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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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AFB2022 · 31/05/2022 07:58

@HelpIcantfindaname thank you. I hope all is ok for you when you get the results back. Keep positive (easier said that done i know)

Podgedodge · 31/05/2022 08:39

@Billandben444 thats a big op not to at least stay overnight!
But it’ll be so nice to recover in your own bed.
Everything crossed for the big 70th birthday, hope it’s a great party.

KitchenFishCurry · 31/05/2022 11:12

@Billandben444 I had lumphectomy with reconstruction and lymph node biopsy last year as an out patient a four hour op versus mastectomy would have been 2 hours. I was fine to go home but i was told if I went to theatre late I may have had to stay overnight. My husband took me in on his way to work and I was home before him having been picked up by DD. I was a bit dopey the next day but otherwise fine , make sure you do the physio exercises. The drain was a bit of a nuisance (felt like the Ood from Dr Who) but was only in for a few days op Monday drain out Friday.

Silkierabbit · 31/05/2022 17:18

Hope counselling and / or meds will help AFB As you go on you do get more used to accepting your future even if it isn't the one you imagined you would have and I think the younger you are now the harder it is to adjust.

I do not fear death as I won't be around then and if I had been born 100 years ago its all my life expectancy would have been if die in next 5 years or so (only 10% chance of that) and done what I wanted work wise and travelled a lot. I would just be worried for the kids esp my one with SN. My worry is always much more being in treatment, poor health, being dependent on people and will those people be around later. But worrying about that all the time just ruins the time you have got so its best when you can just take it day by day, stage by stage when bad, do nice things when you can like days out and holidays so you realise every day isn't rubbish and you have something to look forward to, get the best treatment you can, I also like to research it and get as many facts as possible though others are the opposite but in breast cancer there is a free online predict breast model the NHS use which gives you survival stats based on your data which I found useful. Mine is about 30% chance of being dead in 10 years and more 50%-50% for 15, but 15 year data is old and things improve all the time. But it is odd not knowing will you be someone who is very lucky as has normal survival or will you be very unlucky and die within 5 years. I tend to think I will be around the average, as I am normal weight and also medicine does improve so hopefully will be more than 15 years but already that would take me to 63 which would be enough even for SN child. I have made a will which helped me feel I had covered helping those left behind if the worst happens, still have to get it witnessed though but that seems very final but on my to do list. People cope in different ways, and also depends on your age, family, income, prognosis etc as well as personality. But you have to find what works for you, its worth noting when you feel better and when you feel worse.

I also had mastectomy as outpatient and was thrown out in a wheelchair with no painkillers by a lovely nurse on her 13th hour half dead on a Friday night with instructions to call A&E if an issue over the weekend. The actual operation was fine and was at a small hospital as my one was at full capacity but preferred small one. Thankfully I had no complications but it wasn't the NHSs finest hour. There was also no warning no painkillers and they just said to stop at a late night chemist on way back. Thankfully we had some paracetamol in. Get paracetamol and ibuprofen in advance and lots of cushions. My second op hospital was full again and was moved to small hospital again but consultant got covid so cancelled last minute and was very lucky moved to private on NHS. That was much nicer in own room, own bathroom, lots of nurses, lovely food, kept overnight, surgeon visited multiple times and a carrier bag full of meds, was like staying in a hotel and would happily have stayed there longer. But even there was hard to sleep at night and advantage of going home is its quieter. You do need someone with you for 24 hours or so minimum and if you don't have that let them know and they do keep some people in. I did not have a drain in which I preferred but you only know when wake up and had 1 mastectomy with snb first time no reconstruction, recovery was fine, do the exercises, in a bit of pain for a week and needed to rest but not too bad. Second was full node clearance, more pain than before but again around a week of rest then OK. And phone with any issues. I would personally avoid A&E its horrendous unless no alternative. But its quite rare to need A&E. Its mainly just painkillers, rest and arm exercises you need and maybe fluid draining but that takes 2 minutes or so if need to go in, I did not have drain though. The surgery was a lot better than expected.

Bill and Ben - the special holiday sounds lovely and will be fine from surgery then. I would let hospital know so they can plan around it. But I have been away once in chemo so its possible even in chemo. though was UK based and they said no to abroad. So abroad would be before or after but after you can have issues with insurance and needs to be after radio too. But hopefully you won't need chemo. You definitely should take all the holidays you can.

I have been given a week in a Cornish holiday cottage mid July by SomethingToLookForward to the charity, so lucky to get that. Its worth looking on there especially if you have a bad diagnosis, kids, decreased income as you are prioritised. You can apply during treatment or up to a year after. They do things like meals out as well or a night at a hotel and a meal. Love that charity, its my favourite cancer one. I really need the little breaks to keep me going. It was funny going to chemo on Monday, there was a lady doing her first quizzing me for advice as I had the coolbox and she wanted to know all about it, lovely to chat to her, my husband heard us and thought we were old friends but first time we had met. Felt a bit sorry for her though as lady next to her one side was having a bad reaction to first Pax and emergency doctors called out and other side was a lady snoring very loudly with an interpreter. Its quite rare to have a bad reaction like that to Pax, only seen one other emergency in there so far though that was worse as there were no beds anywhere in the hospital. Though you often see emergencies coming in but not in chemo room whilst being treated. Much better on lower steroids. Half term break from GCSEs phew. Going well and this week sorting DDs room as that what she wants as well as Mr Floof and 2 more floofy silkies. Cleaner was great, definitely recommend getting one off cleaners, we had them twice now and makes a difference.

Love to everyone.

MrsPnut · 31/05/2022 20:11

@Billandben444 I had a double mammoplasty, one therapeutic and the other to even things up along with a full ANC. I had three drains and 2 pico dressings so a bag full.
I only stayed overnight because my surgery was 6 hours and I didn’t go down until after lunch otherwise I’d have been home that night.

I’d advise asking your GP for a prescription for oramorph before hand, I had a long delay to be discharged whilst I waited for the prescription to be sorted out. I used it for the first couple of nights so I could get to sleep.

I was up and about quite quickly after my surgery and within a week had walked to my hairdressers in the village so she could wash and blow dry my hair so I have my fingers crossed for your holiday. There is generally a wait between the all clear from surgery and any other treatment so hopefully it slots right in.

@AFB2022 The fear is always there no matter what your original diagnosis was. In my experience oncologists tend to be quite matter of fact about these things.

OP posts:
MrsPnut · 31/05/2022 20:15

I had a call from my gynae onc today to let me know that my MRI last week was clear, doesn’t explain why I have a sore on my vulva still (5 weeks now).

I’m seeing a gynae surgeon tomorrow who I am
hoping will have some ideas because I am
miserable. I did think after the sore fanjo episode last year that I would never endure such pain again but cancer is like that.

OP posts:
Tryhardermum · 31/05/2022 21:48

Hi, sorry, haven’t felt like posting much, but would appreciate any advice on this… So, have invasive breast cancer, grade 2, with a dcis. Surgery due last Friday but was cancelled about 5 mins before the actual op due to me having a cold. New date for op is the very end of June. Thing is, that will mean a delay of more than 100 days since cancer suspected on screening mammogram. Have emailed everyone in the whole world - Pals, surgeon, bc unit, macmillan nurse manager, patients’ association, care quality commission-about making it earlier/making me a priority cos well over the 62 day target to no avail. Any ideas on where I go from here, as all the while the tumour us growing!

Silkierabbit · 31/05/2022 21:54

I had similar and ccd chief executive guessing email they are all similar format at my hospital and got pre op next day and op on Friday. Just said understand nhs is under tremendous pressure and underfunded but impact on my family and cancer growing. Was very glad I succeeded as had gone into lymph node. Also say you will take cancellations as they come up a lot. Good luck Try.

Tryhardermum · 31/05/2022 22:09

Oh, that’s brilliant, @Silkierabbit. i was planning to doorstep the consultant at the clinic tomorrow, then email the chief exec, but guess I’ll go straight to the top. Can I ask how long ago you did this? Thank you so much.

Silkierabbit · 31/05/2022 22:34

It must have been mid December 2021 so not too long and also needed a second op after that and when they had to cancel that they sent me private on NHS. Maybe worth saying you will take a different hospital if can get to one. Both mine where at different hospitals as my hospital was full. They also changed my surgeon same time from a not very nice one who would just walk out and not let you ask questions to a lovely kind one so much better.

Tryhardermum · 31/05/2022 22:48

Yep, I’m going to say I’ll go anywhere and with anyone! Thanks, again, @Silkierabbit. I have a new surgeon now-swapped from a right arrogant, lying one at the outset. Initially I was q fussy but with a growing tumour to get rid of, I don’t care much who i have now. It’s so bad, I’d even go back to the liar! The Nhs is a shitshow.

Billandben444 · 01/06/2022 05:46

@MrsPnut thank you, all excellent advice though not sure about my GP giving me oramorph - he's known locally as 'Doctor two paracetamol'!
Thank you for all the other good wishes, it's a miserable place for us all to be, isn't it 💐

Tryhardermum · 01/06/2022 13:47

Hey, guys, so email to chief exec bounced back. Switchboard won’t give me his email address or put me through to his secretary. Pals called to say op date of end of june still stands and I can’t swap to another surgeon if he has a cancellation. Also, have been told that I can’t have another scan to see if the tumour has grown. I’m outside the hospital in tears, as I’ve come to a dead end. This is what it feels like to be a nobody.

balkanscot · 01/06/2022 14:35

This morning we have received confirmation that DH’s brain tumour is indeed GBM, stage 4. Median survival rate is 15 months, possibly 2 years as he is fit, healthy, young. Radiotherapy & chemotherapy to start from July. I have no idea how to tell DS10. One of the most heartbreaking things we will ever have to do. I have no words.

@Podgedodge so sorry about your dad.

Waving to everyone else - you are all in my thoughts and I regularly lurk on the thread. But at the moment I feel so sad. I am past the angry stage. Just feeling so sad. Mourning the life I thought I would have with DH in the years to come. 😢

Podgedodge · 01/06/2022 14:47

@balkanscot sending much love.
There are no words.
Thank you for your generosity in taking the time to mention my Dad, you are very brave.

MrsWooster · 01/06/2022 14:59

Balkan I’m so sorry. There is nothing that can prepare for something this awful.

MrsPnut · 01/06/2022 15:15

Oh @balkanscot so much love and unmumsnetty hugs to you and your family. Use the thread anyway you need, we are always happy to listen.

OP posts:
AGreatUsername · 01/06/2022 16:02

@balkanscot I’m so sorry to read your news. Your poor family. Sending you lots of love and positivity.

13 days until surgery for me. It can’t come quick enough. It feels like the world should stop turning when you’re diagnosed with cancer. But it doesn’t. The housework needs doing and the bills need paying and life, for the most part, carries on as it was. Really surreal.

HauntedDishcloth · 01/06/2022 16:13

@balkanscot I'm so sorry you've had the shittest news. There may be a specific local support group in your area that could be of some help - there is one near me as my DS's friend's family is going through the same thing. If cancers could be rated, GBM would be at the most heinous end 😡

Billandben444 · 01/06/2022 17:22

@balkanscot that is really shitty news, I'm so sorry for you all 😞

Fantasea · 01/06/2022 18:47

@balkanscot I'm just so sorry to read your update and am thinking of you, DH and DS. Sending love Xxx

@AGreatUsername not long to go now, but the last bit did drag for me. I know what you mean about the world going on around you. I used to look out of the window and see people doing normal things and think 'how is this when I've got cancer?'. Mostly these were strangers or neighbours but I was so consumed and, in many ways, still am. It's an awful thing to say, but sometimes I envy people without cancer.

Italianclothing · 01/06/2022 18:51

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HelpIcantfindaname · 01/06/2022 19:33

@balkanscot so sorry to hear about your DH. Sending love to you DH & DS

Im just about to tell DD13 I have cancer.

Thank you @mowly77 for advising me to ring the consultants secretary. The nurse rang me tonight after the consultants meeting to tell me my results. I have an appointment with the consultant at 9am on Monday, but with the long weekend that's a very long wait since I had my tests.

The nurse told me the mass in my bowel is cancer, she said its advanced but they should be able to remove it with an op.

There are lesions on my liver, but she said they could be cysts or anything, not necessarily cancer. I need another MRI scan for a closer look.

Anyone with experience of lesions I'd love to hear from you.

I think I just knew it was cancer so I'm not that shocked. My grown up kids are quite upset.

Im trying to look at it as good news, they could have been telling me it's spread all over.

Stomacharmeleon · 01/06/2022 19:34

Have had a phone call from fairly local hospital I think about my radiation treatment (they said it was an emergency and needed to be in Monday)
She was just a bit vague about what exactly it was for.
And I had already had a call from another local hospital apologising for not having a check up after surgery two years ago (unrelated to cancer)
I was told I needed more surgery in London before I had my treatment though..... she is waiting for me to see plastic surgeon and have prehab anaesthesia wise.
I just wish hospitals would talk to each other. I honestly don't know what's going on.

Apology's if I have repeated anything. I have severe brain fog at the mo.

Stomacharmeleon · 01/06/2022 19:37

@HelpIcantfindaname I have teens and they took it fairly well. They asked a ton of questions and need differing assurance but it was worse in my head than it actually was.

It hope it goes well x

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