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

 

 

Chapter 16 – Picking up the pieces

I felt my lungs inflate with the onrush of scenery—air, mountains, trees, people. I thought, “This is what it is to be happy.”
– Sylvia Plath

So life goes on! Even though I was recovering slowly and feeling frustrated at the pace, I was also feeling almost on top of the world.

I had done it.
I had made it through the transplant.
I hoped I was in remission.

I would have to wait a few weeks to let everything settle before I could find out if I was in remission. It was hard to deal with that. I had been through so much for so long and I still had to wait.

I was busy again with the kids, Bryan and life! I was starting to pick up all the pieces of my life again.

We decided the kids needed to have some sort of a holiday before the Summer was over but we were limited by my physical condition so we decided on a few day trips and a visit to family in Cobh.

We had a lovely family day out in Dublin Zoo. I was glad of all the seating as we walked around as I needed lots of breaks. It was lovely to be doing something so normal again.

My diet and intake of food was improving and with it my physical strength.

Two weeks after my discharge from hospital I was back at the haematology day ward for a check up and I was able to drive myself there. What a difference a week makes.

My diet had improved from living on one yoghurt per day to a richer diet of soup, small baked potatoes, Farley’s Rusks (baby food) and beans.

I couldn’t tolerate any sweets or chocolate and bread was a no no as my mouth was so dry.

I was still having episodes of nausea and vomiting two to three weeks after I was discharged from hospital.

It was difficult and worrying for the kids to see that – Emma was worried for me despite reassurances that it was all normal. Cathal told me several times a day how happy he was that I had come home to him.

Before we knew it the Summer was over and it was time for school books to be bought and covered, uniforms to be sorted out.

I felt a tremendous amount of guilt over the lost Summer for the kids – especially Emma – and I vowed that the next Summer would be better. Emma and Cathal never complained at all about not doing much as I think it was the bigger picture stuff that we were all focusing on.

When everyone went back to school, play-school and work, I was still too unwell to return to my working life.

I was also still in the dark about whether the transplant had worked or not and it was time to find out.

Chapter 15 – Home is where the heart is (and the heartburn)

Being deeply loved by someone gives you strength, while loving someone deeply gives you courage. – Lao Tzu

Friday 3 August 2007

Woke up this morning to squeals from the kids……the younger ones that is. It was great to wake up in my own bed. Was pukey first thing and I guess this is what it is going to be like for a while. I am very shaky. My voice is trembling when I speak too.

I still can’t eat. Today’s breakfast was a tea spoonful of apple yoghurt, the same for lunch and the same for dinner. It is really horrible not to be able to eat and the longer I leave it, the harder it is. I have not had a proper solid meal now since 3 July – a whole month!

I promised Emma we would try and get her the Pokemon game. Got Dots to take us over as I am very shaky and not able to drive just yet.

Cathal went to his minder for a few hours – that is his routine and I am not able to mind him for a full day just yet. I can’t lift him yet as my arms are not strong enough.

I can’t even walk up the stairs without help.

I am so full of ideas and things I want to do that I have not been able to do for the past month, but I am not up to it. It’s terrible to want to do so much but to be so weak…..

In the middle of the day I was standing at the back door and a wave of nausea hit me and I was violently sick outside on the grass. When I turned around everyone was looking at me. I am so used to vomiting now that I don’t even think about it. It’s still not pleasant to have to vomit but it’s just happening so much, I just go with the flow.

Cathal came home in the afternoon and I put my feet up on the couch and played with him and chatted to the family.

It was a quiet day and evening but that is just what the doctor ordered – literally!!!!

Cathal in his police car

Saturday 4 August 2007

Everyone left me today. My sis went to Belturbet for holidays and Mam went home with her. I guess it has been hard for people who have been helping out to be away from their own places and comforts.

I was tempted outside by the mild weather but I got tired standing, watching the kids.
Bryan went off and bought a wooden bench for under the porch so as I had somewhere to sit.

I sat out on it for a while today watching Emma and Cathal. I can’t join in like I used to be able to – no going on the pogo stick for me for a while!

I was wrapped up in a big blanket with my bandana on my head as I am still very bald. My eyes are very sensitive to the light as they are still very red and sore. I must look strange to passers by, but I am alive and home, and that is all that matters.

We had a quiet day. I am not up for much. They don’t mind though as it is just nice for the four of us to be back together.

We watched Jaws 2 and in the middle of it I got a terrible cramp in my stomach and I went outside for some fresh air. Of course I ended up throwing up and had no time to run to the bathroom.

I am not sure how I am going to cope with the kids once Monday comes. I still can’t look at food or prepare it. The idea of handling raw meat or boiling vegetables turns my stomach.

I am surviving on three teaspoons of apple flavoured yoghurt a day. I just can’t eat anything else. There is a psychological battle now to will myself to eat. It is very hard.

Fell asleep before the end of Jaws 2. I guess they get the shark.

Sunday 5 August 2007

I woke just before 9am. Cathal came in and was snuggling. We had planned an outing but the weather was too bad. Emma was in and out all day in the rain and of course Cathal wanted to do the same. He is very clingy at the moment, which is to be expected and sure all I can do is sit around anyway so that suits him. My legs feel like two lumps of lead. I have no energy. Cathal wants to be lifted but I can’t. I know I will get stronger with time but it is so slow.

Cute Cathal

Monday 6 August 2007 Bank Holiday Monday

I had to wake Cathal at 9am. Emma was away on a sleepover so it was just the three of us so Bryan suggested a trip to our local shopping centre. I was delighted to be doing something so normal and boring.

I felt very sick all of a sudden in the centre and I had to make a dash to the toilet. It was not good.

I am still not eating but I tried a drink of smoothie which was okay for about three sips and then I felt sick again!

It is very hard to keep on top of things in the house. I was talking to my mum in law and she was horrified that I am on my own and intends to come up. I was so relieved.

I dozed on the couch while Cathal was having his nap this afternoon. I feel so tired, weak and useless!

The cat is pregnant again and about to drop any day. Another thing I failed to attend to due to my sickness. This could be a whole litter of kittens this time instead of the one she had in May. Oh dear.

Eating is still not great and I just need courage to try. I am so scared of being as sick as I was in hospital that I am afraid to try. I am getting weaker I think and afraid they will keep me in Tallaght hospital when they see me this week.

I am amazed that I am not teary and weepy. Maybe I have no spare fluids?

Despite everything that is going on with me – it is so great to be home.

Tuesday 7 August 2007

A normal work day for people but not for me. Cathal went off to his minder and Emma did not stir until nearly 11am. She came into me in the bed and we watched MTV Cribs.

More post arrived and there was a very funny photo collage from work which really lifted my spirits. People have been amazing with cards, calls, texts, flowers and all sorts of relics and prayers.

I have had Mass said for me in Lourdes, Scotland, England, America, Fatima, the Holy Land, Rome and all over the country. I have two drawers now full of cards and letters. The support is incredible from work colleagues and my bosses. Amazing. I could not get through this without the support.

I am still home alone during the day and I am struggling but my wonderful Mum in law is coming up to save the day. She was not happy about me being on my own. She will stay for a week or so and that should help me to get stronger and maybe I will be able to try eating again.

Neighbours and Emma’s friends are being fantastic. Offers of shopping and taking the kids are there all the time. Emma has been taken off for a picnic in the Japanese Gardens in Kildare so I will be able to rest for the early part of the afternoon.

Wednesday 8 August 2007

My mum in law came up today and she thought I looked a hell of a lot different to when she last saw me. Better, she thought, definitely better.

She cooked a lovely dinner but I couldn’t eat. I am still only managing one yoghurt a day. I know it’s not good but I just can’t eat.

I threw up again today a couple of times.

Thursday 9 August 2007

Today was my first visit to the haematology day ward since being discharged from hospital. I couldn’t drive so Bryan had to take me to Dublin.

I was nervous going in. Bryan had to drop me at the door as I could not manage a walk from the car park. I’m moving very gingerly as I feel so sick.

I threw up a few times.

The nurses checked me over. I had bloods taken. The looked at my central line wound and are happy with how it’s healing.

I told them about the food and eating issue and they told me not to be stressing. They will arrange a visit to a dietician.

All was good and I was let home again which was such a relief. They want to see me weekly for the foreseeable future.

I was really tired after the trip and spent the evening resting on the couch.

Friday 10 August 2007

I threw up again first thing this morning. It’s a crap way to start the day. Cathal stayed home with us today. I can’t manage him on my own but with help here it’s great. He’s very clingy to me and he keeps saying “You came home to me Mammy”. His little face looking at me as he says it is just adorable.

What must he have thought of me being gone as long as I was?

Saturday 11 August 2007

Feeling a little bit better today.

Had a good day and managed to have a few sips of tomato soup. My stomach felt very heart-burned afterwards ….

Had teaspoons of yoghurt for rest of the day.

Sunday 12 August 2007

There was Pandemonium with a capital P in the house this morning. Mom cat whose pregnant came in this morning looking very skinny. I knew that she’d had the kittens outside so we had to go hunting for them. We found them in the wooden house and brought the three of them inside – two are plain black and the other is like Rocky, the kitten she had in May. We settled them inside with her. They are adorable and Cathal and Emma are so happy.

The whole cat family. Mother in the centre. Her first born son Rocky to the extreme left and the three new kittens mixed somewhere on the right.

Cathal and Gizmo the kitten. He wasn’t sure about the dangerous things at the end of the cat’s paws!

Me receiving some cute kitten therapy

I drove today for the first time since 3 July. We went to Mass – my first Mass in weeks as I haven’t been able to go. I sat near the door at the front and felt every inch of the wooden seat. I couldn’t kneel as my leg muscles can’t get me up and down. It was lovely to be back and I said a prayer of thanks … and lit a candle ….. It was all a bit overwhelming….I didn’t stay around afterwards to chat. I’m not up to it.

I stayed in for the rest of the day. It was raining again.

I am starting to feel a bit better but I am worried about my diet and whether I will be able to eat properly again. I have no taste and my saliva has disappeared.

It’s going to be a slow process.

Also I have no clothes to fit me. It’s like I swallowed an Alice in Wonderland pill and shrunk.

Me looking pretty sick in early August 2007.

Chapter 5 – The Adjustment

In a time when I need a little hope I look at a photo of where I call home and think of the moment I’ll have when I go back with my trials and struggles carried in a box able to be let free and turn into achievements and happiness. – Cassandra Shea

It was only when I was back at home by myself for the first time that the reality of what was happening to me began to sink in. That first month in the hospital I was caught up with the business and the busyness of being sick. My journal entries give a sense of what was going on but there was a lot I wasn’t able to say during those days….. I just didn’t have the words. It was only when I was home alone that I was able to start to absorb all that was happening and all I was facing in to.

In all the tests I had during those first few days and all the investigations, I never thought of cancer. How the hell did I get cancer? How the hell did I get such a rare cancer?

By the Myeloma stats I should be a middle aged man but instead I became part of the 2% club – 2% is the percentage of Myeloma patients under the age of 40. I was 38 when I was diagnosed.

When Dr Wall told me I had myeloma I asked her two questions:

1. Is it hereditary?
2. Will I lose my hair?

Looking back I realise now how trivial the hair loss question seems but at the time I was worried about the kids – could they get this cancer from me and was my hair loss going to really upset them.

It might seem strange to people that I was on my own with my consultant when she told me the news. But that was how I wanted it. I also would have known if she had come in to see me and asked me to invite Bryan in. There was no hesitation on my part – I just wanted the news and some time to absorb it before I had to tell Bryan.

There’s so much that comes with a diagnosis of cancer – the weight of responsibility of having to cope with what I had just been told, the task of telling my loved ones – where do you start, what do you say, how do you say it?

My family knew that the results were due on that particular day so they were waiting, nervously to find out what was wrong with me. I called my Mum first and then my older sister Rachel. I told my Mum who was at home in my house looking after the kids and keeping routines going while everything else around me was falling apart. We cried down the phone at each other. When I told my sister she cried and then just said we all love you and you will get through this.

I called my mum in law Maureen and when I told her I broke down. She was very calming and said something similar that everyone loved me and that I was strong.

We sat down with the haematologist to discuss a plan of campaign and she explained in a bit more detail what myeloma was and what the treatment would be. When she said the word treatment I was so relieved. When I was told there was no cure I immediately thought – well how long have I got and when am going to die? This was all new to me and I had nothing to benchmark what was happening to me against.

When the haematologist confirmed to us that I would die without treatment it was just devastating. The death word had not been used up to that point and so it shocked me further and made me realise how big a battle I had ahead of me.

After that we were left on our own and I had a little cry. There were so many feelings and emotions flying around that it is just impossible to put one word on what I was feeling – what we were feeling.

There was fear and panic. There was grief and sadness – all our dreams together and our hard work to build the life that we had for ourselves and our children. Was that all gone now? There was despair, hopelessness and there were an awful lot of tissues used.

I always wondered how people coped with bad news like this. You see the way people behave when bad news is delivered in movies – in Hollywood there’s a drama and an art to it all. There is no artful way of receiving news like this in the real world. There is no manual to tell you how to be or what to say to people or to yourself.

There’s a business side to dealing with it too as there are so many other people to factor in. Close family, friends, work colleagues, extended family, neighbours, teachers and child minders……. So much practical stuff to take care of.

My mind was spinning – if it was a cartoon you would see stacks of those speech bubbles filled with just the one question mark?

You could be forgiven for thinking that I appear to have just gotten on with things but inside I was crushed. There was not a second of the day that I didn’t think about cancer. Those speech bubbles were full of cancer? WHAT? Cancer? Me?

It’s terrifying to be told you have a cancer that there is no cure for. It’s even more terrifying when it’s a cancer you have never heard of. It’s Myeloma is what I would say to people and they would reply ‘Ah yeah my sister had one of those removed from her arm’. No! Not Melanoma – this is Myeloma!

My thoughts in those early days were full of despair and blackness. Don’t get me wrong I was very single minded and determined to fight this  but there was a blackness that had descended.

The kids! How the hell can they cope without me? Cathal was 2 and Emma was 9 and we had so much living to do.

We had only just moved into a new house. Cathal was still a baby. How the hell was I going to tell Emma that I might not be around for her and how on earth was I going to contemplate saying goodbye to a two year old when he had only just learned the words?

It was just all so crushing.

There were practicalities to deal with –bills had to be paid, school and child minders had to be consulted and I did a lot of this from my hospital bed, despite protestations from Bryan. But I needed to feel useful at that point. I needed to feel I was going to be treated as same old Brenda. One of my biggest fears was that I would be treated like an invalid for the rest of my life.

My brain was in overdrive with thoughts and dreams crashing together. I am so used to working and to being busy and to have all oof that suddenly come to a full stop was very difficult to deal with.

There was a moment a few days after the diagnosis where I had to almost sit myself down, give myself a good talking to and give myself permission to be sick!

Friends and family were just so supportive. Nothing was to be of concern on the home front as family and neighbours rallied around with school runs and babysitting. My mum and mum in law took it in turns to stay with the kids at home so as we could keep some normality in the house. I sat in the hospital room by myself wondering if life would ever be normal again.

At home the Christmas decorations were still up. I had missed the end of the kids school holidays and those lazy January days when you eat the remainder of the boxes of Roses and watch movies you have seen a hundred times. I hated missing that and I started to wonder if that was my last Christmas ever.

I was relieved to be released from hospital at the end of January and to feel that we had begun the fight against my Myeloma.

I settled into a new rhythm of daily life. Cathal was collected by his child minder Chris who was a tower of strength to use. I was too weak to look after him at home those first few weeks and we knew that things were unpredictable so we wanted to keep up the routine.

A neighbour collected Emma for prmary school. I phoned the school to tell them about my news and to ask them to keep a particular eye on Emma and to cut her some slack if she turned up in her tracksuit instead of her uniform. They were very understanding.

I had not returned to work since beginning my Christmas holidays. I missed work but I knew I would not be physically able for it and there was the issue of picking up infections too when you are out and about in a busy office building.

I slept a lot in those early days as I rebuilt my strength. I had lost so much weight and my own body had in effect beein poisoning itself because my kidnerys were not able to do the job they were supposed to. As I started to respond to the treatment it was a relief to be able to go through a day without feeling sick.

But I knew that there was much more to come and that my relief was only temporary.