I can't do this anymore. I've raised safeguarding flags, police and fire have also raised safeguarding. Yet the social worker is happy to leave the situation as it is.

Fuck sake why can't mother,sister and brother 1 go over and clean? I'm tired of their excuses. Tired of it being left to me. I physically cannot do this anymore as the house is a health hazard now.

My partner keeps saying to not be upset or feel guilty but that's my grandad. He worked hard all his life and raised me. I owe him a clean house. The house used to be immaculate when I lived there as grandparents were very house proud.

I need to split myself in 2.

Oh and now my hair is coming out in clumps but I'm too tired to do anything about it.

TwitterQueen1 · 02/09/2018 09:37

Hi Crazy sorry you find yourself here.... tbh, this is a decision only you can make. It seems to me as if you both want and need to tell people as it's obviously a scary time and you want support. OTOH I also feel you're jumping ahead and assuming you've definitely got cancer and this is how you're presenting it to everyone (sorry if that sounds a bit harsh, I'm trying to be objective).

MOST lumps are NOT cancerous, however, you have history, so of course you're going to be worried.

I think you need to talk to someone as this is obviously a difficult time for you. Is there someone who's not family that you can talk to? I would suggest a Macmillan nurse - you can ring them and be upset and rant and rave, which I think you need to do.

ranoutofquinoaandprosecco · 02/09/2018 09:51

@CrazyDogLady87 I think there's only you, that can make a decision on whether to tell people before your appointment. I had Pre cancerous cervical cells and have been diagnosed with breast cancer, however I only told my DH and best friend before the appointment and then we've told people afterwards on a need to know basis.
@Pandoraslastchance I really feel for you. I can understand you wanting to help your Grandad but I think you need to listen to your DP. You need to focus on getting yourself as well as you can and then you will be able to help your Grandad again. It must be really tough though.
@noodles44 sorry you had a horrid night and no sleep. Will things get better with your ex now you've cleared the air? I've just snarled at my DH as he's "tired" I must be kinder!

TwitterQueen1 · 02/09/2018 09:52

Pandora I don't know where to start.... I'm so sorry you have all this stress and worry when you should be being cared for by other people. Now is the time you should be focusing on yourself and conserving your energy. Your partner is right, but saying "don't feel upset or guilty" doesn't make it happen unfortunately.

Can you allocate eg 2 hours a week to help him, as long as you feel well enough, and try not to think about all the stuff you can't do. Limit yourself to one task and just do that, not a million other things..

Having said that, tbh, I do feel that your Grandad would just prefer you to sit down with him, have a chat and watch the tv. That will make him feel much better than you rushing round cleaning when you shouldn't be. And keep on at social services...

CrazyDogLady87 · 02/09/2018 11:00

@TwitterQueen1 hi! thanks for the reply, how are you? you are right this is a decision only I can make. it definitely is scary. I 100% see how you feel I am jumping ahead and assuming I've definitely got cancer it's not a bit harsh to assume that, I would assume the same after reading my post, I am remaining positive and chanting internally most breast lumps are nothing sinister... , I am just being cautious I have history, so best be safe than sorry.
however my family also have a history of assuming the worst, hence wondering if I should tell them about the appointment, or wait until I know something, my logical mind is telling me dont bother saying anything yet and if it turns out to be nothing don't say anything at all, because if i do and its nothing they've worried and fussed around me treating me like a delicate vase and generally annoyed me with their "you should/shouldn't do this" etc.

however I was blindsided last time, I thought there is no way I have cancer, yet it was aggressive and almost killed me. so, I am preparing myself for the worst and having a plan in place IF I am ill, looking at the statistic of effective treatments for certain stages, preparing myself in this is what could happen here and there, making notes of what I could and couldn't eat before what worked with all the things that come along with the affects of treatments what didn't etc not because I have set my head on I am sick because I'm a bit of a control freak and like to be prepared I was in a daze last time and I didn't understand half of what was going on I didn't have a voice.
I couldn't go in if I'm sick again not knowing my options like last time. it really affected my mental health, as did having my family knowing everything in the run up to my diagnosis but I do feel selfish not telling them, they would want to be supportive and be there, they just do it the wrong way. I have my friend i could talk to whom is trusted but she has a lot on her plate right now i do not want to burden her, she has recently lost her father and is caring for her sick mother, i dont think it would be fair to dump on her. I think I will give Macmillian a ring.

@ranoutofquinoaandproseccoI'm very sorry to hear this, how do you feel about it? I think a need to know basis is good, but I'm the sort that nobody needs to know my business haha!
yes, I am one of those really awkward people! the only people who need to know outside of my family home is my DSS mother so she can be here to talk to him about his worries and explain things we maybe cannot as she is a nurse, and we can discuss rearranging her pick up days for the appointment, if necessary. also If it is cancer his school will be aware so he has support there too swell as from DH and me, and his mum. other than them nobody needs to know, however my husband will need someone to talk to so we do need to decide, i just dont know if we should wait until after the appointment or tell someone it is coming up...

i make zero sense to myself so i don't know how i expect anyone else to make sense of what i am saying!!! hahaha

purpleunicorns · 02/09/2018 11:37

Crazy I have cervical cancer, I also found a lump in my breast a few month ago and it turned out to be nothing serious. 9 out of 10 lumps are completely harmless but you're obviously going to be more worried having already had cancer
I think if I was you and felt like I needed support then I would tell people but if you've got a good DH with you then I don't think I would tell other people but that's entirely your choice Thanks

CrazyDogLady87 · 02/09/2018 11:48

@purpleunicornsI am pretty sure this lump is nothing, best be safe though right. my DH is amazing he truly is, I think my best option is Macmillian until I know more for sure. i will give them a ring Monday.
are you currently receiving treatment/surgery? how are you feeling?
have you a good support system, i hope it isnt too hard for you. xx

purpleunicorns · 02/09/2018 12:53

I have a brilliant DH too so I'm lucky. I'm restarting my second lot of chemo tomorrow, it was put on hold as the last lot caused a fistula so I had to have a stoma fitted. I feel rubbish at the minute so I can't wait to start treatment again. I know I'll regret saying that a few days after chemo when I feel like shit but I'd rather feel rubbish knowing that it's from chemo rather than the cancer.
The only time I've had anything to do with Macmillan is when I phoned them about benefits and they were really helpful so hopefully they'll be able to help you too

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