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

I wonder if antihistamines would help.

Bad luck, piggles. I had similar and decided I’d rather shave it off than shed hair all over the place and keep seeing it thinning. I remember it being itchy and tingly, I put a bit of bland moisturiser on my shaved head but not sure what you can use while the hair is still present. Something unperfumed I would suggest..

Hope you enjoy your catch ups Bridget, I’m sure they will be big boosts for you.

I did see my surgeon yesterday and had an ultrasound to look for this clip that went missing in surgery. The radiographer confirmed I had a seroma and drew off the fluid - 15mls which she said was quite a lot . It was bloody painful having the ultrasound and the local anaesthetic in my armpit, brought tears to my eyes. It does feel better now the seroma has gone but they said expect to need it draining again once or twice more. Meanwhile the clip can’t be seen and is unexplained. They’re happy however that it’s not in a lymph node therefore no worries that the nodes removed were different from the ones required, and no further action needed. It doesn’t really suit my mind to have unexplained phenomena and open questions but I will get over it.

Also I am finally over my vertigo after seeing the physio last week and that’s really good. I’m off to a quiz with colleagues tonight. Have a good day/evening everyone.

I went into work today, I normally finish at 2.00, I worked until 3.00 but decided to call it quits when I found myself signing an email to a client with Much love :heart:

Have arranged for district nurse to come and do first few injections and then I will see if I can do it myself. Less restricting.

piggles your hair situation sounds very similar to mine at the same stage of treatment. I remember it as a low point emotionally.
After a lot of deliberation I made the decision not to shave or go drastically short. I found a head covering that I was happy with so I didn't have the distressing experience of hair constantly shedding onto my shoulders and decided to see how it went.
In my case the shedding stabilised at that point. I continued with the cold cap. I did have considerable thinning, especially on the crown, and was glad that I had left some length in the remaining hair as it meant I could brush it over the thinner bit when using the cold cap and thus protect my scalp. I did have a debate with the chemo nurses as to whether to continue with the cc at that point, and we decided it was worth persevering.
Now that I've finished chemo I am finding that my hair is returning pretty quickly to the thin bits and generally thickening up quite well. I think using the cc has contributed to that.
It's a very individual decision though. For me having some hair was better than being shaven bald. I know the chemo.nurses would not have let me continue if my scalp had been too vulnerable.
I hope you find a resolution that youre happy with. It's a tough part of what we have to deal with.

zorgo hope you're feeling better today.

brassica I'm pleased that your swollen armpit got sorted. Fingers crossed the oozing slows down now.

naomi you are hard-core going in to work so soon after chemo! I don't think I could have done that. Good luck with the jabs. Being able to do them yourself is useful if you can manage it.

I'm off to the pub tonight! Ive had a busy and enjoyable week which is in marked contrast to a few weeks ago when I was in the thick of chemo and feeling like crap. There is light at the end of the chemo tunnel, though that's hard to remember at times .
Only 6 more rads to go and counting....

Wow, so much going on with everyone.
Hello to Naomi sorry you are going though this for the second time. Good luck with the cold capping and I'm impressed that you managed to stay an hour later at work

Trumpton that was a big change of schedule. Hope that you mange to enjoy a few ceilidhs over the Xmas period.

skap hope the constipation which is now dire rear eases. The main thing we all seem to have in common is temperamental bowels.

piggles hope you are sleeping better and that the cold cap situation improves.

fudge are you still in hospital? Best wishes to you

Bridget are you from a musical family? My youngest two are good musicians yet I am truly tone deaf!

zorg are you feeling any better?

Brassica and the mystery of the lost clip! How bizarre is that!
Congratulations on the rebirth of hair, results and the improvement in your vertigo.

meercat I hope you find out more info regrading your heart and the herceptin. Also good to hear you are no longer a badger.

wtf99 enjoy the night out at the pub. You've been busy with the mindfulness and yoga!

Best wishes to anyone I've missed

I've been busy catching up with friends. My letter which sent me into a tizzy was a referral from GP which should have been cancelled.
I'm feeling good if a little constipated

Ha ! @Brassica armpits are the pits !
I lost 50 ml into a bag over 24 hours , it was foul .
Consultant was impressed that I had measured it !

Anyhoo. First foray into chemo dept today . Lots of chat , bit of woo. PICC line goes in Wednesday. First paclitaxel in on Friday . Herceptin has to wait until I have echocardiogram . Helpfully booked at same time as PICC line insertion . So to be rearranged .
DD2 has booked to come home from London same day which made me a bit teary.
DH and I had large fry up with soft fried eggs tonight .
I can’t believe no blue cheese or Brie over Christmas . But ok for gin ( in moderation ) hmmm !

Hello all. Anyone else awake yet?
Brassica how did the quiz go last night? Was your armpit comfortable enough not to be a distraction? Great that vertigo has finally gone.
Gosh WTF you are a good way through the rads now! Isn't it great leaving chemo miseries behind (yours were much worse than mine).
Piggles what a bummer about your hair, that's so unfair when you put up with the cold cap. Hope you do manage to keep most of it. I haven't had an itchy scalp, I do rub moisturiser over my head when I do my face. But I guess you would have noticed if it was dry/flaky so that probably wouldn't make any difference for you.
Naomi I hope your colleagues were impressed with you going to work! I'm still blaming chemo brain for ridiculous lapses of memory; yesterday I arrived at a friend's house to be told by her DP that she'd gone to meet me near where I live - that's when I remembered we'd agreed to have brunch in a café up the road from me. Luckily it was ten minutes in a cab.
catnidge phew re alarming letter. I wonder if staff realise how scary it is for us when things like that happen? Just before I was diagnosed, but I was pretty sure I did have cancer, we were on our way to the airport for a week's holiday when I got a call from the consultant's clinic saying she wanted to see me the next day (I already had an appointment for after our return). Then the train went into a tunnel, we arrived at the airport and spent twenty minutes trying to get through to them again. Eventually told no don't worry, off you go and enjoy your holiday; er, sure, great start to it! Hope you get over constipation soon. I still have to take senna tablets occasionally - and I have a few prunes most mornings.
Re musical family, yes I guess, my father earned his living playing double bass for quite a while, but gave up when I was very young, he was thrilled that my brother became a professional musician. My mother played piano quite well, I've only ever sung but I do love it. Actually I've just enrolled in a piano course for next term, one level up from "never seen a keyboard before, why are some of the notes black?". But I am too lazy to practice, I know.
Trumpton I did eat a tiny bit of unpasteurised cheese early on during chemo, I know it's not recommended . . you might find you lose the taste for it anyway. What savoury treats do you like that will be OK? How about cracked black pepper cashews?
Did anyone else see there are Woolly Hugs being started for TQ's three DDs? Thread in Chat.

I'm up. Well, I'm laying in bed pinned down by a cat.

I'm impressed by the fluid draining measuring. I imagine the seroma is awful but satisfying to see how much is removed.

bridget good luck with the keyboard lessons.
My youngest is considering some type of music degree. He is going to take a gap year along with his band mates next year.

Good day to everyone. Best wishes to all those with treatment or appointments today.

I am in bed just finished the “Hidden Books” quiz over on Chat . Good fun .
Took a sleeping pill at 4 am as couldn’t sleep . Off out to lunch today with a newish special friend who parents I will be going to stay with after the mx in the spring .
A rare case of meeting someone and recognising them as a friend straight away ages not withstanding . >

Hello all and best wishes to all

A week ago I had ultrasound for pelvic pain and blood tests and I'm literally too scared to get the results. I don't know the results of either test. Should I ring the Macmillan support number for a chat? I am going mad here; I am a nervous wreck.

I think I have an ovarian cyst because I have pain on the left side exactly where my left ovary is. I've told noone about this. The past few weeks have been difficult to say the least. I have OF COURSE done lots of Dr Googling.

When I had the ultrasound there was lots of beeping. I assume the machine beeps every time the sonographer takes a picture. This was sub-contracted and the organisation sends the results to your GP practice that is, they don't tell you anything at the time.

Any words of wisdom gratefully received. I think writing this is my first step to facing this.

I hope everyone is having as good a day as possible x

Thanks everyone for the hair loss support. By the end of yesterday afternoon I’d lost so much that I gave in and popped round to my hairdresser to have him shave off the remnants. He’s making me a wig to match my pre-chemo hair and has lent me a temporary one to wear in the meantime. It’s a good colour match but it’s the one he uses for sixties style photo shoots so not quite my usual look!

For anyone else with itchy scalp, his tip was rose oil - which does seem to have calmed it down a lot. Phew!

@sybilshade I am so sorry, waiting for results is the worst. Did they say how long the results would take to come through? Could your GP practice chase them up for you before the weekend if you let them know you’re worrying? Even though my own results weren’t good (I have breast cancer), once I knew them and could make a plan it was a huge weight off my mind compared to the google-influenced waiting horrors. I did have an ultrasound last year for a suspected ovarian cyst and it turned out to be inflammation of my bowel left over from a bout of food poisoning a few weeks prior. So there are all sorts of non-sinister things it could be, not just the horrible things google suggests!

the results should be at my GP's now but I am too scared to ring. Somehow I will have to get my big girl's pants on (as they say on other threads). Thanks for responding

sybil

You need to ring, they are sitting there on a screen and dodging them won't change them. Harsh but fair.

Yes, I need to ring.

Ok can anyone please tell me why cheese is featuring so much in recent discussions, cheese and crackers have been my go to when I was too tired to eat, bearing in mind the head and neck cancer has seriously reduced my ability to eat anyway, can't get anything down without water, I may just cry if someone says it is forbidden.

Waits for someone to say it is forbidden.

Hello everyone - just checking in. Managed to get dressed and go to the supermarket today - major achievement! Got home and had to have a nap.

Wanted some proper food, as my mouth has been really sore and I've been having yoghurt, rice pudding, etc. Tried some of DH's firecracker chicken sandwich (I love spicy food!) - and am now sat sucking an ice cube as my poor mouth is on fire. I have literal tears of pain rolling down my face! Stomach is now wanting to get in on the action, and is now hurting aswell. What fresh hell is this ??!? Don't tell me I won't be able to eat any spicy food for the duration of the chemo???! Am hoping my mouth sores will heal and I might get to eat spicy food between chemo rounds - please tell me this is likely...

Glad you've found a solution piggles. A personally made wig sounds amazing!

naomi I was never given any restrictions on what i could or couldn't eat on chemo but a quick Google does suggest there might be an issue there. Maybe check with your team? It might be a question of balance of risk.

Sybil I'd be getting a GP appointment in your shoes. Whatever the outcome, you won't feel much worse than you do right now, and will probably feel much better.

Oh Zorgoth your poor mouth! I really enjoyed spicy food from about a week after chemo, but my mouth didn't get particularly sore. Hope yours clears up soon. Well done for getting out!
Naomi it's just unpasteurized and blue cheeses they advise against eating during chemo.
Sybil , hello and welcome, you're already feeling scared about possible results of the scan, so really I think you might as well ring and find out what you're actually dealing with. Who would you talk to, when you do? Is there a relative or friend who would be calm and supportive? You will find plenty of advice, listening ears and handholds here.
Piggles how do you feel now you're shaved? Do you like the shape of your head?

Oh zorgo poor you ☹
I had these kinds of issues though I did find that on FEC i was feeling pretty ok for the 2nd half of the cycle and I was able to go out for a curry I remember! Fingers crossed tvatll bd tbe case for you. My mouth and innards became more sensitive on docetaxel.
It's not for ever though....and you're one cycle down now!

Naomi
It’s not all cheeses , just my favourites !

Thank you BloodyBridget

Thankfully the one I am eating is pastuerised, howvery DH was just about to put stilton into a homemade leek and potato soup, so that was a good swerve.

What I do without you all.

Trumpton

Before the H&N cancer that list would have reduced me to tears of frustration, but most of it I can't get down anymore.

Every cloud, every cloud.

Morning all.
sybilshade another one here who had a pelvic scan of ovaries a few weeks ago. The ovaries were fine though it did pick up something unrelated. My surgery wouldn't give such details out by phone but yours might, especially if you could speak to the GP who you saw. You must get on with this as either it's nothing and you can relax, or it will need further investigation or a referral to hospital. Your GP won't tell you you have cancer, it's outside their diagnostic field.

Cheese / Food.
I don't actually like cheese but have just looked at my little information sheet (nowhere near as extensive as Trumptons). It says avoid takeaway food, unpasteurised milk and cheese and undercooked food. So I guess it's anything that might give you food poisoning.
I did get some ulcers but they cleared up. Zorgo the chemo ward gave me Diflam mouth wash for the ulcers. My taste buds have dulled I think and though I haven't lost my appetite everything does seem a bit tasteless so I'm certainly eating spicy food which is my favourite DC were weaned on chili.

@Trumpton my Herceptin was delayed until week 3 because of heart scans. I had an echo and a MUGA scan. Don't know whether you will have both. The Muga measures vascular function. I was already under cardiology so was nervous in case they didn't let me have the Herceptin but all was well. Judging by what I've read on here Paclitaxel given weekly isn't as brutal as the FEC and others. My main side effect early on was dizziness which has now improved and fatigue which is getting worse. It's just a bit relentless going every week. My best day of the week by far is the day after treatment because I'm buzzing with steroids. I didn't get my PICC until week 4 by which time my hand was a bit battered. The guy who fitted the PICC said that he had written to the oncologists to ask that all breast cancer patients be referred for PICC before they start as the chemos used make the veins sensitive and it's harder to put a PICC in later. I had a few teething problems with mine but it's settled now.

My bowels are now behaving but I have a plague of boils on my scalp.

Amazon have just delivered a turban, the website made it look like a pull on turban, it is a bloody DIY turban, do I look like I have the time, the energy or the patience for that bohemian crap at the moment. :roll: :roll: :roll: My fault entirely but GAH.

Have ordered another one.

Naomi When I was diagnosed in July I was told initially I would start chemo then. As it turned out I had surgery first and didn't start until October. By which time my nocturnal shopping on Ebay and Amazon had produced about 20 hats . Many of them are only £2-3 each I thought I liked the turbans and have lots. It turns out I don't like them and they don't suit me.

By far the nicest (and most expensive) is this one. I tie the scarf bit around my head and it has been admired by everyone.
This one is also lovely and I've got it in 3 colours.
I got this one last week as I don't like my turbans and it's very soft and comfy intended as a kind of Hijab I think. I'm going to order more colours as it's nice on my sore scalp.