We're not that old but we're losing our hair... Do you still need us, now we're sixty four?! - CANCER SUPPORT THREAD 64

[WhatWouldLeslieKnopeDo]

Me again. Even attempted a vaguely witty title. Hopefully not in poor taste

If you have cancer, or you're waiting for test results to see if you do, then please pull up a chair and introduce yourself!

Some of us have been here for ages and others are just going through the testing process now, so there's bound to be someone who understands what you are going through.

Whether you are a newbie or an oldie it can be helpful to post a quick recap of your diagnosis/treatment to date just so that other posters can keep track without having to search previous threads :)

If you have a relative who have cancer then there is a thread just for you in the Life limiting illness topic, with lots of others who are sadly in a similar boat and able to support each other. Other threads in that topic might also be of interest. We wish you and your loved one all the best

Below are some links that might be useful. But feel free to ask any questions at all. Nothing is off limits here.

Cancer patients are eligible for a medical exemption card for prescription charges - there is some information on the NHS Business Authority website or you should be able to get the form from your pharmacy or GP surgery

You can find information about the individual chemo drugs or regimes on the Macmillan website here

See if there is a Look Good, Feel Better workshop near you - they are especially useful for advice on disguising missing eyebrows and eyelashes

Ellie's Friends
Something to look forward to
Cancer Research UK
CRUK science blog - this is interesting and very useful for getting the facts behind any big cancer headlines
Breast cancer care
Shine cancer support (for people in their 20s, 30s or 40s with cancer)
NHS What do cancer stages and grades mean?
Macmillan staging and grading (this is in the breast cancer section but applicable to many other cancers too)
CRUK stages of cancer
CRUK cancer grading
Don't forget the kids

Yes PALS might be worth a try :)

Planned-get hold of the most senior nurse on the ward and request home leave. Ask the nurse to call your medical team and request home leave for a few hours today. Be brutually honest with them,this is affecting your mental health,you cannot sleep or eat properly,you have kids to look after and being at home will help you from a "holistic" point of view. Hell cry at the nurse.

It won't make much difference if you are physically on a ward or not in regards to your scan.

Are you on the cancellation lists?

You're a very handy poster to have around Pandora and sound like a lovely nurse :) are you signed off work at the moment?

I hope you can escape get home leave planned

Purple thanks for the advice on cream. I have some Medihoney and INTRASITE from the hospital, my symptoms should peak this week coming and hopefully abate after that. Yes thankfully treatment is so much better these days, in fact it's due to my mum having the disease early that got me into the Mammogram system young and got my own tumour detected; I couldn't feel it and neither could the surgeon. I'm very grateful to the wonderful NHS that I'm still here!

Oh and thankfully I didn't have to sleep with anybody for it Planned
Hope you manage to get home for a couple of days, it does sound like you would be better off there than lying in hospital? It does sound poor that you're still waiting.

Hello all,

I am jumping in to introduce myself while I feel brave, since the thread is still shiny and new-ish

I was diagnosed with breast cancer on 25/5/18, and today am on day 6 of my third round of chemo (3-weekly docetaxel, carboplatin, herceptin and pertuzamab). Chemo hasn’t been as bad as I feared... although I have just spent the last 48 hours in bed unable to move with nausea - which is odd because I didn’t suffer so much the first 2 cycles... I am going to have a PICC line put in for the next round tho, as my veins have not been happy with the chemo, and are bruised and cording... so I’ve been following Noodles experiences with interest!

I will have a mastectomy sometime in Dec I think, and then some kind of hormone therapy and possibly radiotherapy. My cancer is HER2+. ER+, and grade 2. Scans show no evidence of spread, although I haven’t had lymph node biopsy yet. An MRI scan a couple of weeks ago showed the tumours have shrunk so much already that they couldn’t be seen on the scan, which is massively heartening news!

There’s a lot going on on this thread right now so I am going to avoid typing an essay (I’ve been around MN for 10 years and in that time been on a couple of amazing support threads, but I seem to suffer from dual menaces of ‘typing diarrhoea’ combined with a colander-like memory which means I feel constantly guilty for missing people out of posts...

Anyway... apart from anything else I wanted to drop in and thank you all for the thread - since I was diagnosed I read all the current threads, and also back tracked quite a few threads too... it was such an amazing help just to know there were others out there going through similar, so and to all you lovelies.

I had warm toast after my lumpectomy which wasn't too stretchy and chewy but after my 2nd op I was only offered tuna sandwiches which are not easy to eat with a post op dry mouth and scratched throat. It did say tuna mayo on the packet but there was no evidence of mayo anywhere .
#claggy

Oh knickerbocker I am so sorry about your mum. My mum also had BC young (she was just 36; I am 40)... Despite it coming back 3 times she is still with us, and I grew up being so grateful for that, while also half expecting it to come for me, so like you (and the lovely blessed NHS), was kind of ready for it in a weird way.

Hello Fuzzy 👋 there's lots of ladies on here with breast cancer so there's lots of support for you if you have any questions or just want to moan about feeling rubbish from chemo

That's fantastic news with the MRI, fingers crossed you're lymph nodes are fine too

Don't worry about missing people or forgetting who has what. Unless you have an amazing memory like our Leslie we all do it

Thanks purple - yes I suspect leslie may have a secret life as an MI5 operative with her amazing skills of recall!!

I am an ortho nurse (8 years)by trade and i took a break for my mental health and i was due back in a&e/surgical wards at the start of september but my oncologist has said no to me working at all
And I'll be off for 18 months to 2 years. I think she is in for a shock as that's not happening

Aww fuzzy it's planned for me to have my mastectomy late December as well.

Right I'd better go feed my feral kids as apparently they need feeding again.

Wow Fuzzy, sorry to hear you're in the same boat but fingers crossed you have your mum's resilience - 3 lots is scary. That is my fear - once it's struck, it'll come back again somewhere... my mum was felled by secondary bone cancer at 46. And my dad lost his battle with bowel cancer at 54, so I've always expected cancer to catch up with me at some point! I've lurked on the last 3 threads and felt the time was right to leap on board. I have also found a lot of useful info on the Breast Cancer Care forum.

I am 49 and had back pain in early May and by the end of May was struggling to walk. I was diagnosed with Stage 4 non-hodgkin's lymphoma in early July (I think..) it is in my bones but has not spread anywhere. I had a spinal tap which was normal and after endless tests I am not in any high-risk categories so that is good news. It's mostly in my upper pelvis area of my back. I have been on bed rest since June.

I had my 2nd round of chemo last week (R-CHOP) and due to have six. Most of my hair has gone and I had an appointment at the hospital where I was shown lots of head coverings and how to wear a wig (which dds 17 & 15 and I found very entertaining ) and took a wig and some scarves and beanies home.

My 11 yr old son was diagnosed with lymphoma last November. Thankfully his prognosis is really good. He had a 5 hr operation to remove the parotid gland in front of his ear and lymph nodes in his neck. Very successful, no factual paralysis and no signs of the lymphoma. He has not needed chemo and is being monitored. So far so good.

Knickerbocker I have been taking tamoxifen for 10 weeks now and no side effects so far except possibly slightly worse pms symptoms. So far so good

So sorry about your loses knicker it must be scary for you too.

planned I’ve just spent 4 days in hospital and was really surprised about how cold and sweaty toast can get! When I was in hospital with my ds 3 years ago it was always hot! Maybe they save it for cancer patients?

Great thread title

I haven't posted much but have been reading. I have a lump on my left breast, I was referred by my GP last Monday and am waiting for a Breast Clinic appt. I was advised to chase by Thursday, which I did, I was told I'd hear on Friday. No contact so I rang again Friday afternoon, several times, and got a voicemail message every time saying that there was no one available to take the call, please call back later . I'll be back on the phone tomorrow morning. I'm really feeling anxious, even having an initial date would settle me.

The only time I've had warm toast in hospital probably doesn't count? I was in the relatives room on the children's ward with dd1 and made it myself

@BravoOscarOscarBravo hope you get some answers soon. The waiting is the worst bit.

Random question ladies. Have any of you had acupuncture during chemo? One of my lovely client has offered to pay for some for me, the acupuncturist is recommended and I'm seeing them before I start chemo but my oncologist says not to having it during treatment.

Hi Lacies! Joining the new thread. Great title Leslie!
Diagnosed with stage 3 colon cancer after trip to a+e in Feb this year. Surgery then four cycles of Capox chemo. Now finished chemo and waiting with everything crossed to see if they managed to nuke it all. Due a CT scan in November.
Re toast our ward had a little kitchen where you could make your own. I wasn't allowed in it though because of mrsa positive status (although this was more than compensated for by getting my own room!). Just had three tests come back negative though so clear now if I ever really had it.
Planned can't you just discharge yourself? Sounds pretty pointless you being in there.

Good morning gang

I'll put the kettle on I've been awake since just after 2am. Thank you steroids

planned I hope you'll manage to get some more news/progress/something today :)

That sounds very strict Tayto! And torture to have the toasting facilities so near and yet unavailable

ranout a few on here have had it for Tamoxifen side effects, but I think that was after active treatment had finished. There are lots of other treatments that should be safe during treatment though :)

Bravo I hope you get through on the phone today.

Movablefeast how are you finding bed rest?!

Knicker it's always nice when lurkers join :) sorry about your dad too

Welcome Fuzzy and don't worry about posting too much or not enough. Just do whatever works for you! Fantastic news about your MRI. Hopefully that takes the edge off the chemo side effects a bit.

Waving to everyone and wishing you a happy Monday

Morning Leslie! What would we do without tea?! 2am is a tough wake up call, are you able to catch up during the day? My DH is often awake from 4.30 but that's because he's a worrier... I'm super tired at the mo from the Radio (not that I have loads of energy at the best of times!)

I'm not a tea-drinker myself but everyone seems to love the stuff!

I'll probably have a little nap this afternoon, and I should be able to get back into normal sleeping patterns over the next few days as I took my last dose of steroids yesterday :) I'm lucky I'm not a worrier. That must be horrendous. I just get bored!

Are you getting a chance to rest and recuperate?

Morning lacies!

Leslie I can't sleep when I'm on steroids either: horrible things.

Hi MovableFeast! I have non-Hodgkins lymphoma too, and also an eleven-year-old son . it must have been bloody terrifying finding out that he had it too: I'm so glad he's recovering well.

Morning to everyone else, and Happy Monday.

Morning ladies. Off on holiday this morning and will try my best to forget about cancer for a few days. Hope you're all ok and good luck with those in waiting limbo!

Hope you have a lovely time Dulce and that the weathers better than it is here ☔️