Cancer support thread #72 - come in, we're here for you

[Bloodybridget]

Welcome to the new support thread for anyone who has cancer, at whatever stage of treatment, is worried about symptoms, or is waiting for tests or results.

This is the place to worry, moan, ask questions, share experiences and good and bad news, and celebrate milestones!

If you've got a loved one with cancer then your best place for support is probably on the Life-Limiting Illness board.

Our previous thread is here

Current members, please do introduce yourselves

Hi all. How's this morning? I need to decide which chemo option to go with and I wondered what your thought were, anyone who has experience? I had a lung tumor removed in Nov 17 and have been on afatinib pills but its not working anymore. One of the options is really toxic and I'll loose my hair but is it worth it? Just for a few extra months? I want to be able to enjoy the remaining time I have.
I'm 42 BTW with three children so.....

I meant to add thanks for new thread! I have lurked and nc since I started using the board but I had to have a break from it after Leslie went. to you all

Emporor. I have no answers to the tough choice you are facing but I did just want to say welcome back.

Brassica. ave you got anything planned for after your final chemo? The effects are definitely cumulative and the bounce back takes longer as treatment goes on. I only had 9 weekly sessions but by the time I got to the end there was no let up in side effects between sessions and I was in a permanent fog.

Great to see several more introductions.
Snows your final week of radio, hurrah! Hope all goes well. What are you going to do with all the free time?
redspook so glad you are feeling better, even going into work, wow!
Doublethecuddles good to see you again, hope your results in October will be very positive.
iVampire I think it's great to see someone running half marathons! Did everyone see the news story about the American swimmer who did the Channel 4 times without stopping, over 50 hours, a year after finishing treatment for breast ca!!!
WTF - just huge sympathy to you. I do so hope you are past the worst for this time.
Brassica crossing everything you get your final chemo zap on Friday, wouldn't that be great?
EmperorBallpitine that is a hard decision to make, I really don't know what I'd do in your position. I have lost my hair and wasn't really bothered about it, but the possibility of feeling very much worse, I suppose I would weigh it up against the likely "extra time". I mean I'd probably rather feel fairly OK for three months than awful for six months, and I think that would be easier for my DP and other friends and family. But I am old and don't have DCs. Can you, would you talk it over with a Macmillan person or counsellor?

Afternoon everyone

It’s so nice to see lots of people on here, although I wish of course it wasn’t necessary for us to be on here!

Emperor, I’m very sorry to hear that you have this decision to face about prolonging time. I guess if the amount of time expected to be added is significant and might get you past a milestone or goal with your family, it might well be worth the haul through chemo. But chemo is tough on the body and I think going into it feeling ‘well’ would be advisable if it’s not to make you wretched. The alternative is to expect less time but be able to dedicate yourself to the quality of it, without fitting around lots of medical appointments and going through the chemo mill. I am sure Macmillan have more useful insight than I do.

Whythoughh, welcome but you must be reeling from that news. It’s so much to process in one go, not only the cancer but needing to embark on fertility treatment immediately. I guess they’re going to give you some stimulating drugs to harvest your eggs, is that right? I hope that part goes well and you quickly have all the pieces of the treatment plan in place. Well done for insisting on your investigations and I’m sure that will have massively improved your outcome here.

Good luck for today to Snows starting the last week of rads, Redspook dipping a toe back in at work, Trumpton getting that armpit drained again and Skap meeting the oncologist if I’m right in remembering.

Welcome back Born, did you have a lovely holiday?

Ellen how’s your pesky armpit? Do you know when your rads will be starting?

Always nice to see you iVampire, you sound well and full of energy! Good luck for your next results.

WTF, did you have a restful night? That feeling you described is really the pits and it’s very hard to feel upbeat when everything is so grotty. Thank goodness your chap did cancel his weekend away. Hoping you have a much more pleasant day today.

Meercat and Bridget, thanks for the good luck vibes for Friday. I daren't think at the moment about celebrating just in case it doesn’t happen. I’m not normally superstitious! Today I feel the signs of low haemoglobin in that I’m breathless and low on energy, and last night had a mahoosive nose bleed that suggests platelets might be low too! So it’s another day of rest. I was supposed to be meeting up with friends/work people tonight but will have to bow out. It was booked weeks ago when I assumed I’d be finished by now.

If I do finish chemo this weekend, the biggest treat I could imagine would be a bottle of champagne. Problem of course is that it probably wouldn’t taste that good until a week later. I shall have to get more inventive.

Good wishes to snows and brassica for finishing phases of treatment this week. Now that I have finished the treatment planned so far I m trying to compartmentalise it in my head in order not to think about it too much. Part of my brain still feels like it happened to someone else.
Really hope you're feeling better today WTF, it sounds hellish. I found the like of appetite and vile mouth one of the hardest things to bear at its worst.
So sorry to read of your situation Emperor, and I hope that you get some wise face to face advice to help you to decide the way forward.
I have been in to work as I planned to this morning, and came home at lunchtime. It was fine, and my employers have been very understanding. I have only had six weeks off, but it feels like a lot longer. I'm hoping to work every morning this week then see how it goes. Luckily I have a sitting on my arse job.

Hi, Im 53 and was last week diagnosed with stage 1a (fingers crossed) endometrial cancer. I am booked in for a total hysterectomy with open surgery next week for which I am naturally apprehensive about as I am normally fit and well. I have been advised that I may need radiotherapy but this will depend on the results after my operation. I believe that I have been fortunate for this to have been caught early and can only hope that I return to full fitness in the near future without too many complications that a hysterectomy may bring. I have two teenage children and a great SAHDH, plus a very supportive circle of family and friends, so hoping very much that all this is copable with. Although I have been told to expect to feel very tired etc I am trying to remain positive.

izzyb6488 Hello and welcome. That must be a huge shock for you, and major surgery so very quickly. It's good that is been caught early but you are still entitled to feel shell shocked.

Another bloody sleepless night. Oncologist tomorrow, I think my chest infection is back. The family are probably sick of hearing me moaning and I'm fed up.

Awake here too for a loo stop 😐

skap will be thinking of you in your appointment later. You're entitled to moan my darling.

Start of day 9 for me. Slightly better day yesterday than the day 7 low point, so hoping for continued improvement today. Still can't eat, feeling achy and tired and my nose keeps running....it's really sore now. Not much longer though....

Hope everyone else is dreaming sweet dreams..

Skap
Hope your appointment went well .
izzy what a shock for you . I have found that anxiety has made me very tired .
WTF99 aren’t the nights long !
Plumber was supposed to come at noon today . He turned up at 10.30 just as I got out of shower . We tend not to lock doors here so I just shouted down to give me 5 mins . Although the amount of inspectionmy body has had recently from arse to tit has made me less shy ! But not that brazen!

So we have a plan. Oncologist was lovely and seemed on the ball. In spite of my tumour being tiny he says it was aggressive and he says I am very, very lucky to have found the lump so early ( a benefit of being flat chested I reckon). There were signs of vascular invasion and since I am HER2 positive I must have chemotherapy and herceptin. It will be 12 weekly doses of paclitaxel.
He says there is evidence that giving Paclitaxel weekly instead of three weekly is beneficial in HER2+ cases.
Some scans and meeting with oncology nurse first.
I was worried about my heart and lung conditions affecting treatment but it sounds as though it will all be closely monitored.

Trumpton cross posted. Is it tomorrow your results?

WTF99 Oh the irony of sleepless nights and tired days.

redspook glad that first day at work went well. Do pace yourself though, it's easy to think you are better when you're resting at home.

Results tomorrow .
Oh Skap good to have a plan but quite daunting .

I took myself out for a toddle in the sun today . The sea was lovely .

Shopping with MIL tomorrow then DH and I will go back to town ( 15 miles ) for late afternoon results .
Friday is 1 hour of physio then consultant again . I just wish my brain would stop trying to second guess things ! The week extra wait has been hard !

Hi all and thank you skap and trumpton for the welcome. Just back home from my pre-op admission process and confirmation for surgery early next week, it now seems real which hasn’t up to now 🥴

Good luck Trumpton tomorrow on your results, will be thinking of you.

Good that you have a plan skap and it seems that you are in good hands, thank goodness that you’ve been vigilant and it has been diagnosed early.

Thank you for this thread, not one we all would wish for I know, but lovely to know that I am not alone

It's a while since I joined in, but I have been following your exploding rears, sleepless nights and oozings from afar with huge sympathy.

I know it's a common mantra on here, but for very good reason, that waiting is the hardest thing, so sending strength and good wishes to all in that difficult position.

Quick(ish) summary - diagnosed summer 2018, synchronous endometrial and ovarian which was initially staged as 3c for both but endometrial changed to 2c (woohoo!). Hysterectomy, debulking, chemo, radiotherapy, brachytherapy (just the quick one, not the awful kind that redspook had). I'm in my 40s, Lynch Syndrome suspected but have been waiting a long time for a diagnosis, it's always being chased up. Back at work a few months, first post treatment review in July, no sign of anything really nasty, but couldn't give me the all clear as there's something on my lung that they're fairly sure is "just" a post chemo issue and nothing to worry about (but I don't know what it's called as it was over the phone and I didn't have a pen to hand, instantly forgot it and haven't had the letter yet!). MRI again at Oct review.

@Bloodybridget I went to a wedding at Forty Hall. It was a beautiful day and involved some scandalous behaviour by a (very) minor celeb. Marvellous!

Trumpton I just wish my brain would stop trying to second guess things oh yes, that's why I was awake in the small hours last night. So often things turn out different than you think and you end up with a whole new set of questions. Is the physio for the cording? I've had 3 physio appointments so far. She does intensive massage and gives me exercises. Plus I'm supposed to get DH to do the massage every 3 hours . Good luck tomorrow.
izzy A full hysterectomy is a big op isn't it. How long do you expect to be in hospital?

Evening all,

skap really pleased that you've got your plan and some reassuring comments from your oncologist....yay for flat chested! Hope you get started soon.....sooner you start, sooner you finish!
Good luck for tomorrow trumpton .....keeping everything crossed that the news is as good as it can be and that you get a plan.
Hellooo to newbies and oldies.....I am unashamedly using chemo brain for lack of name checking but hope that you find the thread helpful.

I've had a very quiet day doing nothing much. I feel like I might have a cold but my temperature has been ok so I'm not fretting unduly. I've benefited from the rest today I think, and have been in touch with enough people to stop me going crazy....and had a visit earlier from tunnocks teacakes man....remember him? Only today he was mashed potato man .....still can't stand eating it though.....the mouth thing is kinda getting me down now..... Someone upthread said this was one of the things they found mist difficult and I can completely get why...
Gonna go for a walk tomorrow I think. Need the fresh air and change of scene.
Have a nice evening all

I am on my phone tonight so scrolling back is hard so forgive me for not name checking everyone. Just wanted to say to Skap that your chemo plan is almost the same as mine. I only had nine Paclitaxels in the end but Herceptin too. Just to let you know it is very do-able. There are side effects. It is not a walk in the park but it is definitely not the worst form of chemo.

izzyb I'm in the same position as you and will be having my op in a few weeks. I'm still recovering from a previous op. I have my pre op on Monday. Like you I feel very tired and thinks its just the shock. Like many other people here I'm tired all day and awake in the small hours

wtf enjoy your walk tomorrow, I hope the weather is better where you are, it seems to be non stop rain here. I hope your mouth improves, eating is meant to be pleasurable and not having that enjoyment is pretty crappy.

ignatuous lynch is going to be looked into for me, but going by your experience I guess there will be no speedy answer!
It always surprises me when you are given loads of info over the phone as the chances of having a pen or rembering most of what is said are not great. Hope you get positive news on the lung soon.

trumpton, waiting is so hard and frustrating. It's easy to start second guessing and running through multiple scenarios. Hope you and mil have a fruitful shopping trip.

skap, I'm also flat chested, who knew small boobs could be so useful. Sounds like a lot take in, reassuring to know that an eye wil be kept on your heart and lung issues as well.

Sorry for anyone I've missed. I'm another one who is scrolling back on the phone.

Sleep well everyone.

Hello all!
First must say hello and welcome to izzyb, things are moving fast for you with surgery which is good! I had a full hysterectomy in May and was in hospital 9 nights, but that was longer than normal I think, because I had a lot of sickness so didn't eat for most of the time and was on oral meds and hydration. The wound healed really well and I was able to sit up and get out of bed fairly easily quite quickly. Great to hear you have loads of support!
Brassica, how's the breathlessness now? Do hope you will be OK for Friday, are they doing bloods on Thursday?
Skap that doesn't sound like the best news you could have had, but I'm glad the consultant was nice, and it's good to have the treatment plan. Is your chest still feeling dodgy?
WTF hope tomorrow you will be a bit better still, and that there will be something you can vaguely enjoy eating soon. My taste buds are back to normal for savoury foods now - except I needs loads of salt and pepper - and that's a great relief. Hope the loo issues settledown for you too.
Trumpton a walk in the sun by the sea sounds delightful! Good luck for results tomorrow!
Ignatius really hope the lung thing is "nothing" when you have the MRI and review in October. Am intrigued by Forty Hall shenanigans!

I have had a really good day today. Went shopping a few miles north of where I live, where there's a quite nice pedestrian shopping area with an old-fashioned feeling department store that has very good coffee! I had a coffee there and then splashed out on presents for the DGCs, I feel sad I haven't seen the little ones since March but they will like to get a parcel. Also something for my 4 month old great-nephew whom I will see on Sunday, and a pair of boots for myself! And this evening I went to my choir rehearsal for the first time since April, that was great, and had a random convo with a complete stranger, young man, who got off my bus and was walking down my street on his way home. Very sweet and friendly.

Wishing everyone a good night and happy dreams.

Lymph nodes clear which is nice , and so no radio therapy needed as ....
How-everrr ....
Having gone bigger and better on last excision there are still no clear margins so they are going straight to mastectomy .

Decision to be made is just mastectomy ( done on island ) or mastectomy with reconstruction with DIEP ( done in Liverpool and a weeks stay in hospital ) and a longer recovery time .

My initial gut feeling is just mastectomy but need time to think about it as quite heavy busted and breast nurse says that with my life style ( she knows me) I might find prosthetic heavy and unwieldy . A reconstruction might have a waiting list of two years if not done at same time .

Will see consultant again on Friday , meanwhile DH and I are drinking the fizz I got in to celebrate , because we still have things to celebrate . Right !?
All 3 offspring told . Yuk .

Diagnosed with anal tumour July 2017, fast-tracked through to treatment of chemo (1 infusion, remainder by tablet). 28 pelvic radiotherapy sessions. Lost every bit of hair from neck down and only tiny bit from hairline which was good as they said I'd lose it all! Armpit and leg hair remains minimal which is fab! Pelvic area burned to buggery with radiotherapy and spent a few months wearing puppy pads as became fecally incontinent. Entered early menopause (well probably would have anyway as all females in family do), that was a breeze as well used to steroid sweats with Crohn's flare. All good now and have not to go back to oncology for 6 months. Would I do it all again? Can honestly say I don't know. What I do know is I'm still here and as a previously permanently stressed person,I don't stress about anything now. Sending virtual hugs to anyone who needs them x

Ah trumpton I know that probably isn't what you were hoping to hear, but in terms of your longer term outcome this is very good news! It means they are confident that they can get rid of whatever it is with just surgery and are very confident that there is no spread nor any potential for it. Well there's no absolute guarantees in life, but you know what I mean.
I remember being gutted though when I was given similar news and it took a good while to get my head around it. I went for implant immediate reconstruction which I've been very happy with, but I do have quite small boobs. Recon or not is a very individual decision. Take your time to think about it.
Enjoy your champagne sweetie. In the shitstorm which is breast cancer you do indeed have something to celebrate.

Good for you tarscout! An inspirational story!

TARSCOUT
That’s fab to read .
Very blitzed tonight and prob had a an elegant sufficiency of fizz .