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

Glad that's two things done for you Mowly hope you don't get too many side effects, I found it useful to keep a daily diary.

I did fourth weekly Pax on Monday after a week's delay due to terrible neuropathy, now on Saturday, have been dead to world all week but very little neuropathy, so drowsy and out of it though and struggle to get to bathroom and back, need a bed inbetween for a sleep. 8 more to go in theory and dreading the picc line on Monday and chemo and extra drugs and sounds painful, I passed out last time at chemo briefly from just the current amount of drugs so not sure how more drugs will go but at least in the right place.

How did the picc line go @mowly77 ?

I’m 8 days post my final chemo now, the side effects have eased off so I’m hoping to start feeling ‘normal’ soon. Waiting for surgery date now, and for them to tell me the type of surgery I’ll be having. Feeling pretty nervous about that.

Love to everyone as usual, hope you all have a peaceful weekend xx

Glad your side effects are easing TwoNoisy I am not sure how long it takes to get back to normal but each day should be a step closer to normal so must be an improvement.

Surgery I have done two so far and found much easier than chemo though of course mine were pre -chemo so you may be more tired than I was after but pain from mastectomy was minimal, the full node clearance was more painful but still gone in 2 weeks and just need paracetamol. Its worth getting in painkillers paracetamol and ibuprofen and lots of soft cushions. I had no reconstruction or drains in.

Phoned the chemo line as got myself very worried about picc line and it seems it is no chemo or picc though she could not talk to team as Monday 9am due. She did say if I am really against I don't have to have and also they can take it out anytime I ask, I am a bit sceptical on that promise but at least had it and saw it out before at chemo and was literally 3 minutes and the women wasn't screaming. Gosh I just want to stop chemo though but probably not sensible. Just crying in the night about it but now at least today I feel less dead but depressing Mon to Fri where dead this time.

The cats ashes are back so can collect those. So much to do next week and so little energy but guess just do what you can.

Thanks @Silkierabbit . I’m getting myself worked up about surgery to be honest, but mainly because I didn’t yet know what type I’m having; that will all depend on the mammogram (next Friday) results. The the meeting with the surgeon the following Wednesday, so by then all will be revealed, hopefully, and I can start preparing. Thanks for the tip about the cushions! Xx

@TwoBigNoisyBoys I was petrified before my first surgery and convinced myself that I wouldn't survive.
I made sure I had written down all the instructions for DH and also sent an email to my HR Director so he knew what to do with my death in service benefit. He replied that he was planning to dance the funky chicken at my 90th birthday so I shouldn't worry.

I have since had a shave surgery and that felt so much better than the first time - there was chemo and THAT incident in between though so maybe I thought I could do anything.

My port was removed in Friday and my chest is maybe more sore than when I had it inserted, they couldn't close the wound because the skin is friable and the tissue is damaged so they have done a stitch at either end and pulled the sides together but there is an opening for it to discharge from.

It really showed up though how the NHS likes to waste money, my port was fitted in a private hospital by a consultant clinical radiologist and 2 nurses to assist in a cardiac Cath lab. My port was removed by 2 vascular surgeons, one of whom was a consultant, there were a further 4 theatre nurses there and the person before me on the list was having a port inserted but was cancelled last minute because there was no radiographer.
The only place they do this is a hospital miles away from anywhere, we travelled 26 miles to get there and we were at the hospital for 6 hours. It's so blooming inefficient, build another cardiac Cath lab, get a consultant radiologist who can perform the procedure and get them doing it twice a week at each hospital. Free up the vascular surgery team and the theatre to do actual surgery.

I have also been getting myself worked up about Monday TwoNoisy I also hate not knowing all the details or in my case any of the details. I did phone in a panic and they suggested cancelling and reviewing which may go with.

Re the surgery I was given a choice and put on the spot so its worth looking quickly what options are - I was given choice of lumpectomy, advantage of this is its less surgery and they put you back to before though sometimes a bit smaller on that side. Downside is about 30% of time they don't take enough and have to take more.

Or mastectomy where take more and that is with or without reconstruction. Mine was without as with was a longer wait and wanted cancer out. Reconstruction is a longer recovery time but all done at once, mine is like a end of treatment plus 2 year wait now or stay flat or go private. There are different reconstruction options as well DIEP is quite a common one and implants can also be used but need replacing and issue if radiotherapy after. Mastectomy takes more out but risk can be if comes back comes back in chest wall but with mine they actually left a bit to counteract that. With the mastectomy I asked them to look again and what they recommend and they went with mastectomy as my lump was large (5cms cubed ish) compared to breast size. Drains in or out depends on surgeon and how it goes, neither of mine had drains in which I preferred. I had a recliner to lie in afterwards, most UK people seem to use pillows to stay a bit upright, US people seem to use recliners and angle I think may help with drainage. I had no issue but any issues there is a number to call. They give you arm exercises, very important to do these. You get DVT stockings as well. You can't bathe for a few days I think, I got a washing up bowl of soap and water and did my best with that, you are not supposed to lift hands over shoulder level first week though I did before I realised and was fine. And no hoovering or heavy weights for a while. They go through this with you.

I am trying to find out if you get blood clot on PICC do you have to have blood thinning injections for several months and also if I can wear something on my arm after it. I am not sure if I need to buy anything. I think would prefer a port but don't think its an option. Hopefully will get someone in the morning though will be a bit rushed as I am scheduled for 9am PICC and 12pm chemo. Am still really dead and weak on it.

Thanks for asking @TwoBigNoisyBoys it’s ok overall! And Honestly @Silkierabbit the insertion of picc on Friday was so so much better than I thought it would be. It was slightly uncomfortable and felt a bit weird but you are thoroughly numbed up and the weird feeling wears off — and oh my god not having to have a cannula was amazing.

Now I did also take a bit of oramorph before the procedure (outside the hospital in the car! I always do when it comes to cannula and blood tests etc and that’s the only time I take morphine now so that’s good… honestly the other day I didn’t bother as it was just a blood draw and hell I could tell the difference! Everything still hurts on morphine just a little less I think. Full disclosure: I also took some diazepam before the picc and chemo because I was so nervous. Both those things helped )

But I would say it was the first time I have been to hospital and not cried (well cried in pain) … I did have a little cry with my BCN because of nerves of both picc and first chemo and because my DP had been a bit of an arse. because I was still very faint on my covid test I had to go to a special leper’s room anyway and the nurse stood outside the door in the corridor!

Now: I’m two days in. they give you a stretchy bandage thing to put over picc line. That’s fine. And you can buy jazzy ones online so it doesn’t look so medical so I’ve ordered some. It is annoying having it in not gonna lie, I can feel it, basically, but that might wear off because I’m still sore from procedure I think as am v delicate & bruise easily.

The worst thing is you can’t stretch with your right arm (or what arm it’s in but usually right, given heart position but depends on lymph node removal I think) or do anything vigorous with that arm in case you knock it out of place somehow and that’s super annoying! Didn’t realise that. Was doing yoga stretches so will have to find new ones… and hoovering etc nope. DP did all the hoovering today - result.

So we’ll see. The guy who put it in said you will know if you knock it out of place as you will hear whooshing sound in ear or tickle in neck?!

You also have to keep the bastard thing dry in the shower. The nurses said use cling film although they’ve given me a prescription to get some sort of sleeve from GP. It’s bloody hard and I think I’m getting it wet so just trying to dry thoroughly but gently after. It will be flushed and redressed at weekly chemo so any problems should be picked up.

I’m already on blood thinners because I’ve had loads of blood transfusions and my blood is weird and sticky … but they’re tablets not injections so talk to them if you have any worries. They also said you’ll know if there’s any chance of a blood clot as arm will start to feel hot or inflamed or any other weird symptoms - just call emergency line straight away.

hope that helps x

Also agree @TwoBigNoisyBoys surgery better than chemo so well done on getting through chemo! Hopefully your surgery will go well. My recovery from double mastectomy ten years ago was honestly not all that bad. I did have drains but good painkillers and lots of pillows etc.

Oh & @TwoBigNoisyBoys I did opt for implant reconstruction so I also had an expander in my right breast after mastectomy to stretch the skin and make room for the eventual implant. It was uncomfortable but doable. Then another smaller surgery when it was ready to put implant in. The left breast had no cancer in and by this time I had a different surgeon with a different method! The left breast was originally left intact and he put an implant in like it was a boob job … so I had one massive left tit for a few months and had to wear a prosthetic on the right side! Then he did the mastectomy after and left the implant in … then I had minor surgeries to make nipples (out of twists of skin, not very successsful really) and to try and graft some fat to right breast as they were and are very uneven and wonky. So a faff. Quite a few surgeries. But fine really. obviously now ten years later I’m like well that was a total waste of time but I guess I had tits for ten years that looked ok in clothes. Think DIEP is better as they use your own stomach fat & more natural
looking and long lasting (forever) but I didn’t have enough fat (then!!!). But it’s a more complex operation than implants I believe.

anyway you might just need a straightforward lumpectomy - try not to worry, although of course yes you will. Good luck. You’ve done the hard bit. x

@MrsPnut Did you ever get the info back from the machine that was going to show what happened when THAT incident happened?

I just had my first appointment to discuss DIEP reconstruction. They give you a CT scan to find a suitable abdominal blood vessel to take for reattaching the fat & skin when making the new boob, but they don't normally use this scan for checking possible recurrence/mets. I thought this was bonkers as it'd be horrendous to go through the major DIEP surgery & then find something else was going on so I specifically asked to make it a "staging" scan too. Hopefully there will be nothing to stage 🙏

@HauntedDishcloth Yes, although it only came back recently. The chief nurse and patient advisor went through it with my prescription and the nurses account and there are many discrepancies. They are meeting with the nurse to discuss them so I can have the final report and then we can put in my letter of claim.

Ah you’re all lovely, thank you so much for your reassuring stories. I have the surgeon appointment a week Wednesday, where they will tell me the type of surgery I’ll be having, and the date. What will be will be, I’m just trying to not think about it to be honest, I’ll deal with it I’ve I know what I’m facing, but obviously brain whispers and worries are creeping in!!

Glad your picc line is ok @mowly77 …it’s SO much easier than the cannula isn’t it?

@Silkierabbit hope today goes ok for you…

Hope everyone had a restful weekend?

Love yo everyone as ever xx

Hi all - just checking in. I'm feeling much better now and actually left the house on Saturday for a trip out. DP took me to get a PCR done and then we went out to our local garden centre to have a coffee and get stuff like new gardening gloves. I think that on top of everything else, I have hay fever which is why I've felt so low but I'm back to scoring normally on Pop Master (my brother and I compete against each other) so I am definitely getting better.

I'm glad that your PICC insertion went ok @mowly77 . I'm having mine done this afternoon and then I'm having bloods done through it tomorrow. Then I'm on to cycle 2 on Friday so I'm hoping to get out and about a bit this week. I am secretly pleased that vacuuming is a no-no so my DP will have to continue doing it but it is my most hated household chore so I may make it his permanent job! I hope that your DP steps up more - I think that sometimes partners try to ignore our 'bodily failings' because they dislike change or they don't want to accept that their comfortable existence is changing or it's fear and it makes them angry. My DP is under no illusion that if he lets me down (yes, he does have a history of very selfish behaviour) then we are done.

How are you doing @Mycatispretty ? I found that my mood decreased for about 5 days which is the post anaesthetic effect and then soreness kicked in in the wound areas. I found the underarm wound hurt more but that the actual lumpectomy site took longer to heal. I found gentle removal (low adhesive) patches worked best in covering the wound if it seeps a bit - I got mine from Boots. Don't forget to wear a bra 24/7 (and take paracetamol regularly). I went without one at night at about week 4 because I was fed up with them and I regretted it the next day so I'm still wearing a bra all the time even now. I found a lovely soft one at M&S so bought four plus a couple of sleep bras. When do you find out your results and treatment plan? The best advice I can give is to go with the flow as what the doctors say before hand often doesn't become the reality. I was supposed to be surgery followed by radiotherapy/Herceptin but what I've ended up with is the full works (so to speak) because the doctors have to adapt to what they find rather than what they guesstimate prior to surgery - my breast consultant didn't know how aggressive my tumour was until surgery when they found that it had grown a half centimetre in a month. There will be low points My Cat but there are better days and the good days do increase - just try to roll with the punches.

Thanks TooNoisy Yes the surgery was fine for me.

I cancelled the PICC, just too anxious and depressed and no-one able to answer questions and they were on before about stopping chemo anyway as my side effects are very severe for neuropathy. An oncologist is supposed to be calling but not sure if todays chemo is now on or off.

I cannot speak to an oncologist until 5 May so they have cancelled today's and next weeks chemos. The nurse reckoned that you can only have daily injections for blood clots not the tablets though Macmillan nurse reckoned tablets are an option though everyone seen with a clot seems to be on daily injections for 3 or 6 months. The Macmillan nurse said also be very careful with the level of neuropathy I have as that will often go to permanent and problems walking, had problems walking in week 3/4. It was mainly no feeling in leg for a couple of days and pins and needles / numbness in feet for all the time but lost balance around 3 times. She also thought if stop early benefits are roughly proportional, she said they don't like patients to know that though as best practice is full course and encourages them to stop early. I am 1/3 way through but last 2% of benefit overlaps with hormone therapy so a potential 3% more benefit if continue to end over 10 years. But they think that will not be possible due to neuropathy. At the moment its just tingling again but its only week 1 again after a weeks gap.

At least can have 1.5 weeks to try and sort children's things and house and research Maine Coon cats.

Oh @Silkierabbit you sound like you’re having a rough old time of it. No oncologist until May 5??? What’s that about??? So you can now ditch the chemo & get on with immunotherapy??

as for me after all my positivity over the weekend … I’m back in A&E again. I was spiking a temp of over 40 this morning. The chemo unit said if my partner didn’t take me to A&E it could be fatal. So yeah that’s relaxing. I think the picc line’s still fine though yeah …

Oh ffs @mowly77 …I honestly don’t know what to say to you! Apart from sending you love.

Thats rubbish @Silkierabbit, 5th May? Shocking.

It’s just one thing after another. Cancer really is the gift that keeps on giving isnt it 😩

So sorry Mowly hope they can sort that out quickly and get you back home, does not sound good. I have not had a temp with Pax so far, infact goes low. Do they think you have an infection and/or sepsis? At least you are in hospital now so should get it under control.

I have no idea why no-one can speak to me before 5 May apart from the nurses who are nice but don't know the answers. Not ideal. I have no idea if they are now cancelling all chemo, just delaying two weeks or what. If they are cancelling would rather just get straight onto radio though what has come through on appointments is 2 cancelled chemos and 2 later ones so maybe they think they will continue but there appears no plan/solution. It is crazily busy there, very short staffed and they are running around and that is why I am being super careful with it as I don't want to end up with infection or blood clots. All the nurse would say is more people don't have blood clots than do or I can have PICC line in then have it immediately out but I want to find out answers before A&E.

No idea if delays are harmful either but don't seem to be any other options. I guess I could pay and ask private oncologist but I really need to know what my hospital do. The Macmillan nurse was more helpful and looked it up and said according to NICE guidelines they can give tablets but hospital are saying they won't and will stop chemo early anyway. My oncologist is quite keen to stop my chemo, suspect due to staff shortages as much as neuropathy though Macmillan nurse said that's very severe neuropathy and be very honest or you will get left with permanent damage. I expect they will cancel it all but no idea, nurse said just to take it as 2 week break. I did establish from Macmillan nurse that highest risk for blood clots with PICC is on insertion so getting bits of information. Though I don't want treatment pushed into summer holidays if can avoid it.

I guess try and forget about it for now is all I can do so am just looking at Maine Coons to distract myself. I am trying to persuade DH into a large male floofy tabby Maine coon, he said its too large but he is weakening. He is after a female.

Sorry that posted 3 times and did not even include MC picture.

@Silkierabbit loving the focus on the Maine Coon yes nice and fluffy and comforting. That’s just the thing you need. I’ve always wanted a Birman myself but I’ve got two black DSH rescue cats … black fur fucking everywhere … had a beautiful fluffy ginger girl before and I still really miss her. Although my cats are delightful as all cats are indeed …. I’m sorry about all the information you’re getting or rather not getting … sounds like an absolute shitshow. I hope the hospital/Macmillan nurse helps you sort it out and you have some clarity sooner rather than later. What a confusing situation for you, I’m really sorry.

I've got a chest infection apparently but that does not make sense to me. I think all of my symptoms are not from the pax but from the bone injection for my mets, demosobab; they say it gives you flu-like symptoms 48 hours after and that was bang on time. All weekend I was fine! Did loads, even went to a wildlife park with DD and saw actual bears. Grand, thinks I. As I went to bed Sunday night I felt a bit fluey as expected so took some paracetamol, temp
normal, got ready for a nice night’s sleep. Nope. Woke up in agony at 6 feeling like I’d been run over by a truck & done 12 rounds in the ring. Sucked down some more paracetamol and codeine. Drifted off a bit until I heard DP take DD to nursery by which point I was fucking delirious tbh and in excruciating pain all over.

Stabilised now a bit and WONDER OF ALL WONDERS I HAVE A BED IN A ROOM ALL TO MYSELF.

I have to stay here for two days apparently for IV antibiotics. My heart is breaking for DD as once again I’ve disappeared when she was at nursery.

Birmans look lovely Mowly not heard of those before. I sent DD a picture of the MCs today and got a reply we should get two. As we already have 2 pets it will be just the one.

Yes no idea what is now happening with my chemo or whether delays cause issues in success rates but next week I see oncologist on 5th and also I saw I have dexa bone scan on 4th. I was wandering how was going to manage that on chemo as makes me half dead first few days but that solves that. At least chemo is fairly borderline in my case, 6% benefit over 10 years and will just try and forget about it now and do house and cats and schools / exams for a week and a half.

So sorry you are so ill again Mowly but glad you have a room, I had that once in A&E mid pandemic when the hospitals where empty and it was so much nicer, as hospitals go. Had about 20 staff to myself as well, complete opposite to now. Hope you can get out of there quickly and well soon. Never had infection on the Pax, its the lowest risk of the chemos for infection, think they said to me the sepsis rate is 1% on it and if you monitor temp and call immediately it won't go to sepsis so doubt its the Pax causing the infection. I do get very out of it on it sometimes but pain is more annoying than extreme, just like a mild flu. Strange they are saying chest infection with all over pain though its probably antibiotics whatever. I know I have been in before and they've said an infection but they don't know what one. I did get chest pain from ondansetron and also hard to know what combinations of drugs do. But Pax its mainly just neuropathy you have to watch out for as well as taking temp each day. Glad you managed to get out at the weekend and hope you are back home soon.

Goddamnit they are moving me to a ward

one night of glorious isolation is all I get

and I was woken up all night and morning as it was bloody knackered

Your poor thing Mowly Hope you can get out of there soon and back to your family.