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

Just waiting on my apt for me, not until the 30th. I'd really hoped to be seen before Xmas but I guess it's a bad time of year for it(not that anytime is good).

Mini Oh poor you, this waiting is so hard, I kept frantically busy and pretended nothing was happening. However on the 30th you should get some kind of answer. Hopefully a complete reassurance but if not a good opinion of the likely outcome of a biopsy.

rumred How are you today? Were you discharged yesterday? When I had my SNB and WLE I was told to take the full dose of paracetamol every day and not wait for pain to build up. I admit I was watching the clock for dose time those first few days. I think I took it 24/7 for a week. Also do the exercises as told, building up and continuing when it all feels better. And rest.......

My penultimate chemo today.
Twas almost cancelled due to ongoing allergic reaction. They took one look at my rash and called onc nurse in. My face is like a tomato, I look like I fell asleep in the sun with no suncream on. The rash on my hands has spread up my arms. She wanted to cancel and consult oncologist who she thought would reduce dose. Because it's Christmas there were no more appointments. I begged said I really didn't want to delay it and she went off to ring onco. He prescribed double the dose of steroids in pre-med (I don't have any oral steroids). If that doesn't help they will reduce my last dose.

So I'm not gonna sleep tonight am I?

Skap that sounds unpleasant. I hope the extra steroids work but in any case they should have you speeding around finishing up your Christmas prep! Only one more to go so even if they do have to reduce the dose you are almost there now and will have had almost all of it.

Mini So sorry you have that hanging over you over Christmas, Waiting really is the pits.

Oh Skap that doesn’t sound good at all !
I had to miss last weeks dose . I think that was number 4 . So this week will still be number 5 as they don’t add a missed session onto the end .
No real side effects apart from sudden fatigue that hits hard . I asked a complete stranger to get me a glass of water this morning as I knew I couldn’t make it to the cafe counter . I had popped out with DH and his mother but the 96 year old out lasted me ! But had to sidle off to the cafe to sit down .
Does anyone remember the campaign “We care with a chair “ ? I miss a chair !

I do hope the steroids don’t keep you awake all night Skap .
I found a lovely thread last night in chat started by Naomi
“It is one o clock in the morning, I need the night shift to mind my worries whilst I sleep...”
It bought me great comfort .
Oh one side effect is that I am very grumpy 😡 almost like having pmt .
Or so poor DH says . He is shattered as well ,poor soul .

Ah Trumpton I'm sorry about the ongoing insomnia. It grinds you down, depletes your reserves and makes the world grey. I'm a worrier and 3am is my default worry time. Chemo seems mostly to have made me sleep, though not on treatment day.
Perhaps you may need to adjust your expectations of what you can do in order to manage the fatigue? Yes to the chair! I have found myself looking around for a chair or bench and tutting about how old people are expected to manage ( while feeling 102).
I found Naomi's thread and posted.

I saw Trumpton and Skap on Naomi's thread - big sympathy to all three of you, and also to MiniCooper having to wait till nearly NYE for your appointment, and to rumred getting over the surgery and GA.
Wish I could wave a magic wand and make all your rashes, fatigue, aches and pains and worries just vanish. I wonder if Christmas coming up makes illness and cancer's many discomforts harder to tolerate? Because we're all meant to be having a good time, or want our families to be happy and carefree, not fretting about us or burdened with caring for us?

Hello all. God this is so hard for you all, I am so sad it happens but it's the luck of the draw isn't it? I found some bedtime stories on YouTube which I've played through the night. I sleep for an hour or two if I'm lucky at the moment..
Bought a marks & sparks bra yesterday, made my poor breast so much more comfortable. And hit the cocodamol. Poor advice, or rather lack of, from the hospital and bcn. But thanks to this thread and other breast cancer forums I've worked out how to best get through this stage.
I'm trying to appreciate all the little things which I'm sure is easier without rashes, life sucking fatigue and chronic insomnia. And a day at a time.
Yes Christmas definitely piles pressure on us all to be jolly and normal @Bloodybridget. When I'm asked if I'm ready for Christmas I just say no, it's been a terrible year, I'm not. And smile

Oh, rumred I feel for you.

First year ever I've not sent a Christmas card. I haven't really got an excuse, but my head is so full of....everything.....that they just dropped off the list.

Cointreau I know just what you mean. I did send cards but keep remembering people I didn't send cards to that I usually do, including my DH's nieces!! I might as well not have bothered really. Just cant seem to get rid of the fluff in my brain.

@CointreauVersial me too, I've always sent cards, just can't face writing them currently. Can't pretend things are OK. Ah well, we have a decent excuse.
I'm doing OK, do sympathise with all of you going through hell

Hello all, long time no contribution from me. Waving to all the Patience regulars and hello to recent joiners. Sorry for anyone who is newly diagnosed or worrying about tests/diagnosis which must be particularly difficult somehow at Christmas time for a number of reasons.

My update is that I’m 8 down, 15 to go on my radiotherapy. Last leg of treatment and I’m glad of that. It’s ok, no real side effects yet but it’s quite demanding of our time as it’s every day and even some Saturdays, which tends to blow a hole in the schedule. It’s also a far from comfortable position to be in, goodness knows how women of ample proportions or limited mobility manage it as I can only stand 15 minutes on a hard board with my arms behind my head. The first session went on much longer and was purgatory! Anyway, it’s alright really and nearing the end of the tunnel so I feel pretty good.

@Squiffy01 offering a hand squeeze. Chemo is bloody hard, no doubt about it. Head down and teeth gritted is sometimes the only thing for it but it really does put you through the mill. Harder still if you have a little one who needs you and doesn’t understand. Concentrate on doing what you need to now (ie resting) and you will be letting yourself get back to normal and being your usual self faster, so you can be mummy again. Meanwhile I hope you get some decent periods of feeling ok in between cycles.

Hope all suffering insomnia get some rest tonight.

Hi @Brassica, nice to see you! Radiotherapy does sound hard, I didn't know you have to stand up (I guess position depends on the area to be treated). How long do you get off for Christmas, is it just one day?
Sending very good wishes to everyone else.

It’s friiiday , dreams all night I think because bloods weren’t good enough last week .
The weirdest dream was going through security with my nurse and the officious woman saying “ well she (me) can’t go through to the treatment area as she is walking and not sick “ and me insisting on showing her all my scars and wobbly grey bits whilst shouting at her .” “ “ Sick ? sick? I will show you sick ! “
Well that told that non existent woman !
Anyway I pick up wig this morning then bloods at 10am and then a coffee with my poor DH who is getting the backlash of my frustration . Back to hospital for 1.30 for chemo . Should be home about 4.30.
Plod plod plodding on
Thinking of you all x

Trumpton sincerely hope bloods are fine today. And if anyone gives you grief, you know what to do! Also hope you are pleased with your wig.

Morning all

Busy day today, need to get up in a moment and strip the beds so Kirsty can change them.

DS got a load of stuff down from the attic yesterday so I need to sort out what is staying down, need to pick him up soon he has a doctors appointment at 9.00 regarding a referral for an ADD diagnosis.

No cards here either.

Good luck with the new wig, Trumpton.

Brassica - I'm starting radiotherapy straight after NY, but fortunately I get to lie down for mine (abdominal). Good to hear no side effects yet; hope that continues.

@Trumpton crossing fingers for your bloods today and hoping no ghostly nurse challenges you!

Brassica nice to hear an update. I wonder whether we all underestimate radiotherapy because it comes at the end of gruelling chemotherapy? It seems like for 3 weeks your time is write off. Not to mention the discomfort and fatigue.

@NaomiFromMilkShake Good luck with that appointment. Your night time thread was a great comfort the other night when I was low.

Feeling better now although nothing more can be done about rashes, it's an allergic reaction and they are going to lower my last dose. The creams and drugs are taking the sting away. My face is comically red though and I am a little self conscious of it now. I could probably conceal it a bit with make up but I daren't put anything on it. Bag on head instead of wig I think.

Good luck today @Trumpton
Just had a good cry after ringing the breast nurse office and being treated like an idiot. I wanted to clarify a few things about driving, Radiotherapy etc. I spoke to a woman who was really unpleasant. Came off the phone feeling ridiculous and vulnerable. I've read the leaflets but I wanted a quick chat, I've not been through this before, is that so unreasonable? Feel stuck and sad. I want to go home today but I'm not sure it'll be great if I'm so low and also light headed quite a bit.
Moan over.
@Skap can you wear a beanie hat? Keep your head warm

rumred the response from the breast nurse woman was just awful and inexcusable. What are they for if they cant answer questions in a supportive way. It is absolutely not unreasonable to want to chat through things. I am afraid I would be inclined to complain about that and I am not someone who rushes to complain. If you still have questions you might find Macmillan are more helpful or even someone here who has been through the same thing?

Thanks @meercat23
I'll say something when my bcn contacts me, hopefully Tuesday. It was shitty, I was quite shocked. I feel vulnerable at the moment so it really added to that. And there was just no need.
I just wanted to check I was doing the right things and when I have Radiotherapy. Or if I have it. I'll keep up with the recovery and exercises

rumred that is really horrible, I agree with meercat that it would be worth complaining - it's important that people doing that job understand how their use of words/manner/tone of voice can affect us, especially when we are feeling ill and particularly vulnerable.

Hope someone can give you a big cuddle soon. In the meantime

Thanks @Bloodybridget no cuddles available unfortunately but your words are appreciated. I feel shocking. A bit of reassurance would have gone a long way. But I need to pick myself up and crack on
Am tempted to drive but I know that's unwise

Feeling desperately sad today. A good friend was diagnosed with Pancreatic cancer about the same time I was diagnosed with colon cancer. This morning, I attended her funeral. She has 2 beautiful daughters who were so strong and spoke about their lovely mum during the service.
Her DH is lost. Totally bereft.
I’m so sad 😞

@Borntobeamum I’m so sorry about your friend. Pancreatic cancer is awful, my mother in law passed of it so quickly.

It must be so very hard to cope with losing a friend diagnosed at the same time as you as well.

@Skap glad things went ahead for you and weren’t cancelled. Hopefully the reaction calms down soon after your last one for you x

I am feeling better than I was physically am still getting exhausted but am able to function. Even left the house yesterday.
Was supposed to be having family come in jan to help with next session and so DH could get into work for a few weeks. Now sounds like they aren’t coming. It is from Australia so I know it’s a long way but it was their idea they were insisting and now not. My fault as always.

I hope everyone is doing ok. Have been thinking of you all. Still getting confused with who is who.

@rumred that's awful. In my dealings with the hospitals I have had very few difficulties but all were with none clinical staff - receptionists, office staff. They should be as care focussed as the patient facing staff. If you went home do you have supplies of easy meals in? If you can just manage to get meals and hunker down you might feel better in your own home.

@Squiffy01 how exhausting having to deal with long distance family on top of everything. I hope you start to pick up soon, enough to have some good days over Christmas with your little one.

Just wondering how is @Zorgothslugofdoom and @ellenanora5?