Cancer support thread #73 - come in, we're here for you.

[Trumpton]

Welcome to the new support thread for anyone who has cancer, at whatever stage of treatment, is worried about symptoms, or is waiting for tests or results.

This is the place to worry, moan, ask questions, share experiences and good and bad news, and celebrate milestones!

If you've got a loved one with cancer then your best place for support is probably on the Life-Limiting Illness board.

Our previous thread is HERE

Current members, please do introduce yourselves smile

skap thanks for asking - I'm over my throat infection now, just got one more day of antibiotics to finish off, then it all starts again, with bloods on Thursday, 1st dose of pertuzamab (perjita) on Friday, then 1st dose of docetaxel and herceptin on Saturday. I am just so exhausted at the moment!

Did have some good news - got my scan results yesterday, and the tumour is less than half its original size, so the chemo I've had so far has been effective.

Went wig shopping today and ordered one - my hair is coming out by the handful now, which is upsetting. Trying to decide whether to go to the hairdresser and get it cut short, or let my husband shave it off. Feel a bit sick at both options, to be honest, but I think I'll have to decide soon 🙁

Hiya @Clogsaregreat I've not had results of surgery yet but just wanted to send you a quick message. It's lonely here too.
Do you go to any meetings? How are your friends and family coping, are they looking after you?
Facing your mortality is so frightening, I'm sorry you're having to do that. Obviously we all have to but most of us try to ignore it
I'm starting counselling next week because it's the emotional /mental side I'm struggling with most at the moment

Hi thank you. My oncologist is v much treat, treat which keeps me going. Im on n on international site and heartened that many many women are on year 5 and in the majority the US are v on the same regimes as us bur Omg most have to work during all treatment to have insurance.
My family are great but i dont want much to do with friends at the moment. Ive lost all sense of routine
Im having radio at the moment and start THP next week. Im not really depressed. Thank you for replying xx

I completely get the loss of routine thing. It's surprisingly hard to deal with
What's stopping you leaning on friends?
It's such a shit thing to deal with, do you think counselling would help?

Hi @clogsaregreat my husband has incurable cancer (treatable at the moment.) I'm so sorry you are facing a similar situation.

That's great news about the shrinkage Zorgothslugofdoom! I assume you have an op at some point? Sorry about the hair - personally I wouldn't let DH near mine.

@CaptainNancy1 - I am in the same boat as you, just a little ahead. Mine was endometrial cancer, and I had a hysterectomy back in November; I have five weeks of external rads followed by two brachytherapy sessions. Four sessions down so far, and no side effects as yet, but it's a little early. I've been warned about various things ("sunburnt" perineum sounds like nobody's idea of fun); but I had a consultation today to see how I was getting on, and the radiographer said I really shouldn't expect anything too bad as it's very targetted. Regarding the brachy, I don't have all the details yet. Hope it all goes well for you - keep chatting to us!

Those pesky GP letters....nothing hugely technical/incomprehensible on mine, but I did find out via that method that my tumour showed "evidence of lymphovascular invasion" (i.e. worse than predicted, and hadn't been told face-to-face at that point ).

More blasted bladder tomfoolery at today's appointment. Having shown up on Friday with a bladder the size of a beachball, I followed exactly the same routine today, and it was completely empty. Had to sit in the waiting room in my dressing gown swigging water for another 45 minutes, having regular ultrasounds, while they waited patiently for it to fill. Christ knows where all the liquid went. They are all lovely about it, but I can't help feeling like a time-waster.

Cointreau I'll be having an operation after the chemo (3 more rounds to go) - probably a lumpectomy, then radiotherapy; I'll also be continuing with the herceptin for a year.

I agree with others that the waiting to find out if there's a problem, and if there is, how bad it is, is really hard. I was going out of my mind - I saw my GP and got some anti-anxiety medication. It really helped!

Once you have a treatment plan in place and start, it makes it easier to cope with. You just have to hang in the best way you can - I've found my family and friends a great support.

Oh blimey @CointreauVersial I do feel for you re bladder issues!
Zorgoth glad to hear chemo has been effective but sympathy re hair. It is really horrible seeing it falling out.

@Clogsaregreat nothing useful I can say, that's just shit. I hope you have a few people you can talk to honestly about prognosis - as well as us here.
On my phone and if I scroll back further I will lose this so will just wave at everyone else for now.

Hi @stinkyeddie hope the oddness is subsiding and you are getting some answers.
Thanks for the support everyone
@bloodybridget I'm getting the feeling I am going to need a medical degree with the letters.
Hi @Clogsaregreat sorry for what you're going through. I really hope your IRL support network is good xx

hippie thank you for asking... how are you? X
My left eye vision is just not right. I passed the eye test but I wassteuggling to read last night :(
Not heard anything. I jump each time my phone rings:(
I'm googling again. I know. I know. I'm being an arsehole. Sigh.
I'm trying to just ctack on - busy day again today - but it's not really helping.
Hope everyone else is feeling better after utis, strep throats etc?

@Nonotmenori I know exactly what you are going through. I had a breast lump a few years ago and ended up having surgery to remove it. The waiting and not knowing is awful. Your life's in limbo. Can you phone the hospital and ask for an update? Regarding the letters copied in to the GP I've sat here with a notepad and pen googling all the medical terminology trying to make sense of it.
@CointreauVersial Hope your radiotherapy goes smoothly. The oncologist glossed over the side effects but I now know having radiotherapy to your pelvis can affect your bladder and bowels sometimes short term sometimes long term.

So.
I phoned the eye clinic as my left eye sight is getting worse and the dr hasn't even looked at my scan yet!!!
Can't decide if this is good, or not! Surely if it was something potentially life threatening they would have flagged it up??
(Don't know how it works re: suspected cancer dx)
I have an important meeting this afternoon and I just want to sit at home under a blanket pathetic

Stinkyeddie not pathetic at all but completely reasonable and understandable. I can understand why the people who do the scans are not allowed to give out information particularly when interpreting results may not be straight forward but I think the very least they could do is give you very clear information about how and when you will receive the answers you need. Could the disturbance to your vision still be to do with the drops? I have no idea how long the effects last for.

Hi meercat
No, my LE has been gettung worse since 18th December so I made the appt at opticians on 28th.
My px had changed so I have new specs but they aren't really helping.
I don't know what the time scale is regarding scan results.

Radiotherapy planning CT today at a large city teaching hospital. Wow, talk about two tier NHS. I wish I could have had all my treatment there, state of the art stuff in a lovely building with lots of staff (and free cold drinks- on my chemo ward we didn't get so much as a glass of water).
I had been practising my breath holding technique and that was the easy bit. It was only 20 elephants instead of the 25 I have practised.

It was the 45 minutes of my arms on a metal bar that was tricky. I lost all sensation in my left arm half way through.
So I now have three black dots tattooed on my breast to complement the blue nipple.

So mri and results on Friday re Olive (small tumour at back of head) and epilepsy clinic in 2 weeks time. There goes my carbon footprint - no chance of me stopping flying! Dental appointments this and next month to try and repair 2 teeth - it's amazing how much damage 60 radiotherapy sessions can do, apparently 😬 (me hopefully in 2 months!) Opticians appt made for Feb to see if anything glasses wise can help with vision in my right eye (tumour had a right go at the optic nerve apparently). And somewhere in all of that, I need to arrange a return to work interview. Sick pay runs out in 2 weeks 😢

Meanwhile, my first radiotherapy mask is currently being made to look like me with wool and my radiosurgery mask makes a stunning light shade. Good job I live alone 😂

Blue nipple!!??

I had a dye injected into my boob in September to see where the lymph nodes were . I still have a fetching blue tinge around the nipple .

Yes blue dye injected in August to detect lymph node involvement. I'm told it goes away eventually but so far it's just faded a bit. It's really not a pretty sight

Wow LittleMissnotLittleMrs are you expecting to go back to work during this treatment?

I had the blue dye injected on March 17th and although it has faded it is still very much there.

Mine will be fully gone by March 17th ....I have my date for mastectomy surgery !

5 more sessions of chemo takes me to 7th February . Then 5 weeks until surgery .

So glad things are moving swiftly . And the timing just about allows DH and me to get to another Interceltic festival !

Interceltic festival?
Sounds interesting!...
Glad you have your date x

Skap I've already had the treatment - after first 6 weeks of radiotherapy (Feb to Apr), I returned to work on a phased return start of June. Meeting done to make arrangements. Same night, emergency surgery for burst appendix so return was delayed. All set to return in Sept (teacher) but planned radiosurgery was cancelled and another 6 weeks of radiotherapy was booked (Aug to Oct). Hopefully all will be well and I will return to work slowly over the next 2 months. I can't wait! But I am KNACKERED and hardly sleeping. Not great infront of a class of students!

All of those on or had chemo were you told if it was working or not?
I’m on my second round, should be having four and I desperately want to know if anything is happening but am too scared to ask. Does it work straight away if all is going to plan??

@LittleMissnotLittleMrs sorry if I misunderstood. I thought because of the mask that you were having more treatment.

@Squiffy01 I haven't been told if chemo is working but I had surgery first so in theory the tumour was gone and the chemo was to mop up invisible chem cells . It's not very reassuring.
I think those who have chemo before surgery tend to get a scan to measure response, though probably not until after a number of doses. I think it's fair to ask when you will have a scan? Never be afraid to ask and keep asking if they don't get back to you.