Thanx Very Much Coronation Street ....

[marie souter]

Well am not very happy, mom has made it clear that she doesn't want to know timescales for her inoperable cancer, shes 5 mths into diagnosis now ... switch on coronation street ...

Hayley .... how long .... 6 mths without Chemo 12 mths with ... WELL DONE ... am so mad .

[kwaitang]

That is sad if your Mother didn't want to know and must have been a shock for her.

We were not surprised as it was almost identical to what we were told. Best wishes to you and your Mum. Arlene. x

[Slewis7313]

Marie, that was a perspective I would never have thought about. I was excited when I heard about the coup of PCUK influencing a Corrie story line to publicise Pancreatic Cancer. It seemed like a massive opportunity to push home the message of how horrible this illness can be, reinforced by some stark facts to make people sit up and take notice.

I do however see how upsetting this must have been for both your Mother and you. I too have always been an ardent Corrie fan and will watch it come what may, so I assume avoiding the difficult episodes is probably not an option. However, I would equate it to a recent post which described in detail the last hours of someone suffering with Pancreatic Cancer, which I found difficult to read (it could / will be me) but it transpired to be of real use to a number of carers looking for this type of information. It appears to have been the right thing to do for the wider audience.

It's really sad that an initiative based on really good intentions has caused you pain. I do however believe it was the right thing to do as the publicity for our plight is massive.

Take care

Steve

[marie souter]

Oh I knew the episode was coming on ... I tried everything to deter my mom .. but she wasnt having any of it..it's Corrie after all ... I do agree 'ANY' kind of cancer does need to be publised (spellings gone lol) Coronation Street is a good platform to dramatise these things and normally I would be watching with interest ... I know its a good thing and people have no idea how aggressive Pancreatic Cancer is .. just RAWR .. I had to pick up a few pieces .. my mom isnt one of those strong people who can face things head on.. shes decided ignorance is bliss and wants no chemo, no scans, no oncologists she just wants to continue on as if nothings happening .. and she does seem to be coping well with this attitude .. it just brought mom crashing down is all .. can't stop mom watching her fav programme but I have told it could be hard viewing for her in the future .. I'm just hoping that mayeb at some point I will get some advice that will be useful there .. hope you guys are good

[Slewis7313]

Thanks Marie, it sounds like Corrie is not going to be easy for you. We know that the information will at least be informed and factual, but that may not help your situation. If it's any consolation, I just know that whenever the Hayley storyline comes up I will be thinking about you both (probably won't be able to stop myself).

Good luck!

Steve

[laura]

hi marie, and steve and anyone else, i dont know how your mum is or if advanced/spread, my h7bby bri, diagnosed feb 2010 stage 4, 6 mths ish was muted, 19 months chemo, tumour still there, smaller, no spread, still enjoying life, NO ONE canbe certain of time spans, can only go on averages, bri cant / wont be the only one to defy the odds, chin up keep positive. love laura xxx

[Slewis7313]

Thanks Laura.... These are the kind of stories we love to hear about. I certainly hope to be reporting the same progress 2 years down the road!

Best wishes to Bri

Steve

X

[J_T]

I do understand what you are saying marie, but as Steve says it is SO important the message gets out about the awfulness of this disease and the shocking statistics.

When Ray was diagnosed I was astounded at the many references to cancer, dying death and related subjects that popped up on tv. I'd never noticed before. I remember thinking we'd be quite safe watching Escape to the Country but no, on the local information bit, it was about a wicker place. Oh yes, they said, we make all sorts of things, including coffins! When you just get that terrible news you're a bit hypersensitive to stuff like that so it was a bit of a shock.

I do think Corrie have handled the issue quite well so far but as I said I can quite see how it would difficult for patients to watch, Ray isnt watching.

[LindaH]

I can't and won't watch it Marie. Far too upsetting for me. Linda x

[cally]

I don't come on here very often as I found the forum after I lost my son to PC at 41 years. What I found distressing about Hayleys diagnosis was if I remember rightly about 10 days from visiting GP to scan and diagnosis. My son Gavin was visiting his GP for over 18 months and was fobbed off with IBS and diverticulitis before they finally sent him for colonoscopy and scan. They opened him up because they said part of his colon had twisted and died, he was fitted with a bag, told his spleen had been removed and part of his pancreas. This was August 2009 nobody told us that a biopsy was taken and the result was PC. He eventually got an appt for a scan after being told the bag would be reversed. The follow up to this was February 2010 when he was given the devastating news that he had PC and they declined to say how long "everyone is different". He took his last breath on January 10 2011.He was never given a chance, never told what was wrong he honestly thought he was going to get better untill Feb 2010.

I hate with a vengeance story lines like that.

Cath

[Slewis7313]

Cath, reading your story is really difficult and to lose someone you love so young is awful. There are so many similar stories where people are fobbed off or misdiagnosed, costing valuable time. Whilst the Corrie story is unrealistic for a lot of sufferers, I have had some luck with my treatment insomuch that my GP referred me to an upper Gastro specialist immediately after my first consultation. I was diagnosed within 6 weeks of first noticing any symptoms. Had my GP not been so switched on and decisive, I dread to think where I would be now. I don't know what the future holds for me but I have obviously been given more of a chance than your Son ever was.

I can fully understand your despair at what the Corrie story has depicted with regards to speed of diagnosis and find it so sad that your Son was not treated in the manner that he should have been. There remain such discrepencies in the way people are treated in different places and it is important that the healthcare professionals are constantly reminded of this.

Whilst I personally find the Corrie story useful in promoting the cause, My Wife, like Linda finds the whole Corrie thing too painful to watch as she does not want to relive the dark days when first diagnosed.

This thing is truly horrible.

Steve

[J_T]

SPOILER ALERT!!!

Well I hear Hayley is to commit suicide?! How common is that then? Can't say I'm enamoured of that scenario.

[Slewis7313]

I have found the storyline really good (in a masochistic sort of way). I too had heard about where the story might be going and think it will distract from the message and perhaps even overshadow it, which would be a shame. I also don't think it would be true reflection of the Pancreatic Cancer fighters we see on this forum.

Steve

[InfoForMum]

I do wonder, for everyone who feels able to get up and carry on, how many feel utterly overwhelmed or depressed. Probably not those who feel robust enough to post. I wonder how good the oncology community are across the board with spotting this, spotting when it's not just the usual amount of mental trauma caused by this diagnosis or treatment?

Have found at times that for mum having cancer and going to the docs is a bit like me smoking and going to the docs (don't lecture please, I quit for 12 months then started again quite recently for some reason!) EVERYTHING that's wrong is put down to either a cancer or chemo symptom, just like for me everything wrong was to do with my smoking (even, believe it or not, my sprained ankle). Guessing that's a risk for everyone, especially when it comes to mental health.

Hopefully our PC family all know its ok to contact the support line, their oncology team, their GP or the samaritans (for anonymous support - I found my self doing this once in the past and they were marvellous) if they are worried they are struggling to carry on - there's also some great advice on the Macmillan site here - http://www.macmillan.org.uk/Cancerinformation/Livingwithandaftercancer/Emotionaleffects/Depression.aspx

There's absolutely no shame in falling appart, the key is to differentiate between what's "normal" for you and when you are low for too long. Most of the population have at least one episode of depression in their lifetime, either due to things like cancer landing on them, or because some of us are more prone to lows. Don't be alone. People will understand and can help.

Sorry to hijack the thread!

Sarah

[J_T]

OMG! Can't quite believe what I saw tonight! No! No! No! No!

[J_T]

Well, have just watched Friday's episode. Hayley said this

"... and not keep me lingering on for a few days or weeks"

Well, I could write tomes on this, but suicide is not the answer or, should not have to be the answer.

There's a huge debate to be had and I thought perhaps a support forum is not the best place for it, then again, if not here, where?

How a terminal patient dies, is massive to them. Coronation St has been good in showing that at least.

Edited November 10, 2013 by J_T

[cestrian]

When the time comes this vile scourge is going to have to kill me on its own, it's not getting one shred of help from me!!

Haven't seen Corrie as I gave up on it when it became East Enders with cobbles!!

[Slewis7313]

Couldn't have put it better Mike! I conmented back on September 24th on this thread and still believe the Corrie story development does not reflect the determined fighting spirit which persists here in the face of substantial adversity.

In the words of 'Galaxy Quest'.... "Never give up, never surrender"!

Take care

Steve

X

[EmmaR]

Steve , Mike I agree with you both I only wish I could convey that to my hubby who is in hospital with a PE and has just been moved for I think about the 5 time in a week from 3 different wards now on a respiratory ward but tonight when my son & I arrived he was in a ward of 6 all on oxygen like him but with things like pneumonia, emphysema, granted they are ill but I don't think they are dying of PC .

My son wanted to take his dad home there & then as he looked defeated and some what childlike accepting his medication, trying to remember when he had the last dose really worrying about the oxygen would he have it if he came home !! It looked as if the fight had left him all this in two months ,

Consultant visit in morning no Dr to be seen all weekend ! I could have done more for him at home I would even had a shot at the Claxene injection as that is all he as had different all other meds the same ,

If he is there much longer will seriously consider a private room for him away from what reminds me of the film " one flew over the cuckoos nest " well I am so tired ,so angry , so broken hearted , this bloody disease is destroying my every fibre , but if he won't fight on then it's up to me I will echo Steve's words " never give up ,never surrender "

EmmaR x

[J_T]

People don't give up, they don't stop fighting. They don't pick the fight in the first place.

I SAW what this illness did to my husband. He was SO ill, and bedridden from 22 August till he died on 12 October. I could never have said 'keep 'fighting'' I loved him too much.

[EmmaR]

Julia I too really feel like you deep down I might feeling like fighting for his comfort but as you said love takes over and the struggle to watch them fight is just unbearable .

EmmaR x

[Slewis7313]

Julia, perhaps it was a little crass for me to use the expression which works for me whilst i am in a relative good place at the moment.... It is easy to be brave when things are going well. I fully appreciate that on these journeys people reach a point where even the ability to try and fight is stripped away from the sufferers and I certainly did not mean to intimate that this is anything to do with giving up. I simply do not know how difficult it was for yourself and others who have recently gone through this process but hope I understand that trying to balance and manage the situation your loved one finds themselves in through the latter stages of the illness is no longer about the fight, but doing the best for them.

Steve

X

[J_T]

Oh Steve, not crass at all. You are a wonderful, wonderful man. I have nothing but admiration for you.

You are recovering from a very major operation yet you can still think about others and what they are going through.

Your post says it, exactly. Thank you for understanding.

Julia xxx

[marie souter]

Hi Guys,

Am getting more and more annoyed at Corrie st ... I just really don;t think its being portrayed as well as it should, if they had highlighted her symptoms (as they are key to early diagnosis) this would've proved invaluable and may have saved lives .. but none of that .... down to the wanting to kill herself as she might be harold at some point .. the message seems to be, as soon as you;re on morphine you become a gibbering hallucinating wreck so you might as well kill yourself .. what kind of message is that? I can tell you in June 3 mths after diagnosis my mom DID end up on morphine and yes it did that, but the meds were changed this was a temporary glitch, she recovered and was out shopping the following week totally herself .. it doesnt have to be this way IF you have the right people looking after you, the people who say, in the words of bart simpson, this sux change it...there are alternatives to this and this isnt being portrayed, her friend was on morphine then a few episodes later she was passed .. COME ONE CORRA do a better job ,, if you are going to nobley promote such a cause then do it right, make a difference, save lives .. just saying Hayley has it isn;t enough info to make THAT difference that PC awareness needs .. if people on here read my post labelled 'tired' you will see where you can order PC awareness posters from the PC team to pass on to doctors surgeries, chemists and hospitals .. misdiagnosis is the worst part of this aggressive disease it has the least survival rate of ALL cancers and that is purely down to misdiagnosis .. these posters could potentially save lives x

Huugz

Marie

xx

[J_T]

Like Marie, this is annoying me greatly - yes I know its only a soap, but PC is an important message.

So Hayley had her first chemotherapy - I think she's Stage II, that's why she got the (failed) Whipple? So its not Folfirinox clearly, no pump, but she comes home after her first session and starts sewing a wedding dress and seems to have finished it in double quick time? Is it really like this for some people with pc? I know some folk on here are quite well but straight after a chemo session?

Maybe its just because Ray was never really well, but even the ones at chemo sessions (with other cancers) who looked as fit as, talked about how they had to pace themselves.

Roy and Hayley have acted very well but the storyline is very disappointing.