Cancer support thread #77 - newbies welcome

[InOtterNews]

I couldn't see new thread so here we go...

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)

@theresonlyoneofme

My cancer was caught very early and my only treatment to date was debulking surgery.

Will I agree to treatment if it comes back? Yes. For sure.

Why? Well that would be because I love life and I want to live as long as I can for a whole host of reasons including the joy of my 5 children and 7 grandchildren.

@Percivalthebabyspider I had a reconstruction (being large-of-boob I wanted a bit of shape) but staying flat is far more common than the surgeons might have us believe. A close friend had two separate mastectomies without reconstruction. She tried a prosthesis with the first mastectomy, but didn’t get on with it, and says nobody seems to notice that she’s completely flat-chested. She’s very happy with her decision: just needs to choose blouses/tops without darts in them, and swimsuits with padded cups. And she now has some fabulous scar-covering tattoos!

@thereisonlyoneofme Definitely bloody-mindedness in my case: I’m only 50 and want to see my teenage DD grow up. I’ve found it works best if I take one day at a time, enjoy my hospital-free days as much as possible, and not think too far ahead.

I too hope @InOtterNews is OK. I’m so grateful to have found this thread.

@thereisonlyoneofme My dd15 100%. Otherwise I am quite ambivalent and have told my dh I won't might not do this twice. I don't really love my life and that's one of the reasons I have started counselling - to deal with that.

I think the will to live is pretty strong. I do love my life - or I did, when it was enjoyable - and always thought I would achieve very old age. I don't know at what point I would refuse further treatment; I don't want to spend most of whatever time I have feeling dreadful.

Hi again ladies. I posted a few weeks ago whilst waiting on results from a bone marrow biopsy. I was given preliminary results over the phone and its not good news. I have a type of blood cancer that normally affects people in their 70s and 80s. I am 50. Have an appt with the head haematologist on Monday to discuss the finer details of the results and what happens next.
Just totally devastated, scared and upset at what I am about to put my kids through. Hubby has been amazing I am so lucky in that department.
Sorry to off load, you are all going through so much and I take great comfort and inspiration from you wonderful ladies.
I just feel so alone, not sleeping or eating. Did you all go through this at diagnosis?
Thanks for reading and sorry for the ramble.x

Oh love, this is absolutely the worst bit, in my experience- you are by no means alone!

Take your husband with you to the appointment if you are allowed, and ask the staff if they mind you recording the consultation on your phone (I found that easier than taking notes).

I think most of us felt better once there was some kind of an understandable treatment plan in place.

It's hard, I know, but try to stay away from Doctor Google in the meantime, as the advice is often out of date and unnecessarily depressing.

You've got this, or you will have, and you've got us here anyway!

Hi all

@Alittlewornout my auntie is 88 on Saturday and 2 years ago she got your diagnosis and had treatment. She found it gruelling but didn't lose her hair. I am so hopeful you have the same treatment and good result.

I went for bloods today and they couldn't get any out my PICC line so had the needle. Had a clot buster injected and going tomorrow to have it syringed out. Such fun

Stalking @InOtterNews and she joined this group in March 2020 but didn't mention family members. Can't stop thinking about her.

Big wave to everyone 👋

HC x

Thanks for scooping me up ladies. I am trying to stay away from google because you are so right @BitOfFun it's scary and outdated. Good idea about recording the consultation we will ask. Hubby has all our questions on a word document, although will probably have more on the day.
Dreading it to be honest but know it has to be done. Our kids are young adults both at home but normally at uni. I have given them the bare bones but until we fully know what lies ahead there is no point in 4 of us lying awake at night.x

@Alittlewornout Don’t ever feel bad about posting here, we are always happy to handhold or just listen. No one has it worse than anyone else, we all have cancer or the possibility of cancer.

@thereisonlyoneofme My kids keep me putting one foot in front of the other.

Breast surgeon appointment today and I am fucking furious. He said he’d spoken to my oncologist and they thought they should delay my surgery by 4 months and I have hormone treatment in the mean time. I did tell him that I was fed up of having my time wasted and the 2 hour round trip for nothing today was the final straw.

I did ask him how he thought my work would feel at me being delayed by 4 months for little benefit. He apparently thought I’d just work in between but I pointed out that my job doesn’t work like that and they have a temp in the department to pick up slack anyway. I’m also too tired to work right now.
I think they thought they’d wait 4 months because I need to be fitted into the NHS list because they have block booked the operating theatres at that hospital. Grrrrr just more irritation and time wasting.

@MrsPnut that would boil my piss. That is worth a rant and a scream. Are they looking to bring this forward at all?
My MDT was today, treatment plan is chemorads and brachy as expected and there is a chance of joining a trial. My PET/CT isn't until 12th March. More waiting. I honestly expected this to be more rapid. I'm just terrified that I will be restaged upwards after PET scan. On MRI my nodes are clear but I've got a really bad case of the what ifs.
May the road rise up to meet you all

@BadEyeBri They are going to schedule a date for pre op and the actual op. I think I scared him slightly.

I had my vaginal cancer found at my colposcopy on 6th Nov, only went to MDT on 23rd Nov and then they wanted MRI and PET scan first. I moved then to private oncologist because I had the breast cancer diagnosis too. I finally started cisplatin and radiotherapy on 16th December.
My oncologist widened my radio to cover my lymph nodes as well even though they weren’t involved because micromets wouldn’t necessarily show up.
I’ve got my last brachytherapy this Friday and then there is just recovering from that cancer and treatments.

Also MRI is the main way they can stage and see cancer in cervix and vagina. Pet scan is less useful for that area because of the radiation being passed by urine so it can look concentrated down there anyway.
It’s more to see if there are other areas, my scan showed my ulcerative colitis active in my distal colon. I am going to push for a pet scan instead of a colonoscopy next time.

@MrsPnut thank you for your reply. It's really reassuring. I'm normally a very logical and rational person. This has just put me in a spin. I don't really recognise myself.
I hope you get a revised date soon. Sometimes you just have to advocate very strongly for yourself and be that person. You seem so together, I take my hat off to you

First day of radiotherapy today. Bit nervous. Just arrived. Receptionist had no record of the appointment. So that's a good start.
(Sometimes I think the annoying little hurdles are there to keep my mind off the big horrible hurdle.)
Hoping RT will reduce my pain which is creeping up steadily.
Sending positive thoughts to everyone on this thread today.

Good luck today @SerenaTuccot. I like the idea that administrative frustrations could be deliberate to give us a distraction from the bigger cancer shitshow! Seriously though hope it goes super smoothly.

Thanks for the well wishes, one week post op I am doing ok. Going in tomorrow to have the drains removed and hopefully to get pathology results. Really really hoping there wasn't any cancer left in the lymph nodes they took, I don't want to have to have another op so soon. I know it's not a big deal in the scheme of things though. Other than that I don't think the pathology is likely to reveal anything significant but I still feel nervous about it.

Loving the allotment chat (and those beautiful pics, @BitOfFun!). My parents have an allotment which I love but haven't been able to visit for over a year and I'm on a waiting list for one locally but that's not going to materialise any time soon sadly, so I will enjoy these thread allotments vicariously for now!

I dont have family so dont have the worry of leaving them behind. Life at the moment is totally boring - as it is for most people. Even pre Covid since I lost my OH my life shrank to taking the dog out a couple of times a day and meeting friends every 2 months so not much changed lately.
Therefore I wont be missing much if I opt not to go on, its so relentless isnt it never being free of hospitals and treatment.

@thereisonlyoneofme I have been considering your question. At sixty and just retiring now with a family on the brink of producing grandchildren I passionately want to be there for them and involved in their lives. I will take every treatment going regardless of short term unpleasantness.
If I didn't have family I would still want to have the adventures I have been looking forward too and get the best return on my pension which I have invested in for many years! My health is otherwise good and when not being attacked by surgeons or oncologists I am fit and active. If I was much older and struggling with mobility and communicating I might consider quality of life not quantity. Not many of the ninety year olds I know want to go on longer.
Have you had any counselling to help you with a decision about how far to go with treatment? Sometimes talking to another person helps to clarify what is important.
Yesterday I overdid things just a little so today I am trying to be more sedate. I don't think I've got lymphedema but when I exercise my shoulder aches quite a lot. But I am only two weeks into radiotherapy side effects.
Best wishes to all struggling with decisions and coping with treatment and results
Top

I hope your radio turns out to be as effective as mine, @SerenaTuccot, as it's been nothing short of miraculous. Don't forget that the effect builds gradually- I had my last lot around six weeks ago, and it's only now that I can really feel it's done the job. I can walk unaided again, for a start! It's amazing stuff.

@BitOfFun I'm only having five days of RT treatment. I've been warned I'll feel tired and nauseous for a bit. It's helpful to hear that the effects might not kick in for a while. (I have form for expecting too much too soon)

My first lot was five days too. I could feel the difference in my mobility by the end of the week, honestly. Great stuff.

@thereisonlyoneofme

You’ve been on my mind all day and I would just like to say that the possibility of you deciding not have any treatment saddens me.

You’re precious and worthwhile and I hope you’ll eventually decide to give things a go.

Do you like travelling at all?

Hi can i introduce myself I'm 49 and was diagnosed yesterday with grade 2 invasive lobular cancer. I'm not sure how I feel at the moment , my mum died nearly 10 years ago from breast cancer and I've been seen by the family history clinic for 2 years. I think I feel numb like I've been expecting it to catch up with me eventually, my main concern is my 2 daughters 23 and 20 and what I may have passed on to them. I"m waiting now for a mri appointment and then to find out about surgery and hormone blockers. I've gone back to the start of the thread and trying to catch up.

@thereisonlyoneofme I have been thinking of your question. I keep going for DD25 and my elderly DM. I truly hope I outlive her. I think, for me, if treatment were keeping me alive purely to have more treatment, I would rethink. I have felt rough for so long I can hardly remember what it is like to feel well but I really hope that one day I will.

@KitchenFishCurry welcome to the thread no-one wants to join but also the nicest one on MN with the loveliest ladies. I know what you mean, I have had testing today for the BRCA genes plus some other genes and worry that if I am positive,(I have OC) what I may have passed onto DD. She is so young and healthy it is a horrible thought.

Hey 👋

@thereisonlyoneofme me too thinking of you. I truly hope you will find the strength to carry on with treatment. ❤️

@KitchenFishCurry big, big welcome. This is my sanctuary here and the perfect place to share everything. 💐

Started walking lots which is good but I've had a week off treatment but back again tomorrow for no 6

HC x

Thanks Anne 1958 andHumpreyscorner
I just would like to have my old life back, impossible I know.
Cant really see the point of this one.