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

bridg my jumper is on a go-slow! My knitting mentor has been on hols but is back now so I need to get the 2nd sleeve finished before I see her on Thursday then she's gonna help me do the tricky neck bit. I work best to a deadline

trumpton that's a turnaround for you! I bet your head is spinning.

zorgo sorry to hear you've been up and down. I'd put money on you feeling quite a lot better pretty soon, and then that's the worst of this cycle done with! The heartburn is horrible isn't it. Mine continued with the docetaxel too I'm afraid, though we're all different so not necessarily how it'll be for you. Have you got Omeprazole? I had some really good advice from one of the nurses, which was to take 2 tabs in the morning for the first week after chemo and then one thereafter, and just to take them, not wait until I was feeling horrible. Up until then I hadn't really been using it effectively but that approach helped no end. I also had gaviscon for back up. Just passing my experience on in case it's of any use to you.

I'm just having a little rest this morning before rads no.7 at lunchtime. No ill effects so far.. Then off to see a friend who is about to have preventative bilateral mastectomies as she carries the gene.
This evening my recovery plan continues with a 'restorative' yoga session (that's how it's advertised, so we'll see if I feel restored!) followed by my son coming over for food, which is always a pleasure. So not a bad day really.

Wishing you all a good one.

Great news on your various sproutings brassica
Keep stretching your armpit and it will get better. Passive stretches over the back of the sofa whilst watching tv are good.

Well I’m back in hospital with a severe infection in my wound.
It’s not fair, I just want to recover from the surgery and put it all behind me ☹️

Oh fudge you poor thing, after that huge surgery. I hope they are keeping you comfortable.

@Trumpton I have a picture in my head of you doing the Dashing white sergeant and the eightsome reel all dressed up for Christmas . I did some feverish decorating at the beginning while waiting for results. Couldn't paint a colouring book atm though!

@WTF99 you sound much more positive, glad to hear the rads going smoothly.
Great to hear both Brassica and Bridget on the up after all the misery of recent months.

@Zorgothslugofdoom I think you will find a pattern after a while, some days are a write off and others you will function better.

Well the bloody laxatives have worked a bit too well.

Oh @fudgesmummy that’s so horrible for you . I hope you improve soon .

@Skap that’s a very accurate mental picture you have of me ! I wanted to send a photo to you to show me in full fling at a recent festival but can’t do it through private message and although I don’t post anything private on here I’m not sure I would like this particular thread to be outing .
You poor dire rear !
Posted two huge Christmas parcels today to family that I generally travel to London to see so am feeling a bit flat that I am not seeing them this year .
Need a haircut next week before the coldcap. I need one anyway so just might have it cut a bit shorter .

Think I have a seroma in my armpit - feels as if there’s a golf ball in there and I can’t really put my arm by my side. Am seeing my surgeon tomorrow about this mislaid clip so will ask then what can be done - am taking ibuprofen, any other advice? I know a couple of you had these too (Skap, Trumpton, Ellena?)

Bold fail!

brassica if you're seeing your surgeon tomorrow he will probably just draw some of the fluid off there and then.....that's what mine did in simillar circs. It sounds worse than it actually is. In the meanwhile, resist the urge to mess about with it!

Brassica sorry can't help it was cording I had. It sounds very unpleasant, hope they sort it out for you tomorrow.

Hoping the dire rear clears up for tomorrow, don't fancy having to drag the drip trolley to the loo 57 times.

@Brassica
Yes I had seroma in my armpit but went to GP ( I got a same day appt) who just described antibiotics . Mine burst that night . Please make sure you get it looked at tomorrow . As WTF99 said drawing the fluid off is quick and easy . The lymph system will sort out a new route for itself soon .
I hate armpits !

Just taken the prescribed steroids with a bit of cheese, too early for a shake.

Had a shock when I looked at my hair this morning,for no reason other than it is short, you know that first look in the mirror through sleep the next morning shock.

First chemo today. :roll:

I have a huge bag of stuff packed for the hospital, I am sure I look like a bag lady, but I have a book, screens, charging cables, notebook to continue planning and delegating Christmas.

I also have a blanket and hot water bottle for brain freeze from the cold cap.

@NaomiFromMilkShake
I think I get first chemo next week I was booked in for mastectomy on 26th but oncologist advises chemo first . I am in a bit of a whirl as I was all organised for operation .
Booked a haircut for Thursday after seeing oncology nurse but I am feeling the same as you about packing so l would be grateful for any first time tips .
All the very best to you . I would be lost without the support I get here .

Wow, loads to catch up with, I have had to make notes

Brassica I hope you get some help for your armpit today. That sounds really unpleasant. Great news about the new hair though. Is it coming through in your usual colour/texture?

Trumpton. The sudden change of plan must have been disconvcerting to say the least. JUst when you have your head around what is going to happen they change it all around. I suppose with different teams involved some of that is inevitable bit you seem to have had to cope with more changes than mioght be expected. In the end all that matters is that they get the right plan but it is hard enough coming to terms with one plan let alone a shifting one.

Skap. Good to hear that the laxatives have worked but you could probably have done with a slightly more gentle transition. I think the digestive side effects are some of the most difficult to deal with. Sometimes the remedy is as hard to cope with as the side effect. I hope it is settling down now.

Fudge So sorry to hear that an infection has landed you back in hospital. I hope it responds very quickly so you can get back home again as soon as possible.

WTF. I found the Radiotherapy the easiest bit to deal with except for the tiredness. Not sure how much of that was the treatment itself and how much was the daily trip. I think both contributed but at least the sessions count down quite quickly.

Naomi. You sound well prepared for your first chemo. I remember the bag lady look but much better to have everything you think you might need. I hope it all goes well. The first one is a bit scary as you don't know what to expect but I hope yours turns out to be boringly underwhelming and over before you know it.

Best wishes to everyone else especially anyone waiting for results.

I am off to the chemo centre for extra blood tests today. The letter from the cardiologist arrived summarising what he said last week. He had asked for some specific blood tests to be done last week and again at my next Herceptin treatment. They didn't pick up that he wanted the tests repeated and had left them until next time. I spoke to them yesterday afternoon and they are going to do them today so there will be a comparison after next time. The letter made the changes sound a bit more serious than his explanation at the time so I am keeping my fingers crossed that he wont say that I cant have the Herceptin any more. Has anyone else had an issue with heart changes on Herceptin?

Hair still OK after my colouring last week. I was bit nervous that I had gone too soon but oit really does seem to have settled right down. Naomi cold capping was really worth it for me and I hope it works just as well for you.

@meercat23 I’d say I’m heading for patchwork badger territory. It’s hard to tell as the hair is fine and fluffy at the moment but there are only islands of dark brown and seemingly larger areas of white! I was dark brown with some greys before...

I just trawled through thread 71 as I thought someone asked about the impact of herceptin on the heart a couple of months ago, and got a reply, but I can’t find it there. Maybe it was longer ago.

Sorry you are back in hospital @fudgesmummy, it must feel like three steps back or you. Hope you can rest and get on top of the infection quickly so you can get the hell out again

@NaomiFromMilkShake if you have a chance, put some paracetamol in your bag. If not, ask the nurses for some before they start the cold cap process. In my limited experience it helped to take them 20 mins before they turn it on. Good luck!

Hello all. Fudges so sorry you are in hospital; hope the infection responds to treatment quickly. Also that you have nice nurses and tolerable fellow patients!
Naomi good luck for first chemo today, you know the drill anyway and you sound well prepared. I was always chilly after a while, and then hot. The antihistamines made me so drowsy, I didn't need too much entertainment!
Skap bloody bowel issues, if it's not one thing it's the other! Hope it's calmed down today.
meercat I hope blood tests come out fine, obviously I don't know anything about herceptin but anything that could affect the heart has to be taken very seriously.
Brassica great that you have been able to enjoy outings and that your hair is reappearing. Mine is getting longer (about an inch now) but is very fine and sparse. I was thinking this morning, it's five months since I used a hairbrush! The seroma sounds horrible, hope you can see your GP today and they can do something to relieve it.
WTF so glad you are not getting side effects from rads atm, long may that continue.
I am taking care of other body/heath stuff now I'm through chemo, had flu jab on Monday, have appointments for dental check up and eye test. My eyesight seems quite poor, I wonder if drugs have affected it?

Bridget my eyes were very blurry and weak for a while after chemo. They are back to how they were before chemo.

@meercat23. I'm on Herceptin. I remember the oncologist saying that if they found it affected the heart the effects were reversible, and they could pause treatment and resume when the heart recovered.

Bridget I seem to think I've read something about eyesight. Do you wear glasses already?

@NaomiFromMilkShake all the best today. I'm currently hooked up. My "luggage" has reduced, I certainly brought the kitchen sink first time round.

One thing I always bring is a packed lunch. They do bring sandwiches round but they are awful and I feel I want nice food (and plenty of it) while I'm going through this.
I'm one of those lucky people who doesn't normally put weight on. I'm the same weight at 61 as I was at 21. I have however put a couple of pounds on since starting chemo. Don't know if it's the steroids or the inactivity.

Skap that is reassuring. A gap wouldn't be a problem but I would be worried not to complete the planned course.

Ok so a report from the front....

That was a long day, but it is over and I only have three more to go.

On arrival they ask you to soak your hair with warm water so that the cold cap can penetrate through to the follicles, then they touch up the bits that you miss, next time I will go with a damp head and take it from there.

I will not lie the first thirty minutes of the cold cap are excruciating and I may have filled up and squeezed my husbands hand hard.Will deny to anyone else who asks.

Get your hair cut up to the jawline as I would have hated to be trying to get my shoulder length hair into what is ostensibly a very tight swimming cap.

I brought a blanket and a hot water bottle, I wore cashmere socks, with another pair over them, knee length sturdy boots and three layers on top.

Bring your phone and set up some text ping pong with a good few people, I also brought a screen.

They have a television on low, with subtitles, God daytime television is rubbish.

The chemo infusion itself is silent and uneventful, but I know it will make itself known pretty soon, I am expecting Friday or Saturday to be carnage.

They have biscuits and squash available at all times and come around with sandwiches, bananas and yogurts and the offer of hot drinks at lunchtime.

Naomi well done for getting through that. I didn't realise you had to tuck all your hair in, I have seen ladies with long hair just hanging down out of the cap. I decided not to cold cap at all so don't know whether I would have tolerated it but I'm always too hot so might have been ok. Your day centre sounds nice apart from the compulsory tv. Very quiet and no squash or biscuits at mine, nor any capacity for companions, though I wouldn't want anyone sitting with me anyway.

@meercat23 Yes I know what you mean about getting the maximum because for HER2+ the herceptin is perhaps more important than the chemo. I did read a study somewhere (down an internet rabbit hole) about the optimum number of herceptin doses. Because its relatively new they settled on a protocol of one year but the study found that 9 doses achieved as good results. Will see if I can find it.

Skap

I think long hair would probably be fine but it is damp and seeping on to a towel, but all the considered wisdom seems to be a chin length bob,I am not mad about it, but if it falls out, it isn't my lovely shoulder length bob. IYKWIM.

Thank you for your report from the front .
It has given me some questions to ask tomorrow .
Ooh lunch . I will take crackers ( don’t like bread ) and some cheese .
Weirdly since all this started , and there can be no connection) I have lost my sweet tooth !
Grandchildren are due here to play monopoly !

Just a quick check in - Monday and Tuesday were pretty awful - unbearable stomach pains, which I wasn't expecting. Had to sleep holding a hot water bottle. Seems to be passing a bit now, but the last 48 hours have been pretty grim!

Zorgoth so sorry you have had horrible days, I had some quite bad pains in my chest and back from the Zarzio injections, I guess that's what's causing yours, but are your bowels working ok, it couldn't be constipation? Hope you feel better today.
meercat how long till you get results from bloods? I wondered if the deterioration in my eyesight could be temporary, hopefully the optician will know something about it.
Yes skap I do wear glasses, have done since I was 12, and although I've only had current specs under two years, they certainly don't give me great vision so some of it must be age related.
Naomi so you're only having 4 chemo treatments? Sounds like quite enough to get through with the cold cap!
Brassica how's your armpit, did you see your GP?
Trumpton who won at Monopoly? I remember games when I was a child that seemed to go on for hours, no-one actually won, we just passed out from exhaustion abandoned them.
Thinking of fudgesmummy, hope you are comfortable and can get home soon.
Waving at all regulars and occasional visitors to the Patience, wishing you all whatever you need most today! I'm looking forward to visiting a friend I haven't seen for years, and my brother who's finally back from a long orchestral tour.

Not having a good week, despite cold capping through the first two EC rounds my hair has been coming out in handfuls since Monday and what’s left is very thin. I can’t decide whether or not to just hack the remnants off now or wait and see if the rate of loss slows. Definitely not feeling very motivated to continue with the cap.

Can anyone recommend anything to help calm a very itchy scalp?