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

@loubilou4 great news from you too, hurrah! Wishing all the best for your DH.
@albertcampion oh that's tough, must be so hard having to manage a DC while you're coping with chemo stuff. Sympathy!

@loubieloo4 such good news, delighted for you!
@AlbertCampion that is really tough, homeschooling and chemo just don't go together.x

@AlbertCampion that is trying. Lots of movies and screen time (some of it possibly vaguely educational..) would be my thinking.

@loubieloo4 glad to hear that - I may pop into your other thread going forward.

Thank you for the lovely reception, all.

Loobieloo - Ive been reading about how long it took for you to get tested, and your other situation, so it must be a huge relief to at least have THIS issue break your way!

BitoFun - just wondering, but how many treatment lines did you have for Stage IV? It seems surprising that they would say no further treatment available with recent spread to brain. No chance at any clinical trials or brain radiation? I know when they first give the "treatable, not curable" line and the perky "but we treat it like a chronic condition now! Some people can live for many years!" at diagnosis it can seem like there is always another line until.. there isn't. Or your cancer type just plows through them all like a hot knife through butter.

*Babamamananarama" - Im ok with the surgery if it means I can stop being tied to the monthly menopause injections. Chad luvs the ladies - hes 100% driven by estrogen, so his supply has to be cut off. Besides being a literal pain, they really limit life flexibility and while that wasn't so bad in lockdown, in trying to plan upcoming travel its annoying. The BRCA1+ also puts me at high risk for ovarian cancer so while I get pelvic imaging every 3 or 4 months, I'd rather not tempt fate.

This won't be my first surgery - ironically I had a breast reduction 20 years ago. If I'd known about the BRCA status I would have waited to my 30s and just had them removed completely. But when the surgery happened the BRCA testing was just coming out and there was no reason to test for it otherwise.

To the ladies with OC, other gynae cancers, or bowel cancer, I salute you! Breast at least doesn't require pant removal for investigation and care, I cant imagine having the lower half continually poked and prodded for exams or issues resulting from treatments. We all do what must be done and manage it, but that seems additionally stressful.

Hi everyone, I tagged on to the end of the previous thread and was grateful for the warm welcome from you all.
I had a routine mammogram at the end of December and after biopsies, scans and an MRI I received a dx of Invasive Lobular Carcinoma E/P+,HER2-.

I have had a DCIS previously in the same breast plus several HPV papillomas and a couple of cysts so I had intended to request a double mastectomy. My thinking was that when your breast is telling you it is an absolute bastard, you should listen to it! Family history of b/c also.

When I saw my consultant he said that as arm mobility is so important to me (I play tennis, run, ride my bike etc both for lower back maintenance and my mental health) he would suggest a lumpectomy with radiotherapy.
He said if I get a breast cancer reoccurrence after this we could then go for a double mastectomy, the right breast being preventative. He told me the mortality rate would be the same as if I had gone straight for the mastectomy.

I had the lumpectomy and removal of the sentinel nodes ten days ago. I won't find out if the sentinel nodes were clear until 26 March.

I think it's healing well. However I feel as though I have burned my left inner arm from armpit down to the elbow. Also on my back around the armpit feels the same. Painkillers don't work on this scalding pain so I assume it's a cut nerve?

Does anyone have any handy tips re anything I can do to ease this?

I wish I could name check everyone but I can't, I read all your posts and send buckets of love and biscuits to all

@Livelongandprosper I had my mastectomy three weeks ago and the ONLY complaint I've had recovery wise is what I could only describe as the feeling of sunburn under the back of my armpit?! The surgeon and nurses haven't seemed concerned about this but I'm assuming it's nerve related. I have zero feeling in the majority of my new boob which is very strange (I had skin and nipple preserving surgery so all "looks" the same but is not!). I'm afraid I have no tips - although mine has only been mildly annoying at most. I hope your results are good - I know the waiting is the worst bit. x

My chemo starts on the 24th and I'm really dreading it. I don't want to lose my hair (vain I know) and it's weird knowing that you are about to have treatment that'll make you feel worse than the "illness" has.

x

Hello @Livelongandprosper you have asked about the thing that is driving me crazy. After my lumpectomy and node clearance I had a feeling like a nettle rash over my upper arm and shoulder and numbness in the armpit. I had a stormy time with wound healing but that has settled. The pain was fading nicely. I resumed cycling and going the gym and gardening and it has become obvious that exertion makes the nerve pain worse. I am taking paracetamol and ibuprofen and the odd codeine. The nurses have put me back on resting which is making me agitated. I am “only” doing my physio and 10 miles on the turbo bike hands free each day. The pain has settled until I exercise when it comes back. I am considering asking for a trial of amitriptyline which is a good painkiller for nerve pain. A hot wheat bag helps too.
I haven’t got any swelling so I don’t think it is lymphoedema but it is very annoying.
The fact you are only ten days out makes it likely your pain is from freshly cut nerves and will settle if you don’t overdo it like I did!!

@Miava the chemotherapy isn’t fun but it is manageable. Take it day by day, don’t look ahead and talk to your chemo nurses about everything. They are very wise and wonderful. The hair thing seems important beforehand but actually beating the cancer is the main thing. At least you have ten days to get really well again after surgery. Will you have a PICC line put in?
Best wishes to all
Bored Top sitting quietly

Thanks @TopOfTheCliff - sorry to hear your arm troubles. 😞

I'm having a port rather than a PICC. I'm also going to try the cold cap but I've been repeatedly warned that it might not work and I'll still lose hair. To be honest it wouldn't take much hair loss for me to feel like a cold cap (if I can handle it) isn't worth it!
I've been so upbeat and positive about everything and I think the reality of chemo is setting in now I have a date. But absolutely - it has to be done and it'll be worth it. And maybe (hopefully) I won't get all the side effects or it won't be as bad. x

I'm doing ok thanks @KentishMama (and have to say I found your latest update very uplifting, so thank you, and good on ya as they say!)
My surgery went well and I got home same day this time which was great. Unfortunately I developed some pretty acute pain (burning/stabbing) in my side, it was so bad at its worst that I couldn't help but yell whenever I moved. Fortunately, following a tearful visit back to the hospital, I've got a new drug (pregabalin) to add to the cocktail which is helping. And I feel mildly tipsy all the time which I'm quite enjoying. I'm guessing it's nerve pain so am abit apprehensive about how long it might take to heal. I couldn't cope with that level of pain but presumably there's only so long I can safely be off my face on painkillers? I too had that sunburn/nettle rash feeling after operation 1 also guessing that was nerve related. Going in to get drain removed (I hope) on Monday so will ask more then. I think it will be too early for any results to be back from the lab. And I'm glad about that really. I feel a bit feeble about it but I just don't want anymore bad news. I can't face it and I can't face having to share it either. But enough of that. One step at a time!

Quick question, I am feeling so exhausted and breathless, seems to be getting worse every day. Would you call the chemo hotline for this? I guess there's no point really as I'm sure it's not something that requires immediate attention. I was thinking yesterday that I'll try and speak to a CNS tomorrow. The least exertion and my heart's thumping away.
I'm due a chemo two weeks tomorrow and am worried I may be anaemic and need a transfusion again. If that was the case, it would be good to get it asap so treatment isn't delayed.

@Bloodybridget ring them. The sooner you ring the sooner they can correct the problem.

@Bloodybridget is any of your chemo toxic to the heart muscles? That can make you very breathless and even cause heart failure which needs medication. If your ankles are swollen or your resting pulse is shooting up I would give them a call today.
There are several drugs that can cause this. One of the FEC ones, I forget which, and Herceptin as well, and several others. That’s why they do echo heart scans. I have my third coming up soon.
Have a good Sunday x

Thanks @TopOfTheCliff and @BadEyeBri - I think I will just call a nurse tomorrow. I will check and see if there's any mention of toxicity with the drugs, but I've never had an echo heart scan and I haven't got swollen ankles or racing pulse, I don't think.

@Bloodybridget that doesn't sound pleasant. I've always found the oncology hotline Dr's would rather be called than not. But whoever you speak to I hope they can sort any treatment needed very quickly. I felt my heart was beating too fast during chemo and really didn't like it, even though it wasn't actually a medical problem. Much sympathy!

I'm finding my strong meds are mostly keeping on top of my pain today, but not entirely and it really can be agonising. If anyone has any tips for nerve pain I'd be really grateful!

@Lubballoo I am so sorry you are having horrible nerve pain. Have you asked a nurse or doctor about it? I'm afraid I can't make a useful suggestion. Maybe have a look on the Macmillan site?
Well having said I could barely move without my heart racing, DP and I went to a garden centre this morning and I have emptied, refilled and planted two troughs, made apricot flapjacks and prepared a sausage and root vegetable traybake for supper. There's a dance in the old girl yet!

bloodybridget your supper sounds delicious - enjoy! You've also made me want to go to the garden centre - although it's been very wet up north! I never knew how much enjoyment I could get from pottering in the garden before I was ill.

Lubballoo nerve pain can be horrendous and just seemingly unending. It's difficult to put up with - I found getting straight on to the GP/doctors was needed and also getting the right combination of painkillers. Amitriptyline is good for nerve pain. It's an antidepressant, but the dose for nerve pain is below the therapeutic dose for depression. Pregabiline or gabapentine are also good (and can be taken with amitriptyline). There's also your standard cocodamol, trampoline and morphine, etc. Unfortunately it's often a case of trial and error to find the correct balance which controls the pain but doesn't leave you completely spaced out - and it takes time to find it (which seems unending when you just want something to just give you some pain free time). I would get straight on to your doctors to start trying something asap.

I have had a very lazy Mother's Day, and eaten my body weight in chocolate- it's been lovely! Wishing everyone a relaxing and pain free rest of the weekend. 💕💖

*tramadol- NOT trampoline🤣🤣

Thank you so much Zorgoth, hopefully I'll get some extra pain relief at my appointment today, glad to be armed with a list of suggestions. I woke up in the night in agony, rang the ward and got the go ahead to take extra pregabalin, eventually was able to lie still comfortably and get a bit more sleep. This morning it's really bad again. I've spoken with the nurses and dosed up again. It's bearable if I sit here absolutely still so that's what I'm doing. God knows how I'm going to get dressed if the drugs don't kick in! But one way or another I'll get to the hospital and hopefully they'll be able to help. Thanks again!

I have been thinking about the Patience Inn - a joint fantasy concocted on one of these threads in 2019. It was first suggested by @Catnidge saying we were like a group of people sitting in a pub, then @Skap said we should have a clever name for it, and Catnidge then came up with The Patience (as one needs a lot of it with cancer). It was quickly agreed that bacon sandwiches would be available at all hours, and Catnidge then came up with this, which I found really moving:

OK, shall we declare the 'Patience Inn' officially open.
This pub is situated in a volatile, ever-changing landscape, its sign of a bald headed one breasted female creaks in the wind. No one really wants to visit.
However, once you are inside this pub is a refuge for short or long term travellers.
The fire is always crackling, plenty of comfy seats to mold around achy bodies. Our outside garden area is sunny and welcoming.
Food and drink are always available, bacon sandwiches, afternoon tea. You name it, we have it.
Most importantly there is always good company in the Patience Inn.

I am one week away now from my debulking op. I am waking up in the night in a cold sweat now, as its fast approaching and counting down. Iv e spent a few days trying to adapt my house to a non bending,.non stretching, non lifting me which has resulted in a lot of on line deliveries! Im sure when I get home there will be something obvious that I have not allowed for! Ive still got in the back of my mind that when the day comes I will bottle it and not turn up.
Dog is going away for at least a week, and I think that when Im home and she is still not with me that will be very hard.

@thereisonlyoneofme anticipation is hard; I think when you are home again post op you will possibly feel a bit better, glad that it is over and glad to be in your own bed. Have you spend much time as an in-patient before now? I had never stayed in hospital when I had my big surgery in 2019, apart from tonsils aged 8, and coming home to a quiet, attractive and comfortable environment was just fantastic. No bleeps! A bedroom of my own!

However, being on your own will be challenging. I'm sure you have thought of all possibilities of having someone stay with you or at least pop in once or twice a day?

Wish I could offer practical help . .

@Bloodybridget The Patience Inn sounds fantastic and Catnidge sums up what we would all like perfectly.

@thereisonlyoneofme I have my debulking operation for OC in about 3 weeks (still waiting for confirmation) and am also worried silly. I have never had any surgery and all of it is terrifying for me and yet at the same time I want it over. I am so sorry to hear you won't see your dog when you're first home, that must be really hard for you xxx

No Ive never been in hospital for more than 2 days, and I couldnt wait to get out The noise from squeaking trolleys being pushed about at night, nurses with heavy feet, obs being taken ! If there was the possibility of a private room I would take it, but they dont do them at the Hospital Im at. I dont have anyone to stay when I get back Im assuming there will be some sort of care package set up before I come home ?

@Lubballoo I'm just popping in to ask if you have tried applying either a heat or a cold pack to your sore nerve endings? That has always helped me. I use a wheat bag in the microwave for 2 minutes.
@Bloodybridget I'm liking the sound of the Patience Inn. I hope they have a bike rack outside.
@thereisonlyoneofme don't forget the NHS Volunteer responders once you are home. My DH is one and he gets calls to fetch milk or cat food or groceries for neighbours who are shielding or housebound. Most of them like to chat to him.

Re the Patience Inn. One of the horsey sites has similar, its called the Humped Goose! Cant remember why its lost in the mists of time.