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Cancer Support Thread #80 Newbies Welcome

999 replies

HumphreysCorner · 28/05/2021 14:47

Welcome everyone old and new. Feel free to post a quick update to help new and old follow.

HC x

OP posts:
Thread gallery
7
Llioed · 29/05/2021 06:28

PS - 37 years old here with a very lovely DH and an excitable 6 year old DD Smile

PhannyPharts · 29/05/2021 08:54

@Babamamananarama I play retrieve from my sofa and there are some tricks you can teach like a hand touch, giving paws. The company of animals sell lots of doggy brain games and puzzles. My training club also posted a load of videos for free during lockdown. I could try to PM you the link if you're interested and I won't be offended if you're not Grin

PhannyPharts · 29/05/2021 08:57

@Llioed my son is six. It's a really great age isn't it.

Llioed · 29/05/2021 09:10

@PhannyPharts 😂 yes it really is, my DD is very funny!

JeanLannes · 29/05/2021 09:53

Hi - thanks for the new thread. I’m 51 with Her2+ BC. Have lovely DH, DD’s (14 & 12) and gorgeous DDog who does not leave my side. Like Top have just lost my lovely DF. He did not know about my illness and I’m pleased he did not have to know as he would have been so upset.

@PhannyPharts - I am on weekly carbo/pac. 5/18 sessions done. Also having 3 weekly Phesgo. It’s ok for me. Constipation and minor nose bleeds are my side effects. Did have diarrhoea but think that was the metoclopromide so have changed anti sickness meds. I am on weekly because of a naturally low WBC.

First interim MRI is booked in a month and I’m already feeling apprehensive.

Hi to the newcomers. Sorry that you find yourself here but this little thread is so supportive and has been a safe place for me away from rl.

FizzyOrange · 29/05/2021 13:56

@twointhemorning my surgery was with a gynae oncologist and also a colorectal surgeon as they presumed bowel involvement from my scans but luckily there wasn't any when they opened me up. I was absolutely terrified as I had never had a GA but it wasn't as bad as I had thought. I have had 5 ascitic drains and had 10 litres drained on 3 of those occasions. I am quite small to start with and looked full term pregnant. I also was so uncomfortable and was filling up after a couple of days each time. I had my final drain after my third chemo and since then it hasn't returned.

thereisonlyoneofme · 29/05/2021 14:02

Hi, my "journey" as follows. Diagnosed Stage 3 OC June 2019
6 chemos, told no benefit from operation as underlying comorbities and spread of disease. 7 months rest no progression, then it started moving again, so 6 more chemos, different type, and new consultant who referred me back to surgeons. They agreed to operate this time!
Full debulking, plus omentum plus appendix, which they found a rare cancer on. 10 weeks on from surgery and back on two lots of chemo then a maintenance therapy. Dont know if prognosis is now better
or still considered palliative treatment. Feel physically good but mental health dodgy!

MrsPnut · 29/05/2021 18:25

I have been out today au naturel, to M&S food and Sainsbury's. I almost forget that I have no hair and just wander around oblivious.

I've also enjoyed the sun in the garden all afternoon, a few G&T's and now opened the wine. Dinner might happen at some point or if not we have a fridge full of stuff.

AlbertCampion · 29/05/2021 18:56

Hello. Brief history: 45 yo, DH and 8 yo DS. Diagnosed with what they thought was DCIS in my left breast. Had a lumpectomy and it turned out to be invasive. Had a second op - and it turned out it was in my sentinel node, too. Six rounds of EC chemo, and I am now halfway through radiotherapy. Have also just started tamoxifen, which I will be on for five years. Just started a phased return to work and sometimes I feel hopeful that I can return to normal, and at other times just overwhelmed.

I am feeling a bit weird this week. DSis got referred to a genetic service because both my mum and I have both had breast cancer now, so she was understandably worried. They have come back saying that it looks like there is an increased risk in our family and she should have yearly mammograms. They've also advised that I should get further genetic testing. I would cut off my arm to stop my sister going through what I've been through - we are v v close. So I am v pleased that she will get regular checks. But there is also a part of me which wishes we had known this before - then maybe they would have caught my cancer earlier. I feel guilty for feeling like this and I am not even sure what it is I am feeling - I'm just very mixed up!

PhannyPharts · 29/05/2021 22:20

@AlbertCampion due to the nature of my cancer (but not because of family history) I have to have genetic testing too and I can relate to what you're saying. I have an older sister and the worry for her at the moment makes me feel terribly guilty. I'm still waiting on a date having being referred to the local hospital for testing and id like to know one way or the other so she can be more regularly checked too. Lots of love to you. It's another element to an already difficult situation Thanks

NogbagTheBag · 30/05/2021 02:41

Hi everyone, sorry to all the newbies who find themselves here.

I'm 35, DH and 3 ds's (9,7 and 8 months). Diagnosed at the start of May with invasive ductal breast cancer, triple neg.

I started my fec chemo this week, on weds. It went ok at the appointment and mostly felt tired and nauseous later on, until I started being sick and couldn't keep even sips of water down. The GP came out and gave me a shot of something that didn't help, so I went to hospital and they gave me another drug which also didn't help, finally they gave me one that did and I had to spend the night in hospital to check it was all ok. They gave me an additional anti sickness tablet to take, but I'm terrified of it happening next time too.

I'm also feeling slightly coldy, but no temp. Is that likely to be a symptom of the chemo/drugs or something I should worry about?

We've just come away for a few days with family and I really don't want to be ill, just for a few days, for the kids benefit as well as mine.

Sorry for the long ramble, I know so many of you are going through worse.

backformore · 30/05/2021 03:28

Gosh, the new thread came around quickly this time!

Hi to all, and welcome (and commiserations) to the newcomers. I'm 39, married with two kids (8 and 3), diagnosed with triple-positive BC that had reached a couple of nodes last December. Started with chemo (FEC-D), which reduced a 4cm tumour to 6mm, then surgery last week (lumpectomy and sentinel node biopsy; first surgeon wanted to do a full axillary clearance but I got a second opinion and the next one advised a more conservative approach given my apparently good response to the chemo on MRI scans). Currently waiting for pathology. If it's good, I'll move on to radiation; if not, more surgery (either AXD and/or mastectomy).

Those who had the sentinel node biopsy: how long did it take you to get over the nerve pain afterwards? My surgical site itself is fine, but my arm burns and feels like the skin in sticking to my side a lot of the time, which I'm guessing is down to nerve damage. It's not debilitating but it is annoying. I'm doing the exercises every day but worried about not having enough mobility in time for radiation to start on time. Just feeling a bit tired and fed up!

PhannyPharts · 30/05/2021 08:06

@NogbagTheBag sorry to hear you had such a rotten time after the FEC. As for the cold feeling- is it a sore throat or shakes and shivers?

MrsPnut · 30/05/2021 08:16

@backformore Mine is pretty good 7.5 weeks post surgery. I had a full clearance but I have full mobility back and the funny feeling has mostly gone.

@NogbagTheBag I had a sore throat the week after FEC but it didn’t develop into anything else. I’m sorry you got the shitty side effects, it really does affect us all differently.

NogbagTheBag · 30/05/2021 09:27

It's just a scratchy throat really, coupled with tiredness and feeling a bit spaced out.

I think I was doubly annoyed about the sickness as prior to having the chemo I kept being told how well tolerated fec is, how I'll be fine as I'm young and otherwise healthy etc and I'd likely sail through it. I understand people try and keep you positive but when you're a shaky mess on the bathroom floor you just start to feel like somehow you've failed.

AlbertCampion · 30/05/2021 09:49

@PhannyPharts Thanks - it is good to know that someone else has experienced the weird turmoil about genetic testing. It doesn't help that my mum can be quite dramatic and immediately descended into "I've given you all cancer, I'm a terrible person" when she heard, which resulted in having to comfort her rather than process the news. I am also slightly worried about recurrence - do you know if a genetic predisposition means that it is more likely to come back?

@NogbagTheBag I completely agree about the feeling of failure. A few friends told me how easy chemo was and how now, thanks to advances in medicine, having breast cancer was really not a big deal. I know they were trying to be kind, but the result was that as soon as I felt ill from chemo, or traumatised by a procedure, or scared of something, I felt like a failure. But the key thing is that we are all different - there is no "cancer experience" and you are not failing if it happens differently for you. People who tell you it is nothing are talking out of their arses.

@backformore I had my surgeries in the autumn and the feeling of damage/nerve pain has disappeared, but I still have no feeling in my armpit at all and suspect I never will. Can you double check with your breast nurse?

Sending love to all. xx

Bloodybridget · 30/05/2021 10:04

Thanks @HumphreysCorner for starting a new thread.
I feel like a real old-timer now - does anyone else who's been around a long time have a slight heartsink feeling every time a new thread starts? It just reminds me of how long I've now been living with cancer.

My intro: dg ovarian cancer May 2019, no previous symptoms, fortunately investigations for suspected kidney stone led to discovery, so I was then only stage 2 although the tumour was a carcinosarcoma; "rare and aggressive" so grade 3.
Had debulking surgery; adieu uterus, ovaries, fallopian tubes, cervix, omentum and a bit of bowel. Then chemo, carboplatin and paclitaxel. Made a good recovery, had six good months, then a CT scan (I don't secrete CA125 so scans necessary) showed a tiny lung nodule which turned out to be a metastasis. It was removed in September 20, started chemo again (carbo/Caelyx) in November and finished end of March this year. Had a clear scan and have just started maintenance oral chemo, a PARP-inhibitor, niraparib.
I'm 67, live with (female) DP, wonderful family on both sides, lucky me.

There are several newbies I haven't said hello to yet (and please forgive if I had, but have forgotten!) So welcome and commiserations to you all:
@SecretWitch that does seem a long wait for surgery, have you tried raising it with anyone?
@sunflowerdaisies how did you get on with the surgeon on Friday? Ouch ouch at very idea of biopsy - gentle handhold from me.
@Lougle it's so hard waiting for investigations and results; hope this thread will help you manage your natural anxiety.
@twointhemorning you're in the same boat as I was two years ago. It's really good you're having the surgery so soon, although of course you're thinking, gosh it must be really serious if there's a big rush. My op was eight hours, I think, and I spent nine nights in hospital afterwards, but the surgeons were amazing - my scar is the neatest ever - and the care was excellent. I do hope you have the same experience. Do feel free to ask any questions, or PM if you want.
@NogbagTheBag I thought I might have said hi on the last thread, but can't see that I did, so hi anyway!
@Littlestelephant glad you are home, wishing you a good recovery now. Take it easy and I hope you can manage pain.
@Acinonyx2 that's some flipping persistent allergic reaction you're having, poor you. Really crap that it means rads are postponed.
@LizdeFlores feeling exhausted is depressing and annoying, I find, especially when you think it's high time you were perking up. Sending sympathy and a virtual hug.
@thereisonlyoneofme have you got the new motor yet? Please tell me it's a totally bling model, a gold Masarati perhaps?? Am v impressed by your grand extravagance! Come to think of it, the amount I'm shelling out on counselling could usefully be put into a "luxury purchases" pot . .
@TopOfTheCliff you have so much on your plate, dealing with your DF's death, helping your DM; and I'm really sorry about your DC's relapse. Hope he/she can get good treatment and support. You absolutely need time for yourself and every distraction and comfort you can think of. Your friend going on about your hair is astonishing; she can't have realised she was doing exactly what you'd asked her not to but it would have made me just want to terminate the meeting immediately. And people constantly saying "You look so well!" is a weird one too; I get that a lot and find it bloody irritating; for me it's not like I feel they're saying "If you've really got cancer you should be looking ill", more like "You look so well, the treatment must be working and you'll be fine", which is stupid on two counts: a) having OC actually doesn't change one's outward appearance, and b) I could be growing another tumour already, and almost certainly will at some point.
@MrsPnut sorry you are finding it hard being a baldy, I do sympathise (also please forgive me if that term is hurtful for you). You did really well to go out unhatted the other day and I hope the adjustment gets easier.
@PhannyPharts hope you get through last EC with as few side-effect horrors as possible. So true that it's the treatment that causes all the problems (in a way). I won't deny carbo/pacli was hard going for me, but my worst problems were resulting from bowel surgery rather than the drugs. Three of of my six rounds were delayed because of low neutrophils which was v annoying, and generally I had a week of feeling pretty rough after each one, but I did have good times as well. Wishing you as smooth a passage as possible.
@Llioed sorry to hear it's definitely lymphoma - I guess you probably expected that but . . hope you get the treatment plan soon and feel OK about whatever they suggest, whether it's watch and wait or otherwise.
@AlbertCampion I quite understand you feeling sad and slightly guilty about your DSis having to be monitored because of the possible genetic link, but you know it's not your "fault", and mammograms will hopefully detect any issues for her very early. But am crossing fingers she will be fine.

Sending waves, good wishes and love to all - apols if I've missed any big news.

Bloodybridget · 30/05/2021 10:41

Doing another post for this as my previous was so ridiculously long.

TL:DR: how to get on with life and not be always waiting for changes to be forced on us, when there are so many uncertainties?

I'm really struggling with uncertainty atm; there are big issues that DP and I want/need to decide on, but so many factors that make decisions very difficult. Sorry this is so long.

We've been living together for 19 years in a house we both love, inner London, lots of very local friends, excellent neighbours. DP's DS is 20 minutes' walk away and has been wonderfully supportive of us both. Her older DD, SIL and DGS are an hour's drive away.
The house is completely unsuitable for old age and mobility problems; it's on three floors with winding stairs to the basement level which has kitchen, utility and garden access and couldn't take a stairlift. So even if we could both do stairs for the rest of our lives, all food and garden stuff - sacks of compost etc. - has to be lugged down.
The area, however, is v good for public transport, and my cancer care at Barts, a door-to-door bus ride away, has been excellent.
I think ideally we'd be in a house on no more than two levels with option for stairlift; or a bungalow (almost none round here); or a flat with a big terrace - we both adore the garden and DP really wants a bigger one! But I feel in London we'd never get any home we liked more, and flats make me worry about neighbour noise, service charges, it being less "friendly" to visit than our house - it's so easy for people to knock on the door here to speak to us, or wave through the window.

My very dear brother (my only sib) and lovely SIL are permanently in Norfolk now, as are my younger niece and great-nephew. We've toyed with the notion of moving out of London on and off for years, and finally decided to try and rent in Norfolk for 6 months to a year, ideally from this autumn, so that I can have time being well, much closer geographically to my family. And then if we really love it, sell up here and move up for good.
Problem 1: not much at all to rent that looks at all desirable. Nearly all rentals are unfurnished so we'd have to take as much furniture as we needed and store the rest - lots of work and big upheaval for maybe only a few months.
Problem 2: we'd need to get income from this house; there was a chance DP's DS and his partner might have wanted it for several months and would have paid as much rent as we'd need to cover even a high rent in Norfolk - also they could have used a lot of our furniture and we could have taken theirs! - but it seems much less likely now that they will want to do this. So we'd almost certainly have to rent this house out commercially, which is more hassle and I'm worried (probably unreasonably) that tenants wouldn't take care of it.
Just selling here immediately and buying in Norfolk isn't an option, it would feel like far too much of a gamble.
I am pretty sure I could still come to Barts for scans etc., definitely if we were away temporarily.
We just had a few days in Norfolk which were glorious - green, beautiful landscapes, clean air, birds, amazing walks. But I know it wouldn't always feel like an earthly Paradise!

There will always be the next scan, every three months.
Suppose we go, hate it, spend miserable time unable to come home quickly, so I'm wasting "well" time there when I could be happy here?
Will we miss friends and neighbours/hood too much?

I'm not looking for solutions or even advice, really. Just wonder if others are having the same or similar difficulties, or have had in the past.

Lougle · 30/05/2021 10:57

Thanks for having me on your thread. It's a bit funny, having been on the other side over the years. I did a stint on Basingstoke ICU, where there do the radical surgery and intra-abdominal chemo for pseudomyxoma, and I worked in a rapid access breast clinic years ago. I'm not sure if that makes me calmer or more anxious!

It's amazing that 2 weeks sounds like such a short time until you are waiting for something.

HauntedDishcloth · 30/05/2021 11:38

@NogbagTheBag I had a bad reaction to FEC: vomming/dry heaving every 20-30mins the night after. I'm impressed someone came out to you - when I rang chemo support they just said see if it passes! My oncologist said it's better to prevent sickness as it's much harder to stop once it's started. For my second FEC I had the drug Emend which is supposed to be amazing but only reduced my sickness by about a third. For the last session I was given travel sickness patches & lorazepam. I threw up the lorezapam before chemo but the patch worked better as I was only sick 4 times. So next time lobby for as many drugs beforehand as you can get!

I felt awful after FEC until about day 10 then had the "good week" until ready for the next session. I felt like the first FEC was a massive shock to my body (& mind) but the next ones you know what to expect so not quite as horrendous. I had to shield as it was during the last lockdown so didn't do anything out of the house. It's crap but I'd recommend just hankering down at home as much as possible to get through it. & drinking vats of lucozade Grin

Have you had any post-chemo injections like Filgrastim? They can add more symptoms on top. You can take over-the-counter meds but be careful they don't mask anything serious, as you should have been advised.

@Bloodybridget I'll have to give you my standard advice that if you have a desire to do something that's not unreasonable, you should do it - otherwise you'll only be plagued with what ifs & thinking you should have done it. Also goes for @thereisonlyofme about the car!

thereisonlyoneofme · 30/05/2021 11:52

@Bloodybridget
The Norfolk thing, m,y family came from there so Im prejudiced.
If nothing in Norfolk available, why not try Suffolk! I think you have to look realistically at your beloved present house and how it will work for you in the future.
I have bought the car, its nothing blingy just a Suzuki SUV which I always hankered after previously but couldnt find affordable one.
I feel this is meant as it was in a garage a mile away, if it had been some miles off I wouldnt have bothered! My friends have talked me into it because why shouldnt I after the couple of years Ive had. So I told them its their fault and responsibility !

MrsPnut · 30/05/2021 12:00

I’ve always had emend before and after chemo, I haven’t been nauseous at all so it might be that it worked.
@Bloodybridget Go for it, life is too short to not give everything a go. We rented out our house in Harrogate for a year when we moved here. It helped us to decide where we wanted to live and meant we felt we hadn’t burnt our bridges iyswim.
And I never mind about being called baldy. As a family we have decided that I will look like Humpty Dumpty when it finally all goes.

TopOfTheCliff · 30/05/2021 12:12

@thereisonlyoneofme I am so glad you bought the SUV. You deserve some fun! I upgraded to a 33 foot yacht which I am sitting on right now fiddling with rusty switches and polishing her and having a lovely time. Carpe diem! It’s not only the cancer returning that can spoil our plans, there’s arthritis, dementia and god knows what else. I’ve got two close friends just retired and diagnosed with Parkinson’s disease. Honestly I’d rather go through the cancer triathlon than that.
@Bloodybridget my DD is slightly better today taking her meds and being sensible. In previous episodes she has refused to be rescued and brought home so my ExH is struggling with his rescuing tendencies. Even he cannot avoid red list country regulations so she will stay put for now. I just hope her BF copes with her as she can be exhausting when ill.
Hope all are coping with chemo, post op pains and uncertainty.
I have reached a Zen calm here on my boat. It can’t get worse so I will survive it all. Off to whip and splice some ropes!
Top

thereisonlyoneofme · 30/05/2021 12:38

Topofthecliff A 33ft yacht, that trumps my car ! How lovely, Ive always liked being on water even though I cant swim, I always fancied a houseboat

Littlestelephant · 30/05/2021 12:52

@Bloodybridget I also think you should go for it if at all possible. And Norfolk is beautiful.

I'm struggling with a lot of pain and can't lift my arm much. Trying to do the exercises but mobility is a problem. I know I'm only a week in but it is getting me down.

I hope everyone is enjoying the beautiful weather this weekend. I'm sat in the garden with a cuppa.