Musings – Today is Rare Disease Day

“I am a rare species, not a stereotype.”
Ivan E. Coyote

Today is Rare Disease Day. It is celebrated this year on 29 February.

Today I am thinking of all those fighting a rare disease and thankful for any and all supports available to those of us who are living with a rare disease.

In many cases when you are diagnosed with a rare disease you feel alone – you have never heard if it, your family has never heard of it, your friends and colleagues have never heard of it either. You spend your time explaining what it is to people and are often exhausted while the person listening is bewildered by all the information.

Often you have no yard stick of knowledge or information against which to measure what you are experiencing. You learn as you go. You have to few options when it comes to trusted online sources and in many places the information is years out of date. I looked up a medical dictionary about my rare disease and it more or less told me I had less than a year to live! You have to be so careful about who and what you trust for information.

In addition to that, rare diseases are most often the poor relations when it comes to research and drug development. If so, few people are diagnosed with your rare disease, then shouldn’t we be putting the research into the area where we can help most people? I would hate to think that is the conversation that is happening about my disease but in many cases it can be.

 Thankfully in the case of my rare disease – Myeloma – we have amazing international organisations like the International Myeloma Foundation which was founded by a patient and her twin sister. I would imagine they did it for the same reason I set up a dedicated Irish myeloma website – to connect, to tell the myeloma story, to raise awareness and to get to work! We are blessed to have the IMF, the Myeloma Beacon, Myeloma UK and The Irish Cancer Society who are leading the field in research, information, patient support, and development of new drugs. 

So to all those battling a rare disease – Happy Rare Disease Day. Remember:

Talk about your rare disease.

Don’t every apologise for being the expert on your own disease.

Tell your story.

Connected with others.

and most importantly Keep Fighting!

Read more about Rare Disease Day 2016

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Musings – Good News after weeks of uncertainty

Good news is rare these days, and every glittering ounce of it should be cherished and hoarded and worshipped like a priceless diamond. – Hunter S Thompson

Those of you who regularly read this blog will know from a couple of posts ago that I have had an unsettling new year so far.

After a series of tests in early January, having been told I might have a brain tumour or MS, I finally got some results. The MRIs were clear of tumours. I have a slipped disc which did not show up on x-ray.

I was asked to have more tests by my haematology team which included bloods and a bone marrow biopsy. The biopsy was extremely unpleasant and I was in pain for a few days afterwards. It needed to be done to rule out a return of my cancer. I had to wait a week for the results.

Driving to the hospital for the results was a repeat of the trip on 26 September 2007 when I was waiting to find out if the transplant had worked. While I was fairly confident that I was going to be okay, there was still the niggle of doubt at the back of the mind. I have rehearsed over and over again how I will react when I am told the cancer will return, but when you are in the moment and know that the results are seconds away, all plans and logic go out the window!

As I sat waiting for the call, I saw my consultant come in and take my chart. I knew the results were imminent and I was distracting myself by checking email. An email arrived that very second from my husband with the words “you only live once” and a link to our confirmation of tickets for Bruce Springsteen in the Summer. I was over the moon. Then a text arrived from my daughter telling me that one of her friends had lost her Dad the night before. I could feel a tear roll down my cheek as I knew that Emma was feeling every bit of the loss of her friend’s Dad. I know she has thought the worst about me at times.

My consultant called my name and brought me into the consulting room. I could feel my heart rate increasing as there seemed to be something different in his mannerism towards me. Shit! This is it! It’s back.

He waited for me to sit down and said the words “the marrow is clear of myeloma which is great news”.

GREAT NEWS! THE BEST NEWS! Whew! I breathed a sign of relief and started to feel my bottom lip trembling with tears of relief. I am not sure how or why I held it together, probably because I had questions about what was next.

Referral to an orthopaedic surgeon to see what he wants to do about the slipped disc and so as he can have a look at what has been going on with my knee. It’s all manageable. It’s not the return of cancer. That was all I needed to hear.

I thanked the doctor and was on my way.

I had to make phone calls to Bryan and Emma as I knew they were waiting for news. Then a quick update to Facebook as I had shared the news there about the tests and results today.

Then it was back to life, again!

I am grateful for the good news and now I can get on with getting busy living again and maybe even planning that Christmas dinner in March or April!

B xxxxx

 

 

Musings – World Cancer Day 2016

“Hold fast to dreams,
For if dreams die
Life is a broken-winged bird,
That cannot fly.”
― Langston Hughes

Today is World Cancer Day. All across the world cancer organisations and people with cancer are doing their bit to raise the spirits of those with cancer and to also raise the stakes of those who have the power to change treatment, improve research and generally get us further along the road to a cure.

The Irish Cancer Society is using the hashtag #icanwecan to promote their work in the area of cancer research. They are asking all of us to remind the candidates as they canvass for the general election (taking place in Ireland on 26 February) to put funding for health and specifically for cancer research in their manifestos. This is all with a view to getting the funding to push us further down the road to a cure.

I listened to a radio interview today where the head of research in the Irish Cancer Society said that more and more people are living with rather than dying from cancer. He also said that many cancers are now seen as chronic illnesses to be managed and which we can live with. That is all good to hear.

But somewhere out there someone has the cure for cancer – someone has the cure for my cancer – Myeloma. I would dearly love them to find it in my lifetime. So please keep talking about cancer and treatment, please keep raising funds and please keep the pressure on our TDs and Ministers so as they support those who are working towards a cure.

Here’s my contribution for World Cancer Day. It’s a short video called ‘Hang in There’ which is aimed at those newly diagnosed and those still battling along with treatment.

There is life after cancer. Hang in there!

#ICanWeCan

 

 

 

Musings- New Year, New Worry

It’s your life – but only if you make it so. – Eleanor Roosevelt

Happy New Year. I know it’s the first of February today and a bit late to be saying happy New Year but I just haven’t been able to put words together for a blog post for a long time. I have had a set back which has involved a hospital stay on 26 December, several MRIs, X-Rays and other tests. I am still waiting for answers and find myself now playing a waiting game for a bone marrow biopsy which is happening on Wednesday of this week.

My medical team have ruled out a number of things and have discovered that I have a slipped disc in my back. That explains some of the pain I have been having but it does not explain all the symptoms I am having. They now need to rule out a return of the cancer – a return of the myeloma. This can only be done absolutely by a bone marrow biopsy. It’s not the nicest of tests to have to do but I am saying yes to everything so as we can get some answers. It could well be that this is all related to my disc issue in my back but because of my history, they have to be scrupulous about my case and be absolutely certain that they are not missing anything.

When I first felt ill on 26 December of last year we went to a local hospital. I was upset at having to leave the family on the day after Christmas – my favourite day of Christmas. We arrived at the hospital at 12 noon. There was a lot of waiting around and a lot of tests. I sent my hubby home and sat back in the cubicle to wait it out. There were questions and more questions. My hubby arrived back in the late afternoon. I was hoping to be allowed home with him. A doctor came into me at about 10pm and said that he wanted MRI scans and some Cat Scans as he needed to rule out a brain tumour or MS. Seriously! My luck would have to be pretty bad to end up with either of these things. I struggled at first with saying yes to the tests. I wanted to leave and go to see my team in the hospital in Dublin. My hubby persuaded me to stay and have the tests. It was an awful thing to be left with the day after Christmas. It was horrible to be in hospital – again! It was horrible to be away from the kids during a holiday – again! It was horrible.

Before my hubby left he made me promise that I wouldn’t GOOGLE anything about tumours or MS. Ah now! Sure I am human. Of course I was tempted to GOOGLE things. I started to type in the word MS and stopped. I told myself that all I was dealing with at that moment were new tests. It was tough to settle that night.

When morning arrived my docs came to see me and told me I could go home. I was relieved to be getting home to continue Christmas.

Since then I have had the MRIs and I am now awaiting the bone marrow biopsy. I am hoping that it’s not a return of the cancer. I am hoping that it will turn out to be something a lot simpler. I am hoping …..

I don’t have many more words for the moment. I just wanted to share an update in case people were wondering where I have been.

Brenda

xx