Cancer support thread 63 for a handhold or advice and anything in between

[purpleunicorns]

Continuation of the lovely Leslie's thread here as it was nearly full

If you're worried about symptoms, waiting for test results or just need a safe place to vent then pull up a seat, we're a friendly bunch and we don't bite too much

There's quite a variety of cancers on this thread so hopefully one of us will have some advice and hopefully you don't need to stay for long.

I'll start with my story:
Diagnosed with stage 2b cervical cancer in October 2017, 25 lots of radiotherapy, 4 internal radiotherapy and 5 lots of chemo. Was told last week that it's spread and is incurable, palliative chemo starts on 16th July

Hello Pandora. That is horrific treatment of you I am so sorry its happened
I am being treated for BC. Had a lumpectomy and sentinel lymph node biopsy and currently having radiotherapy. I didn't need chemo.

Happy to answer any questions

DD has told me off today for being too shouty and mean . I didnt sleep well last night cos of the heat so not sure if it's tiredness from that or the radiotherapy or I am due on and it could be an effect of the tamoxifen . Hope its just the lack of sleep

Thank you all for the welcome. I'm feeling a bit tearful still but much better than yesterday. I don't know why I'm so shaken really, the odds are very much in my favour.

So many shitty stories I'm so sorry this is happening to you all.

Pandora that is shocking! Good luck with the scans now they're underway and the results.

Thanks Purple and ranout. I'm 6 cycles down, another 6 to go. My husband took the kids away for the treatment phase of the last one, and will again for the next one, as they both fall in the school holidays but that's his holidays used up. Tbh I don't like sending them away in case it makes it all seem like a dreadful secret, but as it's brain cancer I get very over stimulated even by chatting or the TV, so having people around is really draining. Hopefully 2019 will be better!

Hey all, hope we are doing well.

I've got my first appointment with my oncology Dr today. Any recommendations on what I should be asking her?

Chasegirl, last night was cooler so hopefully you slept better.

@Pandoraslastchance I've got my first appointment with the oncologist too this morning.

Main point I want to know is what they want to achieve with chemo, chances of that happening and what happens if it doesn't.

Then what chemo drugs, how many, how far apart. How will they administer them. How long will it take.

I'm asking about fasting either side of chemo.

Daily life what can I do exercise, diet general lifestyle. Should I be taking any supplements.

Will I be able to drive myself to appointments and back and will I be able to work.

Then I'm mentioning my reynauds as I'm not sure if that would affect me being able to try the cold cap if it's offered.

Let me know how you get on.

Pandora I think they tell you pretty much everything so make sure you take a notebook and pen, or even better take someone with you to take notes. You think you'll remember everything but once you walk out of the room half of what they say disappears. Let us know how you get on

Best wishes for the appts today. Sorry to the newcomers to find yourselves here. pandora sorry your treatment has been so shoddy. I hope you are lpoked after well going forwards.

Apologies, I seem to have been wiped out again after the chemo. So much for my eBay plans, all I have done is sleep and cry it feels over the last few days. My parents took my kids to theirs, which is great as they are getting some sort of holiday. I am home alone feeling cappy and sorry for myself. I haven't even felt able to post as so many posts have come in to keep track of/respond to. My hair seems to be falling out too despite the cold cap. Not brave enough to shave it off yet as am on my own here, but may get my friend to help 2mo if it is patchy as I woke up with a mouthful of hair this am.

My glands in my neck all feel swollen too and I have had a headache for the last few days. Is that a normal chemo reaction? My temperature is fine. Sorry, I am most def wallowing and feeling sorry for myself at the moment.

Lesley I hope your node stops playing up and you are ok for chemo 2mo.

Hello to everyone, I hope everyone has as good a day as possible

Purple is right Pandora. Notebook with your questions written in and space for their answers and other info is critical. They'll probably give you a load of other bumf too.

It's worth asking about treatment options as well. Why is this course best?

Well, today is results day... but appointment not until 5.30pm so it's feeling like a very long wait. Been very up and down with anxiety and trying to be pragmatic. I suppose knowing either way means things move!

Appointment is with the breast surgery consultant. Can anyone tell me if it will likely be just her (or an alternative from her surgeon team) or will there likely be the Breast Care nurse there as well? The Breast Care Nurse saw me last time (after biopsy) and wrote her name and number on her card for me. I suppose I'm trying to second guess if she appears again if that's going to mean it's bad news?? My wife will be with me so she's going to take notes!

Pebbles will be thinking of you today - I hope it's good news for you. If it's not, remember that thousands of women have been there before you and treatment paths are very well established and successful. I wouldn't read too much into the presence or otherwise of the nurse.

Leslie how are you doing?

Noodles sorry you're feeling so rough. Cold capping doesn't work for everyone and I would recommend a chemo buzz cut if your hair is falling out - it's actually very liberating! Don't fight the chemo side effects (I've tried it and it doesn't work). The very best thing you can do is rest.

Waving to everyone else.

Bc is hormone negative but hcr positive.

18 weeks of chemo (chemo every 3 weeks) then a second chemo drug on round 4 5 and 6.
surgery Christmas week
Then more chemo
Then radiation therapy.

But they don't know if they will do a reconstruction as I'm on the plus side but they don't have any help for me. Gp surgeries refer to a weight loss hub who said I'm too fat for them but I'm not big enough (not a candidate now)for gastric banding.

Just waiting for my zoladex to turn off my ovaries.

Pebbles-i was told that the breast care nurses try to go in with everyone to catch all the information as it's a cascade so of she is there then its not necessarily bad news.

Apparently I've got no veins so chunky monkey here now has to have a portacath fitted.

Pebbles I've always had a nurse there for all my appointments so don't worry if there is. I think they put a nurse there to be on hand with tissues as even if it is good news it's still pretty emotional. I'm keeping everything crossed for your results, let us know what they say

Noodles you wallow away as much as you need too I had swollen lumps and bumps all over after having chemo but if you're worried give the chemo unit a ring.
I agree with TQ, it really is liberating just shaving all your hair off and I bet you'll look a million times better than you think you will. I don't even bother with the million hats and scarves that I bought unless it's cold

Pandora have they said when treatment will start? The good thing about having it every 3 weeks is that you'll have quite a bit of time feeling ok before the next round. My veins are rubbish too and I keep meaning to ask for a PICC line but I'm a wimp although it'll be much better than them having to try and stick needles in 5/6 times every time I go there because they can't find a good enough vein

I know the thought of treatment is scary when you haven't had it before but it honestly won't be as bad as you're expecting

When they scare you with all the side effects keep in mind that you won't get all of them but they have to tell you just incase you do get any of them

I've got shoulder length hair. I'm so tempted to be a rebel and get my hair done like ruby rose or boo from oitnb. Hey if I don't like it then it will fall out anyways.

Purple- I'd def ask for a picc/hick/port. As a nurse myself I've had the horror of having to try repeatedly to get blood and it's awful turning your patient into a pin cushion.

Ps. I think the funniest side effect I came across was a laxative,think it was movicol, and the label said side effects may include diarrhoea. My patient almost wet herself when I told her that "well I should hope so as I've not had a shit for 8 days and this has been given to me to get it going" she said.

Thank you Pandora and Purple - I shall try not to let my stomach lurch if the nurse comes in as well then!!

I will of course report back - you've all been great - thank you!

Haha Pandora

I was reading about CBD capsules (my lovely partner bought me loads) and most of the conditions it’s supposed to benefit are also listed as side effects. Ummm...?

Go for it Pandora! It'll grow back eventually anyway and it's so nice to just get up on a morning without having to brush it
at the movicol. I have to have them daily and they're grim, I gag every single time

Pandora I've just read the bit where you said you're a nurse. You'll probably know quite a bit already so just ignore me if I start telling you stuff you already know

Thanks TQ & purple - I do intend to shave it my hair off now I am losing it, my only problem is I haven't got anything to do it with yet. My friend is coming round 2mo and her partner uses clippers, so if I can convince her to bring them over, that will be good. Plus worried I may end up tufty if I do it myself.

If I still feel this headachy & yuck 2mo I will ring the chemo ward. I think I need to book in my PICC line to be cleaned anyway. I made it out with my dog, but I mainly sat down whilst he ran around. Hoping that aging had some fresh air helps me sleep later on & I am less tearful 2mo. I think the fact there is no one else here for me to keep up appearances for means I have literally been able to have a good cry. I haven't really done that yet, so it probably needed/needs to come out.

pandora glad they have a plan in place at last. When will you start chemo? I have breast cancer too, grade 3 invasive type her+ & hormone+ and I started chemo a few weeks ago. They are doing my first 3 fortnightly to hit it hard as my lymph node is also cancerous. I have a PICC line (which took a while to get used to) but it has settled down now and is less bad. It still makes me cringe a bit though.
I hope your treatment starts ASAP for you

Purple,that's ok as my mind is rather sieve like especially today as we as a family are just getting over a horrid stomach bug.

Noodles-im literally waiting for a date for my portacath to be fitted then the chemo will start. I also daren't use the flippers myself. My partner said he would do it. Not sure how to say "Um no thanks mate,don't want to look like I've been scalped" without offending him

If I can help anyone with anything nursey then give a shout. I was an ortho nurse but I've done lots.of other bits as well.

It's a bit strange thinking I won't be back working for 18 months. I've literally just had a year off for my mental health and I was rather looking forward to returning.

@Pandoraslastchance I'm glad you are managing to get somewhere with a plan of action.
@noodles44 is the pic line awful? Any tips? I'm having my hair cut from just under my shoulders to chin length on Saturday and hoping to try the cold cap! Bet I still end up having it all off though.
Quick update from my meeting today - although the thing I need to whinge about is my in laws being so bloody pessimistic? Grrr they won't be helping again!
Well my herceptin still isn’t back but their chasing. My lump is low grade 1 and oestrogen receptive. I’ve got my consent clinic appointment this Friday then mri Tuesday and ct Thursday then the following Monday pic line fitted and then possibly chemo on the Tuesday! Going to have 2 lots of chemo to see if it reduces the tumour if it doesn’t then they may operate but if it does more chemo and then surgery.
Sorry for the essay.

Hmph my really long post from yesterday didn't send it wasn't very exciting, but it took lots of brain power!

I'll try and catch up... ish. It's been a busy couple of days in here!

tsonlyme I hope you are feeling better today. Do you know when you'll get the results?

Pandora sorry you've had such an awful experience. I hope it improves. I have a portacath. Obviously it's a bit of an extra faff to have it fitted, but it'll be so much easier in the long run. I love mine. My only advice is that if they give you a choice about placement (arm or chest) go for chest. The arm ones have a tendency to come loose so they're a bit harder to access (mine is in my arm and quite wobbly!).

I hope you enjoyed your massages chase and Miles :)

ranout good you've got a plan. Sounds a busy week ahead! Grr at unhelpful in laws

noodles sorry you've been feeling rough. I hope the crying was cathartic. My lymph nodes used to swell up all over after chemo. The first time it happened I woke up feeling so bruised and sore I thought I must've fallen out of bed or been attacked in the night it has gradually improved over time and now they barely swell up (apart from the rogue one). I used to have to prop myself up very carefully with pillows or they'd block my windpipe when I was asleep. A hot water bottle or heat pad helps with the soreness, though probably not in this weather. I've been using an ice pack on my dodgy one but I've no idea if that's advisable.

purple yuck you poor thing. Any word yet about your surgery?!

Pebble good luck. I hope the clinic is running vaguely on time :)

Waving to everyone else

I had a morphine/antisickness injection from the district nurse yesterday which seems to have finally broken the cycle. So hopefully I'll be able to have my chemo tomorrow. My rogue lymph node has shrunk quite a bit and only hurts when I touch it now :)

No still no word on surgery. I rang them in Monday but the normal surgeon is on holiday so they were supposed to be getting in touch with a different one and then getting back to me. I'm hoping it's not until at least Monday as I've got the family coming round on Sunday for our wedding anniversary

Did you ask about changing your pain relief? I know it slips your mind once your feeling better but you don't want to be in that much pain again so hopefully they can sort something out before your adhesions start giving you bother again

That's a pain. I can't imagine they'll fit it in before Monday though so hopefully you can enjoy yourself on Sunday :) even if they can't give you a date yet they really ought to have given you more information about the surgery so you can get to grips with it all!

No chance of it slipping my mind, but I had to cancel my appointment as I wasn't well enough to get there, so I need to reschedule that. I'll ask my oncologist too when I next see him.