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

Just popping in-
User- am sorry that those were the results that you got and no wonder you feel in a daze. Have you got people that can support you? Have the hospital directed you to avenues of support? Breast Cancer Care has a phone line that might be of help.
Sending much love.

Leslie- hope you had a relatively comfortable night and throat is improving.

Thinking of everyone going through treatment at the moment.

User, that's shocking for you, but triple negative is a "greedy" cancer and responds very well to chemo in a lot of cases., according to my BCN. Hair grows again, and is frankly the least of your worries. I've decided not to cold cap, so we'll loose our hair together, and at roughly the same time, so I'll be right by your side.
Chewing, although there are very few cases of your breast cancer, as it tends to be a cancer that can originate in lung, ovaries etc. there should be quite a few University hospitals that are researching and treating small cell cancers. I've got a list of them (DD's University applications) and will PM you when I get back from the hospital. It's worth a phone call at least. We both agreed that my local hospital is not where you need to be.

I'm dreading today. I haven't had good vein experiences on the last two occasions. Yesterday they tried to get the PICC in twice; and I could feel everything from the incision to the pushing the line in and it was very painful.
I've run out of brave juice. I can't face today I don't think I've been awake all night because my "good arm" is so sore and worrying about it.

I know I'll be awake for the port and I'm going to find out exactly what they do, and I might postpone the port chemo if I'm not comfortable. I've always had a problem with dental anaesthetic (I just don't go numb) and they said I have very very deep veins, but yesterday was shit and I just don't think I can do it again.

I don't know how you're going to get better on cold black toast Leslie sends and and .

Morning all, user I'm so sorry to hear your news, that's really tough to take. Let's hope the lump in your chest is just a misbehaving node, I have one under my arm. It's been scanned and biopsied and given the all clear but I can still feel it as a lump 2 1/2 years on from rads. I hope you have people around who will help out now?

Leslie, I hope you get something nicer than cold toast this morning and that you are well enough to get home soon.

Tutti and chewing, I think it's great that you met up, it must make your support system feel that much stronger. You both seem to be really having to fight the system to get what to need, it shouldn't be this way.

So much difficult stuff going on here at the moment, it's very hard to read it sometimes.

I'm fine Royal, thanks for asking. It's my gynae appt on Monday, I'll be going in holding forward a cross and a bulb of garlic to keep the surgeon away from my blood. I really don't want more surgery unless things are looking dangerous after the hysteroscopy. How are you?

user I'm sorry ,shit results .But as said ,aggressive /greedy cancers do take up the chemo well and respond . Sure that doesn't comfort you at the moment .

ettututti - you poor thing ! Loving the "run out of brave juice" ,such a good description . Can you make a huge fuss /cry -surely they can deal with you in a better way ?

love and to all suffering and those lurking in anxiety .

MrsHodge, forget the garlic and cross. Take a sacrificial goat, something more substantial for a surgeon to get their teeth into, that isn't you. As a veggie, I'm fed up of the ubiquitous goat cheese offering on restaurant menus and one less goat is no bloody loss in Tutti world Fingers crossed that you get good news at your appointment.

It was good to meet chewing MrsHodge. Frankly she's getting the short end of the stick at the moment, and I hope we can help each other through it. If I can get all these last minute issues sorted, I'm going to invite her wig shopping. It should be a laugh, as I'm feeling a fat Blondie urge coming upon me

I'm too anal to cry Ginger and only really ever do it when it relates to my daughter, husband etc.
I'm very vulnerable when I haven't got clothes on, and keep my mouth shut during the procedures, even when they're really hurting. I only vocalise when I am at the point when I have to be scraped off the ceiling.

Today I am going to ask exactly what is going to happen, tell them how bad it's been, admit how frightened I am, and not even take one bloody sock off, until I'm satisfied that I'm safe. I'm going to negotiate fully clothed. I'm pretty formidable when I'm wearing my big girl pants

ettu - I so understand where you're coming from !

Do you absolutely have to take your clothes off ? I found that if I was wearing stuff with no metal bits /zippers etc that I didn't have to get into a gown .But that was only for scans so might be completely different if you're having a "procedure" .

Yes ,yes to goats and garlic and crosses .

Yesterday I'd got a surgical bra on with front loading plastic poppers but still ended up with my wonky boobs out because of the heart monitor, and they had a surgical gown covering my arm, head and torso.
I've been getting my boobs out so much lately that it doesn't really bother me, but when I take off my lovely surgical bra, I seem to lose my Superpowers

Good plan for MrsHodge Ginger. Garlic, Cross and a Goat should cover it

user my cancer is 'greedy' and responds well to chemo. The lump had shrunk by at least 50% after just 2 sessions of chemo so hopefully yours will do likewise.
Mrsrhod hope your appointment on Monday is not too draining. I am at the garlic and cross. Perhaps a pair of big scary Halloween knickers might also help.
Tutti I do hope that everything goes as well as possible for you today. Good idea about negotiating whilst fully clothed. You are certainly formidable so im sure you will stand your ground. Wig shopping will be a laugh. I especially liked the part when they gave washing and care instructions and warned me not to wear it whilst opening the oven door

mrs hope it goes well on Monday and that you are spared surgery. I am in the wait and see stage ..so etimes I sit and wonder what the heck is going on inside of my body and is cancer making a come back.
I am still working out which has helped quite a lot in many ways and I am quite busy with DC at the moment too.
Tutti sometimes I feel like I am running drought dry too when it comes to "bravery juice", but survival instinct kicks in and there you go. I hope today is not bad for you. I was not awake for the port btw.

Rang up because I don't want to waste their time. It's not in the onc unit like yesterday, it's day surgery unit. I'll be awake with sedation. I said I would cancel in that case, but they've told me to go, and talk to the anaethetist.

Oh tutti, you must be so pissed of with all these failed attempts. Fully clothed is definitely a better option. I hate, hate when doctors leave you exposed after the procedure is over and then start talking to you, as if you're not quite human.

I'm off to Waitrose, not sure they sell goat, would a leg of lamb do?

Tutti it may be worth going and talking to them about it. They should listen and offer help on this.

oh tutti .
I've had sedation ( well apparently it,s something else like rohypnol ) for endoscopies and it means you're not aware of what's going on .Tho they do have to get the dose right .They can top it up during the procedure .Could it be something like that ? I think one is classed as still awake with that kind .

They should give you more info ,so stressful going through all this .

Tutti I have enjoyed procedures with conscious sedation far more than I probably should have done! Anaesthetists describe it as being like a gin and tonic. It also causes amnesia in lots of people, but not in me, I remember the woozy feeling clearly. I suspect I spoke a whole load of rubbish during the procedure. The drug also makes you feel a whole lot less anxious.

Hope everything went ok Tutti

Well I hit the wall today and managed to climb it [shocked].
I even had leaky eyes this morning before I went to the hospital, I got myself very worked up.

In our hospital, it's the cardio vascular surgeons that fit ports, and I spoke to him first and he explained the procedure. I was told that if I wanted to be knocked out, the earliest date on the schedule was next Thursday... so I would miss the first chemo that I fought so hard to get. I was very honest about my concerns and told him that I was really really scared, and why.

He went off, spoke to the nurses and came back asking if I would wait another two hours, and then the best consultant anaesthetist in the unit today would be available. I agreed but said I still hadn't made a decision and wouldn't gown up until I had met him.

Well. He was brilliant. He already knew about the third op fiasco.He managed to get a cannula in my hand at the first try [shocked]

I've had it done with minimal sedation; and it's a bit sore but no big deal.

Got to go back tomorrow though for wound dressing. I've been there every day this week apart from Monday [sa]d

Chemo here I come

User, sorry that you have had that set of news. I must admit to being puzzled by their statement to you, though. Stage 3 has a good long term survival rate on modern treatments. And with the two newest therapies now coming on line, the statistics for Stage 4 are meaningless, as the new stuff simply hasn't had a chance to show what it can do. The chemo is about trying to push it into a 'pCR', in other words, zapping the cancer to a point where it is no longer visible on tests or scans. That's not a cure, no. No such thing with cancer. But it means the statistics for long term survival are much better, for many types of triple negative. Of course I'm not a specialist, just a passing geek who reads the oncology papers daily. So there may be a perfectly good reason why a team would say that. Just don't know what it is right now.
Hopefully there is better news ahead x

I have been reading your posts all week and I'm so sorry so many of you are facing long waits and difficult treatments.
My update is that DH has his first oncology appointment on Tuesday (for advanced prostate cancer.) We have been told to expect wide spread into bones etc. There is no cure so we are just praying that they will try and control for a while.
I also had breast clinic today for two lumps. Iwas there most of the day (sat in exactly same place as husband and I were a couple of weeks ago :-(
Anyway one lump a cyst and all fine but the other one is 'indeterminate' and they need to get some scans from a couple of years ago from another hospital to do a comparison. And then may well need a biopsy (which I've had before) so could easily drag on for a few weeks. I am just really worried about our sons and the thought of both of us having cancer at same time so just really hoped I could get final ok today.
I realise there is nothing anyone can do but just thought writing it down might help.
The good news is that our oven broke this week and new one arrived today so at least we won't starve this weekend ! x

dahliaaa I'm sorry they couldn't give you a definite answer today. Good news about the cyst. It's almost a shame they didn't biopsy the other lump today so they could get the answers to you sooner. But I suppose it will be better to avoid an unnecessary and uncomfortable procedure if they can get what they need from the scan. Fingers crossed for your DH on Tuesday as well :)

Yay for amber! I was hoping you might see user's post. Your posts are always reassuring :)

Tutti good that you finally have a port. I did not have sedation for mine, but I rather enjoy medical procedures so I wasn't bothered. I hope that you find the port helpful

gingeroots hopefully that means you don't remember the disgusting banana numbing spray? Bleurgh

chewing you need to be careful near patio heaters too!

mrsrhod everything crossed for your appointment on Monday :) I actually don't mind cold toast, as long as it's not burnt!

royal exercise is fab. I went to a talk about lifestyle factors at a bowel cancer day earlier this year. The slides are here if anyone is interested - most of it applied to other cancers, not just bowel. Anyway, I think he said that exercise triggered over 180 anti-cancer biochemical processes. Now that I'm typing it out it seems familiar so sorry if I've shared it before

Thank you Speedy how are you getting on now?

user thinking of you. Are your children back at school tomorrow? If they're home now I hope your son liked his room and I hope that they had fun at your mum's

I'm waving to everyone

Thank you Leslie - I've just realised that you are in hospital. Hope you can get home and have some decent food really soon.

(I did ask about just having a biopsy straight away just to get it out of the way but they said best practice is to wait and see the earlier scans just in case they clarify everything and then the procedure could be avoided. Although consultant did then admit that in reality another biopsy is most likely outcome because the earlier ultrasound was done on the same area BEFORE a vacuum biopsy two years ago so almost inevitable that there will be change. She was so lovely about it all though (and aware of the situation with DH). Said it would normally take 2 weeks to see the old scans but she would try and get them a bit sooner.

Only thing that really annoyed surprised me was that they can't just access scans on the NHS systems. They could see all my notes from those appointments - just not the pics. I though everything was joined up now in the NHS but obviously not quite everything.

Tutti for bravery. Glad your port is now in. Chemo will be a doddle after all that cannula business
dahliaaa sorry that you have more waiting but hopefully they can speed things up for you. You must be so stressed about everything at the moment
Leslie those slides are very interesting. I must admit that I really need to exercise more and eat less rubbish . Do you know when you can leave hospital?

Good morning Lacies.
Well done Tutti now that is one item crossed out from your list!
leslie thanks for the link. I guess it always makes sense that being active, eating healthy and all are good for everyone. I exercise mainly because I want to get fit again and to stimulate my mind to positivity during this waiting for whatever it is that will happen time! How are you doing today?
Dahliaaa my thoughts are with you. It is tough enough dealing with one cancer and you have to cope with the two of you. They will most probably biopsy that other lump and let us hope it amounts to nothing. How old are your DS? Sorry if you already said and. Missed it!Amber it is always good to hear from you! How is life treating you these days?
Have a good day lacies.

Morning all - thought I'd check in although I have been following all week.
Really sorry to hear about the diagnosis useristired - I hope that you are coping ok.
Thinking of you all
I've had a good week - trying to enjoy it and half term with kids until round2# next Thursday. I am meeting my oncologist on Tues so I will discuss the side effects. Other SE are popping up now - hair loss (pubic -yay!!) but not so yay is a quite sore/itchy genital area it's totally bearable - not as bad as thrush or cystitis (yet) but wondering if some of my kids metanium nappy rash cream might help? The yellow stuff? Anyone have any tips?!
Sorry to lower the tone!

Morning Lacies.
Dahliaa I too am at a loss to understand why they didn't biopsy {hmm]. It's not helpful to have this hanging over your head as well as everything else going on with your DH , particularly when even getting the pictures is unlikely to be definitive. Perhaps ring the secretary on Monday.

If there's one thing I'm learning through this process, is that one has to speak up and ask for what you want... something I hadn't really anticipated through this process; and tough when you are feeling vulnerable and weaker than normal. Please do it though if you can.

Yesterday they were going to put the port on my left and I preferred having all my scars on my right (vacuous I know), but just by making that little request, it turned out to be no big deal and the surgeon was happy to do it. Having and exerting some choice and control makes it better.

And Lacies, I've moaned about my veins, but apparently I have a bit of an advantage. The anaesthetist said that finding my veins "is like deep shaft mining".
Complaining about my genetic design fault, he pointed out that really deep veins and arteries protects against trauma. So all those Lacies with really good surface veins.... I don't rate your chances if you're in a tussle with a really grumpy Wholly Mammoth.

Saunters out of the thread whistling "Look on the bright side of life" and hoping that you all have a good day with no mammoth issues.

That's good advice Tutti and I'm glad you got what you asked for yesterday.