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

Hello Leslie. Thanks for the mention
Lovely new thread. Had radio iodine therapy which was straightforward but involved isolation in hospital and at home and was distressing and horrible. Now struggling with extreme tiredness but I am hopeful that increased thyroid medication will help
My case is classed as low risk now and they can't find anything dodgy in my blood any more Which is great but I have to be closely checked for the rest of the year and have regular checks for ever after that.
Feel a bit shell shocked now. But I don't think about cancer every day. I am very lucky that my treatment was a bit brutal but over quickly and I am now able to look forward with lots of hope. Sending all my love to you lovely ladies on here. Life won't ever be the same again but I'm ok and ploughing onwards and upwards !!

Hello everyone.. .And Leslie many, many thanks not only for lovely new thread but also for your unwavering support and optimism...you are brilliant.

So I was diagnosed with BC in February this year, two days after my 44th birthday...oh joy!!, lumpectomy (clear nodes and margins) er/pr +, her2 -, after oncotype no chemo, and starting rads on Thursday then tamoxifen...not wildly looking forward to either of them...bit better than the alternatives!!

Things I've learnt:
This thread is amazing
Google is not your friend.. .particularly at 3am in a quiet, dark bedroom...eeeeek!!
There is no right or wrong way to feel or act...go with the flow and be kind to yourself
Find a consultant you really trust
Keep an eye on the admin side of your treatment...if an appointment or results seem delayrd there's nothing wrong with chasing

But that's just my experience....we will all be different....

Hugs and all the luck in he world to all.. xxx

I would like to ask a question and it feels awkward because I may not have cancer anymore.

I was told that bowel surgery would cure my cancer. I had that surgery on the 24th and left hospital a few days later. Whilst on hospital I had my stitches checked but that was it. Nobody spoke to me about the tumour. I spoke to my nurse a few days after leaving hospital and he asked how I was doing.

I let him know that I was much more mobile than I thought I would be but that I has awful diarrhoea and stomach pains - much worse than before the surgery. I asked if I would be scanned again to check that the tumour was fully removed and he said I would be scanned again. He said that they had definitely removed cancerous material from my body but he would know more after a meeting in a few days time.- that phone call was two Fridays ago. I haven't heard back from my nurse since then- but have left him a message asking him to call me back.

He did speak to me about " when " my cancer returned and that the plan was to keep operating but then apologised and said that he meant if. He then said that the chance of the cancer returning was higher than the general population but it was unlikely.

Other than that I have not heard anything. No follow up appointment, no scan, nobody has checked my stitches since leaving hospital or asked about how I am coping. Is this how it works? Do they just release you from hospital and then contact you in a year's time for a scan?

I feel abandoned but don't want to make a fuss as lots of other people are much more ill than me.

tw1nset sorry to hear of your experience. My FIL had surgery for bowel cancer 3 years ago and whilst I don't remember the exact details post op, I do remember there being a feeling of him being 'abandoned ' by the system and not hearing much till his follow up the next year. And then that was a fiasco as he saw the surgeon before they'd done any scans for him to refer to .

I would definitely chase up your team if nothing else to check what the plan is from now on. In the meantime I hope the pain eases off and you can keep heading back towards normality

Don't feel awkward asking any question here Tw1n
I haven't had surgery but I would have thought there should be a follow up soon after. I have appointments every 3 weeks with my consultant so I would contact your nurse or consultant's secretary to chase this up. As freddie said up thread you need to keep an eye on things and not worry about chasing things.
Your lack of a follow up doesn't sound right to me.

Hello everyone! I've not been around much lately but hand been thinking of you all - thank you as always Leslie for keeping everything ticking and for thinking of me!

Brief history: 10ish seizures last May aged 31 where things were a bit touch and go led to a diagnosis of a 3cm tumour in the front left of my brain. I was 13 weeks pregnant with a 13 month old at the time (who said 13 was unlucky?!). I've since given birth to a second beautiful baby girl and am currently medicated for the symptomatic seizures, awaiting survey to remove (hopefully) the whole tumour.
Pre-op a month ago was fine but currently my thyroid function is all over the place (I suffer from post-partum thyroiditis and did last time too so it's not unexpected) and I'm currently stuck between neuro-oncology at one hospital and endocrinology at another. My endocrine appt referral was done as a non-urgent referral via GP in March and isn't until mid-July as the GP really didn't take into account the bigger picture. The endocrinologists at the hospital where I'll be having brain surgery aren't too happy with it and neither is the anaesthetist but I've already used up a year of my 3-4 year prognosis I was given if I decided against surgery. Humph - sorry! Very frustrated at the moment as I feel like I've been living in limbo for a whole year now. And to make it worse I went for a blood test on Monday at the request of my Neuro team and they couldn't access the request because of the bloody cyber attack so didn't do all the tests the hospital has requested. Called today to make another appt for this week and there are none available until next week so it feels like surgery is just moving further and further away.

Anyway enough of that. for you all.

LittleGreyCat how frustrating! Can the neuro team not intervene and get you an earlier appointment? I hope you can get the blood test sorted soon

Tw1nset no awkwardness. Have you not got a follow up appointment with the surgeon? I had mine last week, so five weeks after the surgery. I think you're meant to have one for any surgical procedure. Are they dissolvable stitches? Otherwise I guess they need to be removed they really should have told you when you were discharged. I had staples so they gave me a staple remover and told me to make an appointment with a nurse at my surgery to have them removed. The dissolvable stitches can last for ages. My final ones came out yesterday. Hopefully your nurse will get back to you tomorrow and answer your questions

debska the treatment sounds tough but I'm glad it is over and that your bloods are OK now. Fingers crossed that you can get the medication sorted asap and the tiredness improves.

Waving to everyone. I hope you all sleep well

@WhatWouldLeslieKnopeDo my stitches are dissolvable. One set are a bit red and so I might get a nurse to look at them at my local surgery. I have no follow up appointments but maybe if yours was five weeks mine will come through

@LittleGreyCatwithapinkcollar that sounds like you are being pulled between different departments -it seems mad that they can't coordinate more. I have just moved house - only a few miles . My new GP can't access the records held at the hospital about me because it is a different health authority. When I went for my first appointment with my new GP she knew nothing about my diagnosis!

@chewingawasp I seem to be having far fewer appointments than other people. I have lots of blood tests and scans but I met my surgeon twice before surgery and then he visited me on ward to say hello but that was it. Have never met a consultant or oncologist.

@mintyneb Abandoned is the word and my husband feels the same. He is quite annoyed about it all.

Leslie they said I could go there for it but it's a lot of hassle (over an hour each way with DH driving as i can't and no sensible public transport options, plus an ebf 6mo who'd need to come with me, plus needing to find childcare for a 2yo).

Sorry Leslie I forgot to do my little bit!

Diagnosed stage 2 breast cancer, HER2 negative & hormone positive, in Dec 2016. Had single mastectomy with immediate temporary reconstruction and now doing 8 cycles chemo then radiotherapy afterwards. I'm in my 50s.

Minty ACE inhibitors like ramipril are notorious for dry cough. A slightly newer class of antihypertensives called ARBs don't have this side effect and are often prescribed as an alternative.

argy thanks for that. Id been reading that a cough was a common side effect but wasn't sure what the alternative was. I had hoped to have seen a specialist by now to ask but if I don't get an appointment soon I might have to try my gp to change prescription. I hope your chemo is going well and you're not suffering too much

leslie the Brompton is where my daughter is treated for her cf so unfortunately I know it well! Its about hour and a quarter away on train and tube or anything from 30-90 mins in the car depending on traffic and finding a parking spot

Morning everyone.

Want to add my thanks to Leslie for a brand new shiny thread and for keeping us all going. Due to my ancient iPad, can only post on short threads but I do lurk all the time.

I was diagnosed with breast cancer in Oct 13. Had 4 x FEC and 12 weekly pacitaxol followed by a bilateral mastectomy without reconstruction, rads and I've now been taking tamoxifen for 3 years.

I know that not having reconstruction isn't the norm and I found it hard finding any info about this when making my decision so if anyone is in the same position, please feel free to PM me.

Although I can't post for a lot of the thread, I am sending positive vibes to everyone.

Minty my EF was only 55 to start with - I hope if your heart was in pretty good nick to start with it will recover. I don't know if I'm more frightened of heart damage or not having herceptin.

Leslie, physically rads ok so far, thanks. How are you getting on in general? It sounded like you're recovering well from surgery and it's helping? What happens next for you?

I'm finding it much tougher to deal with rads mentally. I don't know if this will make sense to anyone else, but when I was having chemo, there was a relationship with the nurses, and the actual treatment day wasn't unpleasant really. I felt looked after and got to know some of the nurses quite well. With rads, although it's not invasive at all, it's in, out, not very much human contact (although the staff are really nice) and I feel so vulnerable and exposed during it.

Also, no one had really explained what they were doing in much detail - I did ask a few questions today, so that made me feel a bit better, but I think I'm going to struggle a bit. I'm still p'd off that I ended up in the control group for the trial I joined, I would have loved for this to be done in a week rather than three!

Tw1nset they sometimes don't dissolve so the nurse might snip them out. I think that's about normal appointment-wise for surgery. I met the surgeon once before my original surgery then saw him on the ward. I had a follow up appointment after about six weeks. You are unlikely to see an oncologist if surgery is the only planned treatment. I didn't meet mine until after surgery, when they decided I needed chemo

LittleGreyCat ah that's difficult then. I hope they can get you an earlier appointment at the nearer hospital somehow.

Argy how are you? :)

wine lovely to see you! How are you getting on?

Flippy that makes sense. I quite enjoy chemo days tbh. Especially before the op, when often it was the only time I left the house! The nurses are lovely and it's nice to chat with the other patients. Radiotherapy obviously doesn't have that as you're in there on your own and only a quick appointment too. It must be a bit of a drag having to go in every day as well.

I'm good thank you. The surgery has made such a difference. I have been going out most days. Previously I was almost housebound many cycles. And I just generally feel much better :)

It's raining lots here so I hope you are all warm and dry

Oh meant to say next is just back to the same chemo regime for now :) I'll have a scan soon ish to see how it's working

So I have good news. I don't fully understand how they know this but I am now officially cancer free.

My biopsies have been held by Dorchester but are on their way to Southampton where they will be seen by a neuroendocrine team. They expect to scan me in a few months - the nurse said that everything is too inflamed right now for a scan to be useful. He said to expect an appointment with an oncologist to discuss how they will monitor me from now on. The nurse is expecting scans every six months for the initial period.

They are worried about weight loss ( I am not!) and so they are going to support me to find a diet that my body will tolerate. At the moment everything is ejected very quickly, I am going into a low residue diet which seems very bland,

Excellent news Tw1nset

Evening all

I joined at the end of the last thread. I'm still in limbo waiting for my breast clinic appointment to come round. I've been referred after discovering a large dent in my breast. I'm still finding the waiting incredibly difficult. I though work would be a distraction but I've actually been pretty awful there too I went back to the doctor this morning and have been prescribed something for my anxiety but it isn't really making much difference so far. Any tips on coping with the wait?

Fabulous news Tw1nset - lovely to read something positive!

Hi gold, my appt is tomorrow morning. I have been ok for most of the 10 days but this morning the anxiety was through the roof. I've suffered low level anxiety for a few years, but nothing like what happened this morning so I feel for you.
I'm crossing everything that this tender lump isn't bc. I remembered yesterday that I had a chest x-ray about a year ago for something else. I keep telling myself that if there was something there it would have shown up then... I don't know just grasping at straws I guess.

Just to add. I've been listing to meditation music at night to help me sleep (you tube. Search. 8 hours deep sleep). Doing lots of breathing, colouring, epsom bath salts and extra b vits

Hi everyone.. .
Gold and wishing...im so sorry as waiting is an absolute bitch frankly and we all have different ways of coping...mine quite probably aren't sensible.. .beta blockers (from my lovely gp), nytol, working very hard and cuddling my children.
But I interviewed an amazing woman recently and she had been thru hell (husband and daughter died and she lost leg in horrendous accidrnt) and she far more sensibly coped by putting everything in bite sized chunks...for example just getting thru the next half an hour etc....
The other thing I did was read old familiar books and watch films I knew inside out...mostly comedies...thst I didn't need to concentrate on.
The other thing is remember what Amber says...statiaticalky 9 out of 10 lumps are nothing to worry about.
And lastly and controversially possibly.. .Yes, cancer is terrible...but, but, but...it IS doable...you will get thru it...i hope you have lots of real life support and if not we are all here...ready to hold hands as and when we are needed. And I can't speak for everyone but I would be v happy to chat on the phone if you want to....and can talk you thru things...just pm me...you aren't alone...xxx

Only my husband knows at the moment. I have a few close friends who have had false alarms. It's the scenarios going through my head... Like how would i tell my 76 year old widowed mother who lives by herself. My husband is far older than me and isn't in good health, and I have a 13 year old DD who would care for her.
This is the problem I think dealing with all the other crap that comes along with it.

@GoldInTheAirOfSummer I am not going to pretend that I was amazing at coping whilst waiting for results but I got better. I have not had to face the long term challenges that others had to. This worked for me:

1. I emailed/ messaged friends I knew would be supportive and told them that I was scared and could I rant to them when needed or make inappropriate jokes? They were a massive help.

2. I worked on getting myself better physically and mentally. Lots of days out, walks in the woods, meeting friends I had neglected. I thought if this is it - is this what I want from life? What changes can I make? This proved to be a great distraction. It sounds corny and I am cringing but cancer has healed my life. I will be healthier, my marriage is stronger and I have a much better relationship with my daughter.

3. once I had a diagnosis reading books helped. "The cancer whisperer" helped me . I thought at first the idea of listening to and learning from my cancer seemed mad - but I have learned so much about myself snd have spent a lot of time thinking and making changes. I also read "radical remission" and "breath without air". All of which helped me give my life an overhaul.

4. I started a blog , it also meant that I spoke about cancer there and not elsewhere. It also allowed me to indulge my worries and know that people would read if they wanted to but they didn't need to. I founded that be very cathartic.

It is all so personal and I hope I don't come across as know it all. This has all been a whirlwind and I have been lucky.

In terms of telling people I couldn't handle people being upset when I told them. I was quite blunt and said that I was struggling to manage my own feelings and I couldn't manage theirs as well.

Aside from my husband and daughter I told everybody else in writing. This enabled me to prepare what I wanted to say - They could also deal with their own feelings on their own before speaking to me in person.

My colleagues were told in a meeting using a message I drafted. I made it very clear that I couldn't handle and didn't want pity hugs or sympathy and that I was mostly coping through humour.

@Tw1nsetAndPearls fabulous news :-)