fuck cancer

very sorry, lg, he sounds like a lovely man. cancer is a cruel thief.

Sorry ronan

Sorry for your loss, Ronan. My best wishes you you and all your family.

My neighbour across the road sadly passed away from cancer a couple of days ago. So yeah fuck cancer.

maybe i've had a lucky life to be able to say this but it feels like the older i get the closer i am to the people who die.

perfectly valid thing to feel and nicely put.

<3 thanks all - i can't actually post in full thought mode on social media cos of relatives following and fear of impropriety - my relatives are mostly good people and wouldn't really judge but still, it is good to be able to talk here.

Best to you Ronan

My wife's younger sister, only 37 years old with a two-year old daughter, has just been diagnosed with a rare blood cancer that I guess is basically leukemia. It's everywhere - her blood, spinal cord, bone marrow. Terrible situation.

Christ

Aw that's terrible.

Have to rant about this I'm sorry.

The NHS have been absolutely SHIT so far looking after my wife. I know it's probably the tories fault. But for fuck's sake. I'm getting fucking sick of Macmillan adverts on the TV as well. They've done NOTHING for her so far. The Macmillan nurse is a waste of fucking time. If you call her, you won't get through, and she doesn't return the call for at least 3 days (still waiting after the last one). My wife is having side effects from the medication they gave for the side effects from her other medication. She has "dissolvable" stitches from an implant operation that still aren't going anywhere 3 weeks later and are irritating her and keeping her from sleeping. The GP refused to remove them "because he's not very good at it". Nobody seems to give a shit. The Macmillan nurse gave us a great spiel about all the help we'll get. She noted my wife suffers from depression so will need counselling. The nurse has to refer her to get it. She hasn't done that. The nurse did refer her for acupuncture, which my wife didn't ask for, but she thought she might as well do it. The acupuncturist called last Friday while the police were here after we had a smack dealer banging on our door, my wife asked her to call back because we were in the middle of an emergency situation, they didn't call back. Nobody calls back. Nobody does fucking anything. We have to fight every step of the way. It's just a fucking nightmare. You're not alone! Good fucking joke Macmillan you useless cunts. I don't know what to do. I've called Macmillan myself they just say the nurse has to deal with it. Not their problem. Maybe we can complain about the nurse? Who to though? WTF.

They hooked her up with a "buddy". Somebody who has been through the same type of cancer. She was supposed to call a couple of days ago. She didn't. They won't let us have the number (it's withheld when they call) so my wife can't just call her instead.

colonel, i am so sorry you are having all this stress, and encourage you to vent as much as you need to. my very best wishes to you and your wife. i hope she heals well and you can put this ordeal behind you. i know from reading your posts that you've been having a rough time for a while now and i am very sympathetic and really hope things pick up for you both soon.

I feel like I'm just moaning all the time (which tbf I am) but it's just one thing after another. This year has just been misery after misery after misery and it never ends. I literally went to the funeral of my uncle who died from cancer 2 weeks before my wife was diagnosed.

i relate, had a year or so like that (several years ago now) and it was grimly ridiculous, one awful thing after another, so that i look back now and feel demented remembering it. the main thing i took from it is that i will never complain of boredom again for as long as i live. i'm really sorry about you losing your uncle as well, it is such a lot for you to bear. most future years will not be like this for you, i am certain. best wishes.

macmillan were useless for our situation as well.

during the chaos, during a particularly scary part, i was in desperate need for help re stress/depression etc.
everyone i spoke to about my needs to help deal with the logistics of the chaos told me to call macmillan as they were supposedly there for all going through this stuff.
i called and explained, but as i did not actually have cancer then i was told there was nothing they could do.
no help, no advise, no helplines to call, absolutely nothing.
i will never ever donate to them.

instead i donate to the hospice as they were wonderful.

CP : i totally hear you re the chaos, its just exhausting being the one who has to deal with all the logistics, the brick walls, the waiting etc.
my heart goes out to you sir.

They talk a good talk though, don't they? Came out of the initial diagnosis meeting full of hope we'd get support through this. That's all it is though, talk.

The local support group that offered my wife acupuncture couldn't wait to get her off the phone, were really abrupt with her. I've got to wonder why these people volunteer to do this when they clearly don't seem to give a shit. I'm getting very uncharitable feelings about these people. I think they just do it so they can feel good about themselves, look at me aren't I great I volunteer for cancer support but I do fucking nothing. When you're dealing with someone with major depression who already feels like they are worthless and not worth bothering with and you fucking KNOW this because you even said in the meeting they would have to keep an eye on her mental state and you put obstructions every step of the way. My wife is just giving up. I have to try and figure out who to call but I get nowhere.

hey colonel - hope that things improve in some way.

I've no good advice for you Colonel. It's messed up everyone just leaves you hanging. Wishing you the very best.

CP : maybe the problem was the fact that i phoned.
perhaps things would have been better if my wife had phoned them.
unfortunately, due to the chemo excess, she was in no state to make a long protracted phone call.
and therein lies the problem.
i did not have cancer, i was just looking after someone with cancer.
but from the adverts/lovely brochures, they come over as being there to help all.
clearly not the case.

in the end in order to deal with the anxiety and stress, after a full on scary panic attack/breakdown (i was having to be a parent for the kids, and i got into a very bad place re them),
i went to my GP in a state and was put on anti-depressants.
the drugs helped me deal with things as they numbed my anxieties to a level that made the day to day bearable without panic attacks.
but coming off them was pretty nasty it has to be said.

Yeah I've done the same. I was already on anti-depressants but tbh they stopped working a long time ago. Went to the GP and he put me on different anti-depressants. This has actually helped a lot, believe it or not from the amount of moaning I do. I was a complete mess a few weeks ago, just anxiety/depression all the time. Couldn't cope, couldn't do my job. It has helped with that.

I think you might be right about the phoning as well. I've tried phoning a few places because my wife can't do it, whether because she feels to ill or just because she's depressed and thinks it's pointless because no-one cares. Not sure what to do about that. I try and encourage her to call places but it's only going to happen if she feels well enough to do it. It doesn't help that today is Thanksgiving and nobody celebrates it here and her family in the US have been pretty shit so far, probably because her mum is elderly and hasn't been the same since having an accident earlier this year and she's not got a good relationship with her brother, so she's down about that as well at the moment.

CP, so sorry to hear about this. I have no useful advice, but I hope you and B are able to find a way to make a shitty situation a little less shitty. Love to you both x

Just got back from 7 hours at A&E because my wife might have a blood clot in her lung, it's 6:30am and just after I get through the door one of my cats pukes on the carpet. Symbolism.

sending you both best wishes, colonel, so sorry you have all of this going on.

My wife is talking about stopping all treatment and just coming home from the hospital because they are so fucking incompetent in the ward she's in. She is doing really badly mentally. She is covered in a rash and they won't even give her any cream to put on it, just some antihistamines that don't do anything at all. She's hardly slept in 2 days no wonder she is in a state. She had to plead for a sedative last night but they must've given her a really weak one because she only slept for a couple of hours. She had to plead to be given a hospital gown! A nurse took her regular medication away and managed to lose it for several hours. I spoke to the ward sister last night to try and see what was going on and why they weren't doing anything and she was a complete moron, didn't even know what hydrocortisone cream was and said even if she did they wouldn't have any there. What kind of hospital is this ffs. If she says she's in pain they just give her paracetamol. She wants to come home and give up. They were supposed to be referring her for counselling weeks ago and haven't. It's a fucking mess.

What Estela said - and it makes me so angry to hear your wife is not being given the proper care she is entitled to.

Community nursing rang this morning because we weren't in yesterday for my wife's daily injection, because we were at the hospital. Couldn't tell them we weren't home because we have no contact number for them and nobody at the hospital had one either. Nurse confirmed that they don't have a contact number and at least agreed it wasn't our fault they had a wasted journey. What the fuck kind of system is this. I told her what was happening at the ward and she said I should try ringing the chemo ward emergency out of hours number and tell them because they might know what to do. No answer at the emergency out of hours chemo ward number! FUCK.

Sincerely wish every Tory voting scumbag in this country gets fucking cancer and has to deal with this shit. I hate this fucking country.

really sorry to hear about such a terrible set of circumstances. feels inadequate to try and offer some hopeful support but nonetheless...

this sounds unbearable CP, all the best to you and your wife

Seems like the night shift in that ward were total fucking idiots. I've been at the hospital since 10:30 today and the staff were much more helpful and agreed mistakes were made last night. They should never have moved her from the private room into the ward next to someone with a chest infection* who was coughing all day and night because she's at high risk for infections. The nurse got a doctor and they got her moved into a surgical ward where people are there for operations not infectious diseases. They couldn't understand why she'd been moved there in the first place.

For no reason at all the night staff gave my wife an indigestion tablet at 4:30am last night. She wanted a sleeping tablet because she was itching uncontrollably and the sleeping pill they gave her at 9:30 had worn off. I suppose they just gave her a random pill to shut her up or something. She's going to make a complaint about them when she gets out. We were trying to figure out what it was they gave her for the afternoon nurse to plan what she would need tonight and she looked it up in the records and was totally confused about why they would give that particular medication. Probably got her mixed up with another patient.

Part of the reason it's been so shit is because it's the weekend so there are not many doctors around apparently. Tomorrow she should be meeting the oncologist so they can try to figure out why she is reacting so badly and if they can do anything about it. They should've done this already of course.

*these cunts were something else. Racist Brexiters, and the son who came to visit was complaining hard about my wife's cubicle having the curtain drawn because it was somehow blocking his mum's view of the ward and that's really important for some reason. Never mind that it was to shield her from his mum coughing up her lungs all over her, he assumed it was my wife wanting privacy all day or something. The nurse said he's been a nightmare about everything but the mum is OK. Not according to the bile she was spewing about muslims all afternoon she isn't.

Good lord. Strength to you both.

Terribly sorry this is happening to you both, fingers crossed for smoother sailing ahead. Night shift in U.S. hospitals is definitely a dumping ground for a lot of crummy nurses. Hopefully the weekday shift will be much much better.

Would imagine that staff on nightshifts and weekends lack doctors and specialists to refer to and have operate on the fly but without the authority or knowledge to make any significant treatment decisions. Hope that from Monday morning you'll see a big improvement. Anyhow, thinking of you cp and if you need any help with your house move just give us a shout.

Finally some good news, or at least not extremely bad news, for a change. The breathing difficulties are not due to a blood clot, or secondary cancer (which we terrified of because that would be terminal), she has an infection in the lung scarring from when she had TB. This is treatable with antibiotics but they will have to keep her in hospital til the weekend probably. She's still mildly neutropenic and will probably get a private room again when one becomes available. Still boggling at the idiots in Acute Assessment who thought it'd be a good idea to put her in with a load of chest infections. She is feeling worse today and wondering if she got an extra infection from the racist old woman next to her.

this is all sounding very very familiar.
i had to take bh into hospital on a good friday.
she had just had a dose of pnemonia, was incredibly weak, and they put her in a chest infection ward for the weekend.
no doctor saw her until the tuesday due to the bank holiday weekend,
by which time she was not in a good way having been exposed to all manner of germ warfare.
as soon as the doctor saw her she was transferred out into the oncology ward.
but it really was totally baffling and not pleasant leaving her there.

hope the antibiotics gets things settled CP.

the best to you both M

I had no idea about any of this mate. Hope you and B get through this. Thinking of you pal and hit me up on fb anytime you need to vent.

Mark what you (and NickB) posted has helped make sense of what just happened. Today there's been a procession of doctors, nurses, pharmacists coming to see B and it's been a different world compared to Saturday. Things are being done. More importantly B is not freaking out that she's being left in hell.

NickB - I appreciate the offer - we have so much crap that we have to hire a removal firm to get us moved so I don't think/hope we'll need any help, I've learnt from the move over here so I'm going to hire 3 guys to do it, at least this time the lift should be working, although I've just jinxed it. Moving over here it was 2 guys and me and my mum carrying shit up 4 flights of stairs for 6 hours. But that was without a lift.

xpost cheers Mr Slop

all the best to you & yr wife colonel, I am glad that things are progressing finally for her. what a nightmare

Fuck cancer.

Jesus Fucking Christ.

The complete fucking moron doctor who removed my wife's port yesterday because it was malfunctioning used metal-tipped stitches for no apparent reason (they didn't use this kind when it was put in) and she was due to have an MRI scan today. Narrowly avoided being burned because they spotted it just before the scan. What the FUCK. So now we have to wait til the stitches can be removed before she can have the MRI to determine if the chemo is even working. On top of that when she has radiotherapy she'll have to travel to another hospital 40 miles away, with no option for transport to be provided and we have no car/driving license, so it's 2 hours each way, 2 taxis and 2 trains. The NHS is completely fucked.

It was the same fucking department even. Radiology put the metal stitches in the day before radiology were due to do an MRI. So can't even blame it on interdepartmental communication failure. Just incompetence.

Jesus. That is so fucked up. It never stops does it?

I'm two months into a severe hospitalization of my mother (not in uk) and I've learned to constantly be on the lookout for errors. Them moving her to a diff department while she has an appointment with a doctor somewhere else at the exact same time; preventing the doctors to give her medication she isn't supposed to be given and explaining why. Stuff like that, small corrections. That already puts me on edge every time I'm there, but it's manageable and generally I'm happy with treatment and care, and with the fact that there is a general willingness to listen and go the extra mile.

With you though, I can hardly imagine how you must feel at this point, with everyone in the bloody system failing you in so many ways. It's distressing and quite frankly deeply shameful to see people who need to care for your loved one fuck up this much.

And why can't the hospital arrange proper transport when she has to go to a different hospital? That alone baffles me.

I've no help to offer, but feel you on how on edge you already are. Having to deal with this complete incompetence blows my mind. I'm sorry Colonel but I'm thinking of you and wish you both the very best.

Thanks LBI. I feel guilty complaining about the NHS because I know how stretched they are, and most of the nurses and doctors have been caring and helpful, but the continual battling we have to do and watching my wife struggling with getting any motivation to try to get better when they put these obstacles in the way is very draining. Of course I mostly just complain when things go wrong so you don't hear about when a nurse sat and chatted with my wife and made her laugh.

I never seem to find any energy to post about anything but crap things going on in my life these days so I apologise profusely to ILX for using it as a dumping ground but I'd rather mouth off here than to the diffuse group of actual friends and family members and various acquaintances/people I used to work with that I have on FB. At least most of you bastards don't know who I am so it feels less embarrassing somehow.

No need to apologized for anything man. Ilx is a fine dumping ground, many of us are here by choice, remember :) Seriously, no problem at all.

Keep thinking about this one thing: your wife is admitted in the hospital. How can they *not* be responsible for arranging appropriate transport/taxi to and fro a different hospital if she needs to be there for something related to her treatment? I just cannot get my head around this.

Ah, she's not currently in the hospital - they discharged her last week. She has to go in every day this week but Tuesday, but she goes home after - it's all outpatient stuff, even the operation to remove the port yesterday - she was sedated but I was able to accompany her home in a taxi. She has to make her own transport arrangements, which is OK if the hospital is 3 miles away but less OK if it's 40.

venting is an underrated but imo important part of dealing with all of this - better you let it go here than hold it in & unload on some unsuspecting someone irl <3

LBI otm basically.

It sucks that there isn't a service that could help with transporting her, public transport in her condition just seems like too much to deal with :/

Yeah, too much to deal with. Hope someone in your circle of friends or family can help out and take you both there.