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Cancer support thread #82

999 replies

MrsPnut · 12/02/2022 22:14

Welcome friends old and new, to the most supportive thread on Mumsnet. Everyone is welcome whatever stage you're at (fears, diagnosis, treatment). Introduce yourself and say Hi

Good luck to everyone having treatment this week. Hugs to all - especially if you're feeling rubbish (physically, mentally, or waiting for results - ugh

OP posts:
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MissSmiley · 29/03/2022 20:12

@TwoBigNoisyBoys big hugs to you, your chemo sounds really hideous, I hope it's over soon

I've had a rather dramatic afternoon, I took a sachet of that stuff you all recommended that's like movicol this morning, I had some lunch about 2pm and then the pain started but it was like nothing else, I ended up on the bathroom floor shouting out to my son to go get his dad (he's lives round the corner) who arrived ten minutes later and called 999, it took a couple of hours for the pain the subside and I did manage to open my bowels before the paramedic arrived but my insides obviously still have a lot of healing to do. I refused for them to take me to hospital and felt massively embarrassed that it was all over constipation but the pain was a scream out loud 9 out of 10 so I didn't have much choice! They left about 5.30pm. I daren't eat anything now in case it happens again.

mowly77 · 29/03/2022 22:56

@MissSmiley I am so sorry that sounds hideous - I honestly think constipation is one of the worst side effects of treatment because it’s such an everyday thing but when it goes wrong it goes WRONG. I am glad you have managed to move your bowels at least. I had to go to ambulatory care for the day thanks to constipation and a UTI the other week honestly so much pain, same, like a 9. How can it be so bad aghhh.

Yes to everyone asking re: money stuff Macmillan are great on helping although I’m self employed and will get the grand total of £77 a week ESA. Now I’m not sure if this is right or if this is because my nat insurance contributions have been lower in last few years due to maternity leave and then the pandemic. More admin to check that. And applying for PIP as well.

I actually got to see an oncologist today and was given some letrazole. Now another wait for the chemo team to be given Pablio whatever I forget whole name and regular injections for my bone mets. I have fallen into a black hole of depression though probably because it’s all so fucking real and wow what a shit way to go. Oncologist had ticked box that treatment was to “prolong life expectancy” not try to cure etc. Obviously. Sorry to everyone else on your first time around with cancer because I am definitely not saying you will die. You most probably and hopefully won’t. But I know that I will of this awful disease and it’s just a when now not an if. And I know that so many people talk about those with metastatic cancer who live for bloody years with it but my cynical self just thinks yeah well you only hear about those ones don’t you - no one rushes to tell you about the ones who die within 6 months or a year. I don’t think I’ve even managed to do a third of the things I want to do for my daughter as she grows up (letters; cards etc) & it all feels a little futile anyway because it will be so awful for her when I’m gone. There will be so many times when she will want my physical presence and those letters and cards ain’t gonna cut it.

Feeling SO WRETCHED for her and SO SORRY myself. Sorry.

Fantasea · 29/03/2022 23:40

@mowly77 you poor thing, of course you feel wretched, it's so unfair. I'm sending you a big hug as I'm sure you need it Xxx

PaddingtonStareBare · 29/03/2022 23:59

@mowly77 I am so sorry you're feeling this way. You are not alone in your thoughts I promise you. Not that this offers much comfort to when we are feeling shit about it all and it all fucking sucks, but I'm here with a virtual handhold as are others.

TwoBigNoisyBoys · 30/03/2022 00:00

I’m so sorry to read your post @mowly77, nothing I can say to make you feel any better. Sending you all my love xx

Podgedodge · 30/03/2022 00:11

@mowly77, I am so sorry to read your post. It’s a really awful situation. Thinking of you.

Silkierabbit · 30/03/2022 01:10

Mowly So very sorry for what you are going through, it is so awful at such a young age with a young child. Sending love and hugs. Yes I believe £77 a week is the rate for the lower rate of new ESA, you get more in the support group. Though I don't know with stage 4 if you should be in the higher rate where its about £40 more a week.

www.macmillan.org.uk/cancer-information-and-support/impacts-of-cancer/benefits-and-financial-support/employment-and-support-allowance

Sorry you are having issues MissSmiley I think you should carry on eating though, maybe phone team for advice. Constipation is horrible and must be so much worse after your operation. I am just doing chemo and they give you so many anti-sickness meds you end up with really bad constipation you bleed from, really bad indigestion and chest pain. This second round I am trialling no sickness meds and its fine so far, the chemo line were not overly keen but are now impressed how well its worked, initially they said just take anti sickness and constipation tablets at same time but that seemed daft. Its going well so far.

I have had wierd side effects from chemo and am having a call to discuss them tomorrow. Lots of pain in eye socket and lost all feeling in gums for 2 hours, jaw pain etc as well as pins and needles in right leg and feet and hands. They are not exactly sure what is going on.

Today is my birthday but has been pretty awful. I had chemo on Monday and felt awful after it in lots of pain and very worried about permanent teeth and eye issues due to pains. Then at 12.10am DD started having a go at me for not booking her trip to Paris as her socialising was far more important than my chemo and she has continued like that all day ranting at me or sulking. I love her but she was a nightmare today and so mean and also never said happy birthday or happy mother's day. DH is amazing normally but did not wish me a happy birthday, get a card or present and DS is mute so obviously nothing, was same on Mothers Day. DH is taking so much time to help me with cancer can understand him and DS is not capable alone but DD was super hurtful. She has short phases like this then goes back to being lovely and like I am her best friend, its strange but just have to try and not take the hurtful times too personally. She did say if I have a holiday after chemo and see any of my friends she will refuse to come and get her brother to refuse to come too. I was initially very hurt but then thought actually might take her up on that, half the price and no arguments.

Glad you had a nice time in Seville MrsPNut.

Love to everyone else.

peridito · 30/03/2022 09:28

Mowly I wish I had some comforting words ,but it's just so fucking shit .
I'm so so sorry .I'm glad you can say it on here ,that's something I guess .
So ,so with you on the constipation .Just when it feels like life can't get any worse along comes more pain and humiliation .

peridito · 30/03/2022 09:32

I had chemo in the past and wish I'd had the idea (and kind friends to make for me ) of turbans/head wraps and large co ordinating earrings .

Saw it on "your body uncovered " worn by the hugely amazing Annabelle and thought I'd post the tip on here .Hair loss a horrible thing .

Cancer support thread #82
Cancer support thread #82
MissSmiley · 30/03/2022 09:44

@Silkierabbit Happy Birthday! I can't understand why your husband didn't get you a card at the very least, did he forget?
How old is your daughter? I know it's hard on them too, coping with a parent going through chemo but it's completely awful to treat you like that, I really feel for you.

Fantasea · 30/03/2022 11:46

@mowly77 I think you automatically go into the support group for ESA with a cancer diagnosis like Silkie says, I get £114 a week and I'm stage 3c. I was also self-employed when I applied Xx.

@MissSmiley you poor thing, constipation sounds so mild in itself yet is hideous when it happens badly. Perhaps a call to your team to get some advice on eating whilst you're still recovering from your surgery would be the best thing to do. When I was hardly eating, I became massively constipated.

@Silkierabbit Happy Birthday Cake! Sorry your DH didn't get you a card and sorry to hear about DD. It's so hard dealing with cancer and having to manage everyone else's reactions and emotions to it, especially when it should be your day.

TopOfTheCliff · 30/03/2022 17:55

Happy Birthday @Silkierabbit let’s hope it is the start of a better year for you. Now the bowels are uncorked things shouldn’t be as bad again. You just need to keep eating and hydrated. Easier said than done.
Thinking about your DD if she is old enough to go to Paris she could research it and book it herself. My DD flew to Nice and stayed at a Youth Hostel there after GCSEs with her friends. It was easier for a group of girls to book that than a campsite in the UK! I would be so hurt by her unkindness I would be having words. But you are probably a kinder nicer person than I am. Perhaps you could plan a delayed birthday after you finish chemo to give them a second chance to show they do care about you.
I’ve just had a Tip Trip which makes me so happy. DH was out so I got rid of lots of stuff while he wasn’t looking. My arm is still waking me in the night. I wonder if it’s the nerve growing back after the Total axillary node clearance which was 15 months ago now. I’m getting lots of electric shocks when I am lying still. I’m trying to ignore it and crack on.

Regards to all. When you are going through hell keep going, as someone said.
Top

TopOfTheCliff · 30/03/2022 17:56

Oops the first para was for @MissSmiley! Sorry…

mowly77 · 30/03/2022 23:12

I do like the phrase when you’re going through hell keep going @TopOfTheCliff

Because what else is there to be done.

Love and good thoughts to everyone on the thread noone wants to be on tonight.

mowly77 · 30/03/2022 23:16

BTW thanks @Fantasea I’ve realised it’s automatic initially and after the assessment which I’ll send off tomorrow I should go into the support group as it’s stage 4 not the work group.

Silkierabbit · 31/03/2022 03:16

Mowly So sorry for your situation again. I think stage 4 so young with a young kid it is a nightmare and its normal to be very depressed, anxious, think why me, grieve for the life you should have had. I have been lucky to have been revised down from it but when they the surgeon told me I was probably stage 4 as a second mass had been found and it could be mets I just collapsed and started crying for my son as he won't cope without me. I also tried to write letters and couldn't though did do a will, also still not signed but at least wishes are known and am trying to train husband and found someone to have the kids if we both die and those things were so difficult and emotional but did give a bit of reassurance.

I found talking to women in a similar situation helped and I am lucky that a few got in touch with me and two of us talk daily. You are welcome to DM me if it helps though I am late 40s so older and also now revised down to stage 2B and will do what I can to help. I am doing chemo at the moment and can feel like rubbish at times, and on steriods I get very waffly and determined and positive but anxious so my messaging on Monday to Wednesday needs to come with a steriod induced warning. I've heard the Facebook group Stage 4 deserves more is very good and maybe worth joining. It is harder being so young as most breast cancer patients are much older than me, its funny to be considered young again at nearly 50 and even at my age I find all the photos of grandchildren on the groups a little difficult at times thinking I may not see mine but I am on a general breast cancer Facebook group so its a mix of stages. I also find sometimes you are better not to do cancer things all the time as it just switches your mind to it, very hard but try and keep it down and have time for other things. Also I spoke to a lady on here a few years back she was stage 4 with bowel cancer and sadly died at 27 or so without having kids but always managed to be OK sounding and I asked her how she wasn't really upset all the time and she said sometimes she was but she realised early on that those emotions were just wasting the little time she had left and she was not going to waste the precious time she had left on them and said they were exhausting as well. I am not sure if I could reach that point as well as her but it was inspirational and did make some sense and I hope it time at least some of the time the hell feelings subside and you can enjoy some time with your family. I would also try counselling and / or meds if you think meds would help. And apologies for my steriod induced rambling.

MissSmiley hope things are improving and you can eat at least some of the time without too awful consequences.

Thanks Top yes my DD is 16 and is capable of booking things, its the money she is after and she spends everything given to her and more. Her brother is the opposite and a mini Papa who hates spending money and even negotiates his school dinners down to 50p a day. A bit embarrassing as we have the money for school dinners fine and as he just eats plain food like plain pasta it looks like he is asking for a discount as we can't afford to feed him but it helps balance DDs spending splurges. She appears to be calming at least, it seems to be triggered on my chemo days, exactly when I don't need it but she is under a lot of stress too and things should improve when her GCSEs are over and my chemo is finished which is mid June. She is normally a lovely girl now and very bright and capable just short bursts of foul moods which are coming in my direction whilst I do chemo, no HRT and steriods, normally I am the most patient and kind person with kids but urgh not at the moment. Though I think she is learning I will answer back when on steriods. Grin I hope you get on your travels soon, that is what is keeping me going the thought of an end of the worst bit in 3 months and travelling again.

I am still having pain in the eye socket and watering right eye connected to it. The chemo line think its connected to chemo but do not know exactly what is it but think its OK unless it causes eyesight changes when it would need immediate evaluation as those can be permanent. I also got a numb gums for 2 hours and jaw pain, am wondering if will have any teeth left by the end of this fun. Though my worst fear is losing my sight. But the hospital are at least helping even though they just say what I have is rare and they don't really know about it. My private dentist is amazing so can go to him part way through as well and he has already gave me a full check a month before starting and fine and high fluoride toothpaste and an hours talk on things for free so he is doing all he can. But getting a lot of neuropathy symptoms and bone pain which isn't great for teeth. When my gums went numb it felt like all my teeth were floating and about to fall out at once Shock but felt them and they are attached, at least for now. Keep reading tales of 8 teeth falling out after chemo and dental bills well into thousands. That's the issue with these forums but then at least pre warned I went to dentist first and he did all this so was good to know, hospital did not say go to dentist at all but you do need to. Just wish had gone to optician too. Guess I still could but so many medical things are feel bleugh with chemo its the last thing feel like doing.

Love to everyone else. Will stop my steriod rambling here. Sorry.

SewingBees · 31/03/2022 08:36

@silkierabbit I'm worried about my teeth too. I'm post chemo now but I've never had good teeth and thanks to lockdown I haven't been for even a check up in nearly 3 years. I was meant to go yesterday but dentist cancelled and rescheduled for 2 months from now, the third time that has happened. My daughter is losing her baby teeth and I desperately want her to have a check up, but same story for her. I've had abscesses in the past and do not ever want to have one again, so for me regular dental check ups are a must, and going so long without one is making me anxious.

I have managed to get my eyesight tested and it has deteriorated a lot in 2 years, some of it due to chemo I think. Permanent glasses for me now - varifocals too which makes me feel a lot older than my 49 years.

TopOfTheCliff · 31/03/2022 08:42

@Silkierabbit your steroid ramblings are great, very Joycean! Your DS sounds a real character. My three DC were all so different around money. DD1 spent everything, never had savings and was always broke. DD2 was prudent, saved wisely and spent little. DS took the lunch and bus money then cycled to school with a packed lunch, invested the money and doubled it! They are more alike as adults now but I am sure their approach hasn’t changed. I treat them all the same and if one needs money I reward the others with the same amount to keep it fair.
I expect your DD feels bad about how she is behaving when she isn’t stressing about exams and shouting at you.
Your weird facial symptoms sound a bit like the neuropathy I got with docetaxel. My face was tingly and I had a tic round my eye. It all settled thankfully.

@mowly77 glad you found some comfort. I am one of those people that make black jokes when things are all going wrong. Working for the NHS it’s a coping mechanism but it also applies when out in gales at sea or cycling up steep hills in the rain. Your situation is so dire that you would be entitled to behave any way you feel works for you to get through the days. I hope it feels easier once you start on treatment. Rant away here all you like, we can take it! It’s bloody unfair after all.

I am still having severe pain from the Zolendronic acid infusion but if that’s all it is I can cope as it should wear off soon. I’m a bit worried it’s caused carpal tunnel syndrome as both my hands are tingly and dead and I can’t make a fist with either hand. It seems unlikely to be lymphoedema as both hands are affected. I’m buggering on regardless as activity doesn’t seem to affect it. I can still drive, dig the allotment, sail my boat and paint my house and waste time writing rubbish on Mumsnet.
Love to all, have a good day and keep warm!
Top

Silkierabbit · 31/03/2022 08:51

I had to go private for a dentist to get seen, its not cheap but if you can afford it I would do it as the longer you wait the more serious the issues can become. My private one is so kind and charging me less than he should and always strokes my arm and is very reassuring and patient. I did at least see other people having things like 8 teeth needing removing after chemo Shock and I realised needed to go prior and he went through that I needed higher fluoride toothpaste which is on prescription and possible a mouthwash from him during chemo. Had x-rays and 2 fillings pre chemo and know I was fine then but it really feels like my mouth is being wrecked with jaw pain and numbness and I suspect lots of dental issues will emerge costing thousands and teeth falling out, urgh.

I also suspect I will now have permanent eye issues and probably should see an optician now but there are so many medical things and I don't feel great and have to avoid covid. But it does seem if you get regular dental and optician checks it helps. Not the bank balance though. Its depressing. I am same age and feel about 80 with these things. I really don't know if made a mistake agreeing to chemo, you see lots walking with sticks as well and is like the half dead in there and just being grateful you aren't dead which is a big thing but want some quality of life as well. Gosh miss my pre cancer life.

Silkierabbit · 31/03/2022 08:59

Thanks Top for your politeness over my ramblings. That is what I am hoping for that these changes will not be permanent, temporary for 3 months I can live with but a permanent decline, urgh but will just see dentist and optician when I can motivate myself.

I do try and even money though DS really does not care about having money, he says when he is older he will give DD £20,000 as she will have lots of debts and he will have lots of savings and she can pay them off. I hope she will get more sensible but don't hold out much hope. I was always very sensible and still am, so glad I was so that I don't need to work through cancer treatment. Really feel for people having that (though weirdly jealous of those on full sick pay with private medical care like I used to have). I have developed some weird jealously like of people who live by hospitals and can walk there.

At least on steriods I get plenty done, one thing was worried about was not achieving anything but have been filling in forms and sending e-mails here there and everywhere with my steroid induced thoughts. DD has just sent us pictures of snow and said its snowing so think she is getting more cheerful again and at least its Easter holidays soon.

Silkierabbit · 31/03/2022 09:30

argh now massive nosebleed.

thereisonlyoneofme · 31/03/2022 10:40

Ive had another change of consultant, this is number 6 ! Its so disheartening, just when you feel youve got one that understands
and you connect with (usually female )

Thymeout · 31/03/2022 12:31

@Silkierabbit

I have had the pain in the socket eye thing. No chemo involved, just too much lying on the sofa watching boxed sets while convalescing. I happened to be seeing an eye consultant about something else and he had a look and said it was muscular. Cured by making sure I was watching TV head on, not slightly sideways, one eye closer to TV than the other.

TwoBigNoisyBoys · 31/03/2022 13:31

@Silkierabbit just a quick message….ask for Naseptin for your nose bleeds, sorted mine out x

MothralovesGojira · 31/03/2022 21:29

Hi everyone!
I'm just after some advice and your thoughts on a few matters regarding my treatment and how much you were all told or consulted about prior to chemo starting if you don't mind?
I was diagnosed with BC Hormone- but HER2+ in January and had a lumpectomy and sentinel node removal mid Feb. I was told that I'd need chemo, Herceptin and radiotherapy which is ok and I've been preparing everything that I need to in readiness for work absence and household/family stuff - so all good so far.
I saw an oncologist last week who told me that treatment would start w/c 11th April or week after and we signed all the consent forms so that I wouldn't have to go back and see them again because I'm working and working as much as I can at the moment so that my lovely colleagues can have time off before I have to take sick leave again - job is fairly full on and physical and there's no cover for people off sick or on holiday so they have to cover my absence. I asked at the time if someone would be in touch with to run through what would happen and time scales etc and they confirmed yes, I would get a call and a letter to confirm exactly what would happen and when. When I got home from work yesterday I had two letters from the hospital. One for a blood test on Tuesday next week and another asking me to go to the Maggies Centre the day after (Wednesday) so I phoned the only number on the letter (cancellations) to ask what the Wednesday appointment was for and if both could be done on the same day because I'm working next week and can't take two periods of time off but could manage one. No problem with that and blood test changed to Wednesday and found out I need to go to Maggies to have a run through of what happens in the chemo suite etc so I only have to take a half day off.
I'm about to put the phone down and thought to ask about chemo start date and the lady at the other end said "Thursday".
"What the 14th or 21st" I ask.
"No the 7th" she replies and asked me had I not read the schedule that was sent?
Anyway, it turns out that no one thought to send me the schedule of treatment. So now I'm rather upset because it turns out that I have TC on Thursday and Herceptin on Friday which is completely different to what the oncologist told me last week.

So, can I ask for your experiences of:
How involved you were in deciding when your treatment could go ahead when you have to factor in work and home life?
How were/are you kept informed of what was/is happening and when?

I would be very grateful for your thoughts and experiences. Please say if I'm being precious and that I should just suck it up and be pleased that they are helping me.