A Real Supergran

I feel very out of touch with the blog world.  It’s been a roller coaster week here.  It’s got to the stage where when the phone rings, my heart falls.  No news, really is good news.

It all started on the day of the Heineken cup rugby final when my father was rushed to hospital by ambulance with chest pains. After an anxious wait in A&E, news came through that his pain was non-cardiac in origin and so once my dad’s condition had stabilised, he was discharged back to the nursing home.

The following day, my mum-in-law’s health suddenly deteriorated and we were told that her end was nigh. Thus begun a round-the-clock family vigil at her bedside which lasted for five days.  She died peacefully on Friday surrounded by her nearest and dearest. Her funeral will take place next weekend when family and friends will gather from around the world to celebrate a dear life. She was a wonderful mum and a real supergran and will be deeply missed.

In the midst of all this, my son Robin woke last Friday morning with a very swollen foot. He was due to leave at lunchtime on a walking holiday with friends so we had to act fast. His problem was solved by a visit to a VHI SwiftCare Clinic which had him assessed and processed in less than one hour and on his way to Kerry. The following morning Robin phoned to say that the swelling had moved up his leg and a phonecall to SwiftCare confirmed that he should return home.  I collected him off the train several hours later and ferried him back to the clinic for re-assessment. Again, Robin was seen very quickly and thankfully, this time the news was better. He was instructed to rest-up and allow the antibiotics to take effect. SwiftCare is a privatised clinic funded by a health insurance company, to deal with minor injuries and illnesses. I could not fault the care that Robin received there. It would have been a very different story had we attended the A&E department at our local hospital. By lunchtime today, Robin was back on the train to Kerry to re-join his friends.

Thankfully, today has been a rest day.  There’s been no news as yet on a date for my surgery.  Right now the silence from Nottingham, is a welcome reprieve.

A Lost World

Alzheimer’s Disease (AD) is a degenerative condition. It is fatal. The disease can last anywhere from 3-20 years but averages 7-8 years. The first sign is memory loss followed by personality changes. As AD progresses, the afflicted individual becomes disoriented about time and place and tends to exercise poor judgement. People with Alzheimer’s have an increasing  dependence on others and require round-the-clock care. The personality changes, cognitive lapses and eventual demise of a person with AD are extremely difficult on both patient’s and their loved ones. All is not lost however.

My parents both suffer from this progressive form of dementia and are in long-term residential care. Their world has shrunk to tiny proportions and they are oblivious to what goes on outside their own world. Happiness comes down to physical comfort and company. Family visits are a huge source of comfort to them both.

While sitting with my Mum in the Alzheimer unit yesterday, the lady in the bed next to her was very agitated. Doreen* is normally cared for at home but had come into the unit for a short period of respite care to give her family a much-needed break. Despite being very well looked after, there was terror written all over her face. Doreen’s world had fallen apart, she was ‘lost’ and required constant reassurance from the unit staff.  All afternoon she shouted “hello, hello” to anyone who passed and it was hard not to be moved by her anguish. When my Mum fell asleep, I finally got a chance to give Doreen the company she craved. The look of relief in her face will stay with me for a long time. She grasped my hand and tried desperately to find the words to express herself but the words would not come. I chatted to her calmly and told her that I understood why she was upset. Gradually she relaxed and then the tears came.  We hugged and I reassured her that I would come back soon for another chat.  That’s when I got rewarded with a most beautiful smile. Doreen was back on track and even though I knew it wouldn’t last, it made my day.

* Not her real name

You’ll be alright, duck!

Riding through Sherwood Forest on the bus yesterday, I sat in silence. My daughter had kindly accompanied me for the day but as the bus hurtled back towards Nottingham city centre,  I didn’t feel like chatting. My mind was still trying to come to terms with the news I’d just heard. I have to return for more surgery again. The adventures of Robin Hood Steph continue.

My return to see the head and neck specialist in the UK was arranged by my surgeon in Ireland. More expert advice is needed to manage the recurrent infections in my head. I was previously referred to the same specialist two years ago for major surgery to stamp out a chronic osteomyelitis in the frontal bone of my head. This operation was very successful but over the last year, I’ve had intense bouts of pain in the bone around my right eye and repeated infections which antibiotics have failed to control.

When the specialist looked at my CT scan yesterday, the cause of the pain soon became apparent. An abnormal pocket has developed in the bone deep behind my eye and close to the brain. The thickened bone has split causing an abscess to form. Complex surgery is required to take away the infected bone and relieve the pressure behind my eye. Unfortunately, this will require image guided surgery and means a referral to yet another surgeon in the same specialist unit. I will have to return to Nottingham again shortly to meet with the new surgeon and have specialized scans in advance of surgery.

This outcome is not at all what I’d anticipated. I had hoped that the recent scan might offer some welcome reassurance but it was not to be. I’m still reeling today from the news and not helped by a nasty head cold which has left my ears blocked following the flights. The good news is that I’m in fantastic hands so no worries there. The surgeons are the tops, I couldn’t hope for better. The impending surgery while complex, is minor compared to the some of the stuff I’ve been through. As they say in Nottingham, “You’ll be alright, duck!”

Image source: Camera phone en route to appointment.

Finger on the Pulse

Right now this country lacks leadership. George Lee, the well-known economist, has thrown in a well-paid job with RTE to put himself forward for election. There’s no doubt that he has the expertise needed to sort out the financial mess in the country. I’m reassured by his knowledge and feel sure that given half a chance, he’s the right man to iron out the problems in our economy.  Now wouldn’t it be good if some more bright sparks were to declare themselves willing and able to sort out our ailing health service? Harney and Drumm have clearly lost the plot. New blood is desperately needed.

Here’s a viewpoint from someone who does have a finger on the pulse. I’ll be back soon.

Overcrowding in A&E

Madam, – Can anyone explain why the persistent and dangerous overcrowding that afflicts Irish emergency departments remains unsolved and ignored? This Government moved very swiftly to deal with inadequacies in cancer services in the past two years when clinical errors, which had been highlighted in the press, made it obvious that improvements in service organisation and delivery were essential. Key elements in that improvement process were: a political will to sort it out, an analysis of the service as it was, a redirection of funding to key areas, reorganisation of services and, most importantly, co-ordination of all of this by the cancer tzar, Prof Tom Keane.

Emergency departments in the UK were the victims of overcrowding with in-patient boarders for many years, but the public outcry and the media’s persistent reporting on it was enough to stimulate Tony Blair, the then prime minister, to demand an improvement. What followed was a process that was a mirror image of what we have seen with cancer services here and, under the guidance of their emergency services tzar, Prof George Alberti, the problem was largely solved within two years.

What do we do in Ireland? Yes, we recognise that there is a “National Crisis” (Mary Harney 2006) and we set up a taskforce which produced an excellent document on changes required to improve matters (June 2007), but we fail to appoint a credible co-ordinator/implementor and we ignore all of the recommendations of the Taskforce Report.

Such inertia has not just led to a retention of the status quo, but to a gradual and serious deterioration of the care of patients presenting to emergency departments. There is ample evidence internationally that overcrowding of emergency departments with admitted patients puts them at a significant risk of medical complications and death. In that regard they are no different to the plight suffered by cancer victims in the past. Why then do the HSE, Professor Brendan Drumm and the Minister for Health and Children, Mary Harney, continue to obfuscate on this matter? – Yours, etc,

AIDAN GLEESON,

Consultant in Emergency Medicine, Beaumont Hospital, Dublin.

Source: Irish Times online

A Rare Bird

I had a check-up with the gastroenterologist this morning to get the results of the tests I had a couple of weeks ago. I’d hardly sat down in his consulting room when he announced “I’ve got the answer to your problem”.  I could have hugged him there and then. You see, after two months of struggling with constant diarrhoea and pain, I’d reached a stage where I didn’t care what diagnosis was made as long as treatment was available.  As it turns out, I’m not just a fine old bird, I’m a rare one as well!

Ever heard of microscopic colitis? I certainly hadn’t until today. I know about ulcerative colitis and Crohn’s and coeliac disease but no, Steph had to go and get something much rarer. The biopsies and blood tests have confirmed that I’ve developed an inflammatory bowel condition known as microscopic colitis (MC). The cause of MC is currently unknown. One theory is that the use of non-steroidal-anti-inflammatory drugs (NSAIDs) may contribute to the development of the condition. Another theory is that MC is caused by an autoimmune response where the body’s immune system attacks other tissues in the body. This is similar to the autoimmune disorders that cause chronic ulcerative colitis and Crohn’s disease. It’s also thought that bacteria or viruses may play a role in the development of MC but the exact relationship is unknown. As I’ve been on NSAIDs for years, have a long history of problems with autoimmunity and appear to be riddled with bacteria, it seems I was a sitting duck to develop this condition. My EDS is also thought likely to be a predisposing factor.

The symptoms of microscopic colitis are chronic, watery diarrhoea, accompanied by cramps and abdominal pain. Other symptoms include fever, joint pain, and fatigue. I’ve had them all unfortunately. The condition has been known to resolve spontaneously after several years but most patients have recurrent symptoms. Treatment varies depending on the severity of the symptoms. Anti-diarrhoeal and anti-spasmodic agents are the first line of treatment but as they’ve failed to work for me so far, I’ve been started on the same anti-inflammatory drug used to treat ulcerative colitis and Crohn’s. If this treatment fails, I will move onto corticosteroids but hopefully this won’t be necessary. Steroids and Steph do not go well together.

Living with any form of colitis is never easy but today at least, has felt positive. I’m very fortunate to have been thoroughly investigated and diagnosed in a matter of weeks. Some people have to wait years for a diagnosis. The tests might have drawn a blank leaving limited treatment options or worse, the diagnosis could have been very much more serious. Next week, I head to the UK for investigations of a very different kind but that’s a story for another day. In the meantime, thanks to an upstart airline, I’m off in a few days to dip my toes in the Med. I might not return.

Still Here

In May 2005, Emma Hannigan found out that she was carrying an inherited gene that predisposed her to cancer. This gene, known as BRCA1, meant that Emma had an 85% chance of developing breast cancer and a 50% chance of developing ovarian cancer.  Emma (32) and with two young children, decided to change her destiny by undergoing extensive preventative surgery. She opted to have a double prophylactic mastectomy (removal of both breasts) and also a bilateral prophylactic oophorectomy (removal of both ovaries) with removal of both fallopian tubes. The surgery reduced Emma’s risk of developing cancer to 5% but it was a gruelling year. There wasn’t just the pain to cope with, there were also the body changes, the loss of fertility and an early menopause. Emma subsequently underwent breast reconstruction but sadly, went on to develop breast cancer under her arm and in her neck. She has recently finished undergoing chemotherapy for a second recurrence. Emma has been through a great deal but as she says herself  “I’m STILL HERE”.

I’ve just finished reading Emma’s debut novel Designer Genes (Poolbeg) which is based on her own life story although the characters in it are fictional. The bookshop Hughes & Hughes made it book of the month for April and are giving €1 for every book sold to St. Vincent’s Cancer Research Trust.

Emma told her story on The Tubridy Show and I was completely bowled over by it. Her battle for survival is remarkable in itself but it was the combination of her humour and resilience in the face of adversity, which really caught my attention. Strange as it may seem, there’s an awful lot of humour in sickness.

You can listen to Emma’s interview with Ryan Tubridy here (fast forward 7 mins).

For information on cancer visit www.cancer.ie or call The Action Breast Cancer Helpline on 1800 30 90 40.