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

Some time ago I posted about a new drug that had been found to be v effective with b.c. secondaries in the lungs. At the end of a 6 yr trial, one stage 4 patient was still going strong, living a normal life, tumours had completely disappeared. NICE had approved it, but, mega-expensive, only NHS Scotland were proposing to use it. Feature story in the Mail, picture of patient. Only a few lines in the broadsheets. I think it might have only have worked for one group of bc patients. Triple negative?

Anyway, no one picked up on it although I know there are Scottish patients on here. And I haven't seen anything else about it in the press. Might be worth asking your onc, or research on line for those of you who know what you're doing with professional papers? (Very much not me!)

@MissSmiley

So sorry about the pain and dire rear. I didn't have pain, or was so drugged up I didn't notice. But after I had a feed through my NJ tube, after 6 days of only liquid, the resulting exodus was pretty spectacular. (And v embarrassing with an exceptionally unsympathetic night nurse.) It settled down when I was able to get home and gradually weaned myself off an ultra-low fibre diet. But I appreciate that I still have a functioning duodenum and jejunum, so much easier for me.

The other thing was that I had a visiting surgical nurse team for nearly a week after discharge. At first daily and then just a phone call before a formal signing off. Are they planning something similar for you?

@Silkierabbit Just reading about bird flu. Sounds as if your unorthodox living arrangements mean your silkie is in the best place.

@mowly77 welcome to our lovely thread, sorry you find yourself on here. I also read your other thread and it must be so hard for you. I can relate to your frustration as I had similar problems getting my treatment started for stage 3c ovarian cancer. I saw the gynae early October 2020 and all the faffing around meant I didn't start chemo until January 2021. It was one excuse after another, they were always going to 'ring me back' and I had consultants remind me that there was a pandemic going on, did you know. I felt so weary, defeated and degraded with it all, fighting and chasing up everything all the time. Looking back, I wish I had made more of a fuss in my role as cancer secretary but I just felt too ill and didn't have the energy.

@Thymeout thanks for that - I’m trying to research all these treatments and ask the oncologist - if I get to see one before I drop dead. I am pretty good with understanding scientific papers etc and always ready to quote NICE guidelines at drs so that’s really helpful - thank you - if anyone needs any similar help with science stuff let me know. I’m an editor and journalist (broadsheet and journals only! Not the Daily Fail I promise) and I have an MA in science journalism. Also having had cancer once before helps … not my first rodeo. Honestly anyone please shout if I can help in any way.

@MissSmiley oh no - yes that’s the worst - the clenching agonising pain right before you realise a torrent of liquid is going to pour forth from you. Hope it passes soon and you can see visitors again for a bit longer. But more to the point fingers crossed that you can go home tomorrow!

Well its a year since my op for OC, and I cant believe where the time has gone! This time a year ago I was sh*ing myself at the thought of a major op and coping alone at home afterwards. Its also nearly 3 years since diagnosis and I originally wasnt suitable for op and thought Id be long gone by now. Still getting in a state just before monthly blood test though as its expected to return. I think Fizzy Orange was going through similar at the same time (or may be another poster !) Anyway a bottle of wine waiting for me to start on this evening in celebration. Hope other posters have similar reasons to celebrate

Congrats @thereisonlyoneofme any reason for wine especially when we are all living with such uncertainty. My friend with OC lived much longer than she expected to as well and we had lots of wine at various points to celebrate small victories.

Hi everyone, hope everyone is doing ok. Had my CT scan today, the hospital called this morning to say there was a cancellation if i could make it. So scared now waiting for the results

@thereisonlyoneofme I name-changed recently from FizzyOrange, and my 'anniversary' is next month. I've done a lot of thinking lately about 'this time last year' and it was such a dark time. I'm the same, the monthly blood tests cause my anxiety to ramp right up, I wish I could just relax and it's never far from my mind. I'm hoping you enjoy your wine!

@AFB2022 good news you've got your CT done, another thing ticked off and you're a bit further along now to getting some answers. The waiting for results is truly the worst thing. Have they given you any idea how long you will have to wait? Thinking of you Xx

Hi Thereis and Fanta
I’m in hospital now after my op (primary peritoneal but same as ovarian, near enough) and it’s good to hear from The Other Side of the Mountain. Enjoy the wine!

@MrsWooster hoping you're recovering well and will be able to go home soon Xx

Hello
I feel a bit of a fraud posting here as I know nothing yet, but thanks to pain and feeling a lump I’m confident my mammogram etc tomorrow will be bad news. Anxiety has turned to terror, which is silly at my age (50s) - though, as my husband said, we are all just ‘old children’.

I can’t seem to get a lid on it, though, so if anyone has tips for getting through that night before (don’t sleep well at the best of times) I’d be very happy to hear them.

Welcome Hells, hope its not breast cancer. I have that and did have a lump and pain but 90% aren't cancer so odds are on your side. I would try to sleep/rest but if you can't I would watch some trash TV like Below Deck or similar/Netflix gentle film to distract yourself or anything you find distracting and try not to think about it. Easier said than done.

I had my first chemo today, weekly Pax first of 12, it went fine though 3.5 hours there and 1 £60 parking fine but the normal car parking is 30 minutes walk and lots of heavy stuff and anxious plus we were running late. There's a bus from car parks but don't really want to use that with covid levels on chemo. I think next time DH may just need to drop me off and carry my icebox in and hopefully will get away with that though wanted him around outside and only just got allowed to have him in hospital with me (though not in chemo part). Though now been through first one at least know what happens.

I have been really exhausted and could not stay awake but they think its the piriton as had equivalent of 2.5 by them and 1 normally sends me to sleep. Hopefully will wear off soon. Drinking a lot and eating little and often helps. Other than that burning mouth, no nausea, only mild stomach issues once, few pins and needles in feet and some chest pains and now bit of a headache. At least one done. Phoned chemo line and drowiness was OK but they may need to change my meds. Were worried a bit about chest pains and said to call 999 if persist but they are not that bad and think its more something like indigestion / meds side effects / anxiety though don't normally get chest pain with that, comes and goes and no obvious sign of blood clots, pulse is low at 62ish and oxygen levels are normal. Will see how it goes tomorrow.

Yes I think the silkie is in the best place Thyme with the bird flu and the previous awful weather, weather is starting to get better here but silkie seems an indoor convert.
MissSmiley Hope your hospital escape comes soon.

Podge Sorry about your Dad, hope he improves.

Mowly Hope you make progress. I also was asked straight after being told alone due to covid had cancer on a Friday and could be any grade including grade 4 have you got anything nice planned this weekend. I guess its just making conversation but I was tempted to reply sure I have a cancer celebration party planned as it just seemed very tone deaf.

Love to everyone else. Glad I managed to get out for the day to Bempton Cliffs on Sunday for a lovely cliff walk, no puffins but lots of other birds.

Hi fantasea, no time frame given for results, they just said gastro will contact me. I'm really struggling and feel like i'm constantly going to have a heart attack my heart is beating that fast with anxiety.

@AFB2022 you poor thing, I was like that at the start of all my troubles. My GP was really happy to put me on a low dose of beta blockers, just 10mg night and morning, which sorted it out almost instantly. I'm now on 3 tablets a day which doesn't stop the intrusive thoughts but stops the heart racing feeling. Really hoping you get some answers soon, the waiting is awful.

@Hells2Bells thinking of you today

@MissSmiley I really hope you have managed to escape, there is nothing like being at home to speed up your recovery.

@MrsWooster Likewise, I hope you get home as soon as possible.

@thereisonlyoneofme I hope you enjoyed your wine, I know I feel a little wobbly on all of my anniversaries.

@Podgedodge I hope your dad is ok, hopefully you can have a video call with him soon.

@AFB2022 Hopefully the CT scan results come in soon, scanxiety is so very real.

@mowly77 I was really pressed into going private after my first breast surgery to see the oncologist. I was told that there was a 6-8 week wait for an appointment and my cancer was much more advanced than they first thought so better see him sooner using your insurance. Even now, they are so blasé about waiting and timescales if it's to suit them but if you ask to wait then you may as well be signing your own death warrant. I wanted to delay my first annual mammogram until after my radiotherapy and was told that I might be damaging my health by waiting.

@Silkierabbit Glad yesterday's chemo went fairly well. I always used to be wide awake after chemo due to the steroids but I had doc not pac so can't compare the two. I am a little jealous of your trip to Bempton, we love it there and used to visit every spring whilst my MIL lived in Bridlington.

I saw the plastic surgeon yesterday and he recommends we take my port out and then wait to see if that helps my chest to heal. We will need to make a larger incision than my current hole but it should help.
Of course he's never done this before, like all the medical professionals I've come across. He has at least done a debridement of an extravasation in the chest and skin graft which is the final option we have if it doesn't heal in 6 months or so.

I also had my first mammogram today, and started with the assistant, she went to get the mammographer because she wasn't sure and I ended up with the consultant. There was a lot of head scratching because they have never done it before on someone with an extravasation in the chest. They did the damaged side a little more gently than the cancer side and said I should have my results in a few weeks. I have also had a call to attend for another radiotherapy planning scan on Tuesday so we can try and get that underway.

On top of all of that, we are going to Seville this weekend for what was due to be my end of treatment treat. I have told DH that as I haven't finished treatment, we will have to book something else for when I have actually finished.

@Hells2Bells I'm sorry, I missed you off my post. I hope today goes ok and the lump turns out to be something innocuous.

@MrsPnut great post. They convinced me to stay another night so I'm still here waiting for final bloods and for my meds, hoping to be home by teatime. Five weeks and two days since I have been at home.

Love to everyone else on your journeys, I'm thinking of you all.

Hi everyone, the hospital called me today and i have a telephone appointment with the consultant on thursday afternoon. So scared right now especially as the CT scan was only yesterday so seems very quick

Hi @AFB2022, I know you are scared, and why. The only thing I can say to you is that it’s really good that you’ve been given an appointment so quickly, as you won’t have those weeks of worrying. I know it’s really frightening, everyone on this thread has been where you are and we all understand. I’m keeping everything crossed for you that you get good news, but all I will add is that if it’s not the news you’re hoping for, you will be getting a treatment plan really quickly, and I know you won’t believe me, because I didn’t believe anyone when they said it to me, but getting that treatment pathway will make things much easier for you, because then you just know what you’re facing and you get swept along with it, step by step. Just keep breathing til Thursday and do whatever you need to do to get through.

We’re all here for you.

Sending love xx

@AFB2022, I have nothing more to add to what @TwoBigNoisyBoys has said, she has said it beautifully. Hang in there.

@AFB2022 I echo what @TwoBigNoisyBoys said too, we're here for you, we've all been there x

I have a happy update! I'm home!
5 weeks and 2 days in hospital, I could barely walk from the car to the sofa because I'm so weak but I'm home x

@AFB2022 definitely what @TwoBigNoisyBoys said. Once you get a treatment plan you get a rhythm of appointments.
When someone tells me I’m brave for having cancer, I reply that I just turn up and people do things to me. It’s an alien concept if you haven’t lived it but it is very true.

@MissSmiley Fabulous news, now you can start your real recovery.

@AFB2022, @TwoBigNoisyBoys has said it perfectly. We've all been there so let us help you while you wait Xx

@MissSmiley oh brilliant news, you must be so relieved to be home. Hope you're resting well and your children must be so happy too Xx

@MrsPnut the brave thing is strange isn't it? 'You're so brave', but there's no choice, I reply, 'I just show up'. That always seems to confirm even higher levels of bravery than they previously had suspected!

@MissSmiley that’s brilliant news, so happy for you 🥰