Cancer Support thread #78 - Newbies welcome

[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

HerbalRefreshment welcome to you too. You sound like the slog of all this is wearing you down. Come and have a moan, we are all similarly burdened.
I haven't named my chest mass yet but am toying with the idea. It was initially the size of a large Cornish pasty but hopefully has shrivelled up a bit since first chemo. Part of me I think feels like if I don't give him the airtime he might fuck off quicker. Chad can definitely do one.

Will the ovary removal be your first surgery? How are you feeling about that?

@JustDavesWife again, thinking of you today x

@Miava hello lovely, you've already been through a big change. Don't dread the chemo, easy for me to say as I'm on 8 out of 12 later but once you have the first one you know then how you feel during/afterwards. The nurses can give you any meds you need eg sickness, laxatives, mouthwash. Pack a bag, in mine I have a blanket, paracetamol, migraine tablets, reading book, crossword book, powerbank, AirPods, Starburst sweets, mints, diary/organiser to write down next appointments they give me while I'm having treatment. I lay everything out on the table next to me and I have my own chair. I'm very protective over my chair as it gives me a view of the whole room. I then always watch Eastenders between pre meds and treatment.

Have a good day as best you all can.

HC x

@FizzyOrange @Babamamananarama @HumphreysCorner thank you all so much! And thanks for the tips. I have some laxative left over from surgery so will be guzzling that if/when necessary. 😬

@TopOfTheCliff I saw the news last night and wondered if it was you , our wifi was playing up all day yesterday. You looked great!

I had the results from my mri yesterday, the lump is bigger than the ct scan showed. I am now seeing the surgeon next week to go through my options, surgery to remove lump and reconstruction or masectomy without reconstruction.

Does anyone have any advice?

@JustDavesWife wife I think that is appalling but from personal experience sadly unsurprising. Thinking of you today.
@TopOfTheCliff I completely missed the news yesterday but I will try to find you on i player today.
@HumphreysCorner good lack with number 8 today and hope no picc line issues.
Hello to everyone who has recently joined, so sorry you find yourselves on tbe thread no one wants to join. I think everyone on this thread are incredible you will all get some amazing advice and support on here.
Well thats day four of my Chemo injections done. I get the weekend off then back in on Monday. Some parts of the day I feel really quite good others really fatigued. Just trying to listen to my body and go with the flow.
Have as good a day as you are able. Hope all the treatments go without any hiccups.x

@Alittlewornout thank you.

I called them at 9am and the receptionist said she would put me through to the secretaries but they didn’t answer. A secretary has just called me and said the doctors are all in surgery so she will email them and hopefully one will call me today. I told her that someone has to call me because it’s then going into the weekend and I can’t wait until Monday but she just said if I haven’t heard by 3pm then to call back. It’s just rubbish and I can’t believe they think it’s ok to just leave me sitting here..

@JustDavesWife that really is crap. It's not on to keep someone waiting for results like this. They must realise how worried people are.

@Miava you won't know which side effects from the laundry list you will get until you try it and then you will know which drugs you need to help. On EC, I got the runs a lot rather than constipation. In fact (TMI?) a few days ago I returned to solid poos and it felt quite unnatural! Hope it doesn't hit you too hard.

@KitchenFishCurry I've been round and round the houses on the surgery issue. The surgeon will likely have a strong view on whether to go for a lumpectomy or mastectomy but we can request a mastectomy if preferred. Personally I have decided to go with the surgeon's recommendation which in my case will be a lumpectomy - and probably level 1 & 2 node clearance but that's still undecided. So let's see what your surgeon thinks and why.

@JustDavesWife I'm just ]shocked] [shocked] at the mental torture being inflicted on you.

This is my better week but I am still so hopelessly inefficient with my time and just getting nothing done. Agreed to feedback on a document - blasted thing is 30 pages and I got 12 pages in but then my chemo brain imploded. I can't seem to face opening it up again.... yet I also rail feeling so useless all the time. Maybe I'll just put some laundry on...

@JustDaveswife that is completely unacceptable. I know as patients we dont want to but I would put a complaint in. To reassure you as an NHS staff member I encourage clients to complain when a service is poor. I reassure them that the complaint is not about one individual more the systems themselves. Often as staff members we have already raised the issue up the food chain, but no one listens to us, until a complaint comes in that then galvanises management to take a closer look. I appreciate you may not feel in a place to do that but soneone else could ie a family member?? Your situation makes my blood boil, compassion and empathy costs nothing and you are being shown none of these.
Hugs to you, its so unfair.x

Very sorry to read about all the issues people are having with PICC lines and bloods - @HumphreysCorner I hope yours is working OK today.
@MrsPnut like everyone else I'm sending huge sympathy for what you're going through, and really hoping you can get some relief soon.
@JustDavesWife I agree with Alittlewornout that you should complain about not being given the results. Totally unacceptable. I hope you have been contacted by now, and that you are feeling OK.
@Babamamananarama sorry about the breathlessness, I have been experiencing that for the past few weeks, I did have one transfusion for anaemia before my third chemo treatment. How do you feel about losing your hair? Will you get it cut short (if you can)? I think keeping a diary is a good idea.
@KitchenFishCurry I hope you and the surgeon can agree a plan which feels OK for you.
Hello and welcome to @Vinorosso74, @HerbalRefreshment and @Miava, you never wanted or expected to be here but I hope you can benefit from the support.
@HauntedDishcloth I'm going to ask my GP practice if there's any chance I can get my second COVID vaccine earlier. First dose was nearly four weeks ago.
Waving at everyone else!

I just phoned GP practice, receptionist said they don't book the second doses and there's no way of getting it earlier (unless I get contacted, obviously).

I've debated whether to post back here this afternoon as my biopsy was clear and it's some kind of infected cyst which I need a high dose of antibiotics for.

You were all so lovely and enraged on my behalf when the hospital didn't phone that I didn't want to just disappear without saying thank you even though I feel like a bit of an intruder who has wasted your time! So thank you for being welcoming and lovely when I was very scared ❤️

I also apologise if I probably shouldn't have posted back here, I wasn't sure what to do and didn't want to be rude!!

@JustDavesWife that's brilliant news. I'm delighted for you. Have a great weekend x

@JustDavesWife so pleased for you, enjoy the weekend with your family.x

@JustDavesWife that is wonderful news! What a weight to be lifted. Enjoy your weekend

@JustDavesWife I'm so pleased your results are so good. I had a friend of a friend have a biopsy just after me as she checked her boobs because of me. Her result was negative and I was so happy for her. Have a fantastic weekend lovely x

No 8 done and PICC a success 👍🏻

Struggled to keep my eyes open this time so couldn't read my book. Pressure on as the friend dropped a huge bag of books round last weekend and keeps asking how I'm getting on. Little things that bother eh? Went to bed at 1pm and just woke feeling much brighter.

Laters!

HCx

@JustDavesWife no of course we want to know and I was rather expecting good news You couldn't be sure about that though and that's a hard place to be for a while.

@JustDavesWife that's brilliant news, so pleased! We LOVE getting good news on this thread!
Have a lovely weekend

Ah @JustDavesWife you have made my day! Thank you for coming back with good news.
I’m in a grump today. I really really want to get out on my bike and to dig my allotment but I promised the nurses I would be good because of the arm pain I am having. It was settling but today I went to physiotherapy which to be fair was quite energetic and now I have pain again. I think it is intercostobrachial nerve pain from the total node clearance and radiotherapy and the only answer is to sit still and wait. Aargh! What is the point of feeling better if I can’t do anything? I’m sulking in bed this afternoon.
@Miava welcome to the thread. Chemo is notoriously Tough but Doable. Don’t look ahead just plod along from one day to the next and it will pass eventually. And take all the drugs they give you! Almost all side effects can be eased.
Regards to all.
Top

@TopOfTheCliff can I sulk with you? I'm not ill today and it's my last chemo on Monday. I really feel like I want to get back into things. I'm mightily pissed off that my (yes OK life-saving) surgery April-May means I can't repot seedlings etc.

Just messaged the lovely cleaner I had before lockdown last year and lockdown put her out of business. So sad. I've put a message on my local Facebook market place. My house, sinks, toilets, skirting boards 😭 Hoovered yesterday to get rid of the hardbacks and it made my PICC bleed.

@HumphreysCorner, I think that is a wise move as you dont want to over do it. So glad the picc line was a success hope you got a wee nap in the hospital.
My stomach is like a pin cushion with these injections. Its not sore when I am sitting down until that is the cat jumped onto my lap!! Ouch!🐱

@HumphreysCorner Hooray for the PICC! So pleased for you! They really do make such a difference.

@JustDavesWife Wooooohooooo! That is wonderful news! You were not an imposter at all - your fear and the worry were legitimate and real, and your good news doesn't change that. And I still think the way they dealt with you, keeping you waiting, was appalling. Hope you are celebrating tonight!

I have just had round five which was a bit longer than usual because all the nurses were run off their feet. In fact, the lovely nurse looking after me today was on her last day - she's leaving because she is overworked, underpaid and demoralised. The comments from Nadine Dorries today just confirmed to her that she has made the right decision. Am so angry about what is happening to the NHS.

On another note, we have just had a notification from DS's school that his bubble has a Covid case so he has to isolate for ten days. So I will be homeschooling during my nadir. I know it is a little thing in the grand scheme of things, but I have had a little cry. This is the first cycle where I have had the prospect of just stopping for a few days, and now it has been taken away. Also slightly concerned about infection risk, although I have had the vaccine so hoping I will be ok. More worried about DS being ill with it, tbh.

I also have good news! The consultant rang me today from the breast clinic to tell me the biopsies were clear. It's nice to have good news in our house.

Thank you for having me! I can go back to the usual worry for dh.

@loubieloo4 I'm thrilled for you and so relieved, you must have been through hell and back with all that worry on top of everything else.

@JustDavesWife what lovely news, that's what we all like to hear!

@AlbertCampion oh dear, I would have had a little cry too. I think when we are in this situation we need to have things to look forward to, and then when they are taken away, it hits us even harder.