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

BitofFun
Good luck today. I being of the senile generation opted out of the proposed Chemo and egged on by DD reluctantly agreed to Radiotherapy.
Everybody's regime is different depending on what part of the body is involved, general fitness, age, type of cancer and stage.
Some Chemos are not so aggressive as others and I found out that , my particular chemo regime would not have been so bad as i imagined it would be.
All the best for you at your meeting with the drs this afternoon.

Thinking of you today @BitOfFun

And ,of course, of all of us at the Patience Inn .

Antibiotics started yesterday , I will ring unit tomorrow about chemo on Friday . GP gave me a weeks supply of Trimethoprim and said , in the circumstances , she would be happy for me to stop the course early if symptoms cleared . Not the normal advice I know .

meercat23 You are so right regarding my GP, but at least DD had more success than i did. She also did all the chasing up of appts for me and egged me on to accept the radical treatment , at least the Rads if not the chemo. How are you getting on with the Herceptin and is your neuropathy all cleared up now.?
Skap The only painkillers that work for me are the steroids, Pednisolone, but they caused increased overactivity of my bladder and the ONC said I didn't need them anyway
Are you not taking them for your RA during the rads?

This week seems to be the "melt down week" for some of us including me, but now some of it is off my chest and actually shed a few tears last night for the first time.

So many of us having a tough time right now, I'm thinking of you all.
to BitofFun

Bitoffun very best wishes for today.

Trumpton keeping fingers crossed that the antibiotics work fast for you.

digerd The Herceptin has not been too bad at all. I do have a constantly runny nose with some sore patches around the edge of my nostrils. The oncologist thinks this is due to the Herceptin but annoying rather than too bad. My joint pain is worse than usual but to be honest I think that is more likely to be the Anastrazole than the Herceptin.

 I had to have chemo because I needed the Herceptin and that wasn't too bad either.   It was tiring and there were side effects but generally they were quite mild although I was glad when it finished.   I think it does depend a lot on the kind of chemo you get though.

Delurking to wish @BitOfFun well for the appointment later. I do hope they can propose some treatment that you will be able to tolerate but I’m very sorry indeed to see your news, it sounds just horrible for you.

Good wishes to everyone, especially those facing uncertainty or enduring nasty side effects and other issues.

Just lost a huge post dammit! But really calling in to send positive vibes to BitOfFun and hoping you get something useful from your appointment today.

I'm doing ok, though had my 9th herceptin postponed this week as i also have a uti. Seem to be susceptible to them lately.

Hello to all at the Patience Inn

Hello all. Gosh there are a lot of us going through hard times atm (not me, I am fine).
Firstly a big hug and lots of sympathy to @BitOfFun, god I'm so sorry about your jaw. I really hope that they can offer treatment less grim than chemo, and also find some solution so you aren't restricted to a liquid diet.
@Skap waving back at you. As I said above, I am fine. Doing ridiculous number of poos most days, which slightly worries me, but on balance I doubt it's sinister. How's your RA pain now, any better?
@WTF99 sorry to hear you have a UTI as well as @Trumpton - much sympathy to you both.
@Hippiechick162 that is crap re hospital refusing to do surgery. Hope something can be sorted out so you don't have to start again from scratch, surely the least they can do is transfer records.
Hello and welcome - but sorry you're here - to @lm753. As others have said, waiting for proper diagnosis and treatment plan is horrible, probably when you have the full picture you will feel a bit calmer.
@CaptainNancy1 how's the rads treatment going now?
@CointreauVersial I'm sure everyone else here, like me, is very glad you are feeling OK treatment! It certainly doesn't make you a fraud, your posts are always very kind and helpful.
DP and I suddenly have lots of holidays in the calendar (several short breaks, and a longer one, all UK but hoping to go to Greece in the autumn). I have also pencilled in likely dates for follow-ups with the oncologist!
Very warm greetings and good wishes to all those I haven't mentioned.

meercat23
I had a surprise today all thanks to tenacious DD. It was an appt for a full spinal MRI scan 20th Feb. referred purely by my GP. Again no specialist involved and no consulation with me
It does not only involve my spine but the sciatic nerve, shooring pains in mainly one withered buttock which runs down to my R ankle. I am so lop-sided I cannot balance on a cushion now as fall sideways onto my flat buttock from my rounded one . Good job I am too old to be bothered what I look like anymore .
It is at a local small hospital and the MRI scan i s a short double open ended one, hurray! The narrow tunnel ones would be too claustrophobic for me but I was prepared to go through with that.

Just read it back so far and am in fits of laughter at my "withered R buttock going down to my R ankle {grin]. Of course I meant the sciatic pain from my withered buttock. Oh, it really is good to have a laugh.
I am not sure why GP is again doing it himself and not with a specialist, but hopes he sees the muscles and sciatic nerve and check for CE.
Anyway, I am now worrying about how I can lie on my stomach and breathe or twist my neck sideweays

Must think on the bright side until the next fiasco.

Thanks so much for all the good wishes!

Didn't say much, it was just the maxillo-facial consultant. Says surgery unlikely, radio unlikely. Sent me for an ultrasound and guided fine needle biopsy of the enlarged nodes in my neck.

That was HIDEOUSLY painful and I cried 😪

I go back next week for results, and see my own oncologist later that day.

So yeah, cancer is having another week's party in my face.

Bitoffun that's sounds horrendous. I hope that they are able to come up with a workable solution for you.

digerd great news that they have booked you a scan. Well done your DD. I did smile at your 'withered buttock' but I have to tell you that if mine withered it would certainly reach down to my ankles!!

Today was 14 of 18 Herceptin sessions. All good except that my blood pressure was sky high and they think my legs were swollen. They have asked me to go back to the cardiologist asap. He was worried before that the Herceptin was affecting my heart. If he thinks is definitely is that will be the end of the Herceptin for me.

Hi everyone,

So sorry I've not been around. @BitOfFun sorry to hear it's dragging on and it hurt. I've told my doctors I'm not ever having another biopsy done ever again. I'm still in pain from December! Good luck with the results.

@Hippiechick162 any news?

@CointreauVersial I hope you're ok too.

@meercat23 Are you taking any medication for your blood pressure? I've got high and I've been on medication for a few years. Hope you're well.

I saw the genetics clinic yesterday and we went through my families history. I even got my mum on the phone 😂 They decided I'm not at risk at this time so to go ahead and book the lump removal. I've had several calls today one to my next of kin regarding an urgent appointment tomorrow.. I was in meetings all day. No one left a voicemail lol my poor cousin was worried sick. We've cancelled Mondays meeting and tomorrow I should be getting a schedule for surgery date. It's all moving fast which is great, but I'm shitting myself really. I've not had back the HER2 results. I'm ER and PR positive. Hopefully I'll get this tomorrow. Can I go and cry like a baby now? I don't wanna go I'm sick of going to hospital now and it's not even started yet lol

Yes, definitely go and have a good sob! I recommend watching Terms Of Endearment to really get it all out!

It's really shitty being scared and wondering what's to come, so I do get it- we all do

Hi everyone hope you're all as well as you can be!
Thanks @Bloodybridget...here's hoping
@Nonotmenori I wish! Went to doc today and was a sobbing mess. He is a new doc that was being observed by my normal one (who looks scarily like Ant Middleton...easy on the eye looking at the bright side). The new doc told me to "remain positive and not get depressed as it has negative effect on the body". I looked him dead in the eye and in what my kids call my work voice (yr 6 teacher) I said "I'm not depressed, I'm scared and very angry. No one tells me anything, you all deal with cancer so much that you forget that it's attached to a human being!" Then felt immediately guilty. He's going to get back to me tomorrow as he is trying to sort the whole mess out. Whatever you do, don't watch "Stepmom" it damn near broke me!
@BitOfFun so sorry you are going through all of this!
@meercat23 good luck with the cardiologist

I'm so glad you pulled him up on that! Brava!

@BitOfFun is that an American family based in the 80's?

@Hippiechick162 I'm sorry. And I don't blame you at all. Hope he helps and sorts this out for you. I'll keep all crossed xx

Do you all want a laugh? Today I had customer meetings so I was waiting for the bus and both eyes started streaming from the cold wind. Didn't think nothing of it. Went to a meeting in Canary Wharf then to the royal free. All on the tube met loads of people was only until I used the loo 5 hours later I realised my mascara was all down my face and not a single person told me!! Not one person asked me if I was ok hon!!!! 😂😂😂 Note to self always carry a mirror and check said mirror 😂

Holy moly @Hippiechick162 - well done you! Please don’t feel guilty - you were right to be fierce!

@Nonotmenori - this reminds of the time I went to see my mother in hospital (another story, another thread) - I came out, did a lot of ugly crying, in the rain. I walked into a favourite bar and ordered a large wine, and the lovely barman said “erm, I think the rain might have messed up your make -up. You might want to sort it out”. OMG - full panda mascara!

Lots of hugs to everyone having a hard time. I’m on my final steroid wean, so exhausted and depressed, but at least I know it’s all chemical induced!

Seeing the gynae tomorrow to see if they recommend Aldara cream on the melanoma in situ - so not keen to do that. We’ll see.

@Nonotmenori, yes, it's one of my favourite movies.

Reading everything everyone is going through makes.me feel very selfish.
I am lucky I work in the NHS and knew someone to ask.Turns out my MRI had been booked aftery queries got toe the right person.
I did get phone call and got information about what they think so far.The woman I spoke to asked if I'd had ablood test for cn125,It has been put on the system at the before my CT but hadn't been taken because I had had no communication from them.I sorted that out myself on Tuesday at work.
They say so far that there were cysts and other tissue but it is around my ovary,caecum,appendix and maybe omentum .They can't decide where it is originating,how much it is invading other structures or what the exactly the mass is.
I have however got a several contact numbers now so I can bypass the secretaries.
Since I still haven't had a letter if I hadn't askedy college I'd still be waiting with nothing happening.
A measure of how tired I am is that I fell asleep in the MRI scanner.

I really hope you get some answers, Hag .

meercat23 In a way we are lucky to be the age we are and still 'around', compared with the young ones on here . But with advancing age comes the old 'ticker' problems as well as other things.
I have my investigative op on my bladder under GA on next Tuesday but only if my heart and lungs are being well behaved and my HDU bed is still available. I am all prepared to be sent home again which will be the 4th time. in the last 12 months. Just hope it is right what my sis said " Oh well, it can't be serious then" . But not what the cancer nurse said which was " You can't refuse to do anything as you will be in agony if it gets into your bones and there will be no meds that can ease it" . Good luck with your cardiologist.
TheHag
How awful for you , all this uncertainty, but glad you had a lovely sleep under the MRI scan. Good luck with the results.

BitOfFun
so sorry your biopsies were such agony at least mine are done under GA. DD had some biopsies under ultra sound in her breasts some years ago and I heard her shrieks from the waiting room- all was OK thank goodness. Good luck for you results too.
Hippiechick
You sound like my DD when my op was cancelled for the 2nd time she had a right go at the poor nurses saying she was sorry as it was not their fault and then burst into tears . Good for you.

Another one who went and sobbed on the GP yesterday. Not for cancer stuff but just a long list of other problems - pain, pain relief, diarrhoea, nausea, persistent sore throat but no virus, night sweats etc.. She was lovely and gave me a hug. When you have several health issues the professionals often blame the other condition IYSWIM. Is it Rheumatology, oncology, unrelated, drug side effects and if so which drug? So I didn't really know who to approach. I really need one person to oversee everything else. Not got very far but feeling slightly less down about it today.
Radiotherapy 4 of 15 done and no side effects.

Thanks @BitOfFun I'll try and watch it over the next day or so.

Cried today to the nurse and consultant. I got let down yet again.

Anyways on the plus side my surgery is booked in on Tuesday which is super fast. I'll most likely be kept in overnight. I feel sick to my stomach right now. Could be because I'm upset or nervous I'm not quite sure which. So that's me for now.

@Trumpton how are you today? Has the UTI improved? Any news of tomorrow's chemo?

@Nonotmenori Tuesday is great. I was very pleased to get the lump out asap though it was 4 weeks after diagnosis in my case. Did you get the HER2 results? Will they be doing a sentinal node biopsy as well?

@Hippiechick162 I cannot believe a doctor gave you the "stay positive" speech. That will go down in his training experience as a lesson on not patronising patients.

@TheHagOnTheHill falling asleep in an MRI scanner is truly a sign of exhaustion! Any clue how long the MRI report will take?

Anyone watch Cold Feet? I had series 8 on my planner from last year and had never got round to it. When I found out the breast cancer storyline I watched it. It was very well done but I can't bring myself to watch season 9 yet as I'm not up to emotional stuff.