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

@Zorgothslugofdoom I think I mentioned yesterday that with me (also on EC, on a 3-week cycle to start with) that my hair began to shed on day 17 post the first one. I cold capped twice but I think the first session it had gone on dry hair and not close fitting enough so it didn’t work well for me. The loss continued after the second session and I got shaved as I found it too distressing. The shaved look was/is fine really but I won’t lie, am looking forward to looking like the old me again one day.

Those who shaved, did the remaining hair all come out? I shaved mine last week and some areas are now bald but a lot is still bristles. I was happy to shave it off as it was coming out all over, waking up with hairs in my face and on pillow. I'm just wondering whether I'm going to end up with a mohican with bald patches.

Hi everyone, I wasn't posting or a while as I wasn't in the right head space for it, but I was thinking of you all and have caught up on the thread, so much has been happening for you all and the newcomers to the thread that I can't name everyone.

I still have one of the burns that just won't heal fully so still seeing nurse for that, it's on the mend but not fully co operating with the dressings and lotions and potions.

I was sent for a whole body bone scan, never knew I was claustrophobic until then and have now received a letter to go back for ct chest abdomen and pelvis, so now I'm freaking out about that because even though I would tell anyone not to goggle I didn't listen to my own advice, why on earth did I do that.

Did anyone else have all these follow up procedures after surgery and radiation, still never got to the bottom of the colonoscopy appointment but I put it off and rescheduled for end of month.

Again apologies for disappearing for a while and as always good wishes to everyone.

@Skap
This sort of thing .
And sudoku on other pages . Strange mix .

I was googling Clarithromycin the anti biotic I am on for a persistent chest infection that is leaving me with a foul taste all day and came across an old thread from 2012 .
Photo of the relevant bit attached .
The humour is right up my street.

skap ( bold doesnt seem to have worked)
I lost my hair despite using the cold cap. I then had it shaved and the bristles stayed with me through 6 lots of chemo.
Saw counsellor this morning, cant say it helped much, if at all except I bawled my head off which I suppose is a sort of result.

correction , it has !

Just got home from the hospital - wasn't as bad as I thought it would be. Did the cold cap (very weird - horribly painful at first, but then your head goes numb!). Tired now, but glad to have got through the first one. Have been pumped full of steroids and anti sickness drugs, so hoping to be ok! Hope you all have a good weekend.

Hello all- sorry for disappearing- I had a long wait for results as the lab was backed up and the consultant wanted a second opinion- but finally saw him today and surgery is booked for end of November. As they have decided I’m stage 1a1 it will be a laparoscopic hysterectomy with Fallopian tubes out as a nod to the brca2 possibility and then he will take out the ovaries if I am a carrier at a later date- the test takes too long to wait for. So relieved to have a plan at last.
I sort of hid from the whole thing for a while and focused on work and kids.

I hope then chemo is going as well as possible for those of you in the middle of it and that you’re gradually starting to feel better Bridget now it’s over.

Thanks for the packing list! It’s incredibly useful and I need to remember to put some music and audiobooks on my phone.

Thanks to all of you for sharing your journeys, especially the daily ins and outs!

Slap glad you hear you had a lucky escape with the flooding although still sounds v stressful!

Evening all.
yoshmi I had a total hysterectomy with a bso 4 weeks ago. Hope all goes well for you.

zorg sounds like you did really well with your first chemo. Hope you are putting your feet up now.

meercat23 sorry to hear of the increased heart scans.
Did you get your highlights done?
wtf99 will be your turn for the highlights next!

elspeth18 sorry to see you here and hope you get a plan at your consultant appointment.
Hope the counselling will feel of some use.
As skap says the cinnamon Trust help put when dog owners need help due to illness etc. I have a dog too and he is my world.

skap that's pretty rubbish re the gynae referral. It's always good to know things are being kept and eye on but the amount of urgent referrals you've had must feel overwhelming.

Borntobeamum it is life changing so I guess periods of reflection occur at key points and times.

Trumpton you sound like an expert case packer!
I too, will look at the Swiss army card.

Bloodybridget how did you and your dp get on at the exercise class?
I think as myself and elspeth18 have dogs, we need a few do baskets at The Patience. I would also like some cookery mags and do like a boardgame. We like Splendor at home. Maybe some themed quizzes 'Gavin and Stacey' etc.

I'm OK, got a letter today which sent me into a tailspin. I thought it was my histology appointment being moved forward. I suspect its general gynae letter sent out in error but I can't get hold of anyone to find out.
I've still got pain around the haemorrhage site and keep reliving how awful it was. When my BP dropped to 40/30 I didn't think I was going to make it.
I guess it's all still early days and time will help.

Thinking of those of you with appoinments looming.

Catnidge that sounds really traumatic!

yoshimi it was. I was told it was a rare complucation. I just got unlucky.

Just had to phone the helpline as I feel so incredibly sick although I haven't been sick. Took a metoclopramide which has eased it a bit, but still feel sick. Helpline was reassuring, but did anyone else feel this sick after EC?

Zorgoth sorry to hear that, I never had any sickness symptoms but from what I understand, sickness is something they have a variety of tools to tackle so if you get it right now they can make sure you don’t suffer it each time. I hope it clears up soon. Well done for having one down.

Catnidge That must have been so scary to go through. It must take some processing. I hope your pain goes off shortly.

I had my results from surgery earlier. All really good. We already knew that MRI/ultrasound scans couldn’t see anything left and the pathology report showed zero cancerous tissue and zero pre-cancerous so it’s all gone. Lymph nodes clear. The only proviso is that the metal clip they put in my sentinel node didn’t get picked up so is still in me somewhere. I need to have another ultrasound to see if they can spot it. If it’s still there in a node (as opposed to other tissue) I think they’ll have to open it up again to get it out and be sure. Hoping that won’t be needed, obviously. But for now, my response seems to have been really good ✅

Sorry I haven’t name checked everyone by any means but hope you are all ok and have a good weekend x

Right, take two! Thanks, iPhone crash 😒

Catnidge That must have been scary. It will take time to process what happened to you. I hope the pain goes off soon.

Skap I would definitely imagine your docs are being ultra cautious about your scan given your cancer diagnosis. Unfortunately that doesn’t stop it being alarming for you but I have all digits crossed that they’re just double checking on you and aren’t really concerned.

As for bristles, yes I lost all my hair eventually. While the bristles lasted they were quite tender and caught on things like pillowcases and hats, but I think that is because the follicles were dead. If not all your follicles die then my guess is it’s not painful. In which case the quid pro quo is probably a funny patchy regrowth! Cancer is great like that, which shit thing would you like most? Complete baldness or patchy regrowth?! 🤣

@Zorgothslugofdoom I had the same the day after the first round, but am fine this time after the second. I suspect it may have been a reaction to the sedation etc for the port insertion rather than the EC. Hopefully the tablets will take effect quickly for you and it won’t last long.

They gave me sleeping tablets this time round as I haven’t been sleeping but as you can probably tell from the time of posting they don’t seem to be working 😬

Hello! I got up at 5 for breakfast this morning, Piggles hope you got back to sleep!
Brassica congratulations on great news! And I hope they don't need to remove the clip, that was careless, were they very apologetic?
Yoshimi that's good you're at such an early stage. Hopefully you won't be BRCA2+.
Elspeth have you got another appointment with the counsellor? I think sometimes a good cry is cathartic.
Ellen the other scans may not make you feel claustrophobic, as it's just a bit of you going in. Was the whole body one CT or MRI? Sorry to hear the radio burn is still painful.
Skap what a drama with flooding - glad it was averted without too much damage. Really sorry you have the cervix issue hanging over you now, fingers crossed you get a date for the gynae team soon. I love a good jigsaw too, let's have a dedicated table for them in the Patience.
Zorgoth poor you having horrible nausea, hope you can keep it under control today.
catnidge dog baskets for every shape and size of pooch and stacks of lavishly illustrated cookery mags are in place right now. I'm definitely up for a quiz - in fact I'm taking a team to my choir's pub quiz Monday week! I didn't get to the exercise class, I'd been out in the morning and had no energy left. But I did do the show last night and that was great! Hope you can find out what the deal is with the letter, hopefully nothing to worry about.
Wishing everyone a good weekend with no alarms or catastrophes!

Brassica. Wonderful news about the surgery results. Not so wonderful about the clip. How did they manage to do that! If it does have to come out I hope it is somewhere really easy to get at and doesnt leave you with any unnecessary soreness.

Catnidge that sounds like a really nasty experience and the unexpected and unexplained letter is also something you could do without. Have you managed to get any clarity or is that something that will have to wait until after the weekend?

Zorgoth I was lucky and only got nausea and sickness once when there was a delay and I had the cold cap on for an hour before they switched it on. They were always asking though and kept telling me that there was lots they could do to help with it so to say if I was nauseous so I am sure that your team will be able to help too.

I did get my lowlights done and finally feel more like myself. Back to muddy blonde streaks. The patchwork badger is no more!! Even better my hairdresser told me that she could see new growth everywhere and that it is now coming through in my original dark brown colour!! It hasn't been that colour for years but I had heard that the new growth can come through looking very different from the hair you lost. It is all very strange but to be honest I don't care how it comes through as long as it does come through.

Best wishes for a peaceful weekend to everyone, especially to those recovering from treatment or waiting for answers.

Just a quickie from me..

brassica fab news about your results! Hope the pesky clip doesn't cause too much of an issue for you.

meercat really pleased to hear about your hair. How far are you post last chemo now?

zorgo I had nausea in varying degrees for all 3 of my FEC cycles. With any luck it is the after effects of the sedation for you, though obvs that wasnt the case for me as I had my treatment via a cannula

I found that on cycle 1 it started a day or two after treatment and peaked on day 5 when I got on to the helpline. They gave me prochlorperazine bucchal and cyclizine to take in addition to the metoclopramide which I already had as back up in addition to the standard post chemo meds. It's possible to take all of them at the same time if you need to. Get back onto them if you're still suffering. Are you having Emend for days 1 to 3?
I found that eating carbs helped, a bit like when I had pregnancy nausea. And the good news was that by the middle of the second week I felt pretty much back to normal for the first 3 cycles.

It's an idea to keep a diary of your side effects, then you have something to refer to when you get reviewed prior to your next treatment, and when you're in the depths of cycle 2 you have something to remind you that it doesn't last for ever and that soon you'll be feeling better!
Hope you feel better soon.

Hi WTF - nausea settled down for now, but stomach still tender. I phoned the helpline, and they said to start the metocloramipe. Not sure what the emend is? I have to do injections to boost my bloods for 7 days. Just about to do the first one into the bit on my stomach that has been numb since my c-section!

Thanks Bloodybridget I'm not sure what it's called to be honest, I had a dye injected and then a few hours later had the scan, I had to lie down very still and get strapped in, and a machine came basically down to my nose and slowly moved over the rest of me, it took about half an hour.

I'm just freaking out now that it showed up something and that's why I've to go back, trying not to think about it but it's not easy.

Sorry for not naming you all, I hope you are all as well as you can be.

Thats good news zorgo! I wouldn't wait now to feel really yuck before taking the anti nausea meds....it's easier to prevent than to come back from IYKWIM.
Emend is anti nausea tablet to take on the morning of treatment before going to the unit and then on days 2 and 3. It's a good one. Maybe ask for it for next time if you're not on it.
The injections are fun aren't they?! Just remember that each one you do is another ticked off and never to be done again.
I had lower back pain with the injections a few days in....rang the helpline in a bit of a panic and they said thats what it was...a lot of bone marrow to be stimulated in your lower back and pelvis I guess! Paracetamol sorted it out within 20 mins of taking the tabs. I also felt a bit sore throaty with it too, but my temperature was always fine so no worries there. Have you got a thermometer? I went for a posh ear one but the readings varied widely so it was useless! A simple under the tongue one was much better.
Hope the rest of your day is ok

WTF my last chemo was June 20th so I am about four and a half months past. They did say probably best not to colour hair until six months . As my hairdresser uses Aveda products which are very gentle and she said she would avoid letting the product touch my scalp or hair roots I decided to go for it now. So far so good!! I'll let you kniw if that changes.

Will be interested to hear how you get on meercat
I won't be waiting months...that's just torture!

Oncology appointment tomorrow . But what is the worst he can say ? >
I went to a funeral on Friday and DD’s father in law’s burial is tomorrow . Both my age . Life is a bit scary at the moment .
Two weeks until I go to Manchester for mastectomy and reconstruction .
Sleep is impossible .
But I had a lovely afternoon with just DD at a local art collective . It was warm enough to sit in the sun and I saw so many friends there .

Creeps in.

Triple negative.

It all kicks off tomorrow.

6mm lump removed, no lymph nodes involved. TG

Because I have previous four years ago (Head and Neck) they would like me to have chemo and radio.

Belt and braces to cover the 3% chance of it recurring.

I have an 18 year old son and if God forbid it rears its ugly head again, I need to be able to look him in the eye and say I did everything I could.