CANCER SUPPORT THREAD 60! Here we are again... join us if you have any sort of cancer (or if you're waiting for cancer test results)

[WhatWouldLeslieKnopeDo]

Welcome everyone to a shiny new thread :)

It's a club nobody wants to join, but if you need us, you are more than welcome. If you're waiting to find out if you have cancer or not then pull up a chair. We hope you won't need to be here long, but we are here as long as you need us. And if you do have cancer then this is the place for you. Swear, rant, scream, laugh, cry... someone will have at least an inkling of what you're going through!

We only have one rule, which is do not Google. Though perhaps we should update that to please Google responsibly as few can resist completely!

I hope this thread will be a source of support for all who need it

Our previous thread can be found here

Hi Purple, I've had mri and ct. CT is incredibly quick...literally minutes. MRI took me around half an hour. I am fairly strange in that I found the MRI beeping noises fairly soporific and um had a snooze. But my mother is claustrophobic and found hers v tricky....so if you are remotely claustrophobic it might be an idea to see your gp and get some sort of valium/beta blocker thing sorted. I also found the nurses were incredibly kind and explained it all brilliantly.. .so I knew exactly what to expect. Good luck with both...xx

Thanks ladies, I’m not claustrophobic in the slightest so there is quite a high chance of me dozing off too

My MRIs usually take about 45 mins, but they're quite complex as they're brain ones. The ones I've had as an inpatient have yielded results in an hour or two, and outpatient ones I've usually had a letter within a week to say all was stable. Not sure if that's more based on the type of cancer though? Never managed to doze off though due to the big head-cage... do You only have to wear those if it's your head being scanned??

Just had radiotherapy #11 of 33 - a third of the way there! I hate the Monday one's as the mask always feels even tighter. Apart from a bit of tiredness I'm doing ok with it all so far thanks leslie.

carbuckety sorry you've found your way back here. I hope the wait isn't too bad.

Baby's crying so dashing off. Hope everyone is doing ok today.

Sorry you are back here carbuckety , you are right , the waiting sucks !

Purple if you don't have an issue with confined spaces , you will be fine with the mri. I think I nodded off in there as I had no idea how long I was in there . The guy said he was going to play in some music , thankfully the 'banging' completely blocked the pants music .
The hospital where I have my scans , e mail the images to my oncologist (different hospital) at the end of the day , but then the report takes around 10 days .

littlegreycat well done on getting a 3rd of the way through . I found once I tipped over the half way point it seemed to go much faster .

Glad you enjoyed your night out Leslie

CT scan done very quickly and efficiently.

But 10-14 days for results, which could get a little tense for me.

I’ve been feeling horribly tired today (3rd day of new drug). I’m actually OK when I finally get moving, but it takes such an effort to get myself going. Think my sense of taste might be altering too, and my skin continues really dry. Could be quite a bit worse, having re-read the side effects but if the bumf.

Sorry, that was all too much ‘me, me, me’

Tiredness and stress showing, I’m afraid.

iVampire, not at all too much me,me,me! This is a space to say what you need to and when you need to x

Need to put the children to bed now. DD is doing a day of the dead outfit for Halloween tomorrow, practised the make up and although she has most of it off need to help clean her face properly as she still has black under her eyes and looks a bit like a pirate.. :)

iVampire no, no, no, don't even begin to think that for a minute! Honestly, every post and especially every moan or whinge matters. It's no good being happy and cheerful all the time. Cancer is fucking awful and we need to be honest about it - warts and all.

I want to hear how you - and everyone else - is truly feeling. FWIW I'm totally fucked off because my toenails are dying and I can't walk easily. I've lost my social life, my hobbies, my energy, my hair and sometimes my hope too. The one thing I have been able to do - until recently - is go for walks. And now I can't even do that.

My taste has gone too, and I can't enjoy a glass of red wine anymore because I can't taste it. And my skin is suffering too.

On the upside, I finished chemo last week though I will be on maintenance for until July, so I'm hoping and expecting to feel better soon.

That is not at all too much “me me me” ivampire! Please feel free to rant away if it helps. If nothing else it helps me to stop feeling sorry for myself.

Twitterqueen are there any hobbies you fancy taking up that don’t require much energy to do to keep you occupied? Hope you feel better soon

purple I'm used to being active so it's very hard to be so immobile. I sit in front of a PC all day every day and until my beloved dog died in January I would walk for at least an hour every day, and go line-dancing every week. I miss the fresh air and all my dog-walking friends.

I think it's absolutely right to have a good old moan, cancer isn't fun or pink and fluffy. It changes your life in so many ways and robs you of so much.

My moan of the day is that two weeks after I stopped bleeding for three weeks (I'm supposed to be post menopausal ) I'm bleeding again. I've tried to get hold of my nurse all day to get the results of the hysteroscopy but she's not been about. More time again on the phones tomorrow

Yep, absolutely right to have a bit of a rant.
TQ I felt really fine on Avastin alone (compared to how I felt during frontline chemo) and was able to resume Zumba and other jiggly things.
Apart from the trips to the hospital, it felt much more like normal life than life with chemo. I hope it's the same for you. x

twitterqueen I lost my taste for so many things on chemo. Everything tasted of celery which I can no longer even look at and wine and chocolate are still not back being good tasting. A bit annoying. Most things are okay again though 4 years on. What I hated was the lack of choice/ control of my life. My fatigue was dreadful and I could only tolerate short trashy tv and magazines, not even a book. Sorry. But I kept a diary and I looked back at it this weekend and it was about 3 months after end of chemo that I felt I could hold my own in a conversation. It does come back

Hello lovely lacies. I'm trying to catch up. Sadly, we've more members, but welcome and this is an ideal place to be on this cancer journey( not a big fan of all these terms and catchphrases like fight and journey, but it actually is a journey!)
I hope you feel comfortable here and we're all here to support one another ad well as rant, ask, curse and moan.
Thanks leslie and mrs for your thoughts and concerns
I had my biopsy, had to wait a week for the result, had an awful cold( probably due to the stress), struggled with half term hols..but the good news is is NOT cencer come back but a fibroadenoma. I almost passed out with anxiety at the hospital. I'm so relieved, so thankful..although they have to monitor it etc etc..(they're already monitoring me anyways!) I immediately took my DC out for a thank-God-it's-not-cancer celebration
To recap: I was diagnosed in June 2015 with breast cancer, had lumpectomy abd axillary clearance in july, started chemo in August, had rads in March..they seem to find something to worry about every time I go for a follow up and I've had a couple if false alarms as those who know me on here may recall!
I suppose they'll do it again and again too
Anyways, I'm going to try and read over what I have missed.
Chewing is still in my thoughts as always.

Hi royal that's fantastic news, I'm so relieved. It's horrible that so many new people are having to come here but even more so when they have that news of secondary cancer. You do always seem to have to have extra tests and anxiety and it's not something you get used to. So pleased for you.

If I was uncertain yesterday that another period had arrived after a largely sleepless night I am now absolutely sure. I've got so many things going through my head about how to infiltrate the gynae dept and oncology dept to get some answers. I need to see the report of the hysteroscopy but my appt isn't until December so need my breast nurse to read it for me, if she will. I need to see a gynaecologist quickly, again will she help me to achieve that? Should I try to go through my GP but they cocked up so much last time I've lost faith? I'm on anastrazole which is only for post menopausal women, I'm obviously not one now and I've been on it for four months already, if I let things take their time I'll be on it for a good bit longer. Who would want to be on a drug that they know is incorrect for a day longer?

I can see only one way through this and that is to arrange to see the gynaecologist through bupa and arrange a private hysterectomy. I don't want to go back on tamoxifen and endure all the initial side effects again, I don't think they'd give me it anyway because it made me bleed too. I want someone to take control now and not to spend all day calling different departments pleading to be seen.

Sorry for the rant, I'm tired and anxious and I can't see an easy day ahead.

So glad it was good news Royal.

Happy Halloween everyone

Royal Brilliant news! I'm so happy for you

Carbuckety I'm so sorry you find yourself here again. I'm a recent addition and have found this thread so supportive and helpful. I will be thinking of you and your daughter. I know what you mean about no mental capacity for anything except trash... though I did get 5 questions right on University Challenge last night! A record!

MrsRhod I have no advice I'm afraid, except to start with your nurse. I had to go private for my hysterectomy in the end because the bloody hospital refused to answer any of my phone calls to schedule me in for the op (not my usual cancer treatment hospital). Is it worth trying PALS? I do understand just how upsetting and frustrating it must be for you.

royal so pleased for you - what a relief.
mrsrhod horrible to be wondering and anxious. I agree that you definitely need some conversations to set your mind at rest. Maybe a gynae surgeon with oncology subspecialism would be a good person to access, as they could probably deal with all of your questions re the bleeding, the drugs and the possible hysterectomy? If you have bupa, they could sort this really quickly. Good luck with the tricky day ahead x
leslie hope the tests were ok and that you're home eating your own cold toast later today

TQ and Carbuckety perhaps we should start a confessional about the trashy tv, mags and books that we've read since chemo! I've developed an odd obsession with 'Say yes to the dress' and 'A place in the sun' and while I'm manfully struggling through something highbrow for Book Club, it was 'Mount' by Jilly Cooper that got finished on holiday!

Are men allowed on this thread? Prostate cancer with secondary metastases here.

I ask because, when I was still teaching, in a girls' school, we had an assembly where a visiting speaker pointed out that girls have fathers/uncles/brothers/boyfriends and that men are notoriously bad at getting themselves to the doctor so girls/women need to be aware that all may not be well.

I will happily share my story if anyone is interested, of course.

Oh wow! A man! of course you are most welcome Leonard. How lovely (because cancer is not lovely) great to have a new perspective. Please do share your story. Everyone is welcome here and each story is unique. My uncle has prostrate cancer.

Nick ROTFPML at "say yes to the dress". I watch this when no-one is around. Why? I have no idea. I will never wear a wedding dress again. The same thing happens every time! I'm also a long-term Escape to the Country / place in the sun / winter place in the sun etc. One can but dream......

Fantastic new for you Royal! I hope it stays that way

I’d love to hear your story Leonard. Feel free to share away if you want to

Breast cancer nurse flatly refused to speak to gynaecology to advocate for me and get an earlier appt. She confirmed I am on the wrong medication and as I started crying with frustration suggested I stop taking the Anastrazole. I've tried gynae, no one picking up the phone, our private bupa hospital but my surgeon is no longer operating there. Finally tried the private ward at my local hospital but the same surgeon is no longer working there either. More tears and a lovely nurse has listened to me, been horrified and has gone off to make some phone calls. Awaiting her call back, maybe she can speed things up for me.

Thank you - here goes...

Diagnosed with suspected prostate cancer in 2011. The diagnosis was very much a chance affair. I had been to the doctor about a different issue and when she got the blood test results she spotted a high PSA reading and referred me, initially, to a urologist.

The recommended action at the time was to watch and wait, with frequent blood tests, but in 2012 I had a biopsy which confirmed the original suspicion. At this point I decided to retire from teaching at the end of that academic year, aged nearly 63.

I had two MRI scans and was offered a choice of three treatment options - radical prostatectomy, external beam radiotherapy, or brachytherapy. I chose the latter (it involves placing precisely positioned radioactive sources within the tumour). Two nights in hospital, and the procedure took about four hours, under GA. This was in August 2012.

Felt absolutely fine. Was asked if I would go back (teaching) for two terms from January 2013, part time. Did so, and found myself teaching radioactivity to a group of girls who found it fascinating that I was far more radioactive than any of the sources schools are allowed to keep. (I used to teach physics.)

In early 2013, began to suffer from back pain. Back to hospital for a gamma scan (to the same nuclear medicine department that I had previously taken sixth-form students to visit, so the staff knew me as a teacher, now a patient).

Saw consultant 15 minutes (!) after scan - in a different building - and it was confirmed the cancer had spread and I now had tumours in various parts of my skeleton. Started on the drugs triptorelin (6-monthly injection) to reduce testosterone levels (because the tumours grow faster in the presence of testosterone) and zolodronic acid (6-weekly IV infusion) to strengthen my bones. Also calcium tablets taken orally.

This is getting a bit long! I'll stop here and post more later if people are still interested.