Cancer Support Thread #81 Newbies welcome

[TopOfTheCliff]

This is a kind and friendly place for those with cancer or those worried they have cancer (or who used to have cancer) to hang out.
Please introduce yourselves and chat away. No issues are too big or small here.
Top

Merry Christmas to you all too, I can’t help but compare this year to last year.
We went to collect the cheese order yesterday and had my shopping delivered, this time last year on the same day I was having a 7 hour chemo session and radiotherapy. Coordinating action from the hospital.
This morning in the queue for the butchers, I was reminded that last year I was watching the clock so I was back for my taxi to go to radiotherapy. This year, I stopped at Lidl for croissants, came home and ate some then went off to have my nails done.

Saw the consultant today, and the CNS, who were lovely, thorough and reassuring, hope to start chemo next week and are looking at long term treatment and management -a lot better than I’ve feared…
onwards unto the breach, and Happy Christmas one and all.

Merry Christmas & thanks to all on the thread the past year for support & a much-needed sympathetic ear.

I've been mostly in quite a festive mood apart from having to go for a pre-chemo blood test for my next treatment next Wed. Think I might have overdone it a bit getting the house ready as I've had some shooting pains in my mastectomy area - I hope it's that anyway. The worry is always there...

Good morning and merry Christmas everyone. I hope that we are all able to put cancer, treatment and worry to one side for one day at least. I'm at my sister in law's house where my daughter is having a fabulous time with her cousins, much better than her exhausted parents would have managed on their own.

My Christmas present is feeling almost normal after completing my final chemo last week. I'm optimistic that Christmas dinner will mostly taste normal!

Merry Belated Christmas everyone. I hope its been a peaceful one, I've managed to have a quiet one with immediate family and my mum, which was nice.
Keeping our distance from siblings due to Covid risks but outside walks will be the order of the day for when we do eventually see each other again.
I had R4 on Tuesday and the side affects are just starting to appear now, 2 more rounds to go then hopefully a long remission. My lymphoma won't ever be cured apparently but I can expect long periods of remission in between. So that's what I'm hoping for. 🤞

Hello everyone, I've not been on here for months for various reasons. Sorry to see several newbies. I hope everyone is managing to enjoy the festive season.
I was diagnosed with breast cancer in March, had mastectomy and reconstruction in April. I finished chemo in October, had my axillary lymph node clearance last month-no cancer cells in the remaining nodes, nor evidence there ever was, so good news. I
I've started my hormone treatment-Zoladex and Letrozole. Radiotherapy to start in the new year, planning appointment booked in, just hope I can avoid Covid or it will be delayed, DD tested positive on 23rd, so far DP and I are negative.
Also still to come, my first Zoledronic Acid infusion. Feel like the end to the active treatment is in sight, not quite sure how I feel about that as the fear of recurrence is there in the back of my mind.
My eyelashes have fully returned, they just need to grow back to normal length and my hair is growing well, it's a mess as I used the cold cap so have longer bits and the new hair. It started growing back whilst I was having Paclitaxel so if you can tolerate it, it is worthwhile! Sticking with the headscarves until there's more growth and I'll see what my lovely hairdresser can do with it.
Wishing you all well for 2022 x

@Vinorosso74 what a positive message for someone like me on the verge of starting chemo etc, thank you. I hope all continues to go well with you.

Merry Christmas everyone.

I've been diagnosed with thyroid cancer. I'm not sure what type or the treatment plan yet. I had half my thyroid removed in November after a diagnosis of follicular neoplasm from a fine needle biopsy.

I was supposed to have an appointment tomorrow but my consultant has Covid so he called to rearrange and advised they found malignant cells and I'd benefit from further surgery. I'm not sure how I feel, although I'm not shocked. The shock was when I was told I needed surgery in the first place! I just don't want to to this. I'm 36 with a 4 and 2 year old. I've also been diagnosed with MS this year. Just want to go to bed but can't.

Welcome @1haudyerwheesht to the thread no-one wanted to join. I hope you manage to have a proper discussion with your consultant soon and then you can discuss the plan with them. The limbo of waiting is such a hard place to be when the possibilities are so diverse.

Pull up a chair and unburden yourself, we're all here to listen.

Good morning all, I have been reading everyone's posts, my surgeon rang me before Christmas and has ordered a CT scan and wants my case is to be discussed at a different MDT meeting asap, he wants all the options to be discussed as the surgery is so extensive, it looks like it'll be a Whipple procedure, which will mean a long recovery. I'm only 49, I can't find any stats of survival rates after whipple for my type of cancer (duodenal GIST) because it's so rare. I'm going to speak to the sarcoma nurse again today of possible to try to get some perspective.

@MissSmiley

I had a GIST in my jejunum. 18mm. Mitotic rate of 1. An eagle-eyed surgeon spotted it when they were removing half my colon. It was taken out with clear margins. I've only just read up about it because my surgeon joked that it was a Bogoff and the focus obviously was on the colon cancer. From my POV, it just meant an op extended by 2 hrs, a naso-jenunal tube, another drain and 2 nights longer in hospital.

Hadn't realised it was so rare. I just thought of it as a sort of internal skin-tag. 10 a penny. I've only skimmed the limited amount of info on-line. American sites seem best, bigger demographic. Can understand why there would need to be meetings. Is it now a choice between targeted drugs and surgery?

Can understand why you feel poleaxed. Lots of questions you'd want answered. Are you at a major cancer centre? It's not necessarily a bad thing that chemo isn't recommended. Targeted drugs are often better. The stats for melanoma have vastly improved because of new treatments. And it's still a v small tumour. If they decide on surgery, you're still young, in medical terms. Recovery should be far easier at your age.

Yes it's still shit and you need time to process the unfairness of it all. Too early to start with the 'well, at least....' (If it's not obvious, I'm the Pollyanna of the thread. You'd probably have blocked me irl. Tho' I am trying to rein it in. I won't tell you you're a fighter and you've got this.)

In my other role as Mr Tambourine Man, low-dose anti-depressants, with Valium for special occasions, really helped me steady my head.

Hello all, and a happy new year!
I hope you won't mind me skulking around a bit, as I have just had a blood test to check for signs of lymphoma (lump in neck) but will also be having it scanned.

Have felt so unwell for a long time, and was told the lump was probably as a result of all my other ailments, but decided to be brave and tell my gp I wasnt really happy with "probably".

@Thymeout thanks for your reply, I have met a woman local to me who had a gist in her jejunum, hers was larger but had a resection, the problem with mine is the location and the probable whipple to get rid of it is major surgery.
I hope you're doing ok now, when was your surgery?

Anyone had problems with their teeth after chemo. Im a dentophobe but went for a check up prior to diagnosis, in 2019 told to come back in 6 months. Meanwhile chemo and Covid intervened. So went back last week as my teeth feel like they are standing on end when Ive been outside and come in again, so sensitive. Told to come back in 6 months again an d use special toothpaste. I know Ive got decay in several teeth but nothing mentioned, no x rays (NHS) Im sure the chemo hasnt helped. I think Ive been fobbed off because they are so busy trying to catch up. Dont know whether to push for treatment or go private somewhere else. Were you told to have dental treatment before starting chemo as nothing was mentioned to me.
sorry bit of a rambling post, I feel rambley today !

Hi just after a bit of advice, 2 years ago I was diagnosed with cancer and every year I have an ultrasound on a lymph node that looks a bit dodgy and then that ties in with my annual check up.
How do I learn to cope with the fear of my check ups, I thought it would get easier as time goes on but it hasn't its got worse, I dread them I get scared.

@MissSmiley
Yes. I'm fine. 2 years since surgery. Just usual aches and pains of getting older. Good distraction from worrying about recurrence. Can say to myself, 'Well, what do you expect at your age?' instead of thinking every twinge is a sinister sign of the beginning of round two. I'm in a v different position from most of you on this thread. Live on my own with dcs all grown up. Not ready to go yet, but it's the how rather than the when that's of more concern.
Re Whipple, I remember they covered it in the last series of Hospital on BBC 2 or perhaps the surgery one if there were previous series of that. It sounds like the Mt Everest of surgery but you'd be one of the younger patients. I know someone in his 60's with pancreatic cancer who's hoping to have it.

@thereisonlyoneofme

I have toothache at the moment. My dentist used to be NHS but went private because professional development became impossible. I've always had rubbish teeth and gums. Even before chemo, my mouth was on palliative care. I've had umpteen x-rays and I think my current problem isn't decay but a receding gum line exposing parts not covered with enamel. Every now and then I get a flare-up along the nerve. And chemo does cause gum problems because the fastest growing normal cells are the most vulnerable - or that's what my oncologist said. Haven't tried specific toothpaste yet. Hoping it will die down as it'll be difficult to get an appointment and I 'm trying to stay in at the moment. Covid hotspot here. Would be interested to know how you get on.

Evening all.
Thankfully my PCR was negative on Christmas morning so we had a lovely gathering with DH family. My cold is now better and I’ve seen all my favourite people. We now have an epidemic of neighbours and elderly relatives falling over so we are on speed dial to go and pick them up again which is keeping us on our toes. Tonight it was FIL 89 who has probably caught my cold and is “off his legs”. I did warn them before they came over for Christmas lunch but I still feel a bit guilty.
No news about my mammogram yet but I don’t suppose anybody in the Breast Care Unit has done any secretarial work for a while. And if it had been bad I would have had a message by now I am sure.

@user6700987 we don’t have a solution here we just understand The Fear and hope to learn to live with it. I adopt head in the sand/cheerful denial as my coping mechanism. Can you keep busy and distract yourself with decluttering or writing thank you letters? Anything rather than dwelling on the What ifs. Sending virtual hugs across the internet.

I think after a month on exemestane instead of anastrozole my joints are actually less inflamed and I am not in as much pain. Hopefully this isn’t just because I have been resting more while I have had the cold. I am feeling very blobby and unfit after a week of slobbing.
If @Thymeout is the thread Pollyanna then I am Tigger but I haven’t been bouncing just snotting and sneezing!

I am glad there are people knowledgeable about GIST to help @MissSmiley and hope you get a good treatment plan soon.

@thereisonlyoneofme my DH has a painful tooth that is grey and the dentist just gave him special toothpaste to rub on it to calm the nerve. Yesterday it cracked open so I think they are just fobbing people off at the moment. Clearly he needs it fixing properly! Can you eat and drink okay without pain?

Sending best wishes to all. Nearly New Year but not quite! I shall be happy to see the back of this one
Top

@Thymeout thanks for remembering about the BBC hospital program, I'll definitely look that up, I might have seen it before but obviously at the time it didn't have any personal relevance.

@TopOfTheCliff you sound so busy, I'm glad it's distracting you, my previous head in the sand approach has served me well for the last 9 years since my GIST was discovered but now I feel it's showtime! I can't sleep, I can't concentrate, I'm dreading work tomorrow, I'm an accountant and terrified I'll make a mistake because my mind isn't on the game, would it be reasonable to get signed off for a couple of weeks while I find out my treatment plan? I'm seriously considering asking my GP if that might be possible.

My 4th Paclitaxel was abandoned yesterday after I had an allergic reaction to it! Is started 15 minutes into the infusion.

Trying again next week with extra pre-meds and infusion time to be 2 hours instead of 1!

My 18 DS also tested positive too so is isolating in his room. Wednesday wasn't the best!

Thymeout Topofthecliff Not just me then with the teeth ! I havent found the special toothpaste effective, its only different ingredient seems to be higher fluoride content! I get pain largely when Ive been outside and come in and have a hot drink. But I have a cap on a molar at the back which has been throbbing for some time Have postponed the hot drinks until I have been in a while !

Afternoon. I’m starting chemo tomorrow (carboplatin placitaxel?) and, while I’m desperate to start it, it’s brought on the reality. I had a bad do in the hospital yesterday as I realised yet again that I’m not going to live to see the kids grow up. There was one of those moments when I said something like that and the doctors didn’t say “oh, don’t be silly; of course you will”. Tough.

@MrsWooster I'm sorry you're having to face this. Feel free to tell us all about it.

I watched the program at lunchtime that @Thymeout mentioned and I'll be lucky to get through the surgery itself by the looks of it, it's mega high risk but what's the alternative? Leave the cancer there and wait for it to spread? I was awake half the night worrying about work but it's been the distraction I needed today. I'm just feeling pissed off as I had so much planned for next year and the rest of my life come to that. Fucking cancer

@MissSmiley Oh dear. But you''re forgetting about the targeted drugs. Did you manage to speak to the nurse? How about ringing Macmillan helpline for more info about them?

It's your surgeon who's mentioned the Whipple but the oncologist may think differently. Some of the new meds clear the cancer completely and yours is still itsy-bitsy? That's why they need more meetings. Any idea when you'll hear from them again?

Teeth - I think it may depend on where you live. At the beginning of the first lockdown, I had a broken molar. My dentist wouldn't use the drill because of aerosol infection. He just gave me a temporary stopping and told me to hang on as long as I could. Finally had it filled properly in the summer. In SELondon, hospitals have gone back to banning visitors except for childbirth or end of life, so dentists may have reverted to original protocols. But if the the throbbing gets worse, I'd be ringing for an X ray/anti-biotics. They should be giving you priority because of chemo history.

@MrsWooster Are you getting any counselling? Hospital should offer it and Macmillan can provide it, too. Maggie's? Other posters have found it a lifeline. You don't have to cope with all this on your own and it's good to talk to someone outside your immediate circle.

@Thymeout I spoke to the sarcoma UK nurse last week, she was the one who mentioned whipple, then I realised the surgeon had been describing it but hadn't actually said the word (so as not to scare me I guess) targeted treatment won't get rid of it, and it's grown 40% since the last scan. I need to get the CT scan done and see what they say at the MDT but I'm being realistic I think

Thanks, everyone. Ironically, I’m a counsellor! Talk about physician heal thyself. I have regular therapy for personal and ethical reasons and I’ll see her again in Jan but it’s one of those low points. Some talk is of ‘years’ but I’m hitting the wall of kids being on a fixed trajectory-they can’t grow up quicker…