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

[Brassica]

I have meercat! I’m done! What a bloody relief. Feels amazing to have done it.

[Skap]

Bridget I guess if you are in London and GCs in Scotland you probably don't see them often. Are they old enough to Skype you? Baldness. I was told this particular chemo will definitely cause total loss of all body hair. I never wear make up so haven't a clue about drawing on eyebrows. Trivial in the great scheme of things but somehow I feel that if I don't care about anything I am in danger of becoming depressed.

WTF How are you today? Hope you had a more peaceful night.

Snows Have a good weekend in Canberra!

Mustard hello and excellent news about the nodes.

Fingers crossed for some good news from Brassica and Trumpton

Not a great day here. I had lunch planned with an old friend and was looking forward to it. I had seen my GP earlier in the week for a bowel problem. "Did you think it was cancer?" she said. Well, er no actually that thought hadn't crossed my mind. Anyway she is running a load of tests and I got a phone call this morning to go into the doctors as there was "a concern about a blood result". Cue panic. I saw a different GP (who had no idea why I'd been called in). He looked at the bloods and said it was completely unsurprising that my inflammatory markers were sky high in view of my recent health and to CALM DOWN. Actually he was cross that I'd been called in and worried unnecessarily, said if he'd known he'd have just picked up the phone and rung me. So false alarm but lunch cancelled and stress levels sky high.

[meercat23]

Oh Skap you could really have done without that. Great that it was a false alarm but no alarm at all would have been better.

[MustardScreams]

@Skap bloody hell, what a stressful time. Glad it’s a false alarm, but you definitely could have done without the worry!

In regards to eyebrows, if you pop into a department store with a good beauty section they’ll talk you through products and how to apply, if that’s something you wanted to do. Mum used Bobbi Brown when she lost all her hair, and just putting her eyebrows on really made a difference, even if she wasn’t wearing her wig.

[astuz]

I've not been on here for ages, but I have a question, so I'll introduce myself.

I'm 47, diagnosed with breast cancer Oct 2018. Fortunately caught early, so had a lumpectomy. The lump was on the surface of my left nipple (I saw it, rather than felt it), so they've basically removed my left nipple. I had a month of radiotherapy after the operation, and I've been on Tamoxifen since Jan 2019.

My question is: to those of you on Tamoxifen, do you feel extra anxious at all? I mentioned it to my oncologist, and she said it can cause mood swings. I then got the distinct impression that there was nothing they could do about it anyway.

I don't have mood swings as such, it's more an anxious feeling, but the anxious feeling could be work-related - I only get anxious in a morning before my busiest work days, so maybe I'd be feeling like this anyway and maybe it's not the tamoxifen at all? But then, I didn't used to feel like this before, and I'm doing the same job?

[WTF99]

Brassica! So utterly delighted for you! You've done it! Hope side effects are few from this dose....but at least you know it's the very last time.
skap what a nightmare and thank goodness you saw a sensible GP for the actual result. It was the inflammatory marker in my blood that was causing concern when I was in a&e....they said it was a bit high for someone with just a viral infection so of course lying on the trolley on my own at 3am I started to imagine that the cancer had come back allsorts ....and then it was completely normal after the antibiotics. So much stress and wasted energy.

I've had a quiet day. Have been sick twice which is unheard of for me but I ate some rich food last night to celebrate being home and I think it was that. Put myself through misery for nothing as I couldn't even taste it.
Anyway, I'm feeling a bit better now. Temp continues to be normal so hopefully soon on the mend and ready to have my last poisoning a week on Monday. That thought fills me with horror right this minute I have to say as I just want to feel half ok for a few days.

Wishing everyone a happy start to the weekend. It'll be a bit of tv and early night for me

[WTF99]

astuz sorry, I crossed posts with you. I was briefly on tamoxifen and didn't notice anxiety as an issue, though others might be along with different experience.
What did make me anxious though was having breast cancer and that didn't go away straight away just because all the active intervention was finished. It took quite a while before I felt safe again, if you know what I mean, and as if I could properly deal with the challenges of every day life. Maybe it's something to do with that?

skap 're eyebrows, I had semi permanent make up tattoo type ones done by a lovely woman in Dorset who specialises in women in our position. (She does fantastic nipple tattoos on reconstructed breasts as well, which i've never gone for but might treat mysrlf to when im through all this) Might be a bit late for you now, depending on your schedule, as you have to have a clear 2 weeks pre chemo for them to heal, but i mention it in case anyone is reading and might find the idea useful. They were a bit fierce looking at first but have faded to a lovely powdery mid brown now and look.pretty natural I think. I like them anyway.

[Trumpton]

Final results in , HER2 positive so will need Herceptin .
Now passed over to a hospital in Liverpool and await pre-op appt .
My consultant her thinks two weeks until that then another couple of weeks until mastectomy and reconstruction .
I will ask if I can have it after planned festival weekend in Cornwall( 31st October to 4th November ) but have promised not to sulk if we have to cancel our trip.

Skap ....that was dreadful ... a little bit of joined up thinking wouldn’t go amiss !

Mustard consultant said she would take stitches out today . I had to admit I had taken two out myself as they were irritating me . She sighed and raised her eyebrows at me !

WTF enjoy your early night .

I have 7 sleeping pills from gp as my sleep is totally shite !

[WTF99]

Ah.....does that mean chemo as well trumpton?
Great that you've got a plan for the surgery. Hope you make the festival.

[dramaqueen]

Hi @astuz, I started taking Tamoxifen a year ago and ended up with low mood and anxiety. It may not have been the Tamoxifen of course, as I don’t think no anyone gets out of this cancer malarkey in one piece.

However I started taking citalopram and Mirtazapine (a very low dose of both) and feel tons better. I feel calmer and more able to cope when things don’t go to plan.

I have also had my Tamoxifen dose reduced to 5mg by my oncologist. There were some trials earlier this year which showed it was as effective as the 20mg. I feel so much better on this dose after a month that I will consider coming off the ADs in a while.

I hope that helps.

[Trumpton]

WTF99 . Yes chemo but on island . I should be away for about a week for the surgery. Currently having discussions with DH who thinks he should come with me . Consultant recommends going alone because as soon as I get there I will be in system but DH coming over after 4/5 days to help me home .
It will be awful for him as I will be out of it for most of the time and he will be more use at home . Horrible for him .

[Skap]

Brassica - all done, brilliant news.

Trumpton I'm glad you have decisions made and a plan. Bugger about the HER2 as that means chemo as well as Herceptin (it's only licensed by NICE for use with chemo). When I was in hospital it was only overnight but I had to argue against DS and DH making a two hour round trip to visit me. Could you compromise and have DH visit you mid stay? Or is it ridiculously difficult/ expensive to travel?

[Trumpton]

Skap
I know what I am like and I just like to shut down and get on with it . My last op her was able to come with me to ward but was then sent away by nurse and that suited me well .
He could come mid week on a day trip but it would be stupidly expensive for what could be a 10 min visit .

[Trumpton]

Her = he !

[WTF99]

Ah, I'm sorry about my stupid comments upthread then trumpton ....I had somehow missed that your DCIS had become invasive.
I hope you get all your arrangements sorted. It sounds complicated.

[Trumpton]

WTF99
So had I ? Only became apparent at today’s meeting but it’s only a tiny bit .
Goodness me ! Don’t worry please .
On my first wake up of night !

[Bloodybridget]

Hello all - Trumpton hope you are not still awake! That's quite hardcore taking some of your own stitches out (shudders).
MustardScreams sorry you have the weepy armpit woes but that is great news re lymph nodes being unaffected.
ILoveDolly aka Emperor hope your conversation with the nurse was useful.
Brassica loud cheers coming from here re finishing chemo, so pleased for you!
WTF hope you've ejected whatever was disagreeing with you, what a shame! Wishing you a peaceful ten days and final chemo on schedule.
Another landmark for Snows finishing radio - hope you are having a good time in Canberra! Are you in a hotel?
Skap glad you are getting tips re managing hair loss. How horrible to have the scare about bowel cancer, that's the last thing you need, and missing lunch with your friend. I hope the second GP had a stern word with the first one. To answer your question, I guess I usually see the Scotland DGCs three or four times a year, and we do Facetime with them , they are 8 and 3 yo.
astuz I have no personal experience of tamoxifen but a friend who was on it after mastectomy switched to letrozole ( she is post menopause) as she did feel very anxious and thought t might be the cause. Hope you can find a way to alleviate the anxiety.
Wishing everyone a good weekend!

[astuz]

That's interesting @dramaqueen. Maybe they'll reduce my dose at some point.

[meercat23]

Trumpton at you taking out your own stitches but I can absolutely understand why you did. That time with the stitches and dressing especially under arms was the most horribly uncomfortable time.

I had stitches for my port that came out on their own and that was bad enough. I think the doctor that did them used some kind of running stitches that unravelled. (Like chain stitch when you pull one end) The first time they tried to use the port it all burst open and I had to be re-stitched before they could use it. The chemo nurse stood over him while he did it !

I am off to Portugal for a few days with friends. Hopefully I will have the energy to keep up with them. I hope the weekend and next week goes well for everyone.

[wineoclockthanks]

Trumpton I took the cannula out of my hand after having DS2 (by c-section) because it was so painful and I'd been promised for about 12 hours that a doctor would come and remove it. It was so sore that I couldn't sleep so at 2.30am I did a DIY job!

Hope everyone is sleeping well .

[Trumpton]

Maybe diy doctoring in a small way is the thing to do !
I almost left the ward last time with cannula still in !
It was only when the nurse offered to do a quick check on dressings that we realised it was still in .

[Bloodybridget]

meercat hope you have a really lovely holiday. Your friends will surely adapt the pace a bit to allow you to keep up.
Skap I think I might have come across as flippant when you posted a while back about the prospect of hair loss, I do apologise. Completely understand this can be very distressing.
I'm not feeling brilliant now, the stye is really bothering me and I got some antibiotic ointment recommended by a friend who was a GP, then discovered there are warnings about use for chemo patients, so had to ring the oncology hotline, who did say go ahead, but apparently it can affect bloods . . and seems to make my eye even more sore .. and I fear I am starting a cold . .
However I have speed-knitted a hat for my great-nephew - want to see it ?

[Skap]

meercat have a fabulous time in Portugal .
WTF hope the sickness has settled. Thanks for the tip about eyebrows. I am probably too late but I also have very sensitive skin and prone to skin infections so daren't have semi perm tattoo.

Bridget Not flippant at all! I am not really that bothered about hair loss it's obviously low on the list of priorities in the great scheme of things. I'm the sort of person who need to research and plan for every eventuality, so that was on my List of Cancer Stuff to do. Styes are very painful, and even worse n doubt with no eyelashes. Impressed with your speed knitting, do you knit hats for yourself?

I have a cold as well, thank you DS1. He's a teacher and of course in the first half term always gets colds from snotty children.

On the subject of cannulas. I was once held hostage by a hospital abroad. We had taken my niece on holiday and she ended up in hospital with anaphylactic shock. The insurance refused to pay and the hospital refused to remove the cannula until I produced my credit card. My sister who is a nurse and very gungho and unsympathetic asked why I didn't just whip it out myself

[WTF99]

Just a quick check in from me.

meercat I hope you have a fab time with your friends. You certainly deserve some treats.
bridget Sorry to hear you're suffering with the stye and brewing cold. Good that you sought out some advice though. I think if I'd rung the helpline a bit earlier last week when I was feeling particularly rough I might just have ended up with some antibiotics instead of a hospital admission. Do you have a poisoning coming up? Love the hat....I want one like that! I'm currently very slowly knitting myself a jumper. I'm a novice and under supervision, but it's very easy and chunky knit so a few rows looks like a lot done.

skap hope your cold clears up quickly.

I'm feeling quite a bit better today. Main issues are complete lack of appetite and of course return of dire rear. Back to the Imodium for me.

[Bloodybridget]

WTF sympathy re loss of appetite and dire rear. Hope your sweater turns out well! Hats for babies are all I knit these days (I suppose I could do one for myself, Skap, it never occurred to me!), oh and the occasional garment for a dolly or teddy bear. My next chemo due Friday, I don't think I am getting a cold now so hopefully I will be fine to go ahead.

I do think the oncology hotline is brilliant, I always get through to someone straight away and they ring back if necessary.