12 years a survivor

“Today is life–the only life you are sure of. Make the most of today. Get interested in something. Shake yourself awake. Develop a hobby. Let the winds of enthusiasm sweep through you. Live today with gusto.”
– Dale Carnegie

On this day 12 year’s ago [9 July 2007] I received an autologous stem cell transplant in the hope that it would give me a new lease of life after being diagnosed in January of the same year with an incurable cancer called Multiple Myeloma.

The Science Bit

Myeloma is a type of cancer that develops from cells in the bone marrow called plasma cells. Bone marrow is the spongy tissue found inside the inner part of some of our large bones. The bone marrow produces different types of blood cells. Myeloma can develop wherever there are plasma cells hence the name Multiple Myeloma.

Each year in Ireland approximately 250 people are diagnosed with multiple myeloma and 170 succumb to their disease.

An autologous stem cell transplant uses healthy blood stem cells from your own body to replace your diseased or damaged bone marrow. An autologous stem cell transplant is also called an autologous bone marrow transplant.

Using cells from your own body during your stem cell transplant offers some advantages over stem cells from a donor. For example, you won’t need to worry about incompatibility between the donor’s cells and your own cells if you have an autologous stem cell transplant.

An autologous stem cell transplant might be an option if your body is producing enough healthy bone marrow cells. Those cells can be collected, frozen and stored for later use.

Autologous stem cell transplants are typically used in people who need to undergo high doses of chemotherapy and radiation to cure their diseases. These treatments are likely to damage the bone marrow. An autologous stem cell transplant helps to replace the damaged bone marrow.

The Reality

That’s the science bit in relation to the stem cell part of the treatment which also has an amount of advance prep and treatment that in my case took almost six months.

The process of the transplant meant being in isolation in a hospital room away from family and friends and the outside world for a month.

Despite reading and researching all the treatments and side effects I was still unprepared for the sheer awfulness of the treatment but I had no choice if I wanted to live.

At the time of diagnosis we asked what would happen to me if I didn’t have the treatment and they told us that I would succumb to the disease quite quickly. I could not allow that to happen as had so much life left to live and I was not going to risk having to say goodbye to my kids Emma (who was nine at the time) and Cathal (who was only two).

So I had the treatment – it’s well documented else where on this blog so I have no intention of revisiting it. But, it was horrendous and there were times during it that I felt too weak to fight.

A lasting memory from the treatment was the sheer will power it took every day to do the most simple of things like getting up off the bed, walking to the shower and washing myself. There were offers of help when I was literally too weak to stand but I used to sit on the bed sometimes for over a hour doing the actions in my head and waiting for my body to catch up with what I was trying to do – walk to the shower.

I had every other side effect going. I lost my voice at one point. I dropped four stone in weight during the month of treatment and went down by five dress sizes. I was unrecognisable coming home after more than a month in hospital in the early days of August 2007.

But the transplant worked and so far I have received 12 years of complete REMISSION. I am really one of the lucky ones as I know many people who were with me on the myeloma journey that have succumbed along the way.

The past 12 years have been full of good times and a few blips along the way. As a Myeloma survivor, I have a somewhat compromised immune system and I don’t react the same way as someone with a health immune system does to things like a cold or the flu. I was plagued in the early years post-transplant with infections that took hold and that I had to be hospitalised for. I also had a Pulmonary Embolism in 2009 and was pretty lucky to survive that.

If I was a cat I reckon I would have used up more than half of my nine lives.

Whilst I am in remission, I have never been let totally off the hook by my doctors. I used to see them fortnightly, then monthly, then bi-monthly, and now I see them for a full check up every three months. Some people might see that as a chore but I see it as a security blanket. It does mean butterflies every three months as I await the results, but those butterflies have thus far always evaporated into little flutters of relief and joy.

Cancer changes everything

You don’t often get to read a huge amount of the detail of a cancer survivor’s story – you get the headlines without getting a real insight into the day to day practicalities. The devil is literally in the detail.

As someone diagnosed with cancer you temporarily have to stop planning everything from family holidays to career goals to the most routine of things – it all comes to a stop and you gradually have to build your life up again around the cancer.

Initially it’s around the treatment where you are managing sick leave, sick certs, drugs payment schemes, health insurance and what it does and doesn’t cover, hospital appointments. Then there’s the myriad of meds that are part of the treatment as well as learning the combination and sequence of each of the drugs, self-injecting when red cells are low etc etc

As a Mother with Myeloma you still have to also keep the home show on the road and ensure that all the normal day to day family things get done – books, uniforms and lunches. It’s important to keep family life as routine as possible.

You can be facing into the most serious of treatments of a given day and find yourself running around the house in the early morning looking for a lost science book or PE gear that has gone missing. It’s a strange juxtaposition of the normal versus the most abnormal life altering diagnosis.

I also had to temporarily give up work for a minimum of six months. The transplant hit me very hard and my return was delayed. Then when the plans were in place to go back before Christmas, I  got shingles and had to be readmitted to hospital. That meant more re-ordering and readjusting.

I thought that having Myeloma would mean that I would have have to give up on my job ambitions and that I would always be looked at as the person with the serious cancer.

Career dreams. Life dreams. Family dreams. Relationship and marriage dreams. Holiday dreams were all put on hold while we absorbed the seriousness of the diagnosis and tried to get answers about how long I might have to live.

There is no exact answer to that question about how long I might have to live when it comes to Myeloma as it is such an ‘individual’ disease and each person presents a little differently than the person before and responds in different time lengths to a transplant.

But here I am 12 years a survivor.

Career dreams. Life dreams. Family dreams. Holiday dreams were all put on hold while we absorbed the seriousness of the diagnosis and tried to get answers about how long I might have to live.

I am go grateful that I did not give up on myself or any of my dreams back in 2007 because each and almost everyone of them has been gradually reignited during my remission.

Memories, Milestones and Dreams

It’s been 12 years of amazing family milestones from primary school graduations to secondary school and into college. My daughter has graduated from college and I got to be there for her! I am getting to watch my children grow up. What an amazing thing to be able to say.

I am also blessed in my marriage with my husband Bryan who has stood by me through the sick days and has stood even closer on the dreadful days during the past 12 years. The dreams we had to put on hold are coming back to life too and we are genuinely looking towards retirement and more adventures together.

I have also fulfilled so many other dreams from travelling to see more of the world and more of this beautiful country I live in, from taking up new hobbies and being able to get back to walking and swimming again. I have joined a choir and sung for the President twice. I have had a piece of art in a 1916 exhibition that was hosted in the Botanic gardens. I have climbed a mountain, joined the scouts, taken up knitting, painting and gardening. I have experienced a multitude of new things and loved every moment of it. I have made lots of mischief too with the kids.

I had a concert with Brian Kennedy in our living room. I wrote a song and almost had a Christmas number one. I helped develop a Pope emoji, met Pope Francis and made him laugh!

I have also fulfilled many career dreams. While I am happily in the same job I was in when I was diagnosed I have also gotten to achieve so many of my career dreams from representing the Church at various Irish and international events; from being a published author with two books coming out this year relating to my work in the Church and digital media. I have visited the Somme as part of a centenary pilgrimage and made my first mini documentary. I also became a radio presenter/broadcaster in my forties and had two one hour weekly radio shows that I was part of for seven years. But the biggest event in my career to date came about  last year when I got to be the Media and Communications Manager for the World Meeting of Families 2018 and the Papal Visit to Ireland. Back in 2007 immediately after diagnosis, I never thought I would be adding that to my CV.

Advances in Myeloma treatment

For those with Myeloma it’s important to know that 12 years is a long time in medicine and the side effects that I went through are probably better able to be managed now. There are also all sorts of new treatments and drugs available for those of us with Myeloma and in many ways Ireland is up there on the world stage in terms of holding its own with advancements in treatment.

There is life after cancer

As I celebrate the 12th anniversary of my transplant and my 12th year of remission, I want to impress upon those with cancer and their loved ones that there is life after cancer, there are great advances in research and treatment and if you want it there is a career for you after cancer too.

But most importantly after a cancer diagnosis there is always hope …… and a time when you can dream your dreams into reality once again.

Brenda

XXXX

 

 

10 things for 10 years

“May you live every day of your life.”
― Jonathan Swift

Today, 10 January 2017, I am officially living with cancer for 10 years. While the day of the diagnosis is not necessarily something to be celebrated, the fact that I have won through for so many years definitely is.

I have championed for 10 years. Back then I thought I had about 10 months to live and that I would succumb to the disease that year.  That was something terrifying to live with as I had a two year old boy and a nine year old girl and they both needed me. Being told I had a rare cancer that was incurable almost consumed me that day ten years ago.

While I am a strong person and I am delighted to be celebrating the past 10 years of being given a second chance at life, Brenda 2.0, has not come without its challenges and daily reminders that I am living with a really challenging illness.

In 2007 I spent 10 weeks in hospital for treatment, for stem cell harvest, for the transplant, and then for the shingles!

In 2008 I was admitted for a serious infection that I could not manage without IV antibiotics.

In 2009, on the first day of our family holiday, I was rushed to hospital in an ambulance with a pulmonary embolism. That was definitely one of my nine lives used up.

In 2010, there was another infection that I had to be admitted to hospital to treat.

In 2011 there was a respiratory infection.

In 2014 There was an admission to hospital for a serious respiratory infection.

in 2015 there was appendicitis. It should have been a keyhold surgery but because of my compromised immune system, it was five hours on the operating table as the infection and bacteria really took hold.

In 2016 I was told I might have a brain tumour and or MS. That diagnosis was given by a doctor in a small hospital who was not used to my complicated medical file and who panicked!

The list goes on. In between all of these I was at the hospital every week, every two weeks, once a month and now I go every eight weeks to haematology and every six months to renal care.

Even though I am in remission, you are never really done with the medical appointments and the daily reminders that you have cancer.

But today is a good day, it might even be a great day! I really and truly am celebrating the fact that I am still here and the hope that me still being here might just give to the medical team looking after me and to those who are newly diagnosed with this cancer.

When I was first diagnosed, I was always delighted to meet other patients and when they told me they were living with Myeloma for 5 years, I would do the maths and add five onto the ages of my kids. It wasn’t enough time. Then I met someone who was living with Myeloma for 7 years and I did the maths and added the 7 to my kids’ ages. It still wasn’t enough time. Then I met someone who was 10 years living with Myeloma and I thought, that’s better but it’s still not enough time. I have since met people who are living with Myeloma for 15 years and I realise now that I have become one of those younger Myeloma patients who is now creating new statistics by still being here after 10 years.

I have been thinking about this milestone date and year for a while and wondering how I might celebrate it. I have come up with a list of #10thingsfor10years.

It’s a list of 10 things I want to do to mark the 10 years. It’s as far from a bucket list as it could be because I don’t believe in those. These are things I want to do to celebrate, to mark 10 years of kicking cancer’s butt and to raise awareness of the disease (which is still rare) and also to show people that there is a lot of life to be lived after a cancer diagnosis. I am hoping I can count on your help with some of the things on my list. Here goes:

1. I want to perform at least 10 random act of kindness for 10 cancer patients and/or their family and maybe encourage you to do the same so we have 10 x 10 acts of kindness for cancer patients.
2. Do 10 things out of my comfort zone (I will need help with suggestions).
3. Do a mini SU2C (Stand Up to Cancer) event with at least 10 acts taking part and all donations going towards cancer research and/or helping Myeloma patients.
4. Postcards of thanksgiving and hope – send 100 postcards over ten weeks to say thanks to people who were there for me when I was ill.
5. Do 10 acts of faith – Novenas, Pilgrimage, Walks etc.
6. Have a thanksgiving event for friends and family in July to mark 10 years of my transplant.
7. Do at least 10 random acts of kindness for the doctors, nurses and staff looking after cancer patients. These are the ones at the coalface, the life-savers and we all know the conditions they are working in.
8. Raise at least 10 x 100 euro for cancer research.
9. Do 10 interviews in the media to share the good news that there is life after cancer and to raise the profile of Myeloma. It was mentioned on Grey’s Anatomy the other evening -it would be great to have that level of recognition and awareness of the disease here in Ireland.
10. Do 10 special things to celebrate with my kids and hubby.

If you can help me with suggestions please do. If you can help me practically with any of the above, I would be most grateful. All of the above will be subject at all times to how my health is but I hope that I can get through all of it.

Email me anirishgirlinterrupted@gmail.com if you can help with anything or want to make a suggestion.

If I can achieve even one or two of the #10thingsfor10years then I will be more than happy.

For today, I am simply glad to be here on earth and looking forward to taking the next 3,650 days, slowly, savouring each one, a day at a time!

Brenda xxx

Chapter 17 – The R word

I can never read all the books I want; I can never be all the people I want and live all the lives I want. I can never train myself in all the skills I want. And why do I want? I want to live and feel all the shades, tones and variations of mental and physical experience possible in my life. And I am horribly limited.

Sylvia Plath

In the middle of September 2007 I attended the haematology day ward in Tallaght hospital for bloods, review and to have a bone marrow biopsy. The biopsy would tell us whether the transplant had worked and we would also find out if the myeloma was gone.

I was calm and relaxed as I waited as I had been through the process many times.

I met Dr Sean and Dr Larry – the two doctors who had looked after me most often during my transplant. Dr Sean almost passed me by in the hallway without saying hello because he didn’t recognise me.

Dr Larry was the one doing my bone marrow biopsy and he too was shocked to see me. He remarked on the extreme weight loss while I coaxed him to give me plenty of local anaesthetic. A bone marrow biopsy is painful, especially once the anaesthetic wears off.
We got it all done and I was told to come in for the results two weeks later as part of my scheduled haematology appointment.

This diary entry was written at the end of that day eight years ago when I went in to hospital to hear the results.

Wednesday 26 September 2007
DAY WARD RESULTS

I can’t describe how in bits I was this morning. I was wide awake at 5.30am walking around the house, pacing up and down. Sleep didn’t come too easily last night either. I got very emotional with the kids this morning – I know they didn’t really understand why. I was uptight, nervous and it was very difficult to utter any words that made sense.

I had decided to go to the hospital by myself (again). I had all sorts of offers from people who were happy to come with me but I needed to do it on my own. If it was bad news I would have time to absorb it myself before I had to break the news to anyone else.

People knew I was getting my results today so my phone was hopping with texts all morning with good wishes and offers of prayers.

I dropped the kids to school and delayed a bit chatting to people – all the time prolonging the journey to Tallaght Hospital.

When I got to the hospital I had to have my regular bloods done so I headed straight to phlebotomy. Then it was up to haematology. I had a fair idea that some of the nurses knew my results but they couldn’t say anything. I had to hear whatever the news was from my consultant Dr Slaby.

In fairness they all knew how nervous I was and they got me into a side room to wait for Dr Slaby almost as soon as they saw me. He arrived and was a bit concerned about the cough I have. I was sitting beside him and I could see the computer screen. I was afraid to look at it as he pulled up my results. My left hand was shaking so much that I had to sit on it to stop it. I glanced at him and then glanced at the screen and lots of numbers and words blurred in front of me but then I thought I saw the words ‘no myeloma present in the bone marrow sample’. I thought I was seeing things so I closed my eyes because I was too afraid to hear bad news after everything I had been through.

Then Dr Slaby said the words: “We’ve done it. The Myeloma is gone.”

I punched the air with both fists saying YES！I wanted to scream the place down but I somehow composed myself. I don’t know how or why.

I honestly didn’t hear a word he said to me after that – something about maintenance treatment. Then he realised I wasn’t hearing him and he said “that’s for another day”.

He said he was concerned about my cough so he insisted I hang around for an Xray. I was bursting to get out of the office and he eventually said that’s it and we shook hands.

I ran out into the day ward and ran straight into one of the nurses who had taken care of me and I said ‘I’m in remission’ and she said ‘I know’ with a huge smile on her face. She hugged me and realised how badly I was shaking from shock so she put me into a side office and told me to dial 9 for a line out and not to come out or attempt to leave the hospital until I was a bit more settled. She said well done and left with a huge smile on her face.

I dialled 9 and called my hubby Bryan but there was no answer. Then I dialled my mother and just as she was about to talk to me I cut her off by mistake. I was all fingers and thumbs and couldn’t work my mobile. Bryan rang me back and it was one of the most emotional moments of my life. I could hardly get the words out. “I’m in remission”, I said and started to cry – tears of joy, of relief, of sheer unadulterated happiness. He said ‘you deserve champagne tonight so that’s what we will do’. It was just a moment I will never forget.

I called other friends and then my work colleagues as I knew people were waiting. There was such joy and love coming at me down the phone lines from family, friends, colleagues. My phone went into overdrive.

When I was satisfied that all my friends and family knew I switched the phone off and just sat by myself for a while taking it all in. I did it. I was in remission. All the awfulness, all the suffering and trauma, all the worry – I had done it. I was in remission.

End of diary entry

I remember leaving the room and meeting the other nurses – they were all thrilled as they had all been willing me to be well. I owe my life to this team of amazing men and women in Tallaght hospital. There is no way to ever repay them for giving me my life back but I am determined to try by staying well for as long as I possibly can.

There was such joy in the dayward but we all had to be mindful of people around me who were not receiving good news on the day I got my life back.

I went off for my Xray and skipped out the door of the hospital. I wanted to stop everyone I met on the way to tell them that I had done it! That I was in remission and that the myeloma was gone.

I remember heading home down the N7 singing along to the radio. A song by the Hot House Flowers came on called “I can see clearly now the rain has gone” I sang along to it at the top of my voice thinking how apt the lyrics were.

I can see clearly now, the rain is gone, I can see all obstacles in my way
Gone are the dark clouds that had me blind
It’s gonna be a bright (bright), bright (bright)
Sun-Shiny day.

I think I can make it now, the pain is gone
All of the bad feelings have disappeared
Here is the rainbow I’ve been prayin?for
It’s gonna be a bright (bright), bright (bright)
Sun-Shiny day.

Look all around, there’s nothin?but blue skies
Look straight ahead, nothin?but blue skies

I can see clearly now, the rain is gone,
I can see all obstacles in my way
Gone are the dark clouds that had me blind
It’s gonna be a bright (bright), bright (bright)
Sun-Shiny day.

My daughter Emma who was 9 at the time knew that I was getting results on that day. I remember her school bus pulling up and seeing her walking across the green outside our house so I ran over to her and we just stood in the middle of the green hugging after I had told her the news. She was so happy for me.

It was such an incredible moment. At the time I had no idea that my neighbour was watching us from her bedroom window – she knew I was getting results that day and she dropped in a card later that day telling me that she had stood at her window watching this beautiful moment between mother and daughter unfold before her eyes. She said it was impossible not to cry!

There were a lot more tears before the day was over but they were all tears of joy. There was a glass or two of champagne when Bryan got home as it dawned on all of us that I had beaten cancer.

We all take things in our lives for granted – time being one of them. We assume a path in life that includes growing old with the ones we love. At the end of that day eight years ago I knew I would never take time for granted again. Thanks to my diagnosis of cancer time is the thing I find myself most grateful for.