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 to take me out of my comfort zone

If you have stage fright, it never goes away. But then I wonder: is the key to that magical performance because of the fear? Stevie Nicks

If you have read my blog post 10 things for 10 years, you will know that number 2 on my list is: Do 10 things out of my comfort zone (I will need help with suggestions).

The first suggestions has come in and reads as follows:

How would ten minutes of stand-up comedy sound to you in a public venue with bad cancer jokes possibly the subject material but not essential.

How would it sound? Terrifying and totally out of my comfort zone, but I am up for it.

That’s one suggestion made and the challenge accepted. If anyone has a venue or an event they need a novice stand-up comedian at, please let me know.

I need nine more suggestions of things to take me out of my comfort zone!

 

Brenda

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 31 – Nothing is ever normal or ordinary again

No one’s life is ordinary. We’re all the heroes and heroines, with fate or flaws to bear. – Maeve Binchy

Nothing is ever normal or ordinary again after a diagnosis of cancer. While I went back to life and back to work, nothing has ever been quite as normal or ordinary as it was BC (before cancer).

You could say that being normal or ordinary is boring. And they are. But there are days when I would give everything I have just to be normally and ordinarily healthy.

Because of what cancer and then the treatment does to the immune system, it is never the same again. A common cold is never that common with me. A minor infection is never just that minor with me. Something more than a cold or an infection is so much bigger and more serious with me.

I have lost count of the times I have had to be admitted to hospital for ‘minor infections’. I have lost count of the times I drove myself in for a check-up, only to find myself admitted to hospital and having to go through all sorts of hoops and loops to get kids collected and the car taken home.

Normal is boring and I have had to come to terms with the fact that I will never have a normal response to any health issue again.

I can’t have anything done without checking with specialists first. I can’t go to the dentist without antibiotics cover. I can’t have a normal appendix operation like everyone else because the infection spread quickly and a one hour surgery became a five hour surgery.

I can’t have any part of me looked after in isolation – the team must know everything.

So that’s no big deal really! It’s not. But what is a big deal for me is worrying that I will go into hospital for a minor procedure, a minor infection, and just not come out again. It has happened to Myeloma patients that I knew…… that I knew….. past-tense. They are past-tense as they did not make it.

It’s hard to deal with this hanging over me. I have to be careful. I have to report in and consult as soon as something feels strange. I have been admitted to hospital with shingles because they were worried about the adverse effects on my organs. I have been admitted to hospital for a wheeze because they were afraid it was becoming pneumonia.

I have been admitted to hospital on day one of a family holiday and the plans have had to be cancelled. I have missed poetry readings by my talented daughter because I have been in hospital. I have missed school stuff with both kids because I have been fine one minute and in hospital the next. We can’t plan long term anymore as we never know how I will be. I hate that I have been ‘sick’ for 10 years out of my son’s 12 years. I hate that I have been ‘sick’ for 10 years out of my daughter’s 19 years. It’s tough on them. I hate saying no to things because I am in pain, or lacking energy.

When I get sick, I go from fine to really sick in a matter of hours. I hate the worry I see in their eyes when this happens.

Most days I get on with it and deal with it. Some days I don’t have the energy to just get on with it and to deal with something else. But I always do.

I know that these bumps in the road are a small price to pay for being mostly well and I am grateful for that.

But sometimes I would just love a streak of being normal and being well that lasts longer than a few months. I would love to plan a family holiday that is two year’s away. I would love to be able to be all the things that healthy Mums are. I would love to be fit enough to do all the things that healthy Mums can do.

Health is a crown worn by those who are well and seen only by those who are sick. I would love my crown back. I would even settle for a tiara of health at this stage.

Brenda xxxxx

 

 

 

Musings – Discovering my old life in Ballybay via Facebook

This is an old post from a previous blog on a different platform which I was reminded about today, so I thought I would share it on here. It’s from March 2014:

I don’t know if you ever check the OTHERS option on your Facebook messages. I don’t check it that often but did so today at lunchtime today and I found a message there from a girl I have not been in touch with for 35 years.

Her name is Maria Cosgrove and she is from Ballybay – a small town in Co Monaghan. I used to live there with my family until we moved away in 1978 after my dad, the local Garda, was transferred, as was the custom in those days.

We had great friends in Ballybay. I started primary school there. We had a gang called The Hall Street Gang. We had adventures like those kids in The Goonies, or the Famous Five or Secret Seven had. The Hall Street Gang was the gang of kids who lived in a cluster along Hall Street. We met in the lanes and the fields and sometimes in the Garda shed.

The Drumms, Maguires, McMahons and the McItaveys were the main members of the Hall Street Gang (I hope I am remembering the names correctly).

A photo taken sometime in the mid seventies, captures us in colour, outside the Garda Station which was really in our front garden, underneath the three big Cherry Blossom trees that adorned the grass verge on the way up to the door of the station.

There was no email, text, Facebook or Twitter in those days and the house we moved to did not have a phone. I recall a lot of tears the day we left as we hugged and promised to keep in touch and I do remember a few visits back for different things. Some of our friends from Ballybay also came to visit us too in our new home.

But time passed and we grew up in a brand new town and made new friends. We sadly lost contact with our friends from Ballybay.

But I have never forgotten Ballybay and the gang of friends we had.

I remember happy times in the house we had behind the Garda station.

I remember being outdoors in all weather, getting lost in the fields on purpose, collecting blackberries and selling them to local shops – sometimes the money went to the nuns in the Convent of Mercy and other times it went to buy sweets for the gang.

I remember plays we used to stage in the garden and in the Garda shed. We would charge people 10p to come and watch a variety show which was never very good, but which people (well other children) came to watch.

I remember Community Games in the big park. Relays, hurdles and my breath being almost taken away with the exertion.

I remember the teachers we had and moving from the small school to the brand new purpose-built school with the new carpets, the new desks and chairs that were proper chairs and not old benches with ink wells.

I remember Sister Philomena, who was small and gentle but very capable of keeping things moving. I remember a few years ago learning of her murder and trying to understand how something so awful could happen to someone so gentle.

I remember swinging and balancing on the bars and railings and my sister breaking her arm.

I remember being run over by my Dad’s car in the school yard and all the visitors to the house who I bet could scarcely believe I had survived – what four year old survives being knocked down, trapped under a car and driven around a tough tarmac school yard ? I remember our postman and Miss Salmon chasing the car and shouting STOP before it pulled out onto the main road.

I remember swinging on the gate and getting that little scar under my lip when the gate slammed shut. I remember walking the walls on the way up home.

I remember the embankment at the back of the corner shop where we disturbed a wasps nest and where my sister was stung several times. I remember the smell of vinegar on the stings.

I was part of an Irish dancing troupe in Ballybay. The costume was cream with purple Celtic designs. For the life of me I can’t remember the name of the Irish dancing school. I remember my dancing partners Damian and Catriona Carragher. We were a great group for the three-hand reel.

I do remember the sweet shop at the top of Hall Street, conveniently located on our route to school. The shopkeeper Mrs Daly always seemed old to me in those days. She had a counter with a glass front filled with trays of sweets. Depending on how much (or little in my case) money you had, you asked for the corresponding tray and knew that everything on it could be bought for halfpenny, a penny, two pence or five pence. I am not sure if there was a ten pence tray. Katie Daly was her name and through my conversations and subsequent connection with a Facebook page called BALLYBAY AND ITS PEOPLE, I found out that she is alive and well and in her 90s. How I would love to sit down with her for a chat.

I have been hanging out on this Facebook page for the past few days and I shared this picture taken as I mentioned earlier, in our front lawn adjacent to the Garda Station.

The Hall Street Gang sometime in the 1970s

Since posting the picture I have chatted to three of the people in it. I have not spoken to them since we left Ballybay in 1978. 35 year’s later and it’s all come back to life through the power of social media. It’s been great.

I am looking forward to having more memories refreshed by these new old friends from Ballybay. So do check that OTHERS folder on Facebook and if you are ever in the area do give Ballybay a visit.

It seems it has always been the place where everybody knows your name!

Brenda xx

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

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 – I bring more glad tidings of this blog being shortlisted for the Blog Awards Ireland

I found out last night that this blog has made it onto the shortlist for the Blog Awards Ireland in the Health and Wellbeing category. There are some great blogs included on the shortlist so I am in very good company up there with them. Check out the complete list of shortlists here.

That makes it two hurdles I have jumped over so far in the Blog Awards process and there are a couple more to go if I am to have any chance of making it as a finalist. One of those hurdles involves me doing a bit of spring cleaning on the blog – things like spell checking and a bit of dusting here and there. The other hurdle involves the element of a public vote and that is where you, the readers, come in. From 7 September you will have a chance to vote for this blog. I am to be sent a VOTE BUTTON which I will add to the site and I will also add information on other voting options.

You will note a list and some check boxes below that the judges will have to complete for the finalist stage.

Judging Criteria for Finalist Stage

• Is it written in an engaging, entertaining or informative style?

• Is the blog easy to navigate?

• Does the design compliment the writing and make it easy to read?

• Spelling and grammar – will it make our judges weep or smile?

• The Finalist list will be judged by an independent judging panel.

I would love to have your vote but for the moment you can stand easy. But, I shall be calling on you soon!

Brenda

Musings – Off the hook for another 8 weeks

“Be thankful for your allotment in an imperfect world.  Though better circumstances can be imagined, far worse are nearer misses than you probably care to realize.”
― Richelle E. Goodrich

It happens every eight weeks. The check-up date is circled in my calendar and the hospital appointment letter is stuck onto the fridge with a sheep fridge magnet (lest I forget). Then a couple of days before the appointment, I receive a text from Tallaght Hospital to remind me that I have an appointment. It invites me to phone the hospital to cancel it, if I have any signs of cough, cold etc. In eight years I have never missed one of these appointments. They are like my security blanket telling me that all is well.

I usually drop the kids to school on my way and I drive myself up to the hospital. The journey usually involves radio breakfast shows or whatever my current CD music crush is. Last Thursday it was ‘1989’ from Taylor Swift. I sang the lyrics badly all the way up. I’m still convinced she says Starbucks Lovers in her Blank Space song. Have a listen and see what you think!

I have found a shorter route to the hospital in the last six months so I take that and swing into the front avenue leading up to the hospital. The car park is a multi-storey one and it has very tight margins for the ramps. I could do it with my eyes closed at this stage but I am careful with my new Beetle as I make my way up to level 1. I even have my regular car parking space down at the very end of the row overlooking the A & E department.

My first stop is to phlebotomy and the urgent blood queue where there are only ever three or four people in front of me. I pass over my blood forms – one pink, one white and one green. They will take five to six vials of blood from me and check everything – a full blood count, renal, liver and bone counts and then they do the really important one – the free light chains – which is the indicator of whether there are Myeloma cells present.

They all know me at this stage. Margaret is the receptionist and coordinator and she is really chatty and pleasant. I don’t even flinch as the needle goes in. I know the vein to direct them to – it has never failed to give up it’s red treasure in all the years it has been pricked.

The vials are filled and the date of birth and name are matched to the labels. The bloods make their way to the lab so as my consultant will have the results before I sit down in front of him at about 11am. One one recent visit the phlebotomist queries how many vials of blood are needed for the free light chains test. I tell her it’s one red vial but that most times two red vials are sent off for free light chains. She looks at me curiously and checks it anyway in her notebook. I am right but I am still glad that she double checked. She asks me where I am working in the hospital and I tell her I don’t work there. She asks me if I am a nurse and I tell her I am not. She wonders where I get my medical knowledge from. I wouldn’t call it medical knowledge but you pick things up when you are doing the same rituals every eight weeks.

Next comes my little hospital treat – a chilled apple juice and a banana and walnut muffin. I never eat muffins at any other time but on these hospital visits. I sit in the cafe space and savour my treat. I take part in people-watching as I sit with my back to the wall. I imagine all the stories going on around me as staff, patients and family members mix and mingle in the cafe. I know that many of them are carrying worries about results just like I am.

Even though I have been doing this ritual for eight years I am still nervous about the results. How will my kidney function be? Did I drink enough water the last few days? Will there be any sign of the Myeloma? Will this be the time I get bad news?

After my cafe visit I head upstairs to level 3 to check in for the rapid access hematology clinic. They know me well too and I know my hospital number off by heart which helps to speed up the check in there.

Next comes the waiting – I have to wait while my bloods are checked and the appointment time is never what it says on the letter. I know that 11am means 11.30am or 11.45am. I don’t mind. The worst thing to be in this situation is stressed about time. It doesn’t matter what you have planned for after the appointment, it’s all irrelevant as your appointment will happen when it happens.

I pass the time by knitting, reading or chatting to other patients. Sharon or Roisin – two of the nurse specialists – will stop by for chats if they get a chance. I might see a patient who was transplanted when I was and we will catch up with each other and measure progress. I might see another familiar face who is on the same journey I am. I will always see new patients with fear and pain etched onto their faces. I am aware that I don’t see John any more or Julie. Sometimes I will ask and I will be told very gently that they have passed away. Sometimes I won’t ask because I know what the answer will be. I have seen many of my Myeloma ‘friends’ pass away. I know I am one of the lucky ones.

My appointment time comes and goes. Then my consultant arrives and I know he has just come from a meeting or a bedside visit to someone having their transplant. He’s hurried and busy. I can wait. I can always wait.

The butterflies start to flutter in my stomach when I see him take my hospital chart (I am on my fifth or sixth chart by now ). When he disappears into the office I know he is sitting in front of the computer calling up my blood results. I know how long it takes so if there is any delay I start to wonder is it bad news.

He comes out of the office and calls my name. I look up, take a deep breath and I walk into the office.

I know by his face that my results are okay. I sit down and he says the words I long for each visit “Your bloods are all fine and there is no sign of any Myeloma”.

I physically relax and all the butterflies disappear.

My consultant knows that I like to make a note of every result so he calls out the blood results one by one and waits as I take them down. I know all the official abbreviations by now. I note my platelet count, my hemoglobin, my calcium, my creatinine, my white cells, and my neutrophils etc.

Then we chat about any problems I have had – infections, lumps or bumps that shouldn’t be there.

He fills out new blood forms. We agree to meet again in two months – I say that as though I have a choice! (smiley face 🙂 )

Sometimes we talk about my remission being so complete and so steady. I am a ‘good patient’ in terms of outcomes to date and it must give the team a lift to have a success story like me.

We sometimes talk about what will happen when the myeloma comes back. I am reassured by him about all the option I will have once that happens.

We shake hands and off I go. The consultation lasts about ten minutes.

I am off the hook then for another eight weeks.

That was exactly the case last Thursday when I was in for my July appointment.

The rest of my day suddenly becomes relevant again as I head away from the clinic.

I sometimes take a few minutes to visit the chapel in the hospital to offer a short prayer of thanks. It’s nice to be there giving thanks rather than asking for something.

“Those blessings are sweetest that are won with prayer and worn with thanks.”
― Thomas Goodwin

I head back over to the car park to my Beetle. I take a few minutes to breathe out a few times and to allow my sigh of relief some space.

Then I turn the key in the ignition and head back to my life.

Chapter 28 – The Kids are Alright

“Parents rarely let go of their children, so children let go of them.
They move on. They move away.
The moments that used to define them are covered by
moments of their own accomplishments.
It is not until much later, that
children understand;
their stories and all their accomplishments, sit atop the stories
of their mothers and fathers, stones upon stones,
beneath the water of their lives.”
― Paulo Coelho

One of the most challenging things about being diagnosed with an incurable cancer is talking to children about it. It’s difficult to know what to say, how much to tell them and whether you owe it to them to prepare them for what might happen.

Cathal at the Cliffs of Moher 2010 It was safe where he stood despite the sign and we didn’t let him climb over

Obviously kids of different ages will have to be handled differently and when I was diagnosed we were dealing with a nine year old and a two year old. We are now dealing with the on-going issues of an incurable cancer with an 18 year old and a 10 year old. As life moves on and the kids grow up, so too does our approach to what we can say to them.

On the beach 2009

I find myself now dealing with an adult in my daughter Emma – a bright, intelligent young woman who knows exactly what my cancer might mean for me and by consequence, our family, in the future. When I was first diagnosed she was the same age as my son Cathal is now. Knowing I had to prepare myself to tell the kids, I asked for advice from someone in the hospital as to what to say  – well to Emma, as Cathal, at aged two was just too young to know what was really happening. Unfortunately, there was no one available to talk to me so we found ourselves sitting in the hospital room with Emma on her first visit to see me, having to find a way to tell her about my sickness. We decided she needed to know just enough so as not to be kept in the dark, but not too much in case it scared her. I told her I had bad cells that would need to be treated with chemotherapy and that I would lose my hair. I told her that I was in the best place with the best doctors and that she should do her best not to worry. Of course she worried and I know that she suspected and probably knew that it was much worse than I was telling her at the time, and I regret that now. She must have known how serious it was with all the sudden visits from extended family and all the flowers and cards arriving. I think by giving her the word cancer as a diagnosis, I was afraid that loose or accidental talk on TV, in school etc. might make her more worried.

Emma doing her most favourite thing in the world

I did eventually tell her in detail what I had and that was on the day I found out I was in remission.  I explained to her what it was and again I didn’t focus too much on the ‘no cure’ line at that stage. She told me that she had known all along that things were more serious than I was letting on. She said she had known by how worried her Dad was and how people sometimes stopped talking about me when she came into a room. I was glad to finally have my cancer out in the open with her.

A few years later when she was in secondary school and when we thought all of it was behind us, Emma got very upset one day in school. She was about 13/14 at the time. It was the Autumn after I had been taken away in the ambulance with the pulmonary embolism.  I was called by the school and I left everything and went to collect her. I knew there was something on her mind and I was worried that it was something happening in school. We drove home and I switched off the car engine and told Emma that we were not leaving the car until she told me what was wrong. I was really worried. I prompted her with questions about school and life in general and she said that nothing about those was bothering her. I said that there was something and then it all came out. This is what she said:

“Mammy she said, it’s you that is worrying me. I am worried that something is going to happen some day and that I am not going to get to say goodbye. I am worried that you will be out somewhere and that something will happen and no one will know how to help you. I am worried that you are going to be taken away in an ambulance some day and that you won’t come back. I am worried that you will be told someday that it’s the end for you and that I won’t have all the time I want to do things with you. I love you Mammy and I don’t want you to go anywhere.”

I was floored. I started to cry and Emma burst into tears and we just sat there in the car, in the driveway of our house hugging each other. We could see the two cats sitting outside mewing and wondering why we were ignoring them. Then it started to rain and their mews got louder and we burst out laughing. I opened the car door and we dragged the two cats into the car.We laughed and cried all at the same time. The cats broke the blackness of the blackest of situations.

I took Emma’s hands in mine and I can remember the words I said to her as if it was yesterday. I said:

“I promise that I am being looked after by the best doctors and the best team in the country. We have some of the most talented myeloma experts in the world so I promise I am in the best care.

I promise you that all my family, friends and work colleagues know exactly what to do if I am taken ill when I am with them and away from you.

I promise that I am well at the moment and that I am not hiding anything from you

I promise that if I am told I only have months or weeks to live that I will tell you because I know that there are things you will want to do with me and things you will want to say to me.

I promise to tell you everything that is going on with my check-ups from now on – even if the detail bores you at times.

I promise that I will fight this and to do my best to be around for you for as many years as I can.”

It was one of the most heart-breaking and difficult conversations I have ever had to have in my life but when I looked over at Emma I could see that a huge weight had lifted off her shoulders and that she believed and trusted that she would be kept inside the loop about everything from that moment on.

I offered her the chance to talk to someone outside the family if she wanted to, but she said she was content with knowing that nothing was being kept from her.

In a way it made me regret not giving her more information sooner than that but I was trying to protect her from all the awfulness and the questions that my diagnosis would raise for such a young child.

Funny feet in Rome in 2011

About a year after the car conversation Emma started to write her autobiography as part of a school exercise where she had to tell the story of her life using all the letters of the alphabet. This is what she wrote for the letter M.

M – Myeloma

Myeloma is a cancer of the blood, and something I know more about that I would ever wish to. In 2007, my mother was diagnosed with Multiple Myeloma. The cause of Myeloma is unknown, and it is also an incurable form of cancer, as of now, but there are groups working on a cure.

When my mother was diagnosed with Myeloma, I was nine, and most of our long night in the hospital was, in my case, taken up by the personality test on Pokémon Mystery Dungeon Blue Version. I was having a difficult time getting a Squirtle that night, and at the time I never realised how significant that hospital visit would be, and just how many times I would visit that hospital in the weeks and months that followed.

My mom had been sick all Christmas, vomiting up most of what she ate and spending most of her time asleep on the couch. I was worried about her, even then wondering at how often she had been sick, and the time she had spent in the hospital a few months before. She had been complaining of severe leg pain and no amount of CT or MRI scans had revealed the source. After that, she was fine for a while, but around Christmas she was extremely ill, and eventually she allowed us to bring her to Tallaght Hospital to see if something was seriously wrong.

Something was seriously wrong, but I would never, not in a million years, have thought that it was cancer. I remember when they finally admitted her and I went in with my dad. Seeing her in a hospital gown, looking so ill, scared me.

I’m the kind of person who, when I choose to love someone, I love them fiercely. It was very difficult for me to watch what the chemotherapy did to her. I used to visit her every day, even when things were bad and she would vomit all the time. That stuff, it didn’t bother me, as much as the thought of living without her. I used to think that she would never be the way that she had been before, she was so emaciated, so fragile and sometimes I wondered if one day I might come in to find her bed empty. If one day she might just disappear from my life and the house would always be as quiet as it seemed when she wasn’t there, as though someone had ripped out its heart. I used to imagine having to watch my dad crying over her body, and imagine how my brother would have to grow up without a mother, how I would have to grow up without her.

Before her diagnosis, I never questioned that my mam would be there for my first day of Secondary School, for my graduation and for my wedding. I never realised how much it meant to me until the cancer threatened to take it all away, threatened to make me that girl whose mother died, the one that teachers always look at with sympathy. It made me realise what she meant to me, what mothers are to girls.

I was afraid of losing her, having to try and tell my, at the time, two year old brother that mammy was never coming back, to show him that video of her in the hospital, saying she missed him. I didn’t know how he’d ever understand, how our little mammy’s boy ever could understand that the centre of his universe was gone forever.

I was afraid that I’d be a teenager with no mother to argue with, no-one to drive to the shop when I needed female products. I didn’t want to see my dad cry, to see my brother come home from his friend’s house and realise what he was missing in having no mother.

Her cancer has made me treasure what I have, the people I have and though I can imagine the life where the cancer won, I also can’t imagine my mother without cancer. I mean, I don’t think of her as being my mother who has cancer, or anything, but so much of my life has been influenced by her having cancer, I can’t think of a world without ‘My Myeloma’ and ‘The Big C and B’.

Myeloma is a part of my life, and though I hate it, hate what it’s done to me, the realities it’s made me bring into existence in my mind, the tears it makes me shed even as I write this; it is a part of my mother.

My mother the cancer survivor, the creator of ‘Twitter Xmas Single’, the coordinator of the Cill Dara Writers’ Circle,  the co-coordinator of the WriTeen Scene, the presenter of Religion Matters on KFM.

My mother, my hero, Oh Captain My Captain. She gives meaning to Carpe Diem. She is the bravest person I know. Atticus Finch once said that real courage is not a man with a gun, “It’s when you know you’re licked before you begin but you begin anyway and you see it through no matter what. You rarely win, but sometimes you do”. My mother won the fight against cancer in 2007, she could have just resigned herself to the eventuality that this cancer will kill her, but instead she now strives to live her life to the full and I don’t think that anyone could contradict me when I say that she has.

©EmmaTobin 2013

When I read that piece by her I cried so much. Why did I have to be the one to force her to have to deal with such big questions in her life at such a young age?  I felt guilty for a while and then I read it again and again and I realised that regardless of what happened to me, Emma was going to be OK because she had found her voice and was going to be able to process grief and sorrow should the worst happen.

Lego store in Berlin in 2014

On the Sherlock TV series trail in London in 2013

With Cathal it was a completely different story as he was so tiny when I was diagnosed. He was 2 and all he cared about was the fact that I had suddenly just gone from his life. His calls to me asking me to come home were harrowing. I cried every time I hung up the phone.

After my transplant and my final release from the hospital, he would come up to me several times a day and say you came home to me Mammy. It used to take all my will and strength not to cry and I know it made other family members very upset to see it.

As Cathal got older we began to tell him more about my hospital check-ups and eventually when he was close to age 8/9 we told him what Myeloma was. After that he began to ask questions and over the course of a year or two we began to fill in more and more detail for him – without scaring him. He turned 10 in August of 2014 and he turned to me one day and said Mammy I am so glad that you beat cancer. I replied that I was very glad too. He then said: “The reason I am very glad that you beat cancer is because I know that I might not have remembered you if you had dies when I was only two. I was so little that I might have forgotten you”.

I thought I was going to be sick with the shock but I knew I had to stay calm and to deal with this one. I said that I was very glad to be his Mum now that he was 10 and that I hoped to be his Mum for a long long time. I also assured him that Emma and other family members would never have allowed him to forget me. He said “Yeah you are probably right, but I’m still very glad you beat cancer and that I get to remember you myself”.

That was his way of verbalising to me his concern and his fear of not having me around as he grew up. Every so often now he will bring it up and ask me how I am but he’s not gloomy or sad about it and because we talk about things so openly in the house, the future fear has been partially dissolved for him. I am sure that as he gets older he will have more questions and will become more aware of what a diagnosis of incurable cancer means and we will cross that bridge when it comes.

Japanese Gardens in Kildare in 2013

Cannonball in Cobh

Cuddling in Cobh Co Cork

There are books and websites full of advice on how to talk to your kids about cancer. If I could go back I would probably not do much differently as I trusted my instincts and I think they were right at the time and for the ages I was dealing with. No one knows their child better than a parent and I would always go with gut instinct when it comes to things like this. Trust yourself and the rest will fall into place.

If you feel that you need to talk to someone outside your family then do it. I was very challenged by the out of the blue reactions and questions from the kids but thankfully I was able to deal with them. There will be tears, more predictive grief and you will need space and time to process it all. There’s the TIME word again…… oh the damn irony of time being the one thing you really need when you are dealing with incurable cancer.

Since my diagnosis I have become much more aware of documenting memories of me and the kids. I have thousands of photos, audio recordings of silliness we get up to together, scrapbooks of tickets from outings and holidays together. Emma and I are doing city trips for the past few years – we have been to London and to Berlin and we hope to do Amsterdam this Summer.

I am quietly and carefully creating an archive for the kids of memories made and mischief managed by us as a family. I owe it to them and I want them to have it just in case time catches up with me.

🙂

Scout Camp in 2009

Scouting in Germany in 2010

Scout camp in 2009

Scouting in Germany with Emma in 2010

Channeling Kate Winslet in Cobh Co Cork near where the Titanic left from before it sank

Cathal getting curious in Cobh Co Cork

Silliness in the car in 2015

Note: If you want to read more of Emma’s ABC of Being a Teenager Blog then you can get her posts on the link highlighted.