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

mrsrhod how was your session? I hope it was helpful

Busy couple of days here...

All ok here I think. I'm knackered before even starting radiotherapy! Not sure that bodes well for what's ahead...

Do you have a start date yet LittleGreyCat?

Good morning lacies.
Mrs, I've not been sleeping well for the past two years plus, since my diagnosis. It's been due to either the meds or anxiety, or both!
How are you today?
On the heartbreaking topic if leaving our children.
A parent from DS2' school who had breast cancer passed away and it's weighing really heavy on me inside. She had seemed to be ok and in remission. We didn't know each other, but I saw her very often and I keep seeing her smiley face . her daughter is the same age as my Ds and she had a toddler. The school are holding this year's pink bake sale in her memory..last year she had been one of the organisers
I keep thinking that could be me...
Sorry if I've depressed anybody..I just needed to mention her.

royal it’s hard not to compare when it’s someone who you have so much in common with. Her poor children.

Sorry to hear that, royal. Such hard news to cope with.

leslie I begin on 16th. Not long now... I'm strangely excited in some ways and terrified in others.

Littlegreycat radiotherapy is a breeze compared with chemo. I sincerely hope all goes well for you. I strongly recommend extra virgin coconut oil to beat any skin reaction.

Hi! Just thought I'd show my face so to speak.
Bilateral breast cancer (I do love a BOGOF offer) and brca 1 carrier.
Had lumpectomy then mastectomy (both) chemo now going through radiotherapy.
I am terrified of reccurance.

Hi headofthehive You're definitely not alone ..It's all I think about now, although I know chances are better now than ever before in keeping cancer under control.
Did you have the two surgeries simultaneously?

A lumpectomy on both sides first - which was adequate for the cancers but I subsequently found I was brca 1 so elected to have bilateral mastectomy as recommended. No reconstruction.

Hello all. The reflexology was wonderful yesterday, I've only had it once before with a friend who was training. I felt very relaxed afterwards and so lovely to have someone massage my painful feet.

Sadly the feeling didn't last as when I got home I found an appt has been booked for me to see a gynaecologist in two weeks, not an urgent hysteroscopy. Yet again the hospital does its own thing despite being asked to do something more appropriate. Fortunately I had a gp appt later in the afternoon so I went in brandishing my letter, poor man I think he is despairing as much as me. A further attempt to sort it out today has also failed with the hospital standing firm. So my two week urgent referral is Long gone and looks like it could be another month before the procedure. All the while I'm potentially on the wrong medication. Thank goodness the breast care dept are better organised.

I'll be back on the phones on Monday I guess, I wonder if my breast nurse could persuade the oncologist to request it, he might carry more weight. After all it's likely to be his medication causing the problem.

Royal I'm sorry you have that fresh reminder of the uncertainty of cancer. Poor woman and her family, scary that she was well a year ago, you can never assume. I know two mums who had daughters at school with my two girls, not direct friends but we are quite closely linked, who both have breast cancer.

I'm going to try to chill this weekend, it's been a stressful week for each member of the family and I seem to absorb everyone else's angst as well. Hope everyone manages something positive and we get some sunshine.

Hello everyone. I've come to introduce myself. I was invited by the lovely Leslie who knows me from another thread (under a slightly different username)

I have read the thread and can feel the support in every post.

My story - I have had a chest wheeze for over a year. I went to the GP in June and was referred for an X-ray. The X-ray showed a slight something on one lung and was advised to have a second X-ray after 6 weeks. Had the second one and the GP said there was nothing to worry about. It looked as though the 'slight something' was a contorted rib. I then received a letter with an appointment for a CT scan. The CT was last Monday and I was advised to see my GP in 7-10 days for the results, however, last sat I received a letter saying I had an appointment at the hospital for Wed (this week)
The hospital informed me that the CT scan had revealed a cavity in my upper right lung. The DR says that it is either TB or cancer. It is unlikely to be TB.

I am booked in for a PET CT scan on Wed and other tests on Tues (breathing/walking tests)

I go back for the results on 19th Oct.

Is it ok to hang out here for a while?

Oh dear, mrs the stress of getting a decently timed appointment! I hope you can get something earlier. I don't get how they simply shrug off and overlook the psychological and emotional factors of waiting for relief or answers.
I've been so tense following news I'll be having a biopsy, but it's all accumulating inside, like a wildly, hastily stacked store room ..at some point there will be an avalanche of sorts I seem to have forgotten how to cry and I'm not one to complain to those around me..sigh.
I could really really really do with a good foot massage! Every inch of me is tightly tensed!
Hope you manage to relax over the weekend mrs.

Welcome wombat I’m glad you found us :) we are pretty good at handholding, and most people on here have been through a similar wait for test results and diagnosis, and some are waiting for results right now. We do a pretty good job of handholding. Our only rule is no Googling! The information is out of date and there’s all sorts of weirdness out there.

royal you can let it all out here if you need to. We can handle it. Any chance of you booking a massage or anything if you think it would help?

mrsrhod I’m glad the reflexology was helpful. But sorry you’ve got all the hospital stress. Definitely get your nurse on the case. My nurse has been great at chasing up things in other departments.

Headofthehive fear of recurrence seems to be very common. Have you had any counselling or anything?

LittleGreyCat not long to go then. Hopefully your energy levels will have improved a bit by then! I can understand the strange excitement. I felt like that before starting chemo.

I hope everyone has had a reasonable day

Hello Wombat, the waiting can be so difficult, I almost (!) feel lucky that I had emergency surgery as at least I didn't have to go through the stress of wondering and waiting..

Mrs the reflexology sounds lovely, pita that you are having to chase for things that should be sorted for you.

Royal is there a Maggie's Wallace near you or at your hospital? They often have look good, feel better sessions and stress management relaxation stuff.. www.maggiescentres.org/our-centres/

I've had a lazy day today, mostly in bed watching rubbish on netflix. Ordered a chinese and now have heartburn but couldn't be bothered to cook and dd has a friend over so we ate chinese and watched Pitch Perfect :)

LittleGrey hopefully you perk up a bit before radiotherapy starts, good luck.

Has anyone heard anything from or about Chewing? Thinking of her xx

Hope everyone else is as well as can be x

cat I found running really helpful fir the tiredness.
It's now got to the point I'm ok fir most of the day just fade quicker!

what I go on a moving forward course soon.

Thank you for the welcomes.

Yes it is stressful waiting fluffy. I have resigned myself to believing that it is cancer. The Dr has already told me that I will be having surgery if the PET scan is ok? Not sure what that means.

I committed the sin of googling. I know it was foolish and I so wish I hadn't

Just a general post to say a couple of things based on recent posts.

First, hats off to anyone worried about children - even the older ones. This is one situation where I think I am glad not to have that extra worry. It's bad enough worrying about DH and I can't imagine how hard it must be to face the prospect of not being around for kids.

And hello to new joiners. Googling is definitely not a good idea but I'm pretty sure we all do it, so don't beat yourself up Wombat.

Wishing everyone a peaceful night

Hello everyone. Just to introduce myself (I wasn't invited on here, so I hope it's ok to post). I'm Nicky, stage 4 ovarian, dx Feb15, on 3rd line weekly Taxol chemo at the moment. Handling it ok most of the time, but like fluffy, I am feeling sad, guilty and wretched about leaving my 12 year old twins. They're brave and awesome and luckily have an amazing dad and a strong support network, but it's still so shit for them. Courage to you all, especially everyone waiting for results ... the waiting's often the worst part xx

Welcome nicky it’s not invitation only. All are welcome, though of course we are sorry you need to be here :)

Like TheFarSide I don’t have children. I always wanted to, and on one hand I’m very sad I’ll never have that, but of course I’m grateful that I don’t have the worry and pain. It’s unimaginable. I remember a friend talking about how she had prepared her young children for her death. I greatly admire her for that as it must’ve been so very difficult, but I’m sure it helped when she did die.

Wombat I’ve no idea about the surgery. Have you had any contact with a specialist nurse? They are usually the best port of call for any questions, clarification etc. Remember that whatever you’ve found on Google is most likely out of date and it’s not your specific case. Every cancer is different as it’s your own unique cells doing their thing. And of course it might not be cancer anyway. It’s a weird old world where you’re hoping to have TB isn’t it

Head is that the Macmillan course? I hope you find it helpful

fluffy Netflix and takeaway sounds well deserved, though heartburn not so much! I really enjoyed Pitch Perfect, apart from the gross bits there’s a new a capella X factor type programme on Sky. I’ve recorded it but not watched it yet. I don’t normally watch reality TV except Counting on but it looked like it might be fun.

Goodnight everyone!

Thanks for the reply Leslie
The Dr gave me a brochure with my treatment plan written in. He said that I will need a biopsy. It is normally a 'needle to skin biopsy' meaning a needle in to draw the cells, but as I have a cavity, it can't be that way. I will have to have 'open' biopsy but when they cut away the cavity they will slice into it and be able to tell instantly if it is malignant, and while in, they will remove more lung if necessary.
Scary shit.

That’s handy Wombat as often it’s hard to remember everything they’ve said. I suppose it’s good in a way that they’ll know straight away what’s going on. But obviously not much fun having part of your lung removed!

Hello Nicky, welcome but sorry you have to be here.
Have you talked to your dc about it? My two know that I have cancer and that I have chemo etc. I haven't talked about the fact that stage 4 means it is incurable because we just don't know how long I have, hopefully it's years...

My two are 10 and 6 so just think they are too young too deal with something that hopefully won't happen for a while. It's been tough looking at secondary schools as I 've really had to look into the pastoral support that DD will have if the worst happens during her time there :(

I know that there are charities and organisations around who can help when the time comes to talk about and deal with the issue.

In other news I've had a nice day out with ds at a local ploughing festival :) Life in the Fens... and turns out they were also raising money for cancer research. There was a magician with a toy racoon that ds insisted was real and called it a chubby hamster. Love him!

Hope everyone has had a stress free weekend x

Thank you for the welcome. fluffywhitekittens I have talked to the kids - just using advice we were given to be as honest as they were able to cope with. They know that I am not curable but that I am treatable for the time being and that we are doing what we can to keep me as well as possible for as long as possible. They oscillate between denial and acceptance, much as the rest of us! Mine moved to secondary schools last year and it was a big wrench as I knew they were very well protected in primary school. It's a less cosy environment but there's more pastoral support in 'big' school and actually more experience in dealing with parental illness/loss. Mine also found that there were more kids who had experienced similar, whereas at primary school they found my illness quite isolating as no-one really 'got it'. I hope your children are getting the support they need from school as it makes a big difference, doesn't it. Glad the ploughing festival was fun. We had a scarecrow hunt in the village. Big up the rural life! Hope everyone else had a good weekend x

Don't know what it's at the breast centre.