“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
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An Irish Girl Interrupted 