Progress of Sorts

March 15, 2013

Where did we get to? Oh yes, I remember… I was in ‘yellowland‘ having the nasal prosthesis removed under sedation. That’s just over a year ago now and I guess you’d like to know how my head has been in the interim? Here goes…

When I returned to see the surgeon for a check-up, it was lovely to be able to report that I’d had no headaches or active infection since the prosthesis had been removed. However, I also had to report that the healing of my nasal septum had broken down again and this was confirmed on examination. We both looked at each other in disbelief. What to do next?

I was given two options… return to Nottingham for advice or do nothing and see what happens. I chose the latter as I couldn’t stomach the thought of any further intervention. A month later, I went to discuss the situation with my GP. I wanted to find out if there could be an immunological explanation for my long history of infection and failure to heal. My GP agreed to run some blood tests.

A month later, when I was in the throes of a bad flare-up of infection in my head, my GP phoned with the blood results. I did indeed have a ‘blip’ in my immune response which was considered worthy of further investigation. A letter of referral was sent to the local hospital requesting an appointment with the immunology team. I expected to wait months for this appointment within the public system but within a week, I’d been called into the hospital to undergo a rigorous assessment of my immune system. When I queried why I’d been seen so quickly, I was told that I was a “fascinating” case and as a result, I’d been bumped up the waiting list. My hopes were raised.

injection cartoon

Three hours and many blood tests later, I left the hospital having been thoroughly grilled on every aspect of my medical history… and also examined from top to toe. I couldn’t believe the thoroughness of the assessment. Following the blood tests, I was injected with the pneumococcal vaccine, started on a long-term prophylactic dose of antibiotic, two new inhalers (one oral, one nasal) were added to my prescription and I was given a date to return for pulmonary function tests.

When I returned to the hospital three months later for all the test results, I had high hopes of receiving news of a breakthrough. The appointment turned out to be a complete anticlimax. I didn’t get to see the consultant as had been promised. Instead, I was told by a seemingly bored, doctor that the blood tests confirmed a minor defect in my immune system… no IgM factor… and that there’s “no treatment available for it”. The tests had also confirmed my allergic status, asthma etc. and I was simply told “Keep taking the pills and come back in a year’s time for review.” Hopes dashed again.

The good news is… since undergoing the original immune assessment, I’ve only had one acute infection in my head since last June and I’ve also had fewer headaches. This is an all-time record! I’m convinced this progress is due to the continuous prophylactic dose of antibiotic. In the past, I’ve been on antibiotics for months at a time but never, for a year at a time. It’s seems such a simple solution and apparently, can be continued indefinitely. The question is… why didn’t someone think of this before?

So… progress of sorts. My nasal septum has still not healed and I’m due a check-up with the surgeon next month.

Tune in next week and I’ll tell you about my tooth extraction which… wait for it… failed to heal!


Time For Change

November 17, 2008

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I’m sure most people reading this will remember the tragic case of Susie Long from Kilkenny, who died from bowel cancer last year. Susie made headlines when she went public to highlight how she had to wait seven months for a test to her diagnose her illness because she was a public patient. Susie was 41 when she died and her death was directly attributable to a long delay on a waiting list. Shortly afterwards, our Minister for Health admitted that the health service had failed Susie. So why, a year after Susie’s death, do new figures show that patients still have to wait up to nine months for crucial tests to determine if they have bowel cancer?

“The figures released by the Irish Cancer Society (ICS) yesterday indicate patients can be waiting up to nine months for colonoscopies at Dublin’s Mater hospital, up to eight months at Cork University Hospital, and up to seven months at Sligo and Letterkenny general hospitals.

The data is based on returns provided by the hospitals to the National Treatment Purchase Fund (NTPF), which now manages waiting lists.

Bowel cancer is the second most common cause of cancer in Ireland after lung cancer. There were 2,184 new cases diagnosed and 924 deaths from the disease in 2005.

The Irish Cancer Society expressed serious concern at the waiting times. It said patients should have a colonoscopy within six weeks of being referred by their GP.

The full Irish Times article can be found here.

Susie Long did her utmost to bring about change.  She bravely used her own personal tragedy to highlight the inequities in the system and her courage was not in vain. A trust fund, called the Susie Long Hospice Fund, has been set up to raise funds to build a hospice in Kilkenny. The trust aims to help as many people as possible to have a calm, peaceful and supportive environment at the end of their lives.  Here’s how you can help.

These latest figures on the waiting lists for colonoscopies, show that little has changed since Susie’s death. People’s lives are still being put at risk by long delays in treatment. Our health service is in disarray and we need agreement on a plan to put it right. It’s time we had a proper debate on the way forward.


The Show Goes On

October 21, 2008

Do you remember the television series called M*A*S*H?  It was a medical drama/black comedy and the show followed a team of doctors and support staff stationed at the 4077th Mobile Army Surgical Hospital (MASH) in South Korea, during the Korean War. The series won countless awards and the final show was one of the most watched television shows ever.

Now Ireland has it’s very own version of the same show which can be viewed in most A&E departments around the country, any day of the week. The only difference between this show and the real M*A*S*H is that no-one’s laughing at the Irish version as it ain’t one bit funny.

British-based freelance journalist and author, Diane Taylor visited a friend at Tallaght Hospital’s A&E in Dublin last week. She was shocked by what she saw. Here is her account of that experience (with thanks to the Irish Times online).

“I was impressed by the modern, spacious, hospital buildings at the Adelaide and Meath hospital in Tallaght. Sensible health promotion posters covered the walls of the reception area and dispensers of disinfectant hand rub were clearly visible in triplicate throughout the public areas.

Only the huddles of visitors and dressing gown-clad patients at the entrances inhaling deeply on their cigarettes sullied the wholesome image of the place.

I had just flown in to Dublin from London to spend a few days working with Kathy O’Beirne on the sequel to her book ‘Don’t Ever Tell ‘, a story of childhood abuse in various institutions in Dublin.

But the work plans had to be abruptly halted when Kathy called me to say she had been rushed to hospital with complications to a chronic medical condition. I headed straight to Tallaght Hospital to see her.

The hospital has the largest emergency department in the Republic, with 80,000 patients streaming through its doors every year. The A&E waiting area was full, but not bulging the way I’d often seen A&E departments look at London hospitals.

Those waiting to be seen appeared remarkably resigned and those administering the triage system seemed to be working in a calm and ordered way.

I explained to the two security guards that I had come to see someone receiving treatment in the department and was nodded through the swing doors.

What I found on the other side of the doors shocked me. Lined up on trolleys stretching as far as the eye could see along the corridor were seriously ill patients waiting for beds.

Some lay on bloodied sheets, many were attached to one or more drips and quite a few were elderly.

It wasn’t clear who was unconscious and who was sleeping, but what was clear was that everyone on the trolleys – 35 people in all – were very unwell and needed to be in a proper bed in the relatively tranquil environment of a ward rather than in the frenetic setting of a corridor in A&E.

Kathy lay groaning with pain on one of the trolleys. There were some splattered drops of dried blood on the floor under her trolley. She had a tube up her nose running down her throat and into her stomach, a tube in her arm and a bag attached to a tube running from her abdomen draining out some foul liquid, which was causing her intense pain.

A cocktail of drugs had been administered to her and she was extremely distressed to be so exposed when she was feeling so ill. Sometimes she cried, at other times she appeared to be slipping in and out of consciousness. The other patients on the trolleys appeared similarly discomfited by their surroundings.

Now and again, ambulance staff hurried past the patients lying on the trolleys, dodging the drip stands and other bits of medical equipment as they delivered the emergency cases they had decanted from their vans to the waiting doctors and nurses.

It was distressing for both the patients being rushed in and the patients who were lying, prone, on the trolleys to catch glimpses of one another.

When doctors or nurses examined or administered treatment to those on trolleys, there was no privacy for the patients. Everything was carried out in full view of whoever happened to be walking past at the time.

The nurses kept on shaking their heads when patients and anxious relatives asked them when a bed was likely to become available.

“We just don’t know, we’ve got 35 people waiting. It’s terrible but there’s nothing we can do,” said one.

“I used to work in a hospital in London and people there complained about the state of the NHS – but they don’t know how lucky they are with conditions there, compared with the kinds of things going on here,” remarked another.

“The average waiting time on a trolley before getting a bed is 24-48 hours, sometimes longer,” explained a third nurse.

While all hospital emergency departments expect spikes in admissions at certain times – such as after a major accident or during a winter flu epidemic – neither scenario was in evidence when I was in the hospital.

On the contrary, it was a beautifully sunny October day – nothing out of the ordinary seemed to be happening. The staff said that this situation was not a blip – but, rather, the norm.

When the noxious substance had finished draining out of Kathy’s abdomen, the nurse said that she could remove the tube snaking its way from her nose into her stomach.

“You’re not going to pull the tube out of my stomach here in the corridor, are you?” asked Kathy, aghast.

“Well, where else am I going to take you?” replied the nurse. The tube was duly pulled out of Kathy’s stomach in full view of whoever happened to be walking past. Kathy was mortified.

I’m no health service expert, but during my various visits to A&E departments in London over the years I have never witnessed the kinds of scenes I saw at Tallaght.

After 24 hours on a trolley, with no prospect of a bed on the horizon and only the offer of another trolley in a day ward as a substitute, Kathy could take no more.

Her resistance to infection was low and, with various tubes stuck into different parts of her body, coupled with her extremely close proximity to other sick patients lying on trolleys and the new emergencies being rushed through the corridor, she feared leaving the hospital sicker than when she arrived.

So she opted to go home. She was warned that she was leaving against medical advice and was asked to sign a form accepting responsibility, should any medical complications arise.

She flicked through the “signing out” book and was amazed by the large number of other patients in recent weeks who had also decided to get out before their treatment was complete.

In the six hours that I spent in the corridor I saw nothing but dedicated professionalism and kindness from the doctors, nurses and auxiliary staff in the A&E unit, all working in intolerable conditions.

But it did not stop me from leaving the hospital with the impression that what I had witnessed in Tallaght Hospital’s emergency department was more reminiscent of a makeshift field hospital hurriedly established in the wake of civil war or some other disaster in a developing country, rather than the biggest A&E department in a thriving European country”.

I don’t suppose our Minister for Health will win any awards for this production but you can be sure that her finale will be one of the most watched shows ever.


An Itchy Business

July 16, 2008

I have a problem that has me scratching my head big time. Ever heard of psoriasis? It’s an unpleasant skin condition that people tend not to talk about. Why? Because there’s nothing sexy about it and yet it has the potential to have a serious impact on people’s lives. I’ve no problem talking about psoriasis, I’ve no reason to be ashamed of it and I’m dying to find someone else who’s been down the same road.

Last January, I started to develop what looked like dandruff on my scalp. I consulted my hairdresser who recommended a dandruff treatment shampoo which she promised would be highly effective. It was useless and the scaling on my scalp continued to gradually worsen. After I’d exhausted every avenue with over-the-counter treatment shampoos, I consulted my GP for advice. He prescribed several lotions and potions but none of them had any lasting effect. Soon afterwards, I noticed that I’d developed a rash in both armpits so I went back to the doctor and came away with yet more prescriptions. When these failed to halt the rapidly deteriorating condition of my skin, I was referred on to a dermatologist. She confirmed that the skin problem is an unusual form of psoriasis, called inverse psoriasis. My sore and flaking scalp is also a form of psoriasis. Apparently, I’m in the target age bracket and with a strong family history of psoriasis, I was a sitting duck waiting for this to happen. Psoriasis is thought to be an auto-immune condition and there is also a definite genetic link to it. Frankly, my medical history is already so long, I could have done without this bolt-on extra but having said that, I’m all too aware that things could be much, much worse.

I now follow a twice daily regime of baths, treatment ointments and moisturising creams. It’s terribly tedious and time-consuming but it’s effective and as long as I follow the regime, I can keep my skin under control. The scalp condition has been another story however. It has failed to respond to the multiple treatments prescribed and at this stage, I’m getting desperate to find a remedy. So far, the dermatologist has recommended the following shampoos: Nizoral, Capasal, Elave, T-Gel sensitive and Oilatum scalp. I’ve also been prescribed Cocoid (coal tar ointment), Bettamousse (steroid mousse), and Dovenex (calcium solution) treatments. My scalp initially responds positively to every new treatment and my hopes sore only to be dashed again when it relapses shortly afterwards, no matter how long I persist with the treatment. I’m nearly driven mad at this stage with the persistent itching, dryness, flaking and soreness of my scalp. I’ve tried rubbing pure coconut oil into my scalp but again, the relief is very short-lived. I recently found an over-the-counter scalp moisturiser called Exorex. It’s an expensive product but it has calmed my scalp more than anything else so far.

At this stage, the psoriasis is having a significant impact on my life and I need to get some control over it. You could say, I’m itching to find a solution! Do you know of anyone who has suffered from psoriasis of the scalp and can you recommend a treatment that has really worked? I’ve done everything within my power to reverse the process but at the moment I’m not winning the battle. I know that a holiday in the sunshine would probably work wonders but I think what I’d really appreciate more than anything, is a long holiday from doctors.


Blog Land

April 22, 2008

Today is the first anniversary of this blog. Hip Hip, Hip Hip, HURRAY!

Okay, so I know some clever dick is going to tell me that the tool bar shows The Biopsy Report started in June, not April! You’re right, it did but this blog actually came into existence this day last year. If you don’t believe me, scroll down and have a look at ‘archives’. The blog was originally known as Que sera, sera and after a few months of dipping my toes into the blog pool, I decided to make a few changes and start all over again. That’s when The Biopsy Report was born.

How well I remember those first few tentative steps into ‘blog land’. I hadn’t a clue what the whole blogging concept was about but my son, Robin, kept telling me “You’ll love it, Mum!”. He was right, of course. I totally adore it and now I can’t imagine life without blogging. My friends think I’ve lost it but they don’t know what they’re missing! He! He! Hardly a day goes past without me announcing to someone “but one of my blog friends says this” or “one of my blog friends does that” and it raises some interesting looks. Okay! Maybe I have lost it but I tell you what, if this is losing it bring it on, I want more!

So, some 22,000 visitors, 2 blog award nominations and a whole lot of fun later, here I am celebrating a year of giving an insider’s view, from a patient’s perspective, on what life is like within the health service. To sow the seeds for this, I had to put my story out there first and this had the added bonus of bringing welcome support and understanding from all my blogging friends. I used to talk about my medical saga as being a lonely journey. How things have changed! This blog has really helped me to find the plot and I’m hugely grateful to everyone who’s given support. Now that I’ve got my own woes out of the way, I’ve started to focus on the bigger picture of our rapidly crumbling health service. I don’t pretend to be an expert. I just say it as I see it and hope that by exposing the various issues, it will get people to think more about what sort of health service they want, and need. They say your health is your wealth. Sadly, in Ireland it’s rapidly becoming more of a case of your wealth is your health. I’m determined to do all that I can to raise awareness of the flaws within the system, as I see them. Some day, you may be very glad that I did.

And now, where did I see that great lasagne recipe yesterday? I’m off to give it a whirl! Thanks! Grannymar.


Memory Lane

March 23, 2008

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This day last year, I boarded a Ryanair flight to Nottingham with a bag packed with enough things to last for six weeks. I had no idea how long I’d be away and yet I only had one spare set of clothes packed. This was no holiday. I was en route to an NHS hospital to undergo major surgery on my skull.

I had travelled over to Nottingham a few weeks earlier for a pre-op assessment and was therefore permitted to present myself for admission on the day of the operation. Because of my history of recurrent MRSA infection, I had also undergone a thorough screening process in Ireland in the weeks leading up to the surgery and had received the requisite all-clear. I was warned however, that if any active MRSA infection was found in my skull during the operation, I would have to remain in the UK for long-term intensive IV treatment.

My husband and I booked into a little hotel in the city centre the day before surgery and shortly afterwards, set off on a walking tour of Nottingham. We found an open-air music festival in progress in central square and sat in the late afternoon sunshine to enjoy the music and dancing. Knowing that we had a very early start the following day, we opted to eat in a lovely little French cafe/bar which we’d spotted on our walk. We had a delicious meal and I well remember sipping my wine that evening and thinking how surreal the whole situation felt. So far, so good anyhow – our wind-down for the ‘big’ day was going well. We returned to the hotel and having prepared everything for a quick departure in the morning, we hopped into bed early hoping for a good night’s sleep. I had taken the precaution of bringing sleeping tablets to make sure that both of us crashed out that night. We did but not for very long. Unfortunately, I’d forgotten to turn my mobile phone to silent and about an hour later, we were both woken from a deep sleep by my phone bleeping. It was a message from a relative, wishing me well for the following day. A kind gesture but by now I was wide awake and couldn’t get back to sleep. I lay there for hours thinking about what lay ahead and eventually decided to give up on sleep and instead treat myself to a final brew of coffee. I had been asked to fast from food and drink from 4am onwards so there I was at 3am, feasting on a breakfast bar and a delicious mug of strong coffee. I was ready to depart for the hospital at least two hours ahead of schedule.

It was a long day but all went well, apparently. I can’t remember much of it. The surgery on my skull took about four hours to complete and I was patched back together with 59 staples across the top of my head. The following morning the surgeon appeared at my bedside and informed me that during the surgery, three separate abscesses had been found in the front of my skull. If any of them tested positive for MRSA, I was there for the long haul. He also told me that my hair had been washed and dried at the end of the operation as it was matted with blood. I remember having a good laugh about this and asking if there would be an extra charge for his hair dressing service. He then proceeded to pull a drain out of my skull which I hadn’t even realised was there.  My head was very heavily bandaged and felt completely numb following the surgery but I will never forget the sound and the sensation of having that drain removed. It was horrible. However, I really didn’t care about anything much at that stage as it was such a relief to have the operation safely over. The next day the surgeon came back into my room with a big smile on his face and announced that the lab reports had all come back showing the bone specimens to be sterile. No MRSA was found. I would be free to go home as soon as I was well enough to travel.

I arrived back in Ireland, albeit in a bucket, just in time for the arrival of summer. Last year we had hot, sunny weather for the whole month of April and then it seemed to rain on and off for the rest of the summer. The sunshine proved to be the best get well present ever and to me, it’s still shining. You see, the MRSA infection which had dominated my life for two years, has never returned.

Tomorrow, Monday marks exactly one year since that operation. Writing this post has been a real trip down memory lane but now, as I’m sure you’ll be relieved to hear, the time has come to lay this story to rest. Rest in Peace, MRSA. I bid you farewell.


A Lifeline

March 17, 2008

a-lifeline.jpgAnyone who’s ever read a book they can’t put down, will know exactly what I mean by compulsive reading. The story draws you in and you find yourself totally captivated until the last page is reached. Well, last night I found myself in exactly the same situation only on this occasion it wasn’t a book I was reading. It was blog and it’s stunning!


On looking through my blog stats, I noticed several visits from a referrer called Distant Rambler. I didn’t recognise this name and on investigating further, I couldn’t believe my luck at the blog I’d found. It’s beautifully written, very moving and is totally spell-binding. I can honestly say that of all the blogs I’ve ever read about patients and their medical stories, this one stands out way above the rest.

This inspirational blog is written by Laura, a 28 year old with a PhD, who is presently in hospital undergoing treatment for ALM, an acute form of leukaemia. It is in effect, cancer of the blood. This is not Laura’s first time tackling ALM as she was first diagnosed with leukaemia when aged just 12 years. Her cancer recurred last year but this time she has also had to battle a tumour on her back. She spent her birthday in isolation and also missed out on a family wedding. It takes pure grit and determination to achieve a PhD and these qualities shine through in her approach to her illness. Laura has recently undergone a bone marrow transplant (BMT) and is presently back in isolation, counting down the days until her release. She writes her blog like a diary, detailing all the daily ups and downs of her journey with cancer. Her story is written with such clarity and honesty, it’s quite breath-taking. Put simply, Laura’s life is on the line. She has spent a great deal of time in hospital undergoing intensive chemotherapy and despite suffering many setbacks along the way, she still manages to find humour in her situation. I love her writing – Laura does not beat about the bush, she gives it to you as it is. She is incredibly brave in the face of adversity and deserves huge admiration.

Today is Day 17 post-transplant for Laura – she received her third bone marrow transplant on 29/02/08 and has spent the last 17 days in complete isolation. Today is also St. Patrick’s Day, a day when Irish citizens are celebrating around the world. Laura is too ill to celebrate but through her blog, she still managed to wish everyone else a happy day. Her laptop is her lifeline, her contact with the outside world. Her blog provides her with a welcome breathing space from her illness and continuing treatment. Laura is feeling very low at the moment. Please, could I ask you to drop by her blog and let her know that you are thinking of her. You will be, quite literally, throwing her a lifeline.

I hope tomorrow is a better day, Laura.