Roll up, roll up and join the lacies for CANCER SUPPORT THREAD 59 - anyone with cancer is welcome (and those awaiting test results)

[WhatWouldLeslieKnopeDo]

Hello everyone,

This is the cancer support thread, which has been running for many years under different names. Most posters have breast cancer, but various other cancers are represented too! Whatever cancer you have, feel free to join us. We also welcome those who are awaiting test results to find out whether or not they have cancer. We know how difficult the waiting can be and we are happy to hold your hand. Hopefully you won't need to join us permanently

Feel free to ask any questions. There will usually be someone who knows the answer or will know where you can find it.

Whatever you do, stay away from Google!

You can post anything you like here. We don't mind swearing or complaining or angry ranting. We aren't brave or inspirational and you don't need to be either. Nobody signed up for this, but we support each other as best we can

The previous thread is here

VLCos It is next Tuesday-what happened at your's?-Glad you got your Scan moved forwards-are they thinking Gallstones? I know you have had an ultrasound too .

@charliebear78 ah OK let me know how you go :-)

I had some pain in the right side under the rib this was alongside the bowel problems all started at same time. Gp sent me for an abdominal ultrasound showed many gallstones . So I went on a low fat diet which eased the pain. But then the bowel problems stayed. I went back to GP who said don't think gallstones causes that so sent me to gastrointestinal surgeon .
When I went to see him he was fab . Said CT to look for Crohns (family history ). Colonoscopy for full look at bowels . Said age and no blood is good sign but can't rule anything out.
He obviously didn't think tests were urgent as I know he can do them within a week if that's the case.
In the meantime I had an appointment with gallstone surgeon who said bowels could be affected by stones but have tests to be sure and has put me on list for removal!

What's also making me wonder if on ultrasound it said can't see tip of pancreas due to bowel . Hope tip was OK rest of it must have been OK. Paranoid I know !!

Finewine glad the scan went OK. Two weeks is about right for results, as a radiologist will look at the images and write a detailed report

VLCos they'll usually give colonoscopy results on the day, or at least an indication. If they take any biopsies on the day then those results will take longer. If you have a family history of Crohns they might take biopsies to see if there's inflammation? Also if you have any polyps they'll snip them out and send them to the lab to be checked

Chemo was slow today but home now. My fingers are all tingly which is annoying! I've not had that before so hopefully it'll go away soon :) waving to all. Sorry I'm too tired to properly reply.

@WhatWouldLeslieKnopeDo hope you are resting up now :-)

I most certainly am. Just watching Grey's Anatomy I hope you're having a relaxing evening

Evening all. Welcome to all newbies. I have been away on holiday so not caught up with all the posts yet. It was very hot and I have a nice suntan line where my hat was . I didn't sit out in it too long and used SPF50 but still have a nice colour.
The letter I requested to confirm all my appointments has not yet arrived so I will chase this when I have chemo tomorrow. I have had a letter confirming the crucial CT scan for the end of the month. Part of me wants to see the results but a bigger part really doesn't want to. Oh well, que sera sera.........

Good luck with the chemo today chewing. Thinking of you. xx

Hi All, just got back from the hospital following my colon exam. I actually had a flexisigmoidoscopy without any sedation. By heck, it was painful I nearly broke the nurse's hand she kindly left me hold! The results are scattered patchy erythema in sigmoid and descending colon, and haemorrhoids noted. Biopsies taken. Follow up in out patients in 2 weeks time. So first thing I did was google patchy erythema! Am I right in thinking it's okish, and I have some kind of inflammatory bowel disease possible Crohn's - I know Crohn's isn't really OK but .... Anyway, I just have to wait to see the consultant for the results of the biopsies and the CT scan from yesterday.

chewing I'm glad you had a sunny holiday. I hope you enjoyed yourself :) I hope your chemo is going smoothly and good luck chasing up the other dates. Grr at them letting you down again though!

Finewine sorry it was so painful. Yes, that does sound like some sort of inflammatory bowel disease, though it may not be. Fingers crossed for the full results being reassuring and easily treatable

Lacies, I've been lurking but I haven't posted for a while. Rads really got me down, it's mentally been the toughest part of treatment and I'm exhausted. But I had my last one today, so active treatment is officially over. I feel I've been chewed up and spat out the other side since dx in November.

Hello to new peeps, sorry that you're here, but welcome.

Chewing, I'm glad you got some sunshine. Hope chemo is going ok today and everything crossed for those CT results.

Leslie, I developed the tingling towards the end of chemo, it's only just going away, I still have it when I put my hands in water. I hope you're doing alright and it disappears.

I have a referral from my GP to a wellbeing scheme where I get some personal sessions/assessments and reduced cost gym membership, and I've signed up to one of the Maggie's post treatment courses, but that doesn't start for a while. I still can't really believe that this all happened, never mind that I've finished the major part of treatment. I can carry on with herceptin after the blip around my heart function - I saw a cardiologist who was happy with everything, giving me an ACE inhibitor to add to my pharmacy!

Hope everyone has as good a weekend as possible.

@Finewineandcake glad it went okish ! My dad has crohns and while it's not idea he has a fabulous consultant who manages his condition well. Fingers crossed you get the all clear :-)

I rang my consultants secretary in the hope my colonoscopy might be moved forward. No luck sadly. She said consultants give out figures of waiting times but don't have a clue. I am on the cancellation list and hopefully I can get one of those quicker. You never know.
I have a new symptom last few days . Feel breathless well not breathless but like tight at back of throat. It's not like I can't do anything because I'm out of breath. Like a tightness .
Of course google tells me it's linked bowel cancer.
Another thing to obsess over !

Was talking with a grandma from school today she had BC last year and went back for a check up and they found an oily cyst . She has been sent an appointment for Christie's and is worried it's back :-( hope not !

WhatWouldLeslieKnopeDo Thanks, I am going to try and chill and just wait for the results. Hope you are OK too, Am I right in understanding that you are the amazing After having the worst care in hospital when I had DS, (thanks lazy midwife for actually causing a lot of my bowel problems, horrendous stitching leading to rectocele), I am blown away with how wonderful the receptionists, nurses and ancillary staff are in the "bottom" department. They so caring and sensitive, apart from the chap who has control of the ruddy camera going up ones nether regions! This is the not the only time that I have had this procedure done and every time the man in control of the tube is distant and a bit offish, when everyone else in the room is lovely and caring. The nurse whose hand I nearly broke was stroking my hair all the way through. Maybe it might be that it is such an invasive procedure that they don't want to engage too much with the patient? Anyway, all done and just going to wait to see. Am I right that you are the amazing poster who started this wonderful thread - if so, well done and thanks for making a forum for us all to share .

VLCos Thanks, hope that it's not Crohns, but hope its not that b*ard cancer and it's something else really innocuous, like the fact that I was on bleachy antibiotics after 8 stitches in my hand following an argument with the car boot! But whatever it is I know my doctor is wonderful and the hospital consultant is pretty cool too. Good luck for your colonoscopy, keep sending you flowers so going to send you a instead (hope I haven't contravened Mumsnet smily conventions)!

Nat99 Hope your colonoscopy went well too

charliebear78 really are they making you wait until August, that seems crazy? Is this another case of postcode lottery for the NHS? I am bowled over by how quickly my doctor made the referral and the care I have received so far. I am in the SE, Croydon actually and the hospital has changed its name from MayDay because everyone used to call it MayDie! Well, don't think that's why it changed but it seems sensible enough .

FlippyNeck take care and be strong

Just a footnote to say what an amazing bunch you are all, I always used Mumsnet for a quick parent tip, or a funny laugh but this thread is fantastic and so supportive - you are wonderful! Thank you x

@Finewineandcake I love the emoji ! Ha ha
I like your outlook on it all do come back and update !
Maybe the camera man is distant because he's deeply concentrating
My consultant is doing mine so first time your meet face to face second time he sees your backside charming ha !

hello x i had colonoscopy today after it being postponed for 24 hours as consultant had been double booked so been on bland diet since tuesday and had prep last night and this morning, vile stuff! It was late this afternoon and didn't come out of hospital until after 7. I was so so nervous but consultant and nurses lovely and altho sedated i was awake and watched the whole thing chatting away, must have been off my face on the madazolam! I saw him find a polyp and cut it off. he said its benign but have to send off anyway. so no explanation for change in bowel habits , prob slight ibs he said , can that start in your 40's? but nothing sinister and just feeling tired now with a very gurgly tummy! thank
u for ur support with this xxx

So pleased for you Nat99. Hope you recover quickly. xx

Flippy lovely to hear from you but sorry that you've been struggling with the rads. It does sound exhausting. I hope you have something nice planned for the weekend chewed up and spat out sounds about right. The treatments are still so brutal. Good news about the herceptin and cardiologist. I hope the wellbeing scheme helps :)

Tingliness has worn off thankfully. I had peripheral neuropathy from my previous chemo, but this was more like a light tingliness in the surface rather than inside. After extensive googling and not really finding naything, I have decided it could have been peripheral vasodilation perhaps as a side effect of the calcium drip (it came on during that, which doesn't usually have any side effects).

VLCos sorry they can't speed it up, but she's definitely right about consultants. They're often in their own little bubbles with rather unrealistic ideas of how things work the tightness may well be anxiety. I know that sounds rather dismissive but it's amazing how many physical effects it can have when you're worrying about tests and a potential cancer diagnosis. Was it a legitimate website that linked it to bowel cancer as it's not something I've seen mentioned before? Bloody cancer. Fingers crossed for your friend's cyst being harmless

Finewine I guess the one steering the camera is probably more focused on that as they don't want to cause a perforation or anything. Also it's a bit awkward poking something up someone's bum I'm sorry about your bad midwife experience, and I'm glad this recent experience has been much better. I found mine the same. Very sensitive. Though mine showed a huge tumour and lots of polyps so suddenly the atmosphere changed and it was obvious everyone was trying to remain chipper while wondering WTF they were going to say to me! I hope you get the results soon and are managing to relax antibiotics are so troublesome on the bowels, so a definite possibility. And I'm intrigued by the car boot sale fight

Nat I'm glad you got your colonoscopy and that it wasn't too unpleasant. The bowel prep is grim! But worth it for the reassurance. Completely standard to send away the polyp for testing, but I'm sure he wouldn't say it was benign unless convinced. They always err on the side of caution, understandably. IBS can start any time. It's not really an illness in itself, but a collection of symptoms that they can't properly explain. That's why they need to exclude IBD, cancer etc first. So two people with IBS might actually have totally different conditions that just haven't been identified yet. Gurgly tummy might take a few days to wear off. Interestingly some people have reported that just having the colonoscopy/bowel prep has improved their symptoms

Waving to all. I'm on the last days of my chemo pump. Feel a bit iffy, but nothing too bad :) I hope everyone has a good day

Excited to see the bunny smilies are still working

Oops, that was meant to be a bunny!

Finewine I'm posting this in a new post as I didn't want it to get lost in all my rambling. No, I did not start the thread, but I think I'm the oldest regular poster now as sadly some of the oldies died recently and others have stopped posting, so I tend to start up the new threads :)

Any oldies lurking might remember that this series of threads stemmed from a thread started by MaryAnnSingleton many years back now (2009!). She posted to see if anyone else was taking Tamoxifen and it gradually grew into a support thread. It has had various names over the years, but still the same support and companionship for all those living with cancer. MAS stopped posting a few years back now, but I was lucky enough to remain in contact with her via Facebook. Unfortunately she died earlier this year after many years living with secondary breast cancer. She has left a hole in many people's lives, but this thread is rather a wonderful legacy, I think you'll agree I did not post at the time as I did not want her to be identifiable in real life, but I have checked with a relative that it is OK to share this news here

Maybe this would be a good time to remember all those who have passed through these threads over the years. Many have been able to return to their "normal" lives, but sadly others have died. We know this is the reality of cancer, but it's still scary and upsetting I love this thread though, and all the wonderful support here

Thank you for posting this. I came to know MAS and to love her. This thread is a wonderful legacy to her support for everyone with every type of cancer.

Thank you for posting that, Leslie. So many of us were blessed with MAS in our lives - here and in real life. Hugely missed, as are others no longer here. But what an honour to have shared life with her and so many others. And so thankful for the work that MAS and others did, and do, to campaign for cancer. It's in good part because of such people that we are seeing such improvements now.
Sending love to all.

Waving to amberlight and thegreylady both of whom were here well before I joined the gang :)

I posted this Guardian article a while back. But I thought I'd post it again. Part and parcel of surviving cancer is knowing, and loving, far too many people who won’t be as lucky.

Hello everyone hope you are all having a good weekend so far !

@Nat99 so pleased for you glad it went OK. Don't they say Ibs can manifest itself anytime , any age ?! X

@WhatWouldLeslieKnopeDo could well be anxiety I have been worrying a lot. I read it on a Macmillan site. Something to do with red blood cells being low (?) And causing anemia and making you breathless.
GP says I am not anaemic but lowish ferritin.
Then another site was saying it can spread to lungs making you breathless.
I need to stop googling it's making me crazy and anxious ! I can't change anything till I have those tests ! Making myself crazy won't help.
I hope you are having a good day !

This page and the people on it are so invaluable to me thank you

I'm a longstanding lurker and like others am grateful to you Leslie for letting us know the sad news regarding MaryAnnS.
I know , only too well, the difference that this thread can make....

While I'm in public mode... please stop googling.... ask real people eg your GP , your specialist or the mumsnet massive... Googlenis not your friend !