New year, new thread - cancer support thread 68 - join us if you have cancer, or are waiting for cancer-related tests

[WhatWouldLeslieKnopeDo]

Hello everyone,

Welcome to the new thread. Our previous one is here.

Anyone with any cancer is welcome, or anyone waiting for tests because they might have cancer. If you're new, just jump in wherever. Don't feel you need to catch up with previous posts. We talk a lot! Ask any questions you need to. Someone will hopefully have an answer. And feel free to post photos of cute pets too.

Whether you're new or not, it's helpful to post a little introduction on the new thread to save people trying to remember everyone's different diagnosis and treatment.

Fuzzy. Thanks for the info on Herceptin injections. I wasn’t given a choice of DN or chemo ward; I was just given an appointment for the ward. I don’t mind and like you say better than waiting in all day for a DN. I’m wondering whether they will need to monitor me as I’ve already had 4 lots of Herceptin through a drip with chemo.

Mrs yes I had had Herceptin with each of my 6 rounds of chemo, IV, but there is still a short obs period - unless your unit have a different policy (mine just let me go today after a good chinwag for a few minutes... it was my 10th Herceptin in total tho so I guess they aren’t too worried about reactions now!)

Standby Are you still having treatment? The worry never goes away does it? I can't help much as I have ovarian cancer, not breast.

Purple are you coping OK in hospital? Is there anything we can send you? A very lovely MNer sent me some cashews for Christmas because when I was in hospital being diagnosed I was desperate for something with taste and Roquefort and cashews were my treat of choice. I heard someone else requested Quavers, again because they could taste them. So do let us know if there's anything you fancy.

Leslie Glad you're feeling loved and well cared for at home.

Yes purple I second the suggestion of making demands for things we would love to make your incarceration hospital stay better if there is some way we can!

Leslie you really are so kind and thoughtful and I have no idea how you remember who to reply to when there are more than 2 or 3 people you are mentioning! I am glad you are comfortable but am wondering whether we can help in any way with film suggestions? What's your favourite genre - maybe one of us is an expert and can think of some good ones you haven't seen yet?! Do you watch tv series, like Gilmore Girls or the Marvellous Mrs Maisel?

See now I've forgotten who else I was going to mention - am utterly exhausted! This going back to work with remnants of chemo brain isn't all it's cracked up to be

I was pelvic radiotherapy too like Namechange so it might be different you but I had no side effects apart from being tired after driving to the hospital every day.
I worked through my treatment too.

TQ I'm still in hospital, I'm getting nephrostomy tubes put in tomorrow as my kidneys are hardly working anymore. I went to see my oncologist yesterday and he's going to try and get me on a trial. If not I have 4-6 months left

Oh purple I don't know what to say really other than I am so so sorry to read your post and that at least your Oncologist is trying to get you onto a trial (an earlier post suggested he may not) let's hope he finds a suitable one for you xx

Hugs to Leslie too as if I was close by I would be giving you a big (& gentle) squeeze as you are fabulous xx

I was active on this thread 5 years ago when diagnosed with BC. A barrel load of treatment, 2x surgery, radio, chemo. At the moment all ok but still live under the shadow.

I just popped on to wish you all well and salute the infinitely awesome leslie She is a kind, intelligent, wise and totes amazeballs person.

Purple that's hard news to hear .I'm so sorry to read it .

I guess you process it in very nasty overwhelming waves .

How are you feeling physically ? Are you getting any sleep ?

xx

mrsT good luck with the herceptin injection today. I have had them done twice. Neither have hurt when being injected, the 1st one stung a bit at one point, so the pace of the injection was slowed down.

The site they inject at made a difference to mine. The first one was more on top of my thigh and a few hours later I felt like I had been given a dead leg, the pain was a few inches from the injection site. It lasted until the following day and was excruciating. The 2nd one was done at the side of my thigh and I didn't even feel it later on. The chemo nurse said it is better usually to do the injection on the side of the thigh as there is more fat which helps. I had a slight dicky tum a couple of days later each time, but nothing as bad as my chemo dire rear...
I hope that info helps x

Oh Purple I am so sad to hear this. Such brutal news. I can't think of anything to say or do to make you feel better. You are in my thoughts x

Standby I forgot to welcome you! I don't think we've seen you on here before have we?

Hi its previously known as Swayingsilverbirch. I joined this lovely group early in 2018, I have an unnamed rare cancer in my pelvis, stage 3/4. Two boys aged 11 and 13. Since diagnosis I've had 6 chemos followed by a month of chemoradiotherapy. Thankfully all my symptoms have gone. I'm waiting for a Pet exam to see the results.
I have been following you all but felt I couldn't post as after an initial period of reading and researching everything I could I then needed a break and to ignore everything. I've had a great 3 months of normality and am just back from an amazing trip to Finland where I even managed to ski. 6 months ago I couldn't walk or sit down, do I am thrilled with myself.
I know the mass hasn't gone completely, I can feel it. Am facing the scan with trepidation.
Hugs to you all. I'm going to catch up on the three now.

purple

So sorry you’ve received this news. I hope a trial can be sorted for you.

Xx

Noodles

Thanks for the info. I’ll keep an eye out for where they stick the needle in!

Hello again Puffle/Swaying glad you've had a good break away from this whole cancer business. And skiing is a fabulous achievement. Scanxiety is just awful. Do you have a date yet?

TQ I've posted quite a bit (for me) on Lacies since being diagnosed in the beginning of 2017. I tried to search by my name yesterday though, and all that came up was posts on two threads, embarrassingly one of them was a sarcastic answer on the Sex topic

I look after my granddaughter during the day and struggle to find the time to post. If I look at a screen for 30 seconds she'll swinging from the top of the bookcase, or inserting a small chubby finger into a cat's bum.

It takes me ages to edit my posts for unintentional offence (foot in mouth syndrome), and inappropriate sarcasm. I written so many and deleted them without posting. I suspect there's quite a few lurk/post/deleters out there.

As for treatment, I'm on monthly Zoladex + Anastrazole. Had radio, no chemo. Lump on collarbone that's being investigated. Constant headache/migraine which I'm waiting for a neurology appointment for. Lymphodema in right arm. I would love to be able to forget for a little while, but symptoms keep tapping me on the shoulder and shouting "YOOHOO!"...much like the shopkeeper in the film Frozen. Also aware that I have it easier than a lot of people.

for Purple I hope your kidney tubes do their job, and you're out soon to see the Spring that's started creeping in already.

Love to everyone else.

Just found out the most random bit of information! Did you know that all the tumours- benign and malignant - removed by surgery are stored in the uk for 25 years???? So there are rooms in hospitals and storage areas full of jars or cancer. The thought is quite disturbing. I can see why they do it but bloody hell. Can you imagine working there?

Bizarre you’ve mentioned this Dulced. I’ve just posted something on here in relation to hereditary cancers. I was advised many years ago by our GP, that in order to test for hereditary forms in the family, our mum’s tumours would need to be tested, and as she died over 20 years ago, that was impossible. So perhaps it’s not that impossible after all?!

Very tired today but sending lots and lots of love to purple I'm so sorry for your news.

Love to everyone else too.

It could be that they didn't use to keep it 20 years ago. I've no idea when they started their little collection. I find it so bizarre! But useful stuff to have I suppose.

Had Herceptin injection and it went fine. I also got to the bottom of my constantly dripping nose. Nurse said it's quite a common side effect of Herceptin so that explains that. I am spending a fortune on boxes of tissues and they are placed all round the house. I may start going back to handkerchiefs .

In a strange way I kind of felt like I should really be having chemo with the other patients. It's strange that I developed a bit of a sense of belonging to the place. I will still be going there every 3 weeks until about October I think. Still 13 cycles of Herceptin left to go.

xx

Good to have answer about your nose Mrstraveller :) I missed going for chemo when I stopped. It quickly becomes part of your life.

I've asked TQ to post here when I die so that you will all know.

I have mostly slept today. It seems a bit unfair that you get so sleepy when you're dying! We had some visitors this afternoon though, which was nice :)

Leslie I wish I knew the right thing to say. This is so bloody unfair. I know you are being practical and accepting (and am in awe of that) and I am trying to follow your lead, but I’m just so cross on your behalf. Which is monumentally unhelpful I know.

And yes to missing chemo. I find the routine so comforting, plus my nurses are all lovely.

Sending massive hugs to everyone. Especially Leslie and purple. Fucking cancer is such a shit.

I got scan results today. The chemo has worked a bit, but not as well as they'd like. So I have to get a different, stronger chemo as an inpatient for six weeks. Either that, or carry on with the chemo I'm on that probably won't work and then I'll need a stem cell transplant. So I'm gonna go with the advice and take the stronger chemo.
I've got another week to try and recover from my last chemo before going in.

Not great news, but as we know from some of the situations that lovely lacies here are dealing with, it could be much worse.

Hugs for Tahiti. Is that 6 weeks continuously as an inpatient or do you get trips home for good behaviour?