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)

@BitOfFun I’m so sorry. Your attitude sounds amazing, though. I don’t know if you’ve come across Kate Bowler, but she has words for this that I find quite powerful - worth checking out. I’ve also been reading “Fear” and Audre Lorde’s diaries, which both kind of conclude the same thing, namely that once you’ve faced up to the sort of news you’ve had, nothing else can scare you. I’ve only dabbled with these thoughts so absolutely can’t advise, but it sounds wonderfully liberating in a strange way.

Random question for anyone here: if I’m triple positive BC now, and the cancer comes back say in five years in the other boob, will it still be triple positive then? Or can you get a different type of BC each time?

So sorry to hear your news, @BitOfFun. I was briefly in your position during my ovarian saga, due to misdiagnosis by Dr Dud at my local hospital, which 'doesn't really do cancer' according to St Thomas'.

I did a lot of thinking in those few weeks and found it helped to see it as my third act or grand finale. Curating my demise. Being more Me than I'd ever been before, if that makes sense. From your posts, I'm sure you will do it your way and it will be pitch perfect.

@backformore As I understand it (and i'm completely unqualified and a bit of a google addict, I know I know ) if breast cancer returns it might change type or might not. Either way I believe it is unlikely to return to the other breast and a cancer there would most likely be a whole new cancer - though that is pretty unlikely!

@BitOfFun thinking of you lots. I'd love to hear about any sewing you get on the go if you decide to do any! I spent some time this week trying to remember how to do paper piecing patchwork on the sewing machine. I got what I wanted done in the end but honestly, if I had any hair at the moment, I'd have pulled it out!

@Starmer and @Gilmore Girl

Great to hear from you! Waving back. Sleep and meal patterns have gone out of the window due to embedding myself in US shenanigans but now back to normal - just older.

Hi all 👋

So, after 1 hour and 15 minutes and 7 attempts at getting a cánula in I'm having a PICC line fitted on Wednesday. My BP was 187 twice this morning and was told I need to make an appointment with my GP even though I was in hospital for my chemo with stroke potential BP. Insisted on another check before I left and thankfully it was back to normal. Sat through the 1 hour drip and the machine malfunctioned so had only done half. Anyhow, onwards and upwards.

Love and strength to you all. HC x

@HumphreysCorner that sounds a painful and frustrating day. The PICC fitting is interesting and painless and makes life so much easier..

I am halfway through radiotherapy and have completed four weeks of private physio for my wrecked right side. I am loving it and the keen young man is very pleased with me. I am also on the SafEFit trial with free Zoom exercise sessions and going at it like a bull in a China shop.
A lame bull with poor balance and a wonky leg but still charging forward!

Has anybody heard of the FRAME trial? It’s a Kings College Hospital project that tests two different online methods of building resilience in cancer patients after ending active treatment, to reduce anxiety and depression. I am thinking of signing up after radiotherapy is done.

I just heard today that my daughters MIL to be has been diagnosed with Breast Cancer. She is so upset at causing worry to her DC. I remember it so well. This is such a horrible illness,

Love to all having chemo, scans, results and just wading through the mire

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I had my first brachytherapy session yesterday and it was shitter than shit. What made everything worse was the machine was playing up with the treatment programme so they had to get the physicists to redo it which took over an hour (during which time, I am naked from the waist down) and I think the physicist went for his lunch in between.

I finally left after being there for nearly 3 hours for a 10m procedure, sore and pissed off.

My oncologist had come down to see me twice and was really apologetic but she could tell I was not happy. I wasn’t happy about brachytherapy in the first place.

Oh @MrsPnut - that is completely rubbish. I’m so sorry.

@BitOfFun I was sorry to read your news and I'm sending much love x

@TopOfTheCliff I keep meaning to say, after you mentioned it earlier in a post, that I am also signed up for the safefit trial - haven't had a session yet as I forgot to fill in one of the forms but hopefully starting very soon now. I hadn't heard of the FRAME trial but will look it up, sounds good!

Had a trip out of the house today to have my presurgery covid test. All being well I'll be having my single mastectomy and targeted/sentinel node removal on Wednesday. I feel like people around me are maybe expecting me to be upset or worried about it but in fact I am just desperate to get it done. Maybe I will feel sad afterwards? All I can think at the moment is mild delight that I'll be able to go out for a walk again, hopefully as soon as Thursday.

Waves to all. @MrsPnut that sounds awful, hope you are feeling ok now xx

Hi

I was directed here after posting on the life-limiting illness board.

Just a quick intro - I'm 47, have Stage 4 pancreatic cancer. 3 kids.

Diagnosed just under a year ago. 12 rounds of chemo - about to start radiotherapy.

Holding it together for the kids. But underneath am scared, angry and unbearably sad for my children.

Need some info regarding debulking for ovarian cancer. After being told a year ago no op possible Im now being told that maybe it is. I live alone with no family so am really worried about the practicalities, do you get any sort of help. I also have a dog and afraid I would have to rehome.
Can you really not lift anything heavier than a kettle or hairdryer for 3 months? Ive also got to decide if the pain and being laid up for months will be worth the extra time I will get. Havent seen the surgeon yet still waiting for appointment.
Any advise greatly appreciated.

@SerenaTuccot I welcome you to the thread no-one wants to join, but it is one of the loveliest threads on MN full of great folk who are here for each other. Feel free to post openly & honestly. You don't have to keep it together here.

Tell us more about your kids - how old are they? How have they coped so far?

@thereisonlyoneofme I don't know about the medical side but I volunteer for a cat rescue & we often taken in cats temporarily for people who can't look after them for a short period, either in the rescue centre or at a fosterer's home so this could be an option for your dog. At our centre we'd hate for anyone to be parted with their companion in circumstances such as yours & would bend over backwards to sort it. Check with any animal charities in your area and boarding kennels.

@thereisonlyoneofme

I live on my own, too, and had full debulking and removal of a 2+ kilo borderline ovarian tumour 6 yrs ago. I'm guessing you're much younger than me. I was 72 at the time and spent only 3 nights in hospital and that was with open surgery, vertical incision. 2 hour surgery. Fentanyl drip for the first night. After that, no drips, no drains, no catheter.

Didn't need anyone with me when I got home. Could do everything essential, just slowly and with a sit-down afterwards. Daily short trip to the paper shop as soon as I was home. Went to my follow-up appointment after two weeks by public transport. Two buses and a train to central London. Walking fine. Standing still and queuing made my back ache. Dd popped in with supplies when I needed them.

Lots of resting. Napping when I felt like it. Stocked up freezer. Kettle, toaster, microwave - fine. But definitely no lifting, carrying, sweeping, stretching to reach things. Travel kettle?

I can't help re dog and your surgery might be more complex than mine, but, as surgeries go, it was relatively painless. Just a rigid schedule of otc drugs. Only hurt when I coughed or laughed. (Hemi-colectomy was an entirely different matter, but even so I think my local hospital over-did the morphine. It was a 5 hr surgery and I was 78.)

After my bowel surgery, I had visiting surgical nurses for a week to check on me under an early release scheme. The hospital probably has some arrangement for short-term social care with an agency, if you needed it.

I know this is personal, but even at the age I am now, I'd have no hesitation about further surgery for extra time. Removing tumours also probably means less pain?

@SerenaTuccot .. Welcome. Lots of lovely people here with children. Bastard cancer.

Thyme out. Thanks for your reply. I am 72 coincidentally! Im in awe of you . I have been reading so many different things re surgery. I think it will be a big one and Im facing the possibility of a stoma, This is a whole different ball game. Im quite an active person and its daunting thinking I wont be able to drive or walk the dog. I think Im going to decide on the basis of the extra time it will give me v just keeping on with chemo permanently .
Tumours are V large though and thats whats freaking me out, how much bigger they will get before its curtains

@SerenaTuccot Tough diagnosis - are you getting irl support and counselling?

@Lubballoo it'll be great to get surgery done. Hope all goes well.

I saw surgeon today after MRI results - results are good - better than expected even. Following from ongoing surgery options discussion, current recommendation is lumpectomy with sentinel biopsy and removal of the node that is already clipped. This is a change from previous - which was definitely complete node clearance. Of course the final results will be in the pathology after surgery.

I'm inclined to just go with the recommendation and not push for a mastectomy but I'll be looking into it a lot more. Still 2 chemos to go - I will be SO glad to get shot of chemo at least knowing it is working helps.

I have been pretty pessimistic about my situation generally as my initial diagnosis could have really gone either way and I am like a believer in the Evil Eye who thinks you will court disaster by smiling. I am living proof that being grumpy and lacking in positivity is no impediment to a positive outcome

In celebration, I have red wine, flamin' hot cheetohs and fizzy cola bottles. (Chemo is like pregnancy - weird cravings.)

@HauntedDishcloth Thankyou. I've got three kids. 9 year old twins and DS1 who's early twenties (yes, big gap!) The twins are having counselling at school and through a cancer charity. 90% of the time they are fine. But that other 10% is heartbreaking. We were advised to be honest with them especially when answering questions. So there have been lots of tearful conversations. I think we are doing the right thing talking to them openly (but not graphically) about it. But it is really hard sometimes.

I'm not having counselling so far. Figured I would deal with the physical side before opening the emotional floodgates. Not sure that was so sensible tho. All a bit overwhelming now.

That's great to hear @Acinonyx2! Sound like we are having a similar approach re lymph nodes (though full mastectomy in my case) Enjoy your red wine and crazy snacks And I am delighted to hear that a grumpy approach has worked so well thus far because I'm so often on the shit-bus not the positivity-train myself.

@SerenaTuccot Welcome. Your situation sounds impossibly tough . Vent, rage, chat, ask questions, tell us all about you, or don't, whatever you feel like. No one wants to be here but I reckon it's the best corner of the internet. Your holding things together sounds nothing short of heroic I have to say. How are you feeling after the chemo?

@Lubballoo Thankyou. I wish I'd found this thread sooner. It is good to be able to chat to people who understand.
I've had 12 rounds of chemo. It was pretty brutal. And obviously Covid and lockdown hasn't helped. But when I read about delays to treatment etc I actually feel lucky that my care has been very good.
I'm hoping to have radiotherapy in the next few weeks. I'm on a maintenance drug now that makes me really tired so I worry the kids are just seeing me sleep all the time. But hopefully my body will get used to it. And luckily I have amazing support at home - DH and DS1 are both fantastic. I flit from being very positive and putting in a brave face to feeling very angry and very sad for the kids.

@MrsPnut your treatment sounds horrendous, poor you. One of the things I really struggle with is the state of my body so to be lying there half naked while they fiddle with the machine is just awful. Hope your next one goes without any problems.

@Acinonyx2 I am also delighted that the grumpy approach works well. I am often so miserable I start to piss myself off.

@SerenaTuccot welcome to the nicest thread on MN, full of the loveliest ladies. So sorry to read your story and to find you on here. I have OC and my overriding emotion at my diagnosis is sadness. Everyone seems to think I should be permanently full of rage (sometimes I am) but mostly I feel so sad. I am reading John Diamond's book where he talks about his cancer and he said that mostly he felt sad. That gave me some comfort as I was starting to feel I was unusual in feeling like this. Many people have questioned why I feel mostly sad as they imagine they would feel permanently consumed with rage. I have been offered counselling through Macmillan but declined when I realised it was with volunteers. I have had professional counselling to address my health anxiety (oh the irony) prior to my diagnosis and felt that to be of limited use to me. I am currently on chemo and feel permanently exhausted too.

@SerenaTuccot welcome to the club none of us want to be in. You will fit in nicely here.

@thereisonlyoneofme I think we should celebrate that you have gone from inoperable to potentially operable. With the amazing new drugs coming along all the time I would be wanting to try to hang on for the wonderdrug likely coming along in a year or two.

@Acinonyx2 that’s good news too. I only had one affected node but lost 29 to prove it.

I went for my penultimate radiotherapy treatment today. It’s wearing me down now. But when I arrived the car park was full and they were running late. As I was hovering in the drop off zone waiting for a space an old man came and got into my car! He thought I was his taxi. I was giggling throughout the rather protracted session. I think the radiographer was struggling today. I’m not sure whether to celebrate tomorrow as I still have lots of Herceptin, zolendronic acid and anastrozole to go but hey I’ve nearly finished the active treatment bit!

Best wishes to all. May your chemo/operations/tests this week be dull and uneventful and the outcome positive.
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@thereisonlyoneofme

Need some info regarding debulking for ovarian cancer. After being told a year ago no op possible Im now being told that maybe it is. I live alone with no family so am really worried about the practicalities, do you get any sort of help. I also have a dog and afraid I would have to rehome. Can you really not lift anything heavier than a kettle or hairdryer for 3 months? Ive also got to decide if the pain and being laid up for months will be worth the extra time I will get. Havent seen the surgeon yet still waiting for appointment. Any advise greatly appreciated.

So sorry to hear of your fears regarding your dog, and wonder if these people can help cinnamon.org.uk/ Good luck xx

Just poking my head around the door to wave Serena a welcome .

Morning lovelies

Day 4 post chemo and starting to feel a tad more human.

@Acinonyx2 I'm with you on the cravings, my fridge is full of things I think I feel like. Good news from you, sounds positive.

@SerenaTuccot a big welcome hug to you, pleased you found us, TT

Posted too soon again....

The ladies on here are truly amazing. Keep talking to us about anything.

@MrsPnut your treatment is just not nice, you are doing so well.

Waves to @BitOfFun 👋

@thereisonlyoneofme hope you decide the best route, difficult decision.

Latest side effect is nose bleeds. I keep blowing my nose and out come lots of clots. Sure someone else on here said about it.

Big wave to everyone else. Going to try and drink my tea with my meds.

HC x