Lacies, elephants, potato-based snacks... Whatever we are, this is our 57th CANCER SUPPORT THREAD

[WhatWouldLeslieKnopeDo]

Welcome everyone to another cancer support thread. This thread is open to anyone with any sort of cancer. And we have plenty of hands to hold if you're undergoing tests for cancer. We are always pleased to wave people off with an all clear, and there's plenty of room here if the news isn't what you hope for.

So don't be shy! We are a friendly bunch and there's probably someone who has been through something similar. Nothing is off limits here. Scream, shout, swear, stamp your feet...

I'm sorry that anyone needs this thread, but very glad that it's here. Cancer is shit. But it's a little bit less shit when you have people to share it with.

Our previous thread is here

Morning all
Tutti hope all goes well with your chemo today. Try not to cause too much havoc . What's your haircut like?
My chemo went ok yesterday and my chat with the head onc has somewhat reassured me. The lump has shrunk to almost nothing and I am having some scans arranged to check out the spinal area. He also thought that bisphosphonates was a good idea
Have a good day everyone.

Good luck with the chemo today tutti. You sound as ready for it as you will ever be and I hope the drugs are kind to you. Depending on how brave you are, you might want to go for the numbing cream when they access the port. It's likely to be pretty sore the first time

chewing that sounds like a more positive appt yesterday and great to hear that the chemo is working.

leslie thinking of you still and hope you are home soon.

I've hit my angry phase. It happened last time but it wasn't until I read back my diary entries that i realised just how angry I had been. I hate feeling crap thanks to all the drugs, I hate feeling alone, hate all the time going to hospital ..... so I'm resorting to my usual coping mechanism which is retreating into myself and barking occasionally at people who cross my path.

I know it will pass in the new year so will just keep plodding along till then

Thinking of everyone else and hoping the day is good to you

Best of luck today Tutti !!

chewingglad your appointment went well ( odd how they can vary so hugely ) and hope you're sleeping better .

Good luck for chemo tutti ,hope it goes smoothly .

minty I was rather prone to rage and when steriods were added it was a lethal mix ! Be careful out there .

Amber thank you for popping in .I'd take your careful research and helpful explanations over that from some professors ,not that I have access to any (smile) .It was esophageal cancer that was on my mind ,the statistics don't seem the best but I know individual cases and statistics are not the same thing .And like most cancers I think early detection is key . I've finished my treatment and assume I'll be well .

Lovely long suffering Leslie thinking of you and hoping you're out .
That must have been a shock to read about innumerable tiny tumours .That needs to be discussed with you .Where are they ? Do they know the status of any of them - guessing they'd need to test ??

Love to all .

Soft diet while on chemo for triple negative breast cancer - does anyone have experience of this ?
I have a friend who has been told in no uncertain terms to avoid all hard food ,even dense bread .I was a bit surprised ,is it common practice ?

I can't understand why notes are left lying around so the patient can read them but haven't been informed prior to this. It must be really to find out something major that you're not aware of. Tutti and Leslie have both seen their notes but I have never seen mine lying around long enough to read anything and they seem to be mostly on the pc in any case.

I have a cancer which is triple negative and haven't heard this ginger. I was just told to have a healthy diet with lots of protein.

foodforbreastcancer.com/

I find this site absolutely brilliant. It isn't mumbo jumbo and if you follow the accreditation links, you'll find it's backed by good research from reputable universities.
A soft diet sounds about as right as sticking coffee up your bum.

What can I say about my hair chewing ?
It's boy short at the back with long bits at the front. You know those Jewish men with the long dangly bits round their faces and the big black hats, well I'd look like that if I dyed it darker .... and bought a hat

Re: getting your notes. They always leave them hanging around when you have surgery, so you could book yourself in for something, preferably minor, say a toe related issue; or, here's an idea.... ask for a bloody copy !!! They're your notes. If you don't ask, you don't get.

Make sure that you book a dental appointment to day, before you start the bisphosphonates. Jaw necrosis whilst rare is a real issue, and you should get any dental work done beforehand. Did you ask if the Bisphosphonates were such a good idea, why he hadn't prescribed them ?

ginger you sound like you're really down at the moment , you may feel isolated, but we're all here and thinking about you.
My Granny had osoephageal (sp) cancer diagnosed at the age of 71. She died at 80 due to Diabetes complications.

Waves to Royal, Labradottie, Bob, everyone I may have forgotten.

Leslie particularly hoping that you are back home xxx

tutti - oh that's sweet of you ,thank you .I'm ok ,worried about leslie and finding it sad to read of how many people are having a tough time at the moment .

My gut reaction is that you're right - the notes are about you and should be available .But I kind of feel that I could read mine but some other people couldn't be trusted and wouldn't understand and it would cause a lot of trouble . patronising I know .
I was very cross when I was in hospital and 2 docs were standing at the foot of my bed discussing me .They really didn't get that if they were discussing me in my hearing they should include me .tThey said " this is a hospital you know and we are discussing you "

So weird about the soft diet ,I'm thinking it must have been meant to only apply to when friend had thrush in mouth .

ginger sorry to cause confusion. I read my post back and I feel like a prat. Those are the tumours in my lungs, so I already knew about them. I just hadn't read the full report :) no extra tumours elsewhere, thankfully! It wasn't my full notes. But at my hospital when you are an inpatient they have a folder with paper copies of recent/relevant reports and drug charts and stuff. They put that in your wheelchair when you are transferred to different departments, so I had a peek while I was waiting to have my port accessed

The soft diet sounds very bizarre. I think you're right about it being for thrush, perhaps also mouth ulcers?

minty sorry you are struggling at the moment

chewing that's good news. I hope the chemo side effects aren't too horrid

Tutti good luck today

user how are you doing?

I finally got home last night. I'm really hoping they will approve me for chemo tomorrow as it's already been four weeks since my last one

Have a lovely day everyone

Leslie glad you are home. Fingers crossed for chemo tomorrow.
I am feeling ok today so doing some chores. Also going for a walk as I went to my diet club for a weigh in last night and was rather
Tutti hair sounds interesting. I don't know if I really want to see all my notes or not yet . Onc appeared to have been pre warned about me and my questions.We did discuss dental health and I need to sort out an appointment soon. He is a nice guy to chat to, very calm and relaxed. He also always calls me 'young lady' and he liked my pink boots

Minty

Ginger, as my brain holds onto personalised data about as well as a sieve holds onto water please remind me of any details you feel able to share. I can then run it past the data and (of course) pass on good news thus found?

The soft food diet actually makes sense to me. On my first chemo I went out for a meal and had a chicken baguette which was quite crispy. I noticed that I was bleeding onto the bread. After a few mouthfuls of the same thing happening, I gave up on the bread and took the chicken out.

A few hours later my temperature started to climb and I followed the drill, went to A&E and was kept in for a few days because I was neutropenic. The source of infection was never found, but my instinct is that the bacteria came from my mouth. After that I did mainly avoid food that was likely to make my mouth bleed.

of course ,I wasn't expecting you to have an in depth knowledge of my health ! As it happens ,neither do I .I'll look up my old letters and post again...

Hello ladies. I have been lurking for awhile but the time has come to join your club as I have just been told that I have dcis.

Mixed news - I had a biopsy a couple of weeks ago but the results were that yes you have some cancerous cells but we don't know enough at this stage to say what grade or whether invasive (arghhhh). I am waiting to be booked in to have the little blighters and surrounding area removed. Once the results are back they will tell me whether I need further surgery and or radiotherapy or just leave it be. Frustrating but I can't seem to take it all in.

Feel sorry for dh who has just been blinded by it all. He was being positive and was talking up its benign results. Going to keep quite from the children until we know more. Just changed jobs 4 weeks ago so not the best timing but when is?

Hello everyone can I just pick your brains re chemo please.

The appointment yesterday confirmed that DH has prostate cancer which has spread to lymph nodes, pelvis, ribs and spine. There is no cure but they will see if anything can control it for while. They have recommended chemo but we need to go back in two weeks to discuss that.

DH has always had a low white blood cell count. Never concerned Drs and never caused him any probs. apparently just happens in some families. It is 3.6 at the moment (normal range 4-11)

Spoke to nurse this morning but she said we'll have to wait to discuss with Dr in two weeks. Just wondered if anyone knew if there is a cut off for chemo ?

Thank you

Dahliaaa, sorry to hear the news about your DH and the spread.
Hoping the teams have a good set of plans ahead.
As I understand it, there is no one set limit for cell counts; it will depend on the individual risks. And it will depend what sort of chemo. Some combinations of chemo are worse for white cell counts than others. Others can be used as a 'drip feed' that is less damaging, I think. Much to discuss, certainly.
They are seeing some good results on the newest regimes for prostate mets. with a good number of people still going strong after many years. No guarantees, but it's no longer the guaranteed-bleak thing it was. Recent big study of 162 prostate met patients showed that people with more bone sites didn't have a worse survival rate, compared with fewer bone sites, which was counter-intuitive...but good. A good few treatments now stabilise things pretty long term. Hoping they can find such a combination.

Thank you Amber really useful.
I am hoping I might get a clearer picture on my tests this week too.

Yes, keeping things crossed for that...and for everyone else who is having tests and treatments this week.

Hello Doraismissing and glad you have delurked:) it is so much to take in of course! So sorry this had to happen. Just as you took up a new job too! As you go along,things do tend to become less confusing especially once your treatment plan is set and started. It is so hard not knowing what they are planning for you, but they do try to offer the best they can according to each case. I totally understand. You not wanting to tell your DC yet. How old are they?

Hello everyone and especially amber who I haven't seen in donkeys!
I was in hospital today to get my bloods done before my drug trial starts. It wasn't the hospital where I had chemo but I found that it took my right back and made me really sad. There was a guy opposite me about my age (39) receiving treatment for a brain tumour, just so sad.
So, thinking of you all, pre-, mid- and post-treatment.

Royalmama dds are 12 and 15. I think we will have to fess up that something is going on as my op is booked for afternoon so they will see me come home from hospital in the evening. Eldest will probably guess it's something significant. Just trying to work out what to say. Prob along the lines of they have taken a lump out but we don't know the prognosis yet. If I need radio then would have told them anyway.

Hello - finding it hard to keep up with everyone.
I go in for round 2 chemo tomorrow.
I met with oncologist and BCN last night and they suggested to give me a sedative before treatment and the cold cap. I've been getting very anxious about it and dreading the pain and shock of the cold. Hope it makes the process more bearable.

You will be pleased to know the itchy bits have calmed down now

Good luck to everyone having treatment and appts this week

Hello everyone - it's been a few months since I posted on here. I haven't had a chance to look back properly and see how you all are getting on but I will. Thinking of everyone going through treatment now or with loved ones going through it.

I have finished active treatment for breast cancer now. Chemo finished at the end of July, then I had a month off which coincided very nicely with the summer holidays. Then I had four weeks of radiotherapy in September - which, actually, I quite enjoyed (maybe that's the wrong word for it, but I didn't hate it!) - I got 30 minutes on the tube each way and could read a book in peace - bliss! I also walked to and from the station every day and managed to lose 4kgs of chemo weight. Still pretty chuffed about that.

Anyway, just trying to get back to life now - school runs, work, chasing around the toddler etc. Feeling ok, but I get incredibly anxious from time to time, about nothing in particular, just a feeling that everything is going wrong. It keeps me awake at night. Could be the tamoxifen, I suppose. Anyone else felt like this?

Hi Elmindarina, nice to hear from you again and that you have finished your active treatment. I think it's very common to feel anxious during this period. The regular hospital trips have stopped and you have to gather up your old life and crack on. It is difficult and cancer is so fresh in your mind still with all the worry about whether you've seen the last of it. Sleepless nights are common here but I do wonder if tamoxifen makes it worse. Certainly my sleep, 26 months in, is worse than ever despite cancer not being at the forefront of my mind all the time any more. The anxiety does lessen, although I think about it many times every day I do go for hours without which I never thought possible two years ago.

Hello Dora, sorry you're here but I hope we can be helpful. When you do tell your girls it's a good idea to let their school know too so they can keep an eye on them. I did this with my DD and she did get upset occasionally at school and they were great with her.

Tutti, hope you got your chemo today and it wasn't too traumatic.

Leslie, you must be so happy to be home, hope you're feeling a bit better.

Hello to everyone else, especially those really struggling at the moment.