SaraBurke.com

Let’s not forget one great woman on International Women’s Day

Posted in Blog by saraburke on March 8, 2010

It is two years and just two months since Susie Long wrote an email to the Joe Duffy show. Its worth rereading on this International Women’s Day as the points she so eloquently and bravely said are as pertinent today as they were when she wrote them. Susie Long died on 12 October 2007. Her legacy lives on….

I’m going to die because of hospital waiting lists

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!

Now some things have changed since Susie wrote this powerful e mail. But many have not. The fundamental point she was making – that public patients have to wait longer for what can be life saving diagnosis and care is still true. If you can afford to pay privately, you can skip the queue into the public hospital system.

Progress has been made in cancer care and what Tom Keane ably did in breast cancer care and the NCCP is doing so in lung cancer and bowel cancer is provide one tier access and treatment in cancer care. However, there are areas which are out of the control of cancer services such as colonoscopies where two tier access remains a problem. The HSE has prioritised reducing waiting time for colonoscopies – mostly due to the public and political pressure which resulted from Susie Long speaking out.

According to the most recent performance report for the HSE – December 2009 –

waiting times for urgent Colonoscopies are now being reported on a monthly basis, and this item is included as a key performance indicator for 2010. 10.4% of those on referral for urgent colonoscopy (59 people) are waiting more than 28 days for an urgent Colonoscopy procedure in the week ending 17th January 2010 based on returns for 30 hospitals.

This is progress – Susie Long waited seven months for a colonoscopy – but still 59 people were waiting for more than the target of 28 days and I wonder if there are more than 30 hospitals which should be included.

Anyway for today, lets remember the great woman that was Susie Long.

Advertisements

One Response

Subscribe to comments with RSS.

  1. Rebecca said, on March 11, 2010 at 11:50 am

    Thanks for posting Susie Long’s letter. I have read it before but it still makes me cry. Susie Long’s story is a reminder how important it is to get our priorities right–the stakes are too high for complacency.


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: