Human Issues on the Political Radar!

Before I start pontificating about the above, I was having a little drink in the Chelsea Wine Bar on Belfast's Lisburn Road last night and noticed they are having a fund raising event tomorrow at lunch time for the Ulster Cancer Foundation! They are welcoming female fans to a Horse Racing Lunch to coincide with Ladies' Day at Royal Ascot tomorrow. I am sure it will be great fun and would love to be there.

The American Cancer Society (ACS) state that cancer is not just a medical issue, it is a political issue as well. From the local City Council to the US Congress the American Cancer Society is engaged with elected and appointed officials to ensure that cancer remains a top local, state and national priority. The American Cancer Society Cancer Action Network which is the non-profit, non-partisan sister advocacy organisation of the ACS is dedicated to eliminating cancer as a major public health problem through voter education and issue campaigns aimed at influencing candidates and lawmakers to support laws and policies that will help people fight cancer. A close eye is being kept on where the Presidential Candidates stand on important cancer research, treatment and prevention issues.

This morning, BBC Breakfast Television presenters focused their attentions on a breast cancer patient who has been successful in her quest to co-fund her treatment with the NHS and so have access to expensive treatment that is not available to all patients. This has led to a debate about the risks involved in having a two-tiered system for breast cancer patients.... Again, human issues on the political radar!

On Monday evening I heard on RTE Radio 1 News that a new pilot project has been launced by the Irish Cancer Society aimed at helping patients who are unable to travel independently for treatment. It is called the "Care to Drive" campaign and its catchment areas range from Gorey in Wexford to Ballsbridge in Dublin. Basically, volunteer drivers will transport patients who cannot travel alone due to financial difficulties or location problems. This has been developed to help deal with the problems associated with the centralisation of services.

Hopefully Northern Ireland will follow this pilot project and we will see buses and taxis ferrying people to Belfast and Altnagelvin for check ups and treatment sooner rather than later.......

Island Life!

So how is life in the blogosphere! I have been very busy working and generally having a good time lately! We visited a beautiful island located off West Donegal at the weekend! We took our car over on the ferry from Burtonport to Árainn Mhór and enjoyed the culture, wildlife, quiet country roads and spectacular scenery. The weather was gorgeous and the company was pretty good too! We visited a little Church and I noticed a poster about Cancer Awareness pinned up on the noticeboard. I couldn't help but wonder how an islander diagnosed with cancer could manage the trips over and back on the ferry when they were ill or receiving treatment. I made a promise to myself that I would try and do a little research on cancer services and support on Árainn Mhór as I put on the sunglasses and positioned myself up on the rocks on the hills looking out over the Atlantic Ocean. It is truly well worth a visit this summer!

I managed to do a little bit of research but as it is slightly out of date I am hungry for more information! In the Official Reports for the Dáil Debates on 27/04/ 99 the then Minister for Health And Children Mr Cowen stated the following:

" Our inhabited offshore islands lie within the areas of responsibility of three health boards and it is the statutory responsibility of these boards to provide health services to the population. I have been advised by the North Western Health Board that is has established a steering committee which is in discussion with island representatives to agree an action plan for service enhancements... At present the Board is considering a proposal from the Community Group on Aranmore Island for a small nursing unit on the island."

In the Official Reports for the Dáil Debates on 8th February, 2001 a Mr Mc Ginley quoted from the report of Prof Niall O' Higgins in which he recommended the creation of a number of specialised breast cancer treatment centres throughout the country:

" There is serious concern in County Donegal about the rumoured downgrading of the breast cancer clinic in Letterkenny General Hospital".... If patients had to travel long distances to Galway, Sligo or Dublin from places such as Buncrana, Fanad, Gweedore, Glencolmcille or the islands, the inconvenience would be so prohibitive that some women may delay seeking advice and diagnosis and leave it too late for effective treatment.... The Islanders especially those living on Tory, AranMore, Inishbofin and Inishfree, have the extra worry of their journey being weather dependent for at least six months of the year. ... When one's life is under threat from this dreadful disease, not only is the best medical care available needed but also the support of family and friends and not the trauma of isolation from home, family and community. Donegal women want and are entitled to the option of staying close to their families and friends....."

To be continued .....

Next is another blast from the past!

Blast from the Past!! Shrugging off the Ghosts!

Everything was still and quiet as I looked at someone lying on a bed in front of me. I wasn't standing on the floor but seemed to be taller than usual, nearly as tall as the ceiling. I couldn't make out the person's features as they were surrounded by a white glow. I was confused for a second as I could not see anything else in the room except the person surrounded by the white light. Everything else was in darkness. The peacefulness and quietness of the moment was simply wonderful. I felt very happy and at peace as I moved away from the person lying on the bed and didn't ever want to leave this special place ......then BANG........

My body slammed down on a hard surface and i heard my sister whispering " don't leave us yet" into my ear over and over again. I could feel someone taking off my pyjamas and putting a gown on me. I couldn't open my eyes to tell them I was dying. I could hear them saying that the veins were collapsing and they could not get any more blood, platelets or fluids into me without a line. They wanted to start the chemo tonight and had to get rid of the leukaemia cells as a matter of urgency. Looookeeeemia I thought to myself, what is it anyway? Why did I get it? Maybe this is all just a bad dream and I will wake up soon........but I can't wake up and I can't tell them I am dying.

Suddenly I was being pushed through the hospital and my eyes opened slightly. I couldn't talk but knew they were rushing me to theatre. A nurse was running alongside the trolley and the porter was behind me. It was so creepy being wheeled through the corridors of the hospital. I didn't know what day or time it was or how long I had been in my own little peaceful world where bad things didn't happen. As I stared at the ceilings in the hospital, I did not know whether to pray to live or pray to die as they wheeled me into theatre................................................It was 12 hours since I had been diagnosed with leukaemia....

Start Spreading the News!

I am now back from my trip to New York. We arrived just in time for the Memorial Day Sales and we shopped until we dropped in Macys!

It seems like everyone is spreading the news about cancer and raising awareness about the disease in New York. There are cancer prevention messages flashed across t- shirts, documentaries in diners, posters, tv programmes in hotel lifts, magazines, newspapers everywhere. We have got a lot of work to do in Ireland to catch up with the all out community effort that I witnessed in the USA.

The grand finale of American Idol was shown on May 21st and the winner was a Missouri rocker called David Cook. His victory was bittersweet, as his brother Adam, 36 has been battling brain cancer but David was delighted that Adam could join him onstage after his win. David wept openly as he spoke about his brother's stuggle with cancer during the competition and one couldn't help but think that a cure for his brother would have been top of his list rather than a win on American Idol.

Patrick Swayze also spent Memorial Day weekend engaging in what the Americans call PDO - Public Display of Optimism. He cheered on the Los Angeles Lakers at the LA's Staples Center on May 23rd. Swayze is responding well to pancreatic cancer treatment and is reacting positively to chemotherapy treatment. It is all over the news that he is a tough dude that doesn't let anything get him down.

As we sat on a diner on 7th Avenue I noticed a programme about how people were coming together as a community in New York to find a cure for all women diagnosed with breast cancer. The programme, which was subtitled, gave the clear message to viewers firstly about the importance of early detection of breast cancer and secondly information about diagnosis, prevention and treatment. Wow, I thought, wouldn't it be great if we could get Irish cafes and bars to roll out programmes at lunchtime providing information like that! Women were shown how to carry out self- examinations and checks and look for warning signs & symptoms. Triple negative breast cancer disproportionately affects African-American women than white American women. I have never heard of triple negative breast cancer in Ireland but it was certainly in the news over there.

In our hotel, the tv screen in the elevator was broadcasting all sorts of information for hotel guests but also included a health slot and we again received further information about cancer prevention, early detection and self examination checks!

I know there is the Fashion Targets Breast Cancer ( FTBC) Campaign in the UK and we are all familiar with the t- shirts, but there is so much more that we can do. The actress Anna Friel is now making a name for herself in the States as she has got a new role in the US comedy Pushing Daisies. She is involved with FTBC Breakthrough Breast Cancer and the message she is giving is early detection is the way forward and people must attend their screening appointments. FTBC's vision is a future free from the fear of breast cancer.

So as FTBC say - target a cause close to your heart!

Now I must go back to managing my jetlag & reorganising my wardrobe!

Next on the blog is another installment of blast from the past & some piccies from New York!

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Blast from the Past! Faced with Mortality - Diagnosis Day - 26th November 2004

My body was flopping like a ragdoll, but I still noticed the cancer booklets and posters on the noticeboards at the entrance to the hospital ward. I knew that the blood test results were abnormal, but I wasn't expecting a cancer diagnosis. I was sure I had the flu or had been burning the candle at both ends, until I noticed four large bruises on my left leg.

I stared at the patients lying motionless in the beds - some with hair and some without. I was escorted to a family room to get the news, and was propped up on a big recliner chair and offered tea. The last thing in the world I was interested in was a cup of tea, but I didn't want to be rude. I remember spending a lot of time staring at the biscuits on the plate as the consultant confirmed my worst fear. It crossed my mind that I had watched this scene many times on TV. I tried to keep my eyes open and concentrate, but my mind kept wandering. The words of the consultant drifted in the air, and I could see his mouth moving, but my mind was on other things.

What about my gap year plans to go to Australia? How would I tell the family? How would they cope? What about pyjamas for the hospital? Would I be able to finish the full time Masters Degree that I had just started? Why was the doctor in the long white coat looking at his watch and scribbling down directions to another hospital for my sister?

I knew that life would never be the same ever again. I thought I would die on the two hour journey to the next hospital in the city, as the cramps in my legs and nausea were so severe. The porter pushed me in a wheelchair through the hospital to the Haematology Ward. I stared at people and wondered if they could tell that my life was over. When I reached the side room behind the Nurses' Station I was introduced to my friendly upbeat medical team. I tried to stand up but my legs were so weak I needed help to lie on the bed. I noticed a little yellow sticker on the noticeboard opposite my bed which said Smile. There was a trolley beside my bed, stacked with red bags (blood), yellow bags (platelets) and black bags
(chemotherapy). Everyone was talking, talking, talking and all the medical jargon was whizzing around my head. I didn't even know what leukaemia was nor quite frankly did I want to know...

I wasn't able to lift my head off the pillow and my arms hurt from being poked with needles. I remember the medical team being so kind and my sister constantly squeezing my hand. One of the Nurses told me about wigs and bandanas that I would need once I lost all my hair. I could have a good look at the catalogue once I came out of isolation. I asked my sister to cancel all the hair appointments which I had booked to coincide with the Christmas party season in University! Somehow, I didn't think I was going to need highlights or funky hairdos in this place.

The mobiles kept ringing, and I could hear my sister's voice fading away into the distance. She was squeezing my hand and patting my face with a damp facecloth. I tried to call out to her I couldn't open my mouth..............the words simply wouldn't come out ........ It was five hours since I was diagnosed with AML ( M3) or APL.

After that, everything went black, very black.

Blast from the Past!

Over the weekend I hope to start my blast from the past posts! I will tell you a little bit about my diagnosis and treatment and some of the funny and not so funny things that happened during my gap year with the Leukaemia or the " L" for short! Watch this space..........................................................................................

Post Chemotherapy Fatigue is a way of life ....... but I have never been as active!

Being sick during treatment was for me a temporary way of life. Every day spent in hospital was a day closer to getting home! The management of post chemotherapy fatigue is a way of life............but I have never been as active!

I am not sure if the fatigue that I experience now is strictly speaking "post chemotherapy fatigue". The medical experts might just label it "fatigue", but one thing is clear, I would not have it if I hadn't had the treatment.

The fatigue during treatment was debilitating to the extent that I spent most of the time lying in bed looking at ceilings. The fatigue I have now is a manageable condition.

Every stage of recovery has its own hurdles to overcome, and the hurdles are not the same for everyone. People experience different things at different times. In my opinion, it is virtually impossible for someone who hasn't had leukaemia to understand the long term impact of the disease and the treatment.

When you look well, people can assume that you are 100% physically fit and 100% fully recovered. I have read many articles and leaflets about post chemotherapy fatigue. Whilst they all touch on parts of the problem, I have yet to find something that deals with the matter in its entirety.

The one thing that the experts are agreed on is that there is no cure for post chemotherapy fatigue. That is the crux of the issue, as it affects so many people in so many different ways. All I can talk about is my own fatigue.

The fatigue I suffer from is not simply a physical tiredness. Apparently the Americans call it chemo brain and it usually manifests itself as a fuzzy head, headaches and a desire to be alone to chill out!

Fortunately, it usually passes after an hour's rest or so and is something that can be managed quite easily with a little bit of forward planning. Some people also speak of difficulties concentrating and irritability when the fatigue kicks in.

The good news in my case is that the fatigue is a manageable condition - I rule it rather than letting it rule me. It seems that periods of proper rest and time out work quite well when the batteries need to be recharged or more petrol is needed in the tank!

I have a fatigue managment programme for myself - I save energy before big occasions such as weddings, nights out with friends, holidays etc., .....I usually cut down on the running around, long journeys and late nights so that I am full of beans when I need them!

Most importantly of all! Friends! The friends who understand my fatigue are invaluable. These are the people who take me out for lunch, tell me all the latest gossip and take me on holidays! They are not demanding and go with the flow when the tiredness starts! Never underestimate the power of friendship and laughter to help conquer fatigue! I have never been as active and am planning another trip to New York at the end of this month! Roll on the Big Apple!

The Fear of Relapse

Nothing prepared me for the shock at my routine check up last week. To say that it was a huge blow would be an understatement. The feeling of fear that I experienced was overwhelming. I was told that it was possible that one leukaemia cell had showed up in the last bone marrow sample. I had to be re-tested to ensure that I was disease free.

The feeling of fear got stronger the closer I got to the bone marrow test. It was the first time in my three year journey with leukaemia that I actually worried about the results of the test. I turned to several people for support and it was a stark reminder that I should not be complacent about my medical condition.

The fear of relapse can be an extremely distressing emotion, and waiting for results is a
very worrying time for the patient, family and friends. It is yet another burden to deal with and overcome.

I was truly amazed at the knock on affect that leukaemia can have on all those close to you. I found the loss of control over the outcome of the result one of the hardest things to accept in that 48 hour period. Thankfully, my blood counts and bone marrow results are normal!

I know that not all patients are as fortunate as me. The feelings of fear have now lessened with the progression of time. Many thanks to my fantastic support network and in particular a very big thank you to Cathal. Next on the hit list is post chemotherapy fatigue!

Happy R Day Nóirín!

As Nóirín has pointed out, today is the 3rd anniversary of her remission from leukaemia (her R Day!) Well, as it turns out, Nóirín has another reason to celebrate today as she got some very good news about her health today, Friday 9th May 2008.

Anyway, I'll let Nóirín tell you all about it herself when she gets a chance.

So for Nóirín, and for anyone else celebrating good news in regard to their health today .... all together now: "Happy R Day to you, happy R Day to you...!"

Cathal :)

Days Like This

On the 9th May 2008 I have another excuse to celebrate! It is my R- DAY - Remission Day! It will be the 3rd Anniversary of my discharge from Hospital after completing almost 6 months of treatment for APL ( Acute Promyelotic Leukaemia), otherwise known as AML ( Acute Myeloid Leukaemia Sub- Type M3 ). Bit of a mouthful all of that - so I think I will just call it APL for short! It is my leukaemia .... soooo.... it is probably not like anyone elses as we are all different types of people!

Back to my R - DAY again - hint hint! That is really one of the big benefits of having successfully overcome APL! I have a B- DAY which is my Birthday of course, I also have a
D - DAY which is Diagnosis day and finally I have my R- DAY which is as I said Remission Day. Presents gratefully accepted for all! The last date i made up myself because I don't really know the exact date I went into remission! So if you have got a D Day or an R- Day make sure you get plenty of TLC!