Cancer support thread #82

[MrsPnut]

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

@thereisonlyoneofme Maggies are smaller specialist centres that grew out of a small charity with Scottish roots so lots there BUT anyone with cancer can use them, and anywhere they like so if there is one at all convenient geographically for you it doesn’t matter which hospital etc you are being treated at. Eg there is one at Barts hospital in London so if in London can go there. Obvs much easier if actually attached to your own hospital but still … I think they do a range of advice, counselling, support groups and also art therapies and such. They look stylish which is deliberately part of the plan eh,

@HerbalRefreshment I was looking longingly at the Maggies in Sutton! Both Sutton and Chelsea are roughly same distance from me funnily enough but I can get train to London if not too sick as can’t drive, & have friends there to stay with, so Chelsea it is if please god I don’t believe in they’ll have me as an NHS patient. Referral made, everything crossed.

Meanwhile I struggle on at the local. Had a second procedure today to drain fluid from my lung. It’s horrible frankly but it helps my breathlessness temporarily although my lungs still feel fucked. For obvious reasons. When treatment starts might help with the inflamed lungs and fluid or I have dazzling array of ways to keep lung dry- a three day hospital stay and surgery or a port in me for “a few months” to drain it off constantly.

Do y’know on my second rodeo I do feel like I’ll be covered in ports any day now - like so many of you

Thinking of everyone on this thread and their own struggles

Sorry to hear everyone's tales of woe recently. I guess it's that kind of thread though. At least Miss Smiley has got home from hospital at long last.

I finally succumbed to Covid and have had two weeks of feeling like I've had a really bad cold & even more fatigued although I don't know how that's possible. I've also had all treatment stopped to see if it's Herceptin or the hormone blocker causing my liver function to be adversely impacted. Going back on Herceptin next week to see it that's the culprit.

Breast cancer was on TV this week in the Kate Garraway Your Body Uncovered programme. It's on BBC iplayer if anyone wants to see it. At least they acknowledged there were different types of breast cancer which often seems to be overlooked in the media.

Anyone else got any strategies for The Fear? The nights are the worst. I can’t deal with the fear of dying and leaving my tiny little girl without her mummy. Even though I’m tired as fuck I’m just too scared to go to sleep.

I’ve been putting the Archers omnibus on which helps me drift off but I’m missing some major plot points - Amy and Chris how could you?!!

I think the fear of leaving your dependent child is the hardest thing about cancer Mowly. I don't cry that much but almost every time its the fear of leaving my children especially my youngest with SN who is mute without me to help them and there isn't anyone that obvious to help other than his sister but she is a child herself so that seems wrong.

Dying itself I think some women with cancer just think it won't happen to them and cope like that, generally the think positive ones. They seem to be more stable emotionally but I cannot think like that or have no plan but everyone has their own way of coping and do whatever works best for you. I would suggest counselling to help you find a way.

For me with death for myself I do not fear it for myself as it would be the end of the cancer / nothingness or I would be in heaven with people I love and we'ld eat lots of nice cake. But I really fear for my children. For me I have found it very tough but preparing a plan for if I die and teaching my husband and a friend to do what I do helps a bit, it is horrible preparing a will and naming someone to have your children but it does give a safety net for your children. My friend agreed to do that. I am also teaching my husband about the EHCP and also encouraging him if something happened to me to ask for help. The other thing is trying to get the best treatment possible, and you are doing all you can to get that and also I read exercising can help with reoccurance risk, obviously does not apply to you but I think 20 mins exercise a day is good for your body and mind when you are up to that, some days you won't be. When you can get a day / hour whatever out with your family take it. I did a few days in Edinburgh in Feb half term, weather was awful, but it was lovely to be with my son and have a few cancer free thinking days. Also have time not thinking about cancer, as much as you can ideally, that helps you feel more normal. Take all the support you can get and ask for counselling asap. Let yourself sleep if you can, do not fear sleep, it will help your body build strength, my sleep is all over the place some days no sleep, some days nothing but sleep but do not worry too much about that. Sending you lots of love.

Thank you @Silkierabbit I’m awake again at 5am and your words brought tears to my eyes. Such lovely and sympathetic advice. I am so sorry to hear you feel the same too especially with your youngest SN child. It is pure hell isn’t it some days. I cry in hospital as they always do something horrible and painful to me there anyway and it’s easy to cry for my daughter then as they’ve seen it all before and I feel like I have to stay strong at home.

I totally agree with you. I don’t fear death for myself, I’m an atheist anyway so I believe it will be just like before you born … peaceful nothingness and you won’t know anything about it. It will mean an end to the cancer, the pain and the horrible treatments. But leaving my daughter - that’s a whole different matter.

I am doing what you say, I am preparing and my DP has agreed we need to make wills although he was in denial for a while. Also whenever I do feel better (days few and far between until I start treatment I think because my lungs are fucked so I can’t walk far) I try and get outside with my daughter and do something with her; just simple things at the moment. She is only 3 & a half and just wants mummy to get out of bed, she doesn’t understand obviously and it breaks my heart.

I think I will feel better once we have wills and I am able to put in writing my wishes for the future including who will look after her if DP dies before she’s an adult, and I have done all my preparation for her eg leaving her letters; birthday cards; a few little presents etc. things for her throughout her life. Prepare for the worst, hope for the best.

I find it impossible to stop thinking I have incurable cancer; it’s just at the back of my mind constantly. I’m going to try to get some counselling. And I’ll probably feel better when I start treatment as I'm still in limbo with only a giant bottle of Oramorph for company.

Lots of love back to you and all the MNers in this awful situation.

Good morning @mowly77 and others up early. I woke with arm pain and lying down seems to cause it so I’m drinking tea and pondering your posts. I’m one of the cheerful deniers who wilfully refuses to look at the worst case scenario. When reality intrudes into my positive world I fall apart briefly, then start comparing myself with others.
There is always someone worse off. There are new experimental treatments. I am old and my children are adults. We all have to die of something and cancer is quite a good orderly way to go compared to sudden cardiac death or a lingering neurological condition like MND. Then I decide that if I have a limited time left I don’t want to spend it worrying and miserable so I will shut the door on all that stuff and get on with my life.
When all the above wears thin and The Fear intrudes it is hard to bear but sitting with it for a while and practising breathing and a bit of yoga helps. Then my brain gets bored and moves on again to fretting about the shopping delivery or getting the car serviced and The Fear recedes.

I was talking about this with my friend who has just finished OC treatment and been abruptly discharged from oncology which is freaking her out. Our conclusion was We can’t affect the outcome by worrying about it so let’s party!

One of the things I am most grateful to cancer for is discovering my inner strength which comforts me knowing whatever happens I will be able to cope. That and getting me out of the NHS into retirement during a pandemic!

If I was struggling and heard someone being annoyingly upbeat it would irritate me so apologies if that is the case. I recognise increasingly it is a coping tactic but it works for me. I think you are being amazing in your circumstances. Sending love and sympathy. Top xx

I’m sorry, Mowly. Like you and Silkie, I’m almost weirdly meh about death itself but leaving my children is impossible, it can’t happen. Trying to reconcile that with the fact that it actually might is like vertigo, like constantly stepping on the missing step.
My therapist is trying to give me space to experience that dizzy terror and also permission for it to be awful. You said you have to be strong for your little girl and probably for everyone else and there needs also to be permission to rail and grieve and acknowledge that it’s fucking awful, that it’s not fair, that no-one else IS going to raise our kids as well as us and they don’t deserve that either.
Than we have to stand back up and be practical and make plans for the worst and let everyone feel better by agreeing that yes, it probably will be ok, to the point that we almost believe it ourselves -then step on the missing step again.

Im afraid of death, but even more afraid of the run up to it. If I knew I could check out myself I would be much happier. i dont have any family so dont have the thoughts of leaving them behind or how they feel which is a "plus" I suppose.

Hi, i know the fear all too well. I don't have a diagnosis yet i'm just waiting for my biopsy next week now to confirm what the mass is but just the thought of hearing you have C and dying and leaving my boy (3) ia killing me. I can't eat and sleep through thr fear

@AFB2022
Did you manage to get through to your GP? Seriously, there is medication that will help. It won't turn you into a zombie, but it will keep the lid on the blind panic and help you to function more normally. This could be a long haul. It sounds as if, whatever it is, surgery will be involved and you need to do the best you can for the speediest recovery. Eating and sleeping properly will help you cope with your mental state as well. Take care.

@Thymeout yes i'm getting a call back on momday from the gp. Feel embarrassed to ask for meds but i need it. Surgery will defo be needed because i can't live with whatever it is in me.

AFB22
No need to feel embarrassed! The first time I asked my GP for help, she said that it was brave of me to admit that I needed it. You've had all this waiting and worry and it's used up your chemical reserves. It's physical, not a reflection on your character. It's not being feeble. It's being sensible.

@AFB2022 I waited until I was absolutely desperate before seeking medication from my GP which I'm cross about now as they've made such a difference. I was expecting a load of questions but it was really easy. Honestly, you'll feel so much better for it Xx

@AFB2022 definitely agree with other PP. I have a lovely sympathetic GP and I hope you do too. Please ask for meds to help cope; and if you’re not sleeping a short course of sleeping pills will help. You need to sleep. My sleep is all over the place and I slept all afternoon now wide awake at 3.30 am
Although thanks to clock change I know it’s only 2.30!! But I have taken a sleeping pill as I want to get up tomorrow and be there for my daughter and she has a birthday party in the afternoon and I’m determined to get out of bed and go with her.

The wait and the worry is awful I really sympathise but a good GP is there to help you so please do not feel embarrassed and ask for the help you need. Best of luck.

@thereisonlyoneofme I hear you. I’d I didn’t have a family I’d probably try and figure out how to take an overdose when it was near the end instead of hanging around in pain. Why we don’t have Dignitas in every country I just don’t know.

@thereisonlyoneofme *if

Can I ask some advice?
As I mentioned earlier up thread, my Dad is in hospital. He is recovering but is still very ill. I would love to go and see him. I know I couldn’t make the drive safely, but I could get there by train. I have 2 more pax chemo sessions to go, and my next one is on Wed. I was wondering about going on Thursday as I usually have a days grace before all the side effects kick in and I don’t need to take any meds till Friday. It’s a 21/2 hour train ride with obviously little journeys between home and stations and hospital.
Is it safe for me to visit someone in HDU the day after having chemo?
TBF the pax so far has hit me much worse than the EC did, with a lot of exhaustion and pain so I have been put on gabapentin, which helped last round but knocked me out.
I really just don’t know what to do for the best. Any suggestions?

@Podgedodge I know you're desperate to see your dad but that's a really long journey, I've got no advice about the chemo and how safe it is. I know when I was in hospital the visits were limited to an hour and even then I had to cut some short because I was feeling so unwell. Is there anyway you could FaceTime him? Call the ward and maybe one of the nurses will help you? I wouldn't go all that way after chemo.

Hi everyone, I'm still losing weight despite the fact I haven't opened my bowels for ten days now! Waiting for a call back from the surgical nurse specialist who I'm hoping will recommend a good laxative, I'm a bit nervous though with my new digestive system, don't want to burst any stitches

Hi all, I didn't know where to post this really, so am trying here!
Are any of you self-employed? I don't know whether I can claim ESA.

Basically, I have had surgery for breast cancer a few weeks, and took a few days off to recover, but have worked since then. Obviously had no income for that week.
I am due to start chemo and I will work when I can but I have no idea when or how often, I just know that, realistically, it won't be full time like now!
I have full NI contributions. I just see that you can only claim ESA if you earn under a certain amount each week. Some weeks I will, some I won't, but surely I can't change it weekly.
Any advice would be greatly appreciated :)

@Serendipity09 I claim ESA and was self-employed at the time of my diagnosis but my situation was different to yours in that I won't ever be able to return to work. Oh dear, I can see the problems you face with your varying weekly income. Perhaps a call to the DWP to speak to a benefits advisor could give you some information?

@Fantasea thank you for your reply. I am sorry you can't return to work My income varies weekly anyway, but will do so much more during treatment. It's all so complicated! I will need to speak to someone I think.

@Serendipity09 thank you for the flowers Xx. Thinking about it, the very nature of self-employment is the unpredictably of income (don't we know it) but now you have this added variable. I'm wondering if the DWP would be prepared to accept an 'average' perhaps, providing this doesn't exceed the threshold?

yes, I know they do that with Carers Allowance for the self-employed. Nothing is easy is it! I am 45 and haven't had a gap in employment/self-employment since I started work at 15 so this is all so new to me, and so difficult to navigate!