Roll up, roll up and join the lacies for CANCER SUPPORT THREAD 59 - anyone with cancer is welcome (and those awaiting test results)

[WhatWouldLeslieKnopeDo]

Hello everyone,

This is the cancer support thread, which has been running for many years under different names. Most posters have breast cancer, but various other cancers are represented too! Whatever cancer you have, feel free to join us. We also welcome those who are awaiting test results to find out whether or not they have cancer. We know how difficult the waiting can be and we are happy to hold your hand. Hopefully you won't need to join us permanently

Feel free to ask any questions. There will usually be someone who knows the answer or will know where you can find it.

Whatever you do, stay away from Google!

You can post anything you like here. We don't mind swearing or complaining or angry ranting. We aren't brave or inspirational and you don't need to be either. Nobody signed up for this, but we support each other as best we can

The previous thread is here

Yes they know me Twitter I get special celebrity treatment but they just don’t seem to understand stage IV cancer. I wonder if it’s sort of denial! I never usually say anything as I don’t know what to say and I’ve left it a bit late now! It’s normally water off a duck’s back, but today I felt quite grumpy.

Sorry for that outburst I hope everyone is having a good evening

Leslie, that's so rubbish and not at all what you need when having to suck up chemo at the same time!
Like others have said asking people if they want children/more than one etc is not the most sensible/sensitive thing anyway let alone when you are sitting in a blooming chemo chair..
I had a new district nurse come and flush my line today so she didn't know the whole story and when I explained she said it must be extra hard with having children (dd was off school today with a cough) and I don't know why but it just hit me a bit today more than it would normally, part of me understands that she was being -sort of- empathetic but the other part was like, no shit sherlock of course it's sodding shit knowing that you are going to die and leave your children motherless...
MInd you not as bad as the friend/acquaintance who is totally oblivious to how insensitive she actually was.. Because I had full PIP we thought we would try and pay off the mortgage with the life insurance but to be "terminally ill" in their terms is to have 12 months left :( However because the chemo is working so well, at the moment, oncologist said he couldn't sign it. Which is good news for me so far but not as great for finances! Her reply " Well at least you have a year"....
she also asked if I had a bucket list.
It's a good job I'm not a sensitive flower and have a sense of humour about all this crap :)
Hope everyone else is OK and chemo effects wear off quickly Leslie, rest up if you can xx

people can be so insensitive! Sorry I’m running on empty now so can’t really string any useful sentences together.

[flowers} and v gentle hugs Leslie, I'm finding this round exhausting but I can't sleep at night, hence on Mumsnet now and should really be in bed xxx

Leslie so sorry you had a crap day. (I'm a Thursday chemo girl too). I remember the 'Palliative' designation on my care plan hitting me like a brick. I knew I wasn't fixable, but Palliative to me sounded like 'you have a couple of weeks and we're going to manage your pain'. I couldn't look at it. I just don't think they have developed a technical term to keep pace with their medical advances, that fits between neo-adjuvant and palliative, which could mean 'treatable but not curable - we're managing this like a chronic disease'. At least that's what I cheered myself up with. And I'm really sorry about yours and fluffy's nurses' lack of tact. Most of mine are awesome, but sometimes I think people just speak without thinking for want of conversation. I keep a little list of the terrible stuff for party anecdotes - takes the sting out a bit when you imagine shocking people with the crap you hear! God I feel bad for the needle-phobics; such an addition to the ordeal. I have a port which I love and found injecting myself with the gcsf less grim than being injected, once I got over the psychological weirdness of it all! Pleased that wombat and flippy have good test results and hope mrsrhod gets some answers soon. Must go to bed as I'm hoping to do yoga tomorrow - make hay while the steroids GRR. xx

Right LeslieKnope this is for you. I'm just catching up on all the absolute crap you have put up with at chemo today/yesterday.

The HCA who PERSISTS in asking about children in this most inappropriate of situations is ignorant and thoughtless and does not deserve her job. To do that kind of job - and I do recognise it is often undervalued and underpaid - requires certain basic personal qualities that she does not possess. Her insensitivity sounds almost wilful, as if she's focused only on her own stupid faux pas rather than on hearing what you are saying. Wrong, wrong, wrong!!!

Definitely mention it - and make a point of staying away from her. She's a drag factor you don't need in your life at the moment. No matter how bad you are feeling, NOBODY who works around you at the moment should be making you feel psychologically worse.

Stuff like this makes me angry for the same reasons as it does you - we are resilient characters who can generally cope, but a careless stupid comment at the wrong moment can really impact negatively on our recoveries and is therefore unforgivable.

I am thinking of you very much right now.

Good morning all :)

I should point out that’s over the whoooole year of treatment, not all yesterday

to nicky we can be Palliative Pals. They do need a better word really as there’s no distinction between people with incurable but treatable cancer and people needing end of life care. Luckily I’d had quite a few friends in a similar position so it didn’t really surprise or upset me. They’ve never said it to me, just on my paperwork. The staff are on the whole lovely, and like you say I think they just don’t think and use platitudes.

TheFarSide she’s actually really lovely otherwise. And she was very upset when I explained it was incurable. So I think she will be much more careful in future. But I really think there ought to be some basic training for all medical staff, as it’s not just cancer where these issues arise, about being tactful and bearing in mind someone’s prognosis might not be good! I know they have a lot on and so many other things to worry about.

Anyway, I’m wittering so I shall stop.

How are you doing TheFarSide?

royal is it your biopsy today? Good luck if so

nicky enjoy your yoga. Did you have chemo yesterday? I hope the side effects are minimal. I’m on a steroid boost too but can’t go to the gym or anything as I’m all hooked up to my chemo pump. I shall settle for a trip to the supermarket.

fluffy I hope you got some sleep! You definitely need a sense of humour to deal with all the cancer bullshit. Nowadays I try to give the minimum information that people need to do their job, as often they misunderstand or they don’t know what to say. Cancer is so boring anyway. I’d much rather chat about other stuff, so I try to distract them I’ve always been dreadful at small talk so at least I’m improving on that!

Sending love to all lacies, especially chewing, and a gentle wave to any lurkers

Just dropping by to wave at everyone. I'm in the lull between radiotherapy prep and beginning the actual treatment on Monday. The nurse at the hospital suggested a holiday this week but we've not find the time and both the kids are poorly with colds so seems it wasn't meant to be!

I hope you have a nice weekend LittleGreyCat and everybody’s colds clear up quickly

It’s a shame about the holiday. Though I’ve found sometimes the pressure is too much when you try to have a special holiday! Hopefully you can have some nice treats over the coming weeks :)

I'm a semi-lurker. I occasionally post about Borderline Ovarian Tumours, which some docs call 'cancer', because they sometimes go rogue, but my doc is in the 'not-cancer' camp. My tumour was the same size as Twitter's, but 3 yrs on, with monitoring, no sign of misbehaviour. I know I am very lucky. Twitter and Nicky, I'm cheering you on.

This is really for Wombat, as a counterweight to whatever she read on Google. I have a friend in NYCity, who was diagnosed with lung cancer, after a routine chest X-ray to check she was OK for a different surgery.
They were able to remove the tumour and found it had spread to the nearest lymph node so took that out, too. Chemo - not too bad, she worked all the way through - and six years on, she's still NED.

From what I gather, there are different sorts of lung cancer, and she had the variety which is more often found in non-smoking women and is easier to treat.

Fingers crossed for TB, of course, but, having been mis-diagnosed with O.C. by the MDT at my local hospital, before being referred to a teaching hospital, I know what a help it is to hear some good news stories while waiting for definitive results.

Leslie I remember when you were Ruby. You're doing a brilliant job keeping this thread going. You always manage to say the right thing, even when you must be feeling rubbish yourself.

Thyme even I’d forgotten when I was Ruby I’m glad you’re being well monitored and behaving!

hello to all, i had an appointment with the diep surgeon yesterday for a check up - very pleased with me and in 6mth i can go back for a nipple!

its not quite the end of my best hospital car parking places knowledge as my aunts scan has shown a 7cm growth in her lung so i taking her to all the appointments - it feels a bit weird tbh, but she is very frightened and there is no one else to take her so i best hoik up my post surgery big pants and get on with it!

i agree, many thanks to Leslie for keeping this thread going - its such a reassurance and wealth of information

Hello,

After a year of general malaise and tooing and froing with my GP I have been diagnosed with lung cancer. Initially my CRP was moderately to high but with no real symptoms apart from rapid weight loss, night sweats and utter exhaustion. Finally in July was referred to oncology and the lymphoma team just to be sure. They were very upbeat, examination seemed to show me in ok health, but sent me for a CT scan in case. This showed hepatosplenomegaly, enlarged mediastinal and hilar lymph nodes and left lung nodules of small vol.

BM biopsy mid August was clear. Bloods were clear. Mediastinoscopy at the end of August then showed metastatic carcinoma (TTF1+ and CK+) favouring lung origin.

Last week I had PET CT, and GFR, and I’m back for the ‘big reveal’ on Monday morning.

Apart from general malaise, I really feel fine. Chest is clear, no cough, no infections.

I am terrified. I have 4 children (youngest is 8) and am on my own. Don’t know why I’m posting really. Advice possibly. Support. What do I do now. What about my children. Fuck. Fuck and thrice fuck. I’ve held it together thus far. Have NOT told the children anything yet as I haven’t got a plan until Monday and anyway how the fuck do I tell them.

looking good news about surgeon and nipple! But sorry about your aunt it never rains, but it pours eh!

Biscetti what an ordeal. I’m sorry it has taken so long to get answers. I have my fingers firmly crossed for you for Monday’s appointment. I don’t have children, but others will be able to share how/what they’ve told theirs of similar ages. There is also some information on the Macmillan website. But I think it’s wise to wait until you have a plan. Do you have any friends or family nearby for support?

Thank you Leslie. I think it’s taken so long simply because I have no real symptoms. But it’s definitely there, the bastard.

Not particularly close geographically to my family - we’re all rather scattered, but have some amazing friends (also scattered, but a big chunk that are local) who have been wonderful. One is coming with me on Monday to basically do the adulting as there’s not a hope in hell I’ll manage that sensibly. She’s a journalist too, so I know she’ll be very capable of recording all the info that I suspect will go in one ear and fuck off out any available orrifice.

Thus far I’m relying on my black humour and a lot of swearing. Which is pretty much my day to day MO, just it’s now enhanced.

Biscetti I didn’t really have specific symptoms prior to my diagnosis either. I think it’s trickier with “inside” cancers as you can’t have a good old poke around!

I’m glad you’ve got some support, and your journalist friend definitely sounds like an asset. I always think I’ll remember what’s said and rarely do, even when it’s a completely uneventful appointment.

Humour and swearing sounds like a good coping strategy.

Biscettti will be thinking of you. Of course you are terrified. When my ex was diagnosed with leukemia 9 years ago we didn't tell the children (youngest was 9 at the time). We wanted them not to worry and to carry on with a 'normal' childhood. In hindsight I believe this was a mistake and that it's best to tell children what's happening - even if it's a sanitised version.

They pick up on things and worry about them - my eldest did and I didn't know. Being able to talk about it helps ease the fear. When I was diagnosed with ovarian cancer in March I told the children straight away - though they're a lot older now of course.

Lean on your friends Biscetti - sounds like yours came out of the same wonderful mould as mine, all stepping in to help in practical and emotional ways. It has really carried me through the last few painful weeks of tests and diagnosis.

I have no children, so no advice on that subject, but as others say there is a lot of wisdom around and I feel sure you will find the support you need to help tell them and get them through it.

Thank you so much Twitter and FarSide. Yes, I am certain I need to tell my children (oldest is 24 btw), and that I need to be honest, particularly with the older ones, but with my 8 yo too. It’s finding the words. I have spoken with Macmillan, and have their booklet and also assurance that they can help me if/when I would like them too.

My friends have been amazing. I’m really not one who historically would ever really ask for help, but they’ve made it quite clear that I must, and I am.

I think the thing eating me up more than anything, is knowing Monday will be awful, but not quite how awful, IYKWIM. I’m accepting of the fact that treatment (I’ve been told chemo, or radio chemo, and possibly targeted treatment) is coming my way, and I’m going to take and do everything they tell me, but broken by the thought that it’s unlikely I’ll see my youngest reach adulthood. For her, rather than me. I think mentally I’m ok but oh god, idk, it’s all just shit. Sorry, I’m rambling at this godforsaken hour.

Yes Leslie you’re spot on. The no symptoms thing is a bit of a head fuck. I honestly thought I was going through a (relatively) early menopause. Oh how I wish I was.

Hopefully the PET scan will enlighten them as to where/what the primary is, but how bloody frustrating it is to, you know, be in good overall health. Although I’ll take that as a small positive in that the treatment thrown at me may be better dealt with by my body...

Hi biscetti, it's an absolute bugger. I was diagnosed with breast cancer in Feb.. .lumpectomy and radio...not chemo. I told my children (boys, seven and 10) when I knew exactly what was happening...it took a while for them to decide whether I needed chemo or not. I was astonished by how calmly they took it. Children are incredibly resilient and adaptable. I admit it was easier as I didn't have chemo...so no hair loss etc.. but even so I was dreading telling them and they realky were fine.
I find it far harder coping with the terribke sorrow that I may not see them grow up etc...the idea of leaving them behind is horrendous. I remember so clearly cuddling my 10 year old a few days before going to get my results and thinking these next few days are the last time I will be hugging him before I chuck a hand grenade into his life. In my clumsy way I'm trying to articulate that I know how shit it is and I'm holding your hand....shoukd you need it!

Leslie...you are a marvel...hope you're feeling ok

Flippy...lovely to see you.. .know what you mean about the anxiety. Physically cancer has barely affected me...but I so struggle sometimes with the fear of it coming back

Royal...i think you have results pending...huge luck

Faeside.. .what a horrendous shock it's all been for you..so glad you have got lots of support and wish you all the best for your treatment

Mrs fingers crossed for hysteroscopy...well done for keeping on top of the admin...a job in itself

Twitter....im not sure how you do it.. but you manage to make me giggle despite you going thru so much crap

Waves to all...

And Chewing...i think of you every day...

Xx

Oh and biscotti.. .I'm a journalist and took my dictaphone to appointments and a friend/the husband etc.. .your friend has probably got one and it's quite useful...xx

ThymeOut Thank you very much for your post. It is the first positive thing that I have heard and I really appreciate you taking the time to post

Biscetti I'll be thinking of you tomorrow

And thanks to everyone else.

Leslie you are a very special person. You take so much time and effort remembering what everyone else has going on, despite your own battles. That's not just on this thread either

Waiting for OOH GP to call back in next six hours as I think I’ve got a UTI. The 111 operator advised me to call 999 if I become unconscious

Yes Biscetti it’s very weird to feel fine and have cancer. Bit of a headfuck. Fingers crossed for the PET. I try to keep everyone else a step behind with information (except parents) so I have a chance to process it myself before being asked questions and dealing with others’ responses. Try not to get ahead of yourself with the prognosis (easier said than done I know!) as cancer is much more manageable nowadays

Waving to everyone especially those awaiting results, appointments etc. Sorry not really quite with it so will leave it there for now, but you’re all in my thoughts :)