Cancer in a Cold Climate

by Enid O'Dowd

  We had only realised that this bill was being put through in the last few weeks and had little time to organise proper lobbying in opposition to it. As many supporters are sick and their families tied up with caring, they could not devote precious time or energy properly to the campaign to amend the bill.

  Nevertheless, we lobbied extensively and, those who could, attended the debates. Labour and Fine Gael had put down amendments to the Luke’s section of the bill and had tried to negotiate with the Minister to accept them. At the Select Committee on Health stage in the Dáil which we attended, the Minister said she would support one of the amendments to be put down at third stage. This amendment would involve the HSE having to come back to the select health committee for approval on any change of use for Luke’s. However, a week later, in the Dáil the Minister reneged on that commitment which is on the Dáil record.

  In the Seanad on 6th July, only one government senator attended the excellent debate to hear the arguments as to why St Luke’s should be retained as a cancer centre of excellence. The government parties only entered the chamber for the vote-taking and, not having even had the good manners to listen to the voice of the people; the amendments were summarily voted down and defeated. Both in the Dáil and Seanad, the amendments were lost by only 4 votes.

  Since the decision to close back in 2005 figures for projected new cancer cases have rocketed and the new cancer centre of excellence being built at St James will not be able to cope with the numbers (we are enclosing relevant articles giving background).

  The only logical thing to do is to retain St Luke’s as a satellite of St James’. This would cost the taxpayer nothing extra as St Luke’s is financed by the HSE in any case. In fact, in could be argued that the closure of St Luke’s will cost the taxpayer more money. Due to the high esteem which St Luke’s is held in, in the minds and hearts of the public, over €26 million has been voluntarily raised by the public since 1980 to help in the running of the hospital; it is doubtful this money will be raised when St Luke’s ceases to exist.

  We would be happy to meet you to explain our case further. Cancer patients and their families deserve better than this. This is not democracy. Under the original constitution there was a provision for petitions and a petition with 150,000 signatures would have had to be considered.

  Cancer is a long-term, often terminal, illness — this Bill has upset beyond measure patients who are stressed and worried that the hospital they love and trust will be taken from them to facilitate a hospital that has no track record or experience in delivering the services they already get so excellently. Ironically, on the day the Bill was finally passed, news broke of the appalling treatment and death of a cancer patient in the ‘centre of cancer excellence’ in Galway.

  We are not asking for the world. We are imploring you to please reject this Bill so that this government does not destroy this magnificent symbol of the caring, loving Irish society that you and the Irish people so cherish. It is a rare thing. St Luke’s works and the people of Ireland know this- there is no reason why the government’s plans to centralise cancer services in designated hospitals cannot go ahead without interfering with the independence of St Luke’s wonderful healing and holistic services.

  It would be an act of treason to close this hospital against the wishes of the people.

  President McAleese. Please save this national treasure.

  Yours sincerely

  On Monday 12 July we received an emailed letter from Adrian O’Neill, Secretary General to the President saying that the President had already signed the Bill under Article 25.2.2. of the Constitution. A copy of this letter is included in the Appendix.

  We now know that under the constitution the President cannot sign a bill until he/she has had it for five days and then must sign by the seventh day or refer it to the Council of State or to the Supreme Court. It makes sense that the President has time to consider a Bill before signing.

  Article 25.2.2. states that the government, with the consent of the Seanad, may request the President to sign within five days but it does not stipulate the circumstances in which the President may be asked to sign quickly. Presumably the article was meant to allow for an emergency situation perhaps relating to law and order or to a situation where the President would be out of the country for a while. We checked her schedule and this was not the case.

  We discovered later from a retired senior civil servant that the use of this article is relatively common. The use of the article in this case was surely an abuse of the office of the President. What could possibly justify the fast tracking of such a Bill?

  What difference would a few more days have made?

  IV LIFE IN ST LUKE’S: MORE PATIENT STORIES

  Life in St Luke’s: More patient stories

  ‘I honestly don’t know how I could have survived in any other hospital with the claustrophobia.…’

  In August 2008 I began a series of tests that would prove positive for nasal pharyngeal stage two cancer. I was diagnosed at the Royal Victoria Eye and Ear Hospital and they arranged all my tests, for that I owe them a great deal of gratitude.

  Unfortunately they didn’t have the facilities for treating cancer, so I was referred to Professor Hollywood in St Luke’s. I had scans and dental treatment in different hospitals all of them around Dublin city, all of them in built up areas. I must say the staff in all hospitals treated me with kindness and understanding, but I felt very caged in all of these. I had developed claustrophobia and began getting panic attacks. Up until then I would have being terrified of the thought of having to stay in St Luke’s. How wrong I was.

  One of Dr Hollywood’s team asked me how much I wanted to know, and I said as little as possible and he was true to his word. But he did reassure me that what I had was treatable and to stay positive. I spent seven and a half weeks in St Luke’s and on two occasions I was sent to St James for hearing tests. Each time I could not wait to get back to St Luke’s; to me that was home at that period of time. I remember the radiologist singing happy birthday to me in November 2008 when I was 52.

  The atmosphere in St Luke’s was at all times relaxed. The nurses and a lot of the doctors insisted you call them by their Christian names and that made me feel I was among friends. My wife and daughter spent a lot of time up there with me and my wife even stayed in the lodge free of charge for a week and could have stayed longer only her own health problems needed to be looked after. I tested positive for the MRSA bug before going into hospital and that scared me almost more than the cancer but all the staff put me at ease and encouraged me to go for walks around the garden when I was strong enough. Other times I looked out my window but I always felt a sense of freedom. I honestly don’t know how I could have survived in any other hospital with the claustrophobia .I had to go to St James for swallow tests about six months after finishing treatment and I got lost about three times, all corridors and halls, and I don’t remember a window anywhere.

  I attend St Luke’s at six month intervals out patient Department to monitor my recovery and I am amazed that some of them remember my name. Thanks to all of them. I am now eighteen months cancer FREE. It brings a tear to my eye when I think of them closing St Luke’s, because they made me feel loved and wanted at a time when I didn’t even want myself.

  James O’Brien

  Ashford, Co Wicklow

  ‘She said Luke’s was more like a hotel than a hospital,…’

  How do I start off a story that would change my life and that of my family’s forever? I will tell you about my Mam, Mary Malone, a wife, a mother, a daughter, a sister, an aunt and a friend. She was the centre of our world, the link that held our family together. Just the thought of losing her would send a shiver through me. But that didn’t happen to us. It happened to other people…that was until October 2005.

  Up until September 2005, we were busy planning my wedding to Noel. We were busy fussing over the normal things, a bride and her mother do. When the day arrived she looked and felt great
. After all the wedding hype had died down, Mam said she had a sore breast; she went to her GP and he treated her for mastitis and told her not to worry.

  Over the next two or three weeks she was getting concerned as it wasn’t clearing up. Also her dog kept sniffing her. He was constantly behind her crying and pawing her. She remembered seeing a programme before about how animals have the ability to sniff out illnesses in people and this worried her a little more, so she went back to the doctor and demanded a mammogram. She was 56 at the time so she knew it wouldn’t do any harm.

  She got her appointment through very soon after that and attended the Docas Centre in Drogheda for the mammogram. They told her that if every thing was OK she wouldn’t hear from them, so as you can imagine she dreaded a call from the hospital.

  A week later on a Wednesday morning, me and mam were going to Ardee. While we were waiting for the bus I asked her if she had heard from the hospital yet and she said no and touch wood she wouldn’t. A few minutes after that, the phone rang and she noticed the 041 number, she said, “this is it, it’s the hospital, there is something wrong”. I remained silent and hoped for the best. They asked her to go up and discuss the results and to take someone with her.

  Very soon after that my Dad, my Aunt and Mam travelled back to the hospital. She was told she had breast cancer and she needed a biopsy and further tests to determine how far advanced it was. The waiting list for the biopsy was quite long but amazingly when the doctor rang over to make the appointment, they had a place available that day. After that everything went by so fast. It was confirmed she had inflammatory breast cancer, a rare, fast spreading and very aggressive form of cancer that affects a small percentage of women. They told her the best option was to remove the affected breast -a mastectomy.

  I remember waiting all day for her to come home but I knew the minute I seen her she had cancer. The fear was there all along but I didn’t want to say the word CANCER because that meant death. I ran out to the back garden crying and she followed me out, hugged me really tight and said that we would get through it as a family and to take each day as it came. I was surprised that she was more concerned about Dad, my brothers and me then the fact that she had cancer.

  We cried together and I can honestly say that I had never felt as close to her in all my life then I did at that moment. The whole family was totally devastated. This was the worst thing that could happen to us. But she insisted that everything remain as normal as possible and we should talk everything out. That was her way of coping; she needed to know everything and wanted the answers to all her questions.

  A few days later, she was in hospital having her left breast removed. The surgeon was happy and said the chance of a full recovery was high as they had caught it very early. Of course she would need Chemo and Radiotherapy but that was normal.

  She came home and was doing quite well. Soon after that she started the follow-up treatment. We knew she would lose her hair. But didn’t think it would happen so fast. When it did happen, a hairdresser who was my brothers friend Katie came and shaved it all off. Mam said that she hated it falling out in bits and pieces so the best thing was to tackle it head on and take it all off at once. She threw us all out of the kitchen and Katie got to work. Afterwards while talking to Katie she told me that they had both cried the whole way through it. When they were done, Mam came out and I have to say she looked amazing, it actually suited her. A cousin who is a biker arrived over to the house with a few bandanas that he had got at a biker rally that day. So that was what she wore for the next few months

  As part of her treatment, she had to have Radiotherapy in St. Luke’s five days a week. She decided that she wouldn’t be fit enough to travel there and back every day, so she moved into Ward A in Luke’s. She would come home on a Friday and go back on a Monday morning, I can’t recall exactly how long this went on for but it was somewhere in the region of seven to nine weeks.

  I remember the first time she went to Luke’s to be assessed. I went with her and she was grand until she got to the front door, then she broke down and said that she never believed that she would have to come to St. Luke’s. We sat down on the bench outside and held hands while she composed herself. After that she walked in head held high and that was that.

  She looked forward to coming home on Fridays. A couple of times she had an infection and they wouldn’t allow her to travel home, and she hated that. When that happened we would go up her. She made so many good friends there and continued to correspond with them when she came home and of course she lost some too. But she never gave up hope of her own recovery.

  A few months later she was doing really well and it was decided that she should have her second breast removed. And so it started all over again.

  She came to love St Luke’s; she even said it was more like a hotel then a hospital. She said the patients were not treated like another number on their lists. While she was home for a weekend, she made a doll’s bed, which was put on show in the reception to be raffled. She made nearly €1,000 from the tickets and asked if the money could be spent on the gardens. She loved them. She said that it was very therapeutic to sit in the gardens and think and enjoy the fresh air. She loved to play pitch and putt with the other patients and on one occasion I remember going up to visit her and she took me outside to watch the staff play football. The European cup or something was on at the time and the staff had broken themselves up into different countries and held a tournament. They all played - from the doctors, consultants to the cleaners, no one was any better than anyone else.

  Looking back it really is a special place. The meals they served Mam were first class and if we were there, we were offered meals as well. The hospital itself was spotless; I don’t remember once seeing any rubbish on the floor or dirt on the walls. The staff takes so much pride in their work; it is an absolute credit to them. It was like a home from home. I remember mam coming home on Fridays with something new she had made during the week - from flower arrangements to silk scarves and painted stones and glassware. She loved the banter in the work room and making things and chatting with the other ladies would pass her days. I would ring her a few times every day and sometimes she would say “can’t talk now pet, I’m on my way in for a massage, or a manicure or pedicure”.

  She also attended counselling sessions there and asked me to attend a few with her. Sometimes I got the feeling she was preparing me for a time that if anything happened to her.

  She had her own room because she was prone to infection and sometimes the nurses would joke with her that her phone never stopped ringing. She would laugh and say that she couldn’t get any peace and quiet with mobile going all the time but she loved it. She knew how important she was to us.

  Once the treatment was completed she was back home. About eight or nine months passed and she received regular checkups and Chemo. She was put on Herceptin, the new wonder drug that was out at the time and she would say how lucky she was to be getting it. She went back to Luke’s for more treatment. While she was there she decided to throw a surprise 60th for my dad. I remember her travelling home from Luke’s on the Friday and being on the phone to me telling me how to make chicken curry step by step. It was so funny and I was panicking, trying not to make a mess of it and she kept saying don’t panic, it will be grand. She had a great night and for once the cancer was forgotten about. Her mum was also about to turn 90 around that time so we decided to have a family mass in my house for her. All mam’s family was there and she enjoyed it so much. Her wig was driving her mad and at some stage during the party she whipped it off and threw it in the corner.

  A while after that, all the treatment had finished and everything was sort of going back to normal. Then she suffered a mini-stroke, so back to hospital she went and remained there for a few days. She was then in the Mater in Dublin for a while because they wanted to check different things with her. I can’t recall what or how long she was in but she was very anxious to get home. When she did get home she was good for
a few weeks but we noticed that she was eating very little and that progressed to nearly nothing. So it was back to Drogheda hospital with her. We also saw the cancer was growing back on her skin and was growing very fast. It looked so sore and was a very angry dark colour. It must have been so painful for her but she hardly complained. That was the beginning of the end. The doctor asked to speak with my dad and I went with him. We sat down in his office and he told us that we had a week at most left with mam. This to me was unbelievable. How could that be true when she was sitting up in bed, laughing, knitting and chatting with the other patients? I don’t remember exactly all that was said but I do remember dad saying that we were taking her home. She knew by looking at us when we went back into her, we just sat there holding her hand. I can’t explain that feeling; I was worried for her, for dad and the boys and for me. How would we cope without her, I was the eldest so I felt it was my duty to worry for everyone. I was afraid I couldn’t be there for them all like I was supposed to.

  The next day I went back to the hospital so I could travel home with mam in the ambulance. I remember thinking , I am taking my mam home to die, I tried to hide my face so she wouldn’t see my tears but I never could hide anything from her and she seen right through me. We had a wee chat and she said she was delighted to be coming home to us because that was her wish to die at home in the place she loved with the people she loved more than life. She was so strong.

  When we got her home she was all smiles and asked for a decent cup of tea and a cuddle from her little dog. It was hard watching her decline, but each day the house was filled with family, friends and neighbours and she loved that. Dad, the boys and I would take turns sleeping on the sofa beside her. We had many happy, funny and sad chats with her and both laughed and cried. Our emotions were all over the place. She gave us each a poem that she had written. It was a special gift that we would treasure forever.