CANCER SUPPORT THREAD 66 for those with cancer or awaiting cancer test results. Rant, rave, laugh, cry, joke, scream - whatever gets you through the day.

[TwitterQueen1]

Welcome to the new thread, and the club that nobody wants to join. Our previous thread is here

Anyone with any type of cancer is welcome. And we will hold your hand if you're waiting to find out whether or not you have cancer at all.

If you have a loved one with cancer you can get support on a different thread here

For old and new posters it's very helpful if you (re)introduce yourself in your first post with a summary of your diagnosis (chemo brain is a real thing and my memory isn't what it used to be!).

I know I’m just wide awake now.

Tomorrow (sorry today) is going to be one long day at the hospital..

Aimlessly - the only thought I had re telling people if first telling those close to you and then having a think about the wider circle - there are those who will be strong enough to offer support and those who can only cope with the vaguest of news, or those you don’t want to tell as it wouldn’t be helpful to you for them to know

Xx

Aimless it really is. And I’d bloody love a Wham bar now!

It’s so rough when people look at you like you should be fine to get out of their way or give up your seat or whatever and they don’t realise that just being there, exhausted to your bones and trying to breathe is taking everything you have. I don’t want a special badge or anything (the horror!) but I do wish people would be more considerate and not make assumptions.

Oh, and yes to keep taking photos. I know how you mean namechange as I took the girls to a trampoline park on an inset day recently. I took loads of pics of them posing and we did a couple of selfies which are possibly the most unflattering ones of me EVER! Hot pink, wrinkly and no hair is not my best look, but if the girls ever look back on them, they will probably just remember a great day out at the trampolining park.

I love the dog card too btw, mine does this. He actually walks up the bed, turns around (on my head usually) then noses his way under the quilt until he nestles in (usually behind my knees!) he makes a great hot water bottle...

Hi all. Haven't posted for ages but have been lurking... went back to work which has been extremely stressful, but wanted to say how sorry I was to hear your news aimless and also that you've been having a rough time too leslie.

What I am about to whinge about seems completely ridiculous in the context of everyone else's situations and so I apologise, but DP is not being easy to talk to or supportive at all and I am feeling so isolated!

I am not in the steroid club but have to be up in 2 hours and cannot sleep! Have been so stressed about returning to work and (weirdly) about the kids getting norovirus (vomiting phobia ffs ) and am a rubbish sleeper anyway. Is so nice to be returning to some sort of normality at work, but have totally lost my confidence after being off so long. I have a lot of responsibility at work so it is upsetting me not to be at my usual standard (or even close) and now I feel like I'm starting a vicious cycle where I will become so tired I will make a mistake! Stupid brain and even more stupid cancer!

I began to feel even more sorry for myself last night when I was reading Deborah James' book F** you Cancer as it was exactly describing the emotional rollercoaster thing - all I wanted just then was a supportive partner to speak to but our marriage is a complete mess at the moment and he's not interested in speaking about cancer now I have had all the treatment.

Ok pity party over. Thanks for letting me rant!

I am often thinking of you all and wishing we could all go out for a beer to bitch about cancer - thankfully I do have a friend here who is lovely and also having treatment for cancer so understands, though her DP is a gem.

Just realised I haven't posted on the thread before as was only on the last one! (Stage 3 colon cancer, diagnosed March, emergency surgery and then chemo which finished in July/August - just in case you've forgotten who I am )

to you all x

Yes, have been told I look too well to be so ill a couple of times now.

Smoke and mirrors though - also known as lots of concealer, bronzing powder and a double helping of mascara on each eye! It’s an effort to do but I’d frighten the birds otherwise!

Agree that people don’t seem to think further than their noses and that the person walking very slowly in front of them isn’t doing it for their own amusement but is actually really struggling with shaky legs and not being able to breath properly.

You’re right MrsT about those that it not worth telling. Hope all is well re lung scan. Will keep fingers crossed for you. x

Thank you Tayto You weren’t tactless at all though, honestly. x

aimless I agree about thoughtlessness and being judgemental - I've lost count of the times in the last few months I have defended total strangers with 'you have no idea what is going on in their life'!! I'm sure I have done this many times myself and am sorry for it

addle not a pity party at all. I didn’t have a break from work so I don’t have the going back thing to contend with, but I feel utterly incompetent some days and I really miss my pre-cancer self. I haven’t officially lost any responsibilities but it definitely feels like I have, and when I try to take on extra work it’s made to seem like I’m being a martyr or pushing myself too hard, when all I want really is to show my brain still works.

Not having someone to talk to is so hard. I’m afraid I’d quite like to give your “D”P a kick up the arse. But I’m sure he has lots of good points.

Oh Addled, so sorry to hear your DP is being unsupportive. Not sure what to suggest other than just accepting that he’s useless and that your friends would probably be more helpful and to lean on them. If you have no expectations of him he can’t disappoint.

I think it will take a while to get into swing of things at work and I’m sure you colleagues realise that. You say you have a lot of responsibility- is there anyone there that could share the load with you for a week or two? x

Thanks for replying. Yes work are really good and they have been keeping my workload way under what it normally is even though some of them look exhausted from working so hard. That sort of adds to my guilt though (thanks brain!) but they couldn't make the load any lighter tbh!

Yes DH (no idea why I wrote DP!!) has his own mental health problems and isn't at all able to see how this is affecting me. He's used to having the monopoly on misery... I wish o could leave really but wouldn't manage the kids on my own as we have no family nearby. He has finally agreed to get some help with his own mental health though these things take time of course!

namechange I feel just like this. Caught between taking more on to get my brain into gear, and worrying that it is just stuck at this level for now and low level load is more sensible!

@purpleunicorns - Thank you very much for replying I really do appreciate it.
This might seem ridiculous to most but I am absolutely terrified of being diagnose with the big C. 2014 I had a scare when my smear test showed CIN 3 I had the cells removed and a biopsy was taken, luckily I was ok after that.
For the last 4 weeks I've been bleeding with dizzy spells, lower back pains, feeling full after small amounts, pains in the tops of my legs, bouts of feeling sick, tired and more recently pains in that area and lower stomach. I've been to the doctors twice, the first time he gave me mefenamic acid which hadn't done a great deal, the second time (yesterday) he gave me a higher dose of mefenamic acid with tranexamic acid to stop the bleeding, I took these last night so I'm unsure if they've had any affect yet.
I have an ultrasound and internal examination booked for tomorrow and a blood test. The only nearest appointment my GP has in 5 weeks! Which I've taken unless they have a cancellation. I have never felt more terrified in my life, I'm so frustrated because I feel like my doctor isn't taking this seriously. I'm scared and haven't slept for weeks.

This might seem ridiculous to most but I am absolutely terrified of being diagnose with the big C

How in the world could that be ridiculous my love. You are frightened and all this nonsense and messing you around with appointments will not help AT ALL

Chicken I know exactly how scared you are but you've done all you can for now by going to the doctor. Do you have real life support? Can you go and do something nice today to take your mind off things? Get your nails done? Go out for lunch with a friend? The symptoms your having could be anything, fibroids etc so as difficult as it is try not to worry too much

Sorry to see so many of you were up in the night but thank goodness you all had company!

Hello new posters - sadly it seems the numbers are increasing.

Chicken I have ovarian cancer. I was very late stage diagnosed, but my main symptoms at that time were ascites (fluid on the abdomen - 8 litres!), and breathlessness (because of fluid around my lung). As Purple says, it could be a cyst or fibroids - it's not necessarily cancer but of course you're worried.

Leslie I'm not surprised you're obsessing. Anyone would be. I was given a year last November and spent 3 months thinking 'this is quite possible the last time I'll ever do/see this...' You're not being dramatic btw, but you can be if you want to!

Aimlessly I am so sorry to hear your news. When it comes to being upset I think it's more to do with prioritising what's important right now. Being upset doesn't even begin to help in the slightest. I hope you (and Leslie) are warm, comfortable, pain free and with your loved ones.

My mum has phoned my hospice nurse to ask about something to help my anxiety. Hopefully they can just take the edge off and get me through this early days. I'm also going to increase my fentanyl patch dose as I've had some breakthrough pain overnight.

How's everyone after the late night party?! I find everything feels just a bit more manageable in the daytime.

Thank you everyone for being so kind :) I feel so terrified of everything.

I think the bladder issues are adhesions related as discomfort has now moved mostly to my hip. I'll keep an eye though, thanks. I had a negative urine dip and a course of just-in-case antibiotics for it the other day so hopefully nothing nasty.

Chicken sorry you've got this worry. Good luck for tomorrow

addle sorry your DH is being useless

Mrstraveller fingers crossed for your scan results and good luck with the long day at hospital.

Tayto excellent news

Aimlessly sorry that DP is struggling, though not surprising. Palliative care might be able to provide him with support. Mine offers counselling for relatives if needed. Also good that DS is getting support. It's all just utterly shit.

In hospital having the chemo. Think it was a bit borderline as WBC count lowest it’s ever been prior to treatment but they’ve decided to go ahead. Apparently I am not seeing a Doctor today so guess I might not get scan results. I may be denial but I’m kind of working on no news is good news

I hope it's going smoothly Mrstraveller

I've got a prescription for lorazepam so hopefully that will take the edge off things when needed.

So sorry to read you’re suffering with anxiety Leslie.

Hopefully having your Mum there is helping. Googled Lorazepam and it sounds like they’d be good at taking the edge off that horrid sudden feeling of panic that having cancer brings. x

Fell asleep at I don’t know when and woke up about 10.00am. Feel ever so tired but to be expected after busy day and not much sleep.

Hope everyone is having an ok day. Weather looks awful - luckily this cancer nonsense gets me out of doing the dog walks 😀 Poor DS3 has taken on dog walking duties. Luckily for him the dogs hate the rain so are quite happy with a quick amble down the road.

I hope you manage to get some rest today Aimlessly I've had a lorazepam and I think it has helped a little.

My GP appeared for a surprise home visit to discuss CPR so that hasn't really helped my mood! He's completing the paperwork to say I don't want to be resuscitated. He said I don't need it yet, but it's better to be prepared now. I'm trying to cling to that.

Apparently if you don't have the form then the paramedics would have to administer CPR. I assumed my parents would be able to decline on my behalf (we are all in agreement, thankfully). So it's definitely worth making sure your wishes are on paper. It's a form that goes in a plastic bottle in the fridge. Then you have a sticker to put on the back of the front door so that the paramedics know to look for it.

Sorry, not the cheeriest of topics. But I thought I'd mention it in case anyone else didn't know.

Afternoon lacies

Well what an evening and day we've all had.
@WhatWouldLeslieKnopeDo thank you for mentioning unmentionables as we all need to be prepared, just some more sooner than others unfortunately. I'm so pleased they've given you something for your anxiety.
Are you parents and sister also getting some support? Are you able to do lovely things you want to do? Shoe shopping, craft etc?
@AimlesslyPurposeful All I can say is life is actually shit. If I put myself in your shoes I think I'd not go ahead with any other treatment f it's going to make you feel rubbish. I've seen a close friend and close family friend do the same and it worked for them to do what they felt rather than more chemo. And yes to more photos. If you don't want to tell anyone your news either just don't tell them or ask someone else to?
@addlebrained I'm sorry your DH is being unsupportive. My DH has his moments but is mainly onboard. Would yours read information if you left it out for him or is it that he just can't cope? I know it must be hard for you, you need someone or lots of someone's to be able to talk to and support you.
@Fluffysunshinepants Sorry to see you hear but let's hope you have a plan soon. This really is the hardest time the waiting. I was diagnosed with breast cancer in July and now it's just something this is part of my life, not my life. If that makes sense I worked until my last chemo and then, as I'm self employed and didn't like feeling like I may let people down, I've stopped working for my main client. However, I'm lucky that I can still do a few bits for other people and I'm welcome back whenever I'm ready. I did fond keeping things normal both at work and Home really helped me my DH and DCs, although the downside to that is that everyone forgets your unwell and you can sometimes forget to rest when you need to!
Hi @noodles44 my cancer nurse showed me the front fastening bras they'd give me for after surgery and said I could buy more from them. Can your hospital supply them? It was really attractive!!
Waves to everyone else.

Thanks all - it is hard on DHs and DPs isn't it and they don't all have great coping mechanisms. Thankfully he's going to a psychologist next week so I hope it all comes out in the wash...

Ooh Leslie I love a bit of lorazepam - sounds like that might be just the thing after the discussion with the GP... just because something is sensible to discuss and document doesn't mean it's easy and fun to do, but it is better than the alternative, especially for your parents.

I am a zombie after so little sleep and a day of work! Can't remember all the name checks just now but today's work went much better than the other ones so !!

to all you lovely lacies

aimlessly and leslieknope I'm thinking of you both. It's just shit, but thanks for letting us know stuff like this.
Sorry I can't keep up to date much - I'm in the fainting/pain/morphine haze part of the chemo cycle.
Sending love to everyone.

Oh before I forget, someone was concerned about their supraclavicular lymph node being an indicator of metastatic cancer a few pages back? In case it's any reassurance at all, it isn't always. My giant supraclavicular lymph node had everyone freaking out, but it's not always as bad as Google makes out. X

Leslie guess it's best to be prepared but can't have been much fun to think about. Do they really keep the form in the fridge?!.

Addled hello! Glad work better today. Sorry to hear your DH not being helpful. Mine has mostly been great but does find it hard to just be supportive if there isn't anything he can actually practically do. My sister is far better for a general moan. Also doesn't fully appreciate that I get stressed about the scans and tests so I have to be very blunt and say directly what I am feeling (otherwise he just thinks I'm being grumpy for no reason). It's been really hard on him having to keep the house and kids going on his own while I was in hospital. I think cancer puts a massive strain on marriages. Hope the counselling helps your DH. Is the book any good?

Did Dr say why it’s kept in the fridge? I suppose it’s because everyone has a fridge and a fridge is not so big that it’d be hard to find the form.