Thursday, 24 November 2011

Please Support Chemo Patients

Macmillan are putting their weight behind efforts to stop DWP make cancer patients undergoing chemo attend work related interviews. You all know how badly I tolerate the poison and this is cruelty beyond words. Just trying to fit an appointment in would be tricky, one week as an inpatient, in for flush next week and another appointment for a blood test. If someone took me I'd like to think I'd throw up or my bag would need changing, just to liven things up.

It would be nice to add to the 3500 signatures so far.


Tony Songhurst said...

Nice one Lisa,

I have signed up and placed on my blog too.


Anonymous said...

Hmmm....if you read the small print, all they are proposing is that patients receiving oral chemo *may* have to undergo an assessment to decide if they are fit for work. Patients receiving IV chemo are automatically classed as "severely ill" and are not affected. So there would never be any circumstances in which they would apply to you... :-) But Macmillan's headline is a bit less persuasive when you read the proposals!
I am not saying I necessarily agree with that distinction btw, but I do think that *some* people undergoing treatment could be at or seeking work. It isn't a "one size fits all" disease, and personally I would much rather that resources were directed where they were really needed (e.g. research, palliative care, early diagnosis - even cleaning the sh*thole hospitals!) rather than payihg benefits to all comers without asking reasonable questions.

I would probably be too scared to say that if I had not worked FT during IV chemo! But then I am a [Badass][Mentalist] :-D

Faerie xx

Loopy said...

Well I discussed tablet form of 5fu with another drug, also tablets, after 3 PICC lines my arms are protesting. "be assured this is not a soft option, we can kill patients with the side effects" - they have, a friend's dad. So who said IV is worse? Just means potentially more time in hospital, not feeling worse. I've had no treatment for months but it doesn't mean I am capable of working. I found it impossible to concentrate due to emotional effects 18 months ago. Interviewing for anything would have been pointless, who would hire me anyway? I have "looked really well" most of that time despite unseen pain and emotion I'm sure many looked at me thinking my blue badge was fraudulent, that I should certainly not be living off benefits as I am - you just can't see through the facade. If people are able to work with cancer, I can't see them skiving, especially since post treatment is max risk of post trauma depression (hands up - me)

Anonymous said...

I agree the IV/oral distinction is flawed, but just because it affected person A in that way does not mean it affects everyone the same (e.g. us in 2007 comparing notes on 5FPoo!) It's not even a single disease and there very, very many different treatments. Not all of them prevent working and assuming they do is just plain wrong. In the US (no ESA there! And no, I don't think that's a good thing) *most* people having chemo go to work.

I remember getting home from hospital after my operation and opening a very tongue-in-cheek card from the managing partner which basically said "you haven't got time to lie around in bed, you've got work to do and clients to service so pull your finger out". I thought "damn right" and it made me more determined to resume my normal life as soon as the stitches were out and not dwell on the experience. The point is, he *knew* that would work for me because everyone is different, their attitudes to work are different, they respond to treatment differently. I went to work with a chemo pump and a smile and yes I occasionally felt like death but I hope it showed people that whilst cancer sucks dead dogs, life can go on. There is no way in hell anyone would begrudge any kind of benefits *you* receive (and if I saw them "looking at you" in that way, believe me, I would go postal!) BUT there is a limited (and diminishing) pot of money to go round and paying any group indiscriminately (when there is ample evidence that *some* of that group may be able to work - and may even want support and help getting back to work!) is wrong, wrong, wrong. We can pay ESA to (say) otherwise healthy people having adjuvant chemo when our cancer treatment is better than Slovenia's (FFS!), or when post-surgical cancer patients do not have to sleep on Crimean style wards that stink of shit or tolerate abusive nurses(see your post below!), or when NICE is not refusing drugs that are available in every other fecking industrialised nation... I could literally go on all day! (But I won't...)

Anyway, you know how I love a good argument, I just don't get paid for it on Saturdays! :-D

Hugs, Faerie X

Loopy said...

So is your main argument these benefits are dished out automatically? I can assure you they're not, pages and pages of questions on how far you can walk, if you brush your own teeth, prepare meals blah blah. But all that has to be backed up by medical information. Terminal patients with lung tumours, like me, in constant pain, walking with sticks have been made to attend interviews and return to work training. Just because you coped, you can't insist that everyone else should feel the same way. I can't believe there is a huge amount of money to be saved from this group of people. And six months to claim DLA? My house would have been repossessed, everything I've worked for gone, my children left with nothing and no mother.

Loopy said...

Stupid thing cuts me off after so long... Anyway - those who want to and are able surely do go back to work or continue like you? Even in this hick town I get free benefits and financial advice from my hospice which includes return to work training information. The point is these rules don't differentiate between adjuvant treatment and palliative. Therefore delays in getting benefits to dying people like me is appalling. Let's face it I'll just scrape to live 5 years post diagnosis but most people are still dying.

Loopy said...

Christ its been years since I had any decent debate that wasn't an argument. It's invigorating. And we will no doubt agree to disagree :-)

Anonymous said...

Thinking about it, maybe adjuvant/palliative would have been a fairer distinction by the DWP? Sick person on oral chemo vs. comparatively well (if a little septic) person like I was on IV. Easy to see who should be prioritised for help! Of course life is rarely that simple.

I certainly would not insist that everyone is like me and works. But I also think people who do get cancer and are lucky enough to have a chance to get better should not be automatically treated as "long term sick". Surely it's better for them - and everyone! - if they continue to live a normal life *where possible*, and for employers and colleagues to see someone coping and getting better and realising that it's not always the end of the road. Let's face it, cancer is here to stay, it's overwhelmingly likely I will get another one, given the genetics, and all of us are at massively higher risk of it these days. The treatments will also get better and more of us will live with it, or after it, for longer.

I am not suggesting for a second that terminal patients should have to attend back to work interviews - that's sickening and anyone who supports it is a fucktard. (I am not sure why people in that position are not on disability allowance or whatever its called, but that's probably just ignorance on my part.) But the problems you've described - delays, questions, endless forms - all suggest that the system/bureaucracy/management are sh*t and need sorting, irrespective of the rule changes. It doesn't alter the fact that chemo patients are a broad church and whilst many are not capable of working (and should be looked after better than they are now), others are, and some will want to.

Btw your house would not have been repossesed in 6 months - any bank that tried to do would have been on the front of that Daily Wail comic before you could say "Piss poor PR". :-D

You're right that the amount paid out in ESA is tiny, but it's just that every single one of us can say "I suppose there do need to be cutbacks as we're skint, but I don't think they should affect *insert name of personal fave cause here*". As my lovely grandad used to say (when endlessly comparing prices in Tesco while I headbutted walls) "it all adds up"!

And yes, I do love a good friendly debate! And the fact that we can have a good ole rumble and still be BB's at the end of it!

More hugs! Faerie XX

Loopy said...

I was adamant I be treated like a person, despite needing physio to help me walk properly again after chemo killed my nerves and the other stupid problems I had. I desperately wanted to be normal again. I vaguely remember that life..,

The whole reason for supporting Macmillan is for me and the chap I mentioned who is attending these interviews whilst dying (he most likely is on DLA too but that makes no difference to ESA interviews). I'm currently in the group who don't need to attend, why he isn't I cannot understand.

Anonymous said...

It's obviously completely arbitrary and that itself leads to stress and anxiety. I really think the number of people 'swinging the lead' must be tiny at least so far as diability/ESA goes. I would be amazed if anyone with incurable cancer was interested in telling fibs to extract an additional flumpence out of the taxpayer and I am surprised that recipients need to fill in so many forms. Which is why I think that the system needs to be improved generally and made much better for those receiving palliative treatment.

Our journeys have been different but I know how much shit you have had to put up with, and you have done with incredible fortitude. I know that I would not have coped as well if the roles were reversed and, even in the good scenarios, the experience of cancer never, ever leaves you and only people who have been there ever really understand, in my experience. It's hard to forget. I did manage to forget about the peripheral neuropathy/nerve damage (what did we used to call it? I'm sure it had a not-very-PC=nickname?!) until I tried to defrost the freezer a couple of weks ago. Cue howls of pain and rage, and a bit of effing and jeffing for good measure. Suffice it to say that the freezer still needs defrosting! ;-)

F xx