Cancer Support Thread 97: support for those diagnosed and going through treatment

[LiliJilliBobs]

Cancer support thread 97: support for those newly diagnosed and /or undergoing treatment…..
Thread 96 is pretty full - here’s a new one

@FcukBreastCancerhow on earth can they justify delaying results by a week? I can't imagine the stress you've been under in the run up to today
I am really sorry you have to wait.
Did they give a reason?

I've always been super regular with periods and not had much success with contraception - they were every 4 weeks even through treatment. Started within a couple of days of chemo and radiotherapy as an additional fuck you 🤣!!!

Hi all, sorry this won’t be a proper catch up with everyone as I’m a bit knackered. I really hope everyone is doing ok with appointments and treatment.

Been confirmed with grade 2 Follecular. Treatment starts in Jan. Mixed feelings. Feel lucky that its manageable and treatable. Feeling wobbly because its nit curable and that even when I kick it this time it might come back at any point. But I guess thats the same more most people on this thread.

Promise I will come back and be a more group oriented contributor once its sunk in and im less exhausted. But for now a big thanks to eveyone for the good wishes and and my thoughts are with all of you. X

@ForestFlowerFairy results not back. One has gone to the US. I am trying not to read to much into the delay as its happened lots of times already- sometimes it was good news, once it was bad news.

To the USA? Is that for the oncotype test? That happened to me . I thought I’d misheard/ misunderstood them at the time.
My appointment with oncologist got delayed from Wednesday to next Wednesday for biopsy results but I think that’s just he isn’t available and I would rather have him as I know and trust him ( through past TTR.) could get it them off my GP I suppose but will wait and see what he says . Hey ho…
i think we need a thread called the waiting room….

Yes that's it @Nonamelass the oncotype test. Also waiting on clear margin results for second surgery.

@ForestFlowerFairy I hit menopause before chemo although I went on to HRT because I couldn't cope with the mood swings (rage!!!), brain fog etc. I did have hot flushes but didn't mind them as much as the mental and emotional effects. I stopped HRT when I became ill as initial blood tests suggested it could be gynae. So I've also had a combination of menopause and chemo symptoms.

From your list, I think of them as:
Hot flushes - menopause (Stopping HRT)
Tinitus - menopause definitely
Brittle nails - haven't really suffered
Forgetfulness/memory issues - Horrendous before HRT but recently I've been putting it down to the chemo fog. I may be wrong. But it's not as bad now as when I was in peri.
Changes in skin / dry skin - definitely chemo. My skin is incredibly dry now, far more than it ever has been.

@Inthebasement
Good news and bad news. Take as long as you need to let it sink in.
Treatments are improving all the time and, if it does come back later, there might be a cure by then. Meanwhile just concentrate on beating it into submission this time.

@FcukBreastCancer I’m so sorry :(

@Inthebasement My cancer isn’t curable. What’s beyond maddening is that I “had been told” I needed to have an egd several years earlier but I didn’t follow up. I looked at the dr and said “I don’t remember being told that”. I turned to my dh and asked “do you remember that”. He didn’t either. I went through two years of emails and found the message. It was among tons of junk ads etc. I would imagine that was my fault however…the email said that if I don’t respond within two weeks the message would go to my primary doctor. He didn’t call either. So I live from PET scan to PET scan hoping it hasn’t grown. I’m two years down….but it will never be cured. My dad died from it. I’m so sorry to be on a rant but I guess it’s maybe due to feeling sad our dd and her family are flying home today and who knows when we’ll see them again? Ugh. My heart aches for everyone in this cancer family. I hope you all hang tough. I hope on Christmas Day you all are having a good day and you will be feeling good, and things taste good, and your toes and fingers are feeling well. I hope you are on your road to recovery. Love to you all.

It’s understandable you have to wait a bit for that I think. I took it to mean I was borderline for chemo so kind of positive in a way. ( this was for 2nd BC in 2017)

I was post menopause when I was diagnosed @ForestFlowerFairyI had an early meno at 47. The main issues I had were hot flushes (not so much night sweats). Brain fog and forgetting words- remembering names was awful and really embarrassing at work. The worst thing for me was the panicking and the anxious thoughts at night. Obviously I’ve taken these to a whole new level this Autumn. The problem with meno is that the symptoms are so similar to so many other illlnesses/complaints. For me meno was a good thing as I stopped suffering from hormonal migraine from which I’d been suffering since I was 17. I’ve been told the anti-hormone treatment will exacerbate the menopausal symptoms. I agree with @Ohjoyohblisslist.

I'm sorry @FcukBreastCancerpushing back results by a week is tortuous. Has your daughter had her results?

💐 @Inthebasement. I’m sorry to hear your diagnosis but I’m pleased treatment is starting after Christmas and it’s manageable. Like @Ohjoyohblissmine can’t be cured either (originally lymphangitis and now bone cancer too) so we’re all hoping to get it kicked back. I hope you are feeling less exhausted today. @Sbmppnone of this is your fault. If you needed additional treatment your doctors should have organised this, not left it up to you. I hope you had a lovely visit with your family. We Brits find the distances you have contend with mind boggling. Over here a distance of 100 miles or more is considered “long distance”!

I had chemo 14 today. I actually felt pretty good (I think making the decision to take some time off has settled my mind a bit). I have a feeling I will be told that haven’t improved enough to stop chemo, as much lungs seem to be worse than they were a month ago, but I’m resigned to that.

Wishing you all quiet and restful Friday evenings.

Thanks for the sympathy on delayed results. I hadn't thought much about it until it was delayed. Now I'm thinking more about the potential outcome such as another surgery or chemo. I'm ok though. What will be will be.
And I've booked a new year break to one of my favourite places, Tenby. This username is so outing for me now I need to remember when posting elsewhere on MN to change it.

Dd is ok. Gp called yesterday but I knew more than her after the consultant appointment Tuesday and additional bloods. She said it was good blood sugar now normal on retest as that's what she was calling about. Ceoliac test not back.
She was the gp who referred me for my (long ignored) breast lump and is lovely.

As a long time denizen of the Cancer threads I am just popping in to say hello and welcome to the new folks who have joined. We all owe a huge thankyou to @cannaecookrisotto who managed to keep the thread going when it almost faded away. I don’t need to tell you lot how much it helps having this place to hang out during the worst times, with people who “get it!” I wish it wasn’t the case but it’s a busy place again now.
I am about to celebrate five years since evicting Breast Cancer 1 (the triple positive one) and a month till the three year point with Breast Cancer 2 ( the triple negative one!!) Along the way I had FEC-T with Herceptin, AC and paclitaxel and a bonus six months of Capecitabine oral chemo because I am special 🙄 Plus a broken ankle and a hip replacement!
I am battered but well, back on my bike and cycling 100km Audax events at weekends, and have become a Granny to a gorgeous DGS who is 8 weeks old and smiling. Life is getting better again at last.
We have a Great Recovery thread for those who have got towards the end of active treatment where we encourage each other to get fitter and acknowledge the ongoing Fear that all of us live with. All are welcome when you feel ready.
@Sbmpp one thing I always wonder about treatment in the US, do they make the chemo doses lower to allow people to carry on working? There is no way I could have carried on during treatment. Apart from being sick and bald and exhausted I was in health care so wasn’t allowed patient contact due to infection risk during Covid times anyway.
Now looking forward to Christmas with family, trying to dodge the flu and other viruses. After everything I am grateful for all the small everyday joys and don’t need grand holidays or big presents, just the company of my favourite people in a warm house with nice food.

Sending love and strength to you all. Just keep going a day at a time and you will get through!
Top

Wonderful to hear your update @TopOfTheCliff. Congratulations on your anniversaries and the arrival of your grandson. I hope he has an amazing first Christmas with his family around him. Really pleased to hear that life is getting better for you.

What are everyone’s Christmas plans?

We have lovely SiL and her spaniel coming to us. She has been warned that DH is cooking and it will be very low key. She will be happy to chip in. She lost her husband very suddenly at 44 a few weeks before Christmas last year. Last year she carried on with plans she and her DH had made but I’m glad she is coming to us this year rather than staying at home or doing the same routine as she would have done with her DH. We will go to the village dog walk and Buck’s Fizz in the park in the morning (even though we no longer have a dog and I can’t walk far) as it’s nice to see our village friends and their canine companions. It will be nice for DSiL’s dog too.

A new year break on Tenby sounds great @FcukBreastCancer

We went to Snowdonia for new year last year which was amazing. We were supposed to go the Brecon Beacons (closer to us) but I booked the wrong place 🫢

Xmas plans : xmas eve at sons. Xmas day herewe’ve gradually gone from 5 to 10 people the more the merrier I say 😉 if I’ve suddenly had to have an op or something we’ll just keep it simple but I can’t see that happening as my appointment is the 17 th so…
That village dog walk sounds lovely @Ventress I’m so sorry to read about your BIL , that’s just no age at all.

Thank you @Nonamelasshopefully DSiL can have a decent Christmas this year. We will look after her.

Your Christmas sounds great. 10 is a good number - not too many to cater for (or fit around the table). Do you do traditional turkey and roasties etc?

I hope the appointment goes well on 17th. I agree that it seems unlikely willl arrange surgery (if needed) before Christmas.

We’re going off book and having venison this year as neither DH or DS like turkey. I’m doing potato dauphinois with it as I can mainly do preparations the day before. And never will a sprout cross the threshold- I loathe them!

@Ventress

Yum gratin dauphinois as we say here;) good idea easy to prepare in advance.Do you simmer your potatoes in milk ?
i kids have grown up in France but they really love a roast dinner !! So yes roasties and even sprouts I’d say about half us like them and other half go funny just looking at them .My problem is I haven’t got a huge oven ( or kitchen really)but DIL will do a couple of sides and son will do yorkshires Not made my mind up about the meat yet, will chat to the butcher tomorrow morning and order.
foie gras as a starter 😉 can’t not in France 🙃🙃.
Yes ten is still reasonable to cater for and can fit snugly round the table ,anymore and we’d have to start going makeshift!!

How will you do your venison?

@TopOfTheCliff Interesting thought (decreased dosage in order to work). I really don’t know but will ask my chemo nurse Monday as I get chemo #9 (this time round).
Good news is that Christmas is 11 days after so I should be feeling pretty good.
To all on this thread I hope you will all be feeling well too 🎄.

@Nonamelass- what meat did you go for in the end? Yes, definitely simmer the spuds in milk. DS is a bit weird in that he isn't a fan of roast potatoes so “gratin dauphinois” is a good substitute- not one I’d do often due to the seriously high calorie count! I’m glad your kids like roasts despite growing up in France 😊

I’ve ordered a rack of venison so will just medium roast it I think.

Hope everyone is okay this weekend x

Hello All, going to catch up on the thread now but EC KICKED MY ASS!!!

So here’s my timeline:
— Weds - EC + Pembro - felt ok for the rest of the day but started to wilt about 8pm.
— Thursday - couldn’t work and was lay on the couch but still was reasonably ok, mid-bad hangover.
— Friday - couldn’t parent my kids, had to get mum round at 8am because the fatigue was so bad. Didn’t think it could get any worse.
— Saturday - it got massively worse 😬. I couldn’t move, walk about hardly, sweating, I was asleep more than I was awake. Couldnt hardly eat, drinking was a challenge. Mum was forcing fluids in me.
Today - I can feel a huge improvement but I’m still like a spaghetti noodle with no energy. Also trumped and followed through. Had stomach gripes all day and apparently I trusted the wrong fart.

If future treatments follow this pattern then it looks like Saturday is my peak day.

Got appt through late Friday afternoon to see the Oncologist tomorrow at 2pm and I’ve felt too shit to even get anxious about it so there’s one small silver lining.

I was not a happy bunny, I told mum yesterday I can sympathise with these wankers who turn down chemo in favour of tumeric and other such nutribolloxs (whereas normally I enter into battle every time as soon as someone starts spouting shite about fenbendazole and its twat cousin Ivermectin). Today I’m back in favour of chemo but holy hell, that crushing feeling of fatigue was something I have never experienced before. And I’ve had Meningitis twice.

I didn’t have any nausea thankfully because I don’t think I’d have made it to the loo each time!!

I’m going to read all the updates now, I hope everyone has had a much better weekend than I have ❤️

@cannaecookrisotto
oh that ec is a right fecker. Are you having it every three weeks?

Poor you it sounds like it was awful 😫 I bet you weren’t a happy bunny!!
Thank God for Mums, mine used to come over from the UK to help with the kids etc for the first week . Roll on the time when they find something easier to treat cancer 🤞My poor Nana was apparently treated with chemo derived from mustard gas in the late 60s , it just doesn’t bear thinking about..

You made me giggle about the tumeric ivermectin bollocks ..you have to wonder why those oncologists, brainy researchers and other pesky experts have never that of thought of that don’t you? …
Glad you’re feeling a bit better, hope all goes well tomorrow , hugs x

Oh EC can be grim @cannaecookrisotto I hope you start to feel better soon.

In the end we’re having beef filet ( or as they say here ‘filet de boeuf ´😅) kids were here today ( having a roast😉) and I negotiated gratin dauphinois which I’ve pinched from you. We’re always having roasties ( I actually prefer mash tbh) dunno what veg yet but will do a salad with the naughty foie gras . We’ll still have yorkshires so keeping is a bit british and Î found a jar of horseradish in the supermarket the other day which I was excited about 😅
I actually don’t like meat much but don’t mind cooking it for my carnivorous family. I went to order at the butchers but the queue was huge so will pop back on Wednesday after my appointment 🤢 it will be quiet and I can chat to butcher about cooking it as I’m always nervous that I’m going to commit the heinous crime of OVERCOOKING the beef .

Hope everyone is having a gentle Sunday evening💕

@cannaecookrisotto urgh it is a total bastard. I had mine on a Weds and nicknamed the first Saturday sicky Saturday, although the drugs kept it down as they gave me strong ones on ec. Hopefully you’ll start to lift for the next few days. Second week of the cycle was not too bad for me, hence the fannying around in forrin, which I definitely could not have done in week one.