Cancer support thread #73 - come in, we're here for you.

[Trumpton]

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 smile

Thanks everyone for the dire rear action plan! Going to have painkillers and immodium (and put a loo roll in the fridge!) And some tea and toast. Quite fancy a yoghurt, but not feeling brave enough to try it yet! Keeping fluids up aswell. I knew you would all have some good ideas! Thank you.

Hello everyone . Hope everyone is ok and your treatment is going smoothly. I typed out a big post but have somehow managed to lose it!
Redspook re the brachytherapy I’m sorry you’ve had to go through that. I’ve not started my external radiotherapy but I’ll found out more in the next few weeks.
Zorgoth waving to you. I’m in South Manchester too and being treated at Christies.
Contreau Hows the radiotherapy going? Are you back at work and having radiotherapy? That’s what I am hoping to do. I had a planning scan end of Dec. The hospital said it must be done that week ready to get my radiotherapy underway. Should have started my radiotherapy tomorrow (Monday) but the hospital rang on Friday to postpone it for another week as they weren’t ready. I was really annoyed as I was all psyched up ready for Monday plus I had arranged for people to give me lifts to the hospital as I still can’t drive yet.

CaptainNancy1 - rads are going well, thanks. 7 sessions done, no side effects yet, but I wouldn't be surprised if they kick in in the next week or so. Yes, am working, driving to and from my appointments at lunchtime (hospital is about 25 minutes from my office, so I can do my bladder-filling before I leave, which reduces the waiting). When can you drive again? I waited about three weeks after my hysterectomy; the consultant said as soon as I felt ready it was fine by her. Anyway, hope there are no more delays and you get started soon.

Zorgoth - in anticipation of dire rear (expected side effect for me) I was given a barrier cream called MediHoney, to be applied to sore nethers. I'm sure you could pick up similar in a chemist (E45?) which might soothe.

Hi @Bloodybridget - thanks for asking after me. I’m doing ok - a bit sore still and verrry slow - but I think that’s partly down to being on steroids (albeit a fairly low dose) since May.

It’ll probably be at least another week before the histology comes through, but the surgeon seemed fairly confident it wasn’t invasive- which is consistent with me having clear scans in November.

What will be “interesting” is whether this all has an impact on my treatment plan. I had 3 doses of immunotherapy April / May last year (chemo has very little impact on melanoma which is why survival rates for stage 3/4 used to be so bad) but it got stopped because of liver toxicity- hence the steroids. My liver levels were nearly back down to normal before Christmas.

I have a nasty feeling the surgeon may try to get me back on immunotherapy again. I mean, obviously I don’t want the cancer to recur, but the thought of starting back on the loop is a bit depressing- especially as I’ve never really been “off” it

Anyway, all a very minor whinge in the grand scheme of things.

How are you doing Bridget? I’m afraid I lose track a bit, but were you waiting for some genetic analysis?

CointreauVersial I'm week 5 post hysterectomy. I had an abdominal hysterectomy and everythings healing nicely. Had issues with bladder and bowels but they've seen to have sorted themselves out. I can officially drive middle of next week. Can't bloody wait as I've been stuck in for weeks! Going back to work in two weeks and that's when radiotherapy starts.

CaptainNancy1 - you say "officially", but there's no hard-and-fast rule as to when you can drive post-op; the six week wait is a myth. It's whenever you are ready. Having said that, if your hysterectomy was abdominal the healing may well take longer (mine was laparoscopic, so although I had the same amount of internal chopping about,
at least my abdominal muscle wall was less affected).

@Toofaroutallmylife you're right, I am waiting for information on possible gene mutations, but it's just something that appeared in a letter to my GP practice after my last oncology appointment. I could try calling my CNS to see if she understands it, but I'll probably just wait till my next check up in March.
I completely get why you're reluctant to get mired in immunotherapy again. I think while treatment is going on one can just about put up with it, but after it stops the idea of starting again is dreadful.
Hello and welcome to @peaceanddove, sorry you have this worry. I have heard that most mammogram recalls are false alarms, and of course I hope yours is. But if there is something amiss, the earlier it's dealt with, the better.
@Zorgothslugofdoom wishing you relief from dire rear and all its inconveniences and discomforts. As someone mentioned above, I do recommend laying in a supply of large panty liners.
DP and I went out for a walk today, in proper countryside just outside London, lots of muddy field paths, and on the way back when I was already pretty tired we went the wrong way and added an extra mile or so to the distance. But we did it, and I am amazed at how much I can do now compared to a couple of months ago.

Flying archer

Thanks for the info re subsequent Zoledronic acid infusions. I had heard that the first one is the worst so hoping that will be the case for me. I envy you being so far through them. I have 5 more to go.

Meercat. Think your daughter is right. I know the way my mind works. If I didn't take what is suggested/offered and then something happened, I know I would blame myself. These days there is patient choice isn't there, so it's presented to you as an option. Sometimes I wish they would just say "you have to take this now".

Hi Everyone,

Not much of an update, but I just received a call from a different hospital saying my hospital has referred me to them and I've an appointment tomorrow at the breast unit. Very odd considering my hospital hasn't said anything to me and I'm being put to anther hospital with a fast appointment. Now I'm more worried than ever. Has this happened to anyone else in London?

@Nonotmenori hell and damnation, more worries for you! Really sorry. I was originally investigated and diagnosed at my local hospital, they said if it was cancer I'd be treated at another hospital (Royal London), and I got a text message from RL with an appointment in the very near future, before I actually saw the consultant at my local place to get the results of scans. So not exactly your situation, but I wonder if it's something like that. It can take ages for letters to be sent out, so sometimes one thing overtakes another, IYSWIM.

@Bloodybridget I'll being sent to Guys now. The lady said they don't have time to send me a letter... a few things worrying me are that all through this, I've not been told to stop taking the pill I've also not been told to prepare myself for cancer or anything. Should I stop taking the pill? No one will tell me anything everyone I've spoken to is like we don't know. I've googled and guys is for cancer diagnosis and treatment so I'm guessing it's going to be bad news as lewisham would have just told me if it wasn't anything to worry about. I find the whole thing just madness and I've been left alone in the dark. Thank you for replying I'm out of my head scared

Nonotmenori oh that does sound worrying. It may be that the other hospital has a specialist breast care unit. I was sent to a hospital an hour away. Do you have someone to take with you to this appointment? They did biopsies on you before so they should now have the full diagnosis.
In my case when I went for my results there was a breast care nurse and a consultant in the appointment and they spent a long time talking to me. The breast care nurse then took us to another room and talked it through again and answered my questions.
Good luck for tomorrow.

Nonotmenori cross posted there. I'm annoyed on your behalf. It does seem to have taken a long time to get to this point and with no-one telling you anything. Surely they must know you fear the worst. At my first appointment the doctor said she didn't believe in keeping things from the patient and she was pretty sure it was cancer. That was just based on mammogram and ultrasound. So when I went back for biopsy results I was expecting the bad news.
As to the pill, you will know one way or the other tomorrow. I hope it's nothing serious.

Oh @Nonotmenori that's just awful. I hope you have plenty of support IRL. If it is the news no one wants, things start moving pretty quickly. I hope it's all fine but as @skap said the consultant will speak to you with the breast care nurse and then she'll answer any questions you have. I don't know what it's like in London but they gave me a folder with loads of information and space to write in so I could take stuff in at my own pace. Good luck xx

@Stinkyeddie how are you? How's it going? Xxx

@Skap they know I'm worried I practically begged for some sort of indication at the biopsy and second mammogram. They won't even get me the slightest idea of anything. Tomorrow I don't even know who I'm seeing just been told to go to the reception and that's it. Lady on the phone couldn't say if I'm getting results or why I've been referred. Lucky my boyfriend has been with me since we found the lump. He's going to take the day off tomorrow so I'm not alone thankfully. Considering what shitbag he can be, he's really stepped up the last two months 😂 Guess something positive has come out ifvall of this so far lol

Apologies for my awful spelling etc I fast type and always post before checking over.

Thanks @Hippiechick162 How are you getting on? Xx

Had my hair cut really short this afternoon. Found it really difficult, as I've always had long hair, but it's all coming out now, so had a hairdresser come to cut it for me at home (couldn't face going to a salon). I'm getting a wig tomorrow. I cried while she cut it (embarrassing), but at least having it short should make it falling out a bit easier- it's been awful waking up with it all over my pillow, etc.

I know it will grow back, but it's still a shock - glad I decided to have it cut short, rather than shaved!

I had mine cut very short last week . Thinner than this now but much better than floaty bits of hair everywhere !

Can I recommend Weleda Stress Relief spray. You squirt it on your tongue. Because I had lots of margin clearance ops with the inevitable wait and funtastic results sessions, I found that I had scorpions crawling around my brain ( thanks Shakespeare) after each op and before each consultant session. I had to do something and was going out to meet a friend in a near state of panic. I think I had gallons of adrenaline and cortisol whizzing round. I dived into H &B in grabbed this stuff. It may well have been placeabo but it did calm things down so I could enjoy meeting friend.

Ive just cancelled the onc apt I was to have yesterday following an MRI but as that hasn't happened cos the consultant radiography doesn't think I need one, I shall let them fight it out between them.

Hi @Nonotmenori, still pretty numb here really. I'm using the bach rescue remedy stuff to keep me calm. Similar to what @Flyingarcher said.
I've only known since last week but gp collared me today and jabbed me with flu jab as there has been an outbreak here. More biopsies tomorrow as they found 7 more lumps so can't give me a treatment plan until they have the results from that but will have that by Friday.
It's easier now I know but will be easier still when I know what is going to happen. The worry is the worse, I tell you I've got heartily sick of hearing think positive so I won't tell you that. What I will tell you is something I've learned from listening to the amazing people on this thread is you're stronger than you think! Good luck tomorrow xx

@Hippiechick162 I'm sorry you're going through this. The waiting is absolute torture. I have anxiety medication as I've got anxiety, but I've been reluctant to take it as I didn't want to depend on it anymore. I might have to get some rescue remedy though. Thank you I'll update tomorrow evening. I'm just sat here drinking vodka hoping to pass out later that way I know I'll sleep. I'll be thinking if you and good luck to you for a Friday xx

Much sympathy to everyone waiting for appointments/results/diagnosis/treatment plans. And an extra big virtual hug to @Zorgothslugofdoom. Reading that you were crying while having your hair cut made me want to cry too (helpful, not!). @Trumpton your hair looks very nice - and your eyebrows are impressive!

Hi @Zorgothslugofdoom, I've tried to dm you about the group for for some reason I can't. I'd like to go. Could you try to see if you can dm me?
Hope today goes well @Nonotmenori x

Notmenori. Thinking of you today.

Trumpton. I think your hair looks very pretty.

Zorgo. I can understand your distress, cold capping worked for me but the thought of losing my hair was the thing that brought the tears for me too for the first time. I hope you find the perfect wig, one which will make you feel amazing. Look forward to hearing about it.

Just when I thought I was getting towards the end of the nasty little side effects of treatment I havre managed to find a new one! A week or so ago my right thumb started to click when I moved it. Over the days since it has occasionally got stuck as I move it. Sometimes in the mornings moving it from a stuck position has been quite painful. Google (Yes I know, I am the first to say don't do it!) suggests that this is a version of trigger finger that occurs when taking Anastrazole. The article I read said that when caused by the drug the usual treatment (corticosteroids) don't usually work and it often requires surgery to fix it in the end. I know it is not the most serious problem and already having had surgery for carpal tunnel symdrome on both hands I know that if it comes to surgery it is not horrendous but I could really do without something else to deal with. Has anyone else come across this and if so how did it play out?