THE OPERATION TO REMOVE SHAME FROM OUR HEALTH SERVICE WAS A COMPLETE SUCCESS!!!
Heard this item Joe Duffy's Live Line Tues 09-01-07
while the nation held it's breath.
Don't let this brave lady's plight be a waste of time...Email this story to your friends
and email your local politician asking him/her how did this happen.
Better still...Copy and print this story and leave a copy in the waiting room of your local clinic and anywhere else that you think appropriate.
I'm going to die because of hospital waiting lists
(Maybe they thought this would never happen to them. Or maybe because so many have private health insurance they just didn't care because they were alright, Jack...Rosie)
Dear Joe,
Today I had my 12th session of chemo. I got to talking to the partner of a man who was also getting chemo. She told me that when her partner's GP requested a colonoscopy for him he was put on the waiting list. She then phoned the hospital and told them he had private health insurance and he was seen three days later. He had bowel cancer that was advanced, but had not broken through the bowel wall and spread to other organs. She said the tumour was the size of a fist and what made him go to the doctor (apart from her nagging) was he started to lose weight rapidly. Thank goodness they got it in time and he's going to recover.
I then came home, flicked on the tv and got into bed. The first ad on the tv was from the government telling people that bowel cancer can kill, but not if caught in time. If Bertie Ahern or Mary Harney or Michael McDowell were within reach I would have killed them. Literally. I'm not joking.
I don't have private health insurance. It's a long story, so I'll start at the beginning.
I've suffered from digestive complaints for years. It started out with being unable to eat in the mornings or when my stomach felt tense. I'd feel too queasy. Then I got heartburn after just about everything I ate. I lived on Rennies. Then, in 2005, I got a lot of diahrea and after a few months it became constant and blood accompanied some of my bowel movements. I went to my GP clinic in the Summer of 2005. Probably about 2 months after the blood started appearing. I look back now and feel stupid for delaying for 2 months, but I wasn't sure if the blood was caused by piles, which my late mother suffered from. I was 39 years old and had read in books and heard a doctor say on tv that bowel cancer doesn't affect people under 50. Anyway, my normal GP was on holiday, but I saw his colleague, and she immediately sent a letter to the local hospital requesting a sonogram and a colonoscopy. Within weeks I was called for a sonogram and was diagnosed with a gallstones. That explained the queasiness and the heartburn. I expected to soon be called for the colonoscopy. I waited through the autumn, then through the start of winter. No word on the colonoscopy and no word on when my gall bladder would be removed.
In November I started to get serious lower abdominal pain after eating. I phoned the consultants secretary and asked if I was on the waiting list. She assured me I was and would be called soon. In December I started to rapidly lose weight. This definitely wasn't like me! I love my food, Joe. I phoned the hospital again after Christmas. Again I was told that I was still on the list and would definitely be called soon. (I later found out that that consultant had retired and they had just hired a new one). Joe, from November to the end of February I was in agony. Apart from the pain and diahrea I was tired all the time. I'd literally got out of bed to go to work at 4.30 in the afternoon. Came home around 10.30pm, ate my dinner (I couldn't eat before work because it'd make me too sick to do my job), tidied the kitchen and went to bed again. I was miserable.
Finally, on February 28, 2006, four days after I turned 40, I was called for a colonoscopy.
I woke up in the middle of the procedure and saw on a large screen, them probing a blob on my colon. They were taking a biopsy. But I didn't have to wait for the results. I knew what I had. Soon after I met my wonderful consultant, Dr George Nassim. What a gem he is. Friendly, compassionate and funny on top of being a great surgeon. I felt like I was in good hands. I didn't panic for more than a few hours after I was told that I had cancer. They can do loads of things to save cancer patients these days. I was young and strong. I'd been a vegetarian since I was 16. I ate mostly healthy foods, although eating at night was a serious no no when it came to my weight. I went for walks a few times a week. I felt I could beat this.
I was booked in for surgery to remove the tumour. I was given a stoma, which means I'll have to poop in a bag for the rest of my life. I found that really difficult to handle. More difficult than the cancer sometimes. I was in St Lukes hospital for over 50 days last year. (I had to have a second surgery due to complications) Recovery was hard, but I did it. I shared a room with two lovely women who also had cancer. They have since died. In another ward I was in I was next to another woman who had cancer. She died too. The staff at St Lukes in Kilkenny are the most kind, hardworking people I've ever met. In March, in between surgeries, I was sent to the Mater in Dublin and had a porto-cath put in for putting the chemo through, and a PET Scan to see if the cancer had spread. If it hadn't, I'd live. If it had spread to other organs, I'd die. It had spread to my lungs.
I felt bad enough to go to the doctor. She did what she was supposed to do. She told them I had diahrea and blood from my rectum. But what could they do? So do lots of people. Should I have skipped the list ahead of those other people with the same symptoms? I don't think so. Should there be a list so long that it puts people at risk of dying? No. Definitely not.
I know in my heart and soul that when I started to feel really, really bad, especially in from December to February 2006, is when the cancer broke through the wall of my bowel. Of course I can't prove it. But I know. Because it broke through the bowel I have been given 2 to 4 years from diagnosis to live. The chemo is to prolong life, not to save it. I have 3 years, tops, to go. Despite that, I'm going to try my best to make it for 5 more til my youngest turns 18. He needs me too much now. My husband has suffered right along side of me in his own way knowing that the woman he loves will be dead soon. My 18 year old daughter has been told and has gone quiet and doesn't want to talk about it. But I know she's scared. I haven't told my 13 year old son yet. He's too young to handle it. The South East Cancer Foundation in Waterford have been very helpful and will help us when the time is right to do and say the "right" things.
I don't blame the wonderful people who work in St Lukes in Kilkenny. They work with what they are given. St. Lukes has the best A+E unit in the country. I had to use it three times in 2006 and twice with my son (nothing serious, thankfully). What did the government do? Threaten to shut it down. They also threatened to shut down the maternity unit AFTER spending millions to improve it!! That would mean Carlow women would have to travel to already overcrowded hospitals in Dublin and Kilkenny women would have to travel to Waterford, which is grand if you live in South Kilkenny. The rest could lump it and birth at the side of the road if necessary.
Twice I had to listen to two women die next to me in hospital because there's no place for people nearing death and their loved ones to go to die and grieve in dignity.
My time in the Mater was dreadful. I was terrified I'd pick up MRSA because it was filthy. I was put on a ward with cardiac patients, mostly men, who because of their ill health were unable aim too well when they went to the toilet. Once when I used the toilet my pajama bottoms soaked up urine up to my ankles. Even though I was still sick and weak I still tried to hover over the toilet so I wouldn't have to touch it. I wasn't able to hover and hold up my pajama legs at the same time. I had just given my sister-in-law two sets of pj's to take home and wash and had nothing to change into. I rinsed them out in the grimey sink and wore them damp until she returned the next day with clean ones.There was excrement stuck to the sides of the toilet for days at a time. Water flooded the shower room, soaked my clean pjs and towel that were on the floor outside the shower and ran out into the hall. After that happened the first time I learned to take a chair in to the shower room to put my stuff on. At least I knew THAT floor got water and soap put on it regularly. The man in the bed next to me, who had suffered a triple bi-pass was served up a greasy fry for tea when he had specifically ordered fish because it was healthier. On the third day he refused to eat it when they wouldn't give him what he had ordered and went without eating on principle. I was vegetarian and so was served cheese on crackers and cheese sandwiches (fake cheese slices on white bread) for all but two meals. They brought one of the two nicer meals when I was fasting and not allowed to eat it. My suspicion is that the catering has been privatised, although I could be wrong. The staff, apart from one really nasty nurse, were lovely.
Should I blame anyone for my hard luck? I've thought about it over the last year and have tried to be reasonable about it. After all, I waited to get Christmas over with before I phoned the hospital for a second time asking to be seen. But today, when I heard that a very nice man who was in the same, if not worse condition, than me when he went to his GP is going to live because he had private health insurance and I'm going to die because I didn't, I had to bite my tongue. I'm happy he's going to live. He deserves to live. But so do I. Then I came home and watched that ad which told people to hurry up and get checked out for bowel cancer because it will save their lives, and I fucking lost it.
I've finally reached the angry stage, I guess. Who am I angry at? I'll tell you, Joe. The health service has been in the hands of Fianna Fail and the PD's for years and all they can think to do is put resources into privatisation. They don't have the ability to change structures in the public sector that would put more resources toward patient care. But it's not just the politicians. I'm also angry at every single voter who voted for Fianna Fail and the PDs because they thought they'd get a few more shillings in their pockets but were too greedy and stupid to realise that that money they saved in wage taxes would be made up with stealth taxes. We all knew before the last election what their health policies were and the majority of people ignored this and voted for them anyway. Maybe they thought this would never happen to them. Or maybe because so many have private health insurance they just didn't care because they were alright, Jack.
I never dreamed I'd get cancer, let alone die from it. But I was wrong. My message to anyone with symptoms of bowel cancer is go to your GP immediately. If you, like me, don't have health insurance, pester them until they hate you, go to your politicians and beg them to help, go to the media, get a solicitor to threaten to sue the government and the hospital if they don't get you in soon for a colonoscopy. Otherwise, the people who love you might lose you and you'll not get to do all the things you planned in life.
I'm writing to you because the way this country is run leads me to believe that contacting a radio show is the only way to try to change things like this. I hope that when Ms SUV and Mr Builder goes into the voting booth, they'll think about me, my husband and especially my children. My husband is a decent man. He works full time in a good job and I worked part-time in a job I loved that helped people, but didn't pay well. It depended on government money to help women and children in crisis, so of course couldn't pay me well. We know what Bertie, Michael, Micheal and Mary's priorities are.
Despite 1 1/2 incomes we couldn't afford VHI or Bupa. But even if we could have we wouldn't have gotten it because we believed (and still do) that all people should get good care despite their incomes. We thought jumping queues was wrong. We're socialists...just like Bertie. Ha Ha. Now I feel like vomiting and it's not the chemo!
From a Cancer Patient in Kilkenny.
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This story is from 2004!!!
Love for a Mother
Here is my story and I'm very happy for you to use it on your website because, like you, I think that how our A&E is run is a scandal. But back to the story;
Although now 40, I still have a childlike wonder and fascination about Christmas. It is my favourite time of year. Married with a couple of children, now Christmas is even more special and more focussed on family.
My mother, a widow for 20 years, is elderly, going to be 80 in January, and she has been suffering from a worrying loss of memory lately. It seems sporadic but, living abroad, when your primary contact is over the phone, I can't help worrying about her. I have been living abroad for about three years, two in Scandinavia and now in London.
So, when we eventually arrived home to my mother's house on December 23rd 2004, it was a relief to see her looking so well. We were staying there for Christmas. Myself, my wife and our two children. We were centring our Christmas around my Mum and she really deserved it. She idolised my two children and I always felt a strong surge of guilt for living away from home and depriving Mum of the regular contact with her grandchildren which she might have expected.
She was overjoyed to see the kids and sat with them on her knee, she played games with them and asked questions about their school, their friends, their swimming, their favourite books, what they were expecting from Santa. And, looking at my Mum so happy with her grandchildren and them equally happy basking in her adoring attention, I thought to myself, you know what? this just might be the most special Christmas ever.
We had a wonderful family dinner and a few guests arrived to see us and Mum. She was delighted to see everyone, she was animated, lively and retired to bed tired and happy at around midnight. The next morning, Mum was up early and she told me that she had been awake all night - she had been wanting to go to the toilet and had gone to the bathroom countless times during the night but had been unable to pass water. It was still early and so, not wanting to spoil her Christmas celebrations with such discomfort, I phoned her GP and we drove up there and presented ourselves in his waiting room just before 9am.
The doctor determined that Mum's bladder would have to be expertly drained - it was distended. This would require a short visit to hospital, to outpatients, he said. He gave me a letter to bring in, he phoned ahead to let them know we were coming and dispatched us off to James' Hospital. Not a promising start to Christmas Eve I thought but maybe we'll be back before lunchtime.
We arrived to James' before 10am and were directed to A&E. I tried to persuade the receptionist that we didn't want A&E because my Mum is under the care of a consultant in James' and that we had a referral letter - hence we were neither an accident nor an emergency. But she was not to be swayed and we made our way into A&E. I assisted my Mum into the room which is a spartan, bare waiting room with about 60 plain plastic chairs and several security guards. I got her comfortably seated and noted that there were about 15 potential patients already there. By now, Mum was in considerable discomfort not having been able to pass water for about 16 hours.
I went up to the heavily barred reception window and introduced myself, explaining my Mum's condition. They took the GP's letter and motioned me to return to wait with my Mum. We sat patiently for the first two hours but by now, Mum was rocking rythmically to and fro on her seat clenching her thighs with the strain. What struck me most forcibly about the waiting room is that the practice of medicine and patient care has now been relegated to a lesser status behind the primary issue of security. There were several security guards and no evidence of any medical staff. It felt more like Wheatfield than James'. Around lunchtime, my mother's name was called and we were marched over the threshold separating the waiting room from the A&E section. A diminutive Phillipino triage nurse was reading my Mum's referral letter. She brought us into a small cubicle. She made no effort to make my Mum feel at ease, she barked out instructions for an intimate examination with a sublime lack of finesse. My Mum complied uncomprehendingly and tried to communicate her excruciating discomfort. The nurse was impassive and escorted us back into the waiting room without any hint of how Mum's treatment for this acute condition was likely to progress.
Suddenly we were back to square one in the waiting room again - and now nearly four hours in the hospital. But the waiting room was now a hive of activity as the security guards roughly deposited a man who was trussed up and bound with cord with his hands cuffed behind his back. he was put slumped close to where Mum was seated and he rocked side to side cursing and swearing menacingly at anyone in his vicinity and Mum swayed to and fro beside him, totally oblivious to everything except her own pain. It was then I thought, maybe this won't be such a magical Christmas after all.
Another two hours passed and by now no-one had spoken to us but the waiting room continued to fill up with the Yuletide debris; people who were incapacitated with drink and drugs. One man stood up and pointedly lit a cigarette only to draw the wrath from another guy who bluntly told him to 'put the f...... thing out!'. Whereupon the smoker invited the other guy to 'come and f..... make me!'. This didn't do a lot to contribute to the Christmas spirit for the rest of us.
All the while, my Mum suffered in silence and it was now getting on for 6pm - we had been there for 8 miserable hours. What a way for her to spend what proved to be her last Christmas Eve. I was beginning to get really annoyed by the lack of professionalism, by the delay, by the rudeness and by the absolute indifference shown to my Mum. I had my arm on her shoulder when I noticed that there was a stain of moisture beginning to appear on her trousers. She was obviously leaking despite her inability to pass water. It was then I thought, enough is enough. To see your own mother suffering for 8 hours being ignored by the medics and now sitting in her own urine. My mother deserves better than this (anyone deserves better than this). I stood up and approached the hatch demanding to see someone in authority - and not a security guard. The receptionist (who I acknowledge has a difficult role) prevaricated as long as she could until she saw that I wouldn't be dissuaded. 'That's my mother over there, on Christmas eve, a week away from her 80th birthday, sitting in her own urine for the last 8 hours. Would you leave your mother in that condition? Would you stand over this as an example of the standards of care for St James? I demand to see a doctor or a nurse - NOW!'
This eventually did the trick and out came the Triage Nurse again. She brought me into her cubicle again, leaving my Mum still outside and pointed out that my Mum had been prioritised (by her) as least in need of attention on a scale of 1 to 3. That was why everyone else was being treated ahead of her. I insisted that my Mum be seen by someone (with appropriate medical training) immediately and sure enough she was.
At 10 pm, we were invited in again to the treatment area, apart from the staff, I think we were the only sober ones. Mum was seen by a very nice staff nurse who put a catheter in and drained mum's bladder. We were allowed a small space bordered on three sides by curtain. But at least Mum was getting some treatment after her marathon, 12 hour wait. The catheter worked like a charm, emptying her bladder, and Mum felt much better. The next step in the treatment was to fill up her bladder again and see if she could relieve herself naturally, without the catheter. I asked the nurse why she thought Mum had suddenly got this problem but she didn't know and wasn't going to speculate.
We were now approaching Midnight on Christmas Eve and Mum was tired, ill and confused. This day was one she had long looked forward to and it had turned into a nightmare which wasn't over yet. While she was on the drip I had a little walk around the hospital. What a place to be on Christmas Eve at midnight. Mum and I had missed the whole day with the kids (who are still devout believers in Santa). We had missed going into town and bringing them down Grafton Street, we had missed bringing them to Mass in Clarendon Street and listening to them join in with the carol singers. We had missed giving them their bath and putting them to bed. We had missed reading them their story and then hurrying downstairs to get the place ready for the morning.
But then I felt that we had experienced something together, we had seen a side to Christmas seldom revealed. We'd seen the hard, unrelenting, unhappy, miserable side. I wandered around the new atrium and felt a pang for the people for whom this is a regular haunt. I felt a pang for the people who have nobody to share Christmas with, for the ill, for the harassed, for the lonely. And then I returned to see how the patient was doing. Now 1am and Mum was still unable to relieve herself despite the once-again full bladder. A sharp-eyed, young, female doctor came in. 'We are discharging your mother' she said. She had the air of someone for whom a change of mind is not a regular occurrence.
'Does that mean, she's OK?' I enquired. 'Do you know what's wrong and is she better?' I looked over at my Mum who appeared drained and exhausted.
'No, we don't know what's wrong but she is being discharged' she confirmed obviously unwilling to discuss the matter. She seemed to be signalling that this was the end of our little chat.
'Doctor, my mother is nearly 80, she has been here for 14 hours, she still has the complaint she came in with; you say that you don't know what's wrong but you're prepared to allow a woman in this condition, of this age and in this much pain just leave at 1am on Christmas eve?'
'We can't admit her' she said tersely. 'Why not?' I asked. 'It needs to be done by a consultant and there is none available to sanction her admission' she replied.
'Doctor', I said' if you allow my mother to leave here with an acute condition for which you neither know the cause or the remedy, isn't it inevitable that we will be back here again tomorrow - and I don't think my mother would survive another 14 hour wait in those conditions. I am happy to take my mum home for Christmas as long as I have an assurance from you that we won't need to return here tomorrow.'
'I can't give that assurance' she said tersely and turned to walk out.
'Doctor, if we have to come back here tomorrow, Christmas Day - can you at least make sure we don't have to go through the A&E route?'
'No, I can't promise you that either' she said and this time she really did walk out.
After 30 minutes a nurse appeared with a variety of do-it-yourself catheters and bags. 'You're going to be in charge of your Mum's bowel movements she said.' I was horrified. 'yes, she said, you'll have to put this in and change the bag regularly' It was then I knew for certain that this wasn't going to be the Christmas I yearned for. Poor Mum was dozing, oblivious to all this as the nurse briefed me on how to use the disposable incontinence equipment. It was now 2am, 16 hours since we had arrived.
Shortly afterwards we left. Mum was assisted into a wheelchair and wheeled to the door. I fetched the car and got her seated. It was Christmas day. A flutter of snow was beginning to descend. We drove home. Mum was totally exhausted, confused and pretty dispirited. She entered the house trailing the tube from under her night-dress and carrying the bag as if it were a box of chocolates she was about to hand over at a dinner-party. She really didn't understand what had happened during the day and I knew she didn't know what the catheter was for. We peeped in to see the children sleep and retired exhausted to bed. But there was to be no sleep for my mother - within 3 hours of arriving home, she had inadvertently pulled the catheter out - leaving her in agonising pain.
I had got a direct phone number for James' and dialled it at 5am. 'You'd better come straight in they said. We drove through the snow and returned to the familiar surroundings of the waiting room. Dawn on Christmas morning. Groundhog Day.
My mother never left that hospital alive. She died there in February from complications following surgery to remove an ovarian tumour which had been pressing up against her bladder. So, a condition not serious enough to get her seen by a nurse was ultimately serious enough to kill her.
Warm Regards
Peter
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