Here’s to being here!

“Today you are you, that is truer than true.
There is no one alive who is youer than you.” – Dr Seuss

Tuesday 26 September, marked the 17th year of hearing the ‘R’ word for the first time. R for remission. I remember vividly the day and looking back I have no idea how I held it all together. 

The R chapter is there in the book to read and I am not going to revisit it. 

I have seen a lot of celebrations of being cancer free over the years and some of them involve the ringing of a bell. That wasn’t an option for me and I didn’t mind as it would have felt strange to me to being announcing to everyone in the day ward that I was cancer free while they were still in the midst of it. 

I remember back to the early days of being in the day ward for treatment and not having any idea about what was really happening – not understanding the how or the why of it all. The nurses and doctors did their best to ensure some level of privacy but I used to overhear things being said to other patients – things I wasn’t physically or mentally ready to hear. I used to have my ear phones in so as I could drown out some of the reality I wasn’t ready for at that time with some of my favourite songs and radio shows. 

In time I got over the fear factor and wanted to consume every answer to every frequently asked question about my cancer. I even managed to come up with some that had never been asked before! 

Now, 17 years later I am in still in and out to the hospital. I am not a member of the day ward club any more but I pass it once every few months when I attend hospital for a check up and a chat with my consultant. I am always grateful to get in and out again with no more than a glancing brush past the top of the day ward where the really serious, sad and heavy duty treatments and conversations are taking place every day. 

So I type this with an attitude of gratitude for 17 years of memories and mischief made. 

I honestly thought back then I might not get to do a tiny fraction of the things I have done. I am happiest to have been able to be part of the lives of my children. It’s not the milestone moments but the millions of tiny little day things that have made up the last 17 years.

I love our Dungeons and Dragons sessions. Our board games (just not Monopoly) and Wii games. The movies we have watched together in movie fests – introducing them to all the great 80s movies and passing on my love of Star Wars, Lord of the Rings and all sorts of comedies. 

I have seen both of them through primary and secondary school. They were so young and so hard done by when I was diagnosed. Cathal was 2 and Emma was 9. How unfair a hand to be dealt. But they have borne it brilliantly and living with a Mam who had battled a bit has given them a great outlook on life that and a wonderfully kind and compassionate streak towards the world around them. 

As for himself. He’s the Rock! There’s no quote I can borrow that will do him justice. 

None of this was promised or guaranteed, It’s the same with all cancers. There’s the medicine, there’s the personality and the will and I also believe there’s a large dose of luck involved in it all. 

So here’s to being here! 

B 

PS Not sure what happened to the first of these posts but it went off on a trip into cyberspace. Apologies if you receive this twice.

Living life to the full

I thought I had best pop on and revive this blog. I recently finished up a volunteering project that took up a lot of my free time and so I admit I neglected this blog. Now that I have my writing time back I intend to get a little bit better at posting here more regularly.

So how are you?

It’s been quite a while since I said hi. Who knew a global pandemic was on the horizon? I really hope that you avoided it! I avoided it all the way through by keeping my distance, wearing my mask and just when I thought it was all over, I picked it up on a work trip to Rome in June 2022. I was pretty sick with it but thankfully came through it with the support of jelly, pot noodle and lucozade. Before I was finished with it I passed it on to Bryan and Emma!

Since I last wrote I have changed jobs, have finished doing school runs and lunches as both kids are now well and truly through secondary school and well into college. I have become an auntie again to an adorable little boy called Oisín.

I have taken to art and will add a thread to this blog to share some of my average and really terrible pieces of acrylic and oil painting.

This is a very quick lunchtime hello. I will get in later and give the blog a lick of paint and some new carpet.

It’s nice to be back.

B

xxxxx

‘Herself’ the Book Tuber

Yeah that’s a thing apparently – book tubers! These are people who review books [with or without spoilers] on YouTube. You learn something new every day.

Anyway this is a quick post because ‘herself’ as I call her – my daughter Emma – has created her first book tube video and a new channel on YouTube called The Disreputable Reader.

The book she has reviewed is a Young Adult Fantasy called Sorcery of Thorns and this is the video 

If you like it you might give it the thumbs up and leave her a comment of encouragement on YouTube.

As ever I think it’s great as she speaks so confidently and with such passion.

That’s it for now.

Brenda

xx

 

 

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

 

 

In Heaven There Are Beaches

Listening to Vicky and Emma these past weeks and days has been heart breaking. They are mums who are victims of a massive scandal of misinformation and miscommunication around cervical cancer and who now find themselves living with terminal cancer. With advances in treatment their cancer should be the least significant thing in their lives and it should absolutely not be the thing that will cause utter devastation for their families.

That would be a wish that all of us mums with cancer would have – that it would not devastate our families by taking us away from them.

When you go for screening for any illness or when you have a suspicion that something is wrong in your body, you want and need the experts around you to act with haste. You want all the tests that there are so as you can get to a diagnosis as soon as possible. Ultimately you want a timely diagnosis and a treatment plan.

When you are in the middle of treatment for a serious illness you want to know that you are getting the best of care and the newest and most effective drugs. You want to know that there is no delay in any aspect of the treatment and that no one is found wanting in their duty of care towards you. You want to know that every single person in your chain of care is throwing everything including the kitchen sink at your illness!

When you do find out you have cancer, as a mother, your first concern is your family and specifically your children. You immediately move your needs down the pecking order and think of your children first and then your husband and partner. Practical issues come to the fore:

• how should you best break the news to children?
• do you need to tell their schools?,
• do you need to involve the parents of your child’s friends?

Time becomes an issue as you want your kids to hear the news of the diagnosis from you but you need time to come to terms with the news yourself. Then your thoughts turn to managing the illness and the treatment so as you can still be Mum/Ma/Mammy/Mother.

More practical things come to the fore as you face into active treatment and time in hospital as inpatient or in the day ward:

• Who will do the school run that is usually done by you?
• Who will make sure the white shirts continue to come out white in the laundry when your husband has a habit of putting everything into the same wash at 60 degrees?
• Who will read to them before bed when you are away in hospital and your husband is with you?
• Who will know how they like to be held when they are ill/sad/hurt/scared?
• Who will make their lunch just the way they like it?

When you are dealing with an incurable cancer that has the potential to be the thing that kills you, you start to do the maths and make bargains with yourself and even with God:

• • please just let me live until they start school or finish school.
  • Please let me have time to allay their fears and concerns
  • Please let me hang on for the small milestone

The maths and the bargaining increase as you move on in treatment. Time is everything. When you are coming to terms with a diagnosis of incurable cancer or terminal cancer you want to know exactly how much time there is. It’s not time to go to Disneyland or on some grand cruise, it’s ordinary everyday time to make memories and mischief with your kids. To make sure that himself knows where everything important – like birth certs and their first drawings are; to have time to listen to what the kids need to say to you; to tell them every day that you love them; to write letters to them; to close out loose ends, to just sit with them and try to impart a lifetime of stored up wisdom and guidance that you have been saving for them as they grow up.  Time is everything.

As a working Mum you worry about financial security and the extra financial burdens on the family if the worst should happen. You want and need time to make lists and to plan – that’s what us mothers do!

I am that mum who was told she has incurable cancer. My presentation with concerns was taken seriously and I was given blood tests that day. I was in hospital that night and had a diagnosis within eight days.

The date I got the news was 10 January 2007. I was 38. I was in the same age range as Vicky and Emma are now. My kids were aged 9 and 2.

It was a stark diagnosis. Myeloma is incurable but treatable to a point but with no absolute guarantees of success. I was horrified and terrified each time I thought about not being around for the kids and for Bryan. The first question and fear I had was whether Cathal would ever remember me as his mother as he was only 2. Then I had frustrated and angry tears at the thoughts of Emma going through her teenage years without a mother to argue with and to confide in. And then I had to look Bryan in the eye with my diagnosis and try to find the words to express the lifetime of love we might never have because of the cancer.

The day after the diagnosis we knew the plan of treatment and the goals we had to achieve to try and get out the other side of an incurable cancer. While the treatments are well tested and used more and more every day, I was a member of a really exclusive cancer club – only 222 people are diagnosed every year with my cancer here in Ireland and only 2% of all those diagnosed with myeloma are under the age of 40.

The treatment began in earnest on 11 January 2007. It was a year long process from initial treatment and chemo; to stem cell harvesting; and then in July 2007 a stem cell transplant. The treatment was harrowing and difficult and there were times where there were some doubts about whether I would come through it fully. I was gravely ill as a result of the side effects of the high dose chemo.

After a month in isolation, ten weeks in total in hospital, I was told I was in remission – the date was 26 September 2007 and it felt like I was being given back my life for myself but for my family too.

We did nothing extravagant to celebrate – we were emotionally exhausted, drained from the relief of the news and I had a long road ahead as I was physically very week. Even after the word remission was spoken, I was told there were no guarantees.

Eleven years later I am still here living with an incurable illness. The nine year old is now 21 and has just finished college. I have gotten to see her blossoming into a beautiful young woman. The two year old is now a handsome young man of 13 (almost 14) and he is just finishing his first year in secondary school. I have had the luxury of time.

I feel so frustrated and almost guilty that I get to have time that some of these other beautiful and brave women caught up in the cervical cancer scandal did not get/might not get and will not get. I am so angry that the people who were charged with looking after us, did not do their jobs.

That beautiful and brave young mother Emma’s words from her Morning Ireland interview this morning will haunt me forever as she has the same fear about her kids remembering her after she is gone. I shared that fear about whether the kids would remember me and would know that they had a mother who loved them and who was proud of them every day of her life.

My daughter wrote this poem about me and it captures the essence of what she would have been prepared to do if I had to say goodbye. My daughter Emma would have been prepared to ‘dream of a heaven without her for me’ and she would have made sure that her little brother would have known about me and never been allowed to forget me….

There are no words I can say to Vicky, to Emma and all the other women other than I’m sorry. I am so sorry and so angry that you have all been so badly let down……that those people who should have been fighting for you and your survival have utterly failed you….I am so sorry. I hope that you will continue to fight and to make memories with your families……We will all do our best to make sure you are never forgotten….

In Heaven There Are Beaches 

a poem by Emma Tobin 

When I was nine you turned into a skeleton,
and disappeared, new car with uncomfortable
seats. I forgot where I parked you and our souls
entwined in some bloody and primordial
place threatened to rattle apart like trollies
in hospital corridors that never go anywhere.

Speaking of going places I wondered, where,
as you dwindled and ruptured and women in off-green
cheerfully hooked you up to hang on the edge
of existence. You lied to me about what was
wrong but reflected in your bloodshot eyes I
dreamed a heaven without me for you.

Even though such a place could never exist, futile
among the strangling wires of your life
lines. They pumped you full of chemical bullets
to kill the monster inside you and I watched
like a child (I was a child) unwilling to admit
that mothers should die first.

The inside of your mouth a battlefield of bloodied
flags wedged between your molars, God spurting
from your nose. Your face a scar-flecked landscape where
there are no words for watching your mother cave in.
Bailing water out of her stomach, you taught me
to swim and now I watched you drown.

You were some grand theatre I watched from
the doorway hiding hands in my pockets. I
was afraid you’d see the ghosts of funeral
handshakes. You were not a woman we would
not bury a woman, but the soul of everything
I wanted to be.

My friends were scared of turning into their
mothers but mine saw God in bloodstains and
mine almost slipped between my fingers. They
were small fingers I imagined them raising
your son and fixing the collar of his school
uniform. I’m sorry I imagined.

I would have told him that you were like
beaches and tides you were a love that
always came home. You would wear us
smooth until we shone and take us away
in your pockets. He would have known
that you’d leave heaven for him.

When I was ten they sent you home in gauze
and I did not trust your bones to hold
you together for years. I snuck around you
with scaffolding and glue until I could
shout at you again. Not the big bad wolf
your daughter who couldn’t blow you down.

I did not always believe in this, your shadow
on the other side of glass your shoes on the stairs,
your voice somewhere nearby. I think I might be
imagining you sometimes I think I might be mad.
I think we might be alive.

Copyright: Emma Tobin

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

Musings – Blood Cancer Awareness Month

September is Blood Cancer Awareness Month. Personally, I am all too aware of blood cancer and the impact it can have on a life, on a family.

However, there is a campaign with a hashtag to #MakeBloodCancerVisible. We are being asked to share our stories of living with blood cancer. Myeloma, my cancer, is classed as a blood cancer. About 222 people are diagnosed with it in Ireland each year. It does not feature in the most common cancers affecting men and women here in Ireland. It is classed as a rare cancer. The difficult with being diagnosed with a rare cancer is that there is very little out there on the cancer, very little other experiences to draw on, very few if any celebrities involved with the cancer and no fundraising on a grand scale.

My story is available here for anyone to read. I hope it has helped someone newly diagnosed with this rare cancer.

You can also read some stories about people living with Myeloma and other forms of blood cancer here.

The Irish Cancer Society is a great source of information. You can check them out on www.cancer.ie.

On September 27, Blood Cancer Awareness Month culminates with the first European Blood Cancer Policy Summit organized by Janssen and the European Centre for International Political Economy (ECIPE). A distinct lack of awareness means that blood cancer is not prioritised at the EU level or by many national governments. This is resulting in severe gaps in healthcare delivery, such as delayed diagnosis or misdiagnosis, inadequate access to new, innovative treatments and proper care for the people who need it the most. Working together with ECIPE, Janssen hopes to start shaping that debate.

I for one welcome this news. I would hate to think that resources are not being put into research into a cure for Myeloma, because of a lack of awareness about the disease. Those of us living with Myeloma deserve attention, resources, and even a cure.

Please consider sharing my blog post and spreading the word about my rare cancer.

Oh and if you are eligible to give blood or any type of blood products, then please do.

Brenda xx

 

 

Musings – The Routine

I have a certain routine for my hospital haematology visits. They take place every eight weeks so it is a routine I have honed over the past few years.

I leave at the same time, head the same route up the N7 and cut off after City West. I park on level one of the hospital car park. I check in with the lovely receptionist and hand in my blood forms. My blood samples get taken and sent to the lab and then I sit and wait for an hour or so before heading upstairs to register with haematology rapid access clinic.

While I wait I buy a copy of The Irish Times, an orange juice and a banana and walnut muffin. I do the crosswords while I wait. Once in the clinic, I see the consultant, have the chat, bring up any issues, ask advice and nine times out of ten I get the all clear and am sent home. I take a detour to the hospital chapel on the way out to say a prayer of thanks. 

The routine keeps my nerves at bay. Yes, even after doing this for nine years, I am still nervous at each appointment. I am always hoping that the all clears will continue and that I won’t be kept in because of an infection or because of blood ox level (which happened once). I am always afraid that any one of these check-ups will be the one at which I receive the news that the cancer has come back.

The routine is important. This morning my routine is completely out of sync. I left home slightly later than I usually would as I am on holidays and did not hear the alarm on the first ring. There was no traffic at all so I flew up with no queues. I had to park on the second level as I just missed the last space on level one. A brand new person took my bloods and there was no sign of the lovely receptionist. Then I got to the cafe and there were no banana and walnut muffins. I had to settle for a blueberry one. I did the crossword and finished my refreshments and went up to the haematology day ward. It wasn’t where I left it eight week’s ago! I had to go searching for it. Someone had moved it to a completely different floor.

Needless to say this development has done nothing to calm my nerves. My nerve noises and voices seem louder today.

Keep your fingers crossed for me and if you do the prayers thing, you might include me.

I am hoping for another all clear and for a return of my hospital routine to just the way I like it.

Brenda xxx

Musings – #GratefulTweet

 

Two pictures shared today

In black and white
a pic of me today

In full colour
a pic on this day nine year’s ago
midway through stem cell transplant
and showing
the effects of chemo
Not your basic poison
No the high dose kind
Graphic
Gross
Grotesque almost

Our bodies are amazing
Such healing
Such recovery

At times hopeless
But I never lost hope

Here I am
Living life to the full

Busy being me
Busy being B
Busy just being.

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Musings – I hope the tea is good in heaven

On this day 10 years ago my beloved grandmother died. She was a good age as they say and she passed away after a short but very challenging battle with Esophageal/Stomach cancer.

Her name was Mary Elizabeth Drumm (nee Egan). She used to joke that she was called by one of the Queen’s names. She was also known as Babs by some of her family as she was the youngest. When we visited relatives with her in Athlone she went from being our ‘Mammy Drumm’ to Babs.

I think I was the one who first called her Mammy Drumm. When I was just short of two my younger sister arrived into the world. My mum was 25 but she had three girls under the age of 4. That was more than a handful so I was sent off to live with my grandmother Mammy Drumm (My Dad’s mum) and my other gran came down to be with my Mum, the new baby and my older sister. After a couple of weeks with my ‘Mammy Drumm’ my Dad arrived to collect me. I am told that I didn’t want to get into the car, that I wanted to stay with my Mammy Drumm. I believe my gran also asked my Dad to leave me with her for a little longer.

We were her only grandchildren. As a young married woman my gran had a number of miscarriages and a stillbirth. She had also lost her beloved eldest son Paddy when he was four and when my Dad was just nine month’s old.

They lived in Gort in Co Galway at the time. Paddy was known all around the village as he was feisty and full of character. He would call to some of the houses and speak to the housekeepers and he would say ‘I will say thank you if you give me bread and jam’. They would always comply and he would always say thank you. Paddy was hit by a car/truck when he was outside playing. He was taken off to the hospital where they kept him in and where initially they refused to let my gran see him. She was having none of it and demanded to see him. Her husband Mick was in the army at the time and they were part of a very close-knit community in the army and in the village.  They spent time with Paddy in the hospital over the days that followed. They had no car so they would get lifts and cycle 20 miles to be with him. Paddy had a broken leg and so it was covered in plaster. The medical team didn’t pay the attention they should have to the large cut which got infected and which eventually caused blood poisoning and the death of their beloved son Paddy. He was buried in the children’s graveyard in Gort and the people of the town never quite recovered from the tragedy. Neither did my grandparents.

I know that my gran held Paddy in her heart for her whole life and she spoke about him often. She lost her husband at a young age too. I sometimes wondered how she went on after all that tragedy.

But if you knew my gran you would know that she was quite simply THE most amazing woman. She was way ahead of her time in terms of thinking, fashion, opinion and all manner of things. She drew us to her like a magnet with her wit, kindness and her love. She would say that it was her purse which also drew us to her as she spoiled us – just enough, so as not to get into trouble with our parents.

She was my Godmother, my sponsor at Confirmation, the first person I told when I found out I was pregnant with Emma. She believed in tradition and legacy. She insisted on buying my wedding dress for me – I was her Godchild, her Grandchild and the first of her grand children to get married.

She used to say to me ‘When I am dead and gone, I can’t take it with me and you will look at that dress in years to come and remember me’. The dress is far down a long list of reasons I will remember her always.

She had a tremendous wit and a love of company and conversation. She was brilliant at games, cards and asking for a bargain. She would put on this air of being a poor old lady when she was in fact quite the opposite – and you would fool her and deceive her at your peril. She was firm with us when she needed to be but I will remember her as kind and funny and a hundred other ways, before I will remember her as a cross person.

She was teetotal but she loved tea. She was a pioneer but later on in her life she allowed herself a glass of bubbly at a wedding.

She was a woman of deep personal faith in God and she was always in the middle of a Novena when we went to stay with her. She would always have a candle lighting on the mantelpiece in the kitchen for some intention. I can’t begin to imagine how many candles she expended on our exams and on tests! She kept them lit!

She had five grandchildren and she loved each one of us. She never took sides. She had nieces and nephews too whom she loved like they were hers.

Bryan and I gave Mammy Drumm her first grandchild. When Emma was two weeks old I surprised my gran by driving from Newbridge to Longford so as she could meet her. She was besotted and so began another wonderful relationship between Mammy Drumm and her first great grandchild. She was blessed to get to see three more great grandchildren before she closed her eyes.

My gran was an Egan from Clonmacnoise where she grew up in a farming family. While she lived in the West of Ireland, in Dublin,Athlone and Longford, her heart was always in Clonmacnoise. She never missed the pattern there and we were regular pilgrims to Saint Ciaran there and grew to love that sacred place as much as she did. It’s in our blood.

Mammy Drumm was a regular visitor to us in Newbridge and Emma loved her. She spent time with Bryan and me when we were newly weds after a serious accident left her in traction for 7 weeks.

The last Summer she came to stay with us was the Summer of 2005. I knew she wasn’t well when I heard her being sick in the middle of the night. She brushed it off and said it was just an upset tummy. I accepted her explanation. She was devious at times and hid how bad she was feeling. Weeks later when she was back at home we realised it was something more serious. It all went downhill after that.

A few weeks before she died I was in work and I suddenly felt anxious about her and about the lack of a firm diagnosis. My brother was in Cavan with her and was trying to get answers about treatment. I left work and drove to Cavan and myself and my brother received the news that she was not going to get better. The doctors said she was not going to survive the cancer, that she would eventually succumb to it. I went back to see her on the ward and I was terrified of having to talk to her about death. She knew before I said anything. She had been afraid of cancer her whole life and when saying the word she would whisper it or spell it! As she lay in her hospital bed looking frail and pale she reached over and beckoned for me to lean in and she whispered to me ‘I am ready to go. I am not afraid’. I asked her if she wanted to see the Chaplain and she said she did. I had him paged and he spent time with her. When he came out, he looked at me and said she is happy and at peace. She is ready to go.

None of us who loved her were ready to let her go. She was the Matriarch, the head of the family, the glue that kept us all together. My mother deserves the credit for being a living angel to my gran when she was sick. She nursed her at home when she was in and out of hospital for the months before her final diagnosis. She sat with her at night and cleaned up the mess that this type of a disease brings. No one did more for my gran in her final weeks and days than my mum did.

My Mum, Dad and brother were with my gran when she died in the early hours of the morning of 10 May 2006. I wasn’t there and it is something I will always regret. I got the call just moments after she had passed. It was the saddest moment and there is a gap in our lives that nothing and no one can ever fill.

We knew what we had to do. I was asked by her to phone a priest friend of hers in Longford with the news. When I called him to tell him the news he said ‘I know what I have to do’. I am not quite sure what he meant but suddenly all sorts of things swung into action. We followed her wishes to the letter – She was waked near our house in a funeral home. She wanted a removal to the Church and a requiem Mass and she wanted to be buried beside her beloved husband in Longford.

We all had our part to play.

When we received her remains to the nursing home from the hospital, there was work to be done. She had the most wonderful silver grey hair and my Mum always set it for her. It would have been important for her to be well presented so my Mum and I worked on her. My Mum set her hair. I did her make up. I had never done anything like that before and I was shaking as I did it. I cried and cried until my tear ducts were dry – we all did – but we all played our part.

She had a beautiful wake with prayers and then we had family time with her until late into the night. Her removal and funeral Mass were beautiful. As we brought her remains into the church there was a ferocious rumble of thunder – she always hated thunder and it was as if she was having a last joke.

She would have loved the idea that two bishops officiated at her funeral Mass and burial in the cemetery in the Longford. Her old friend Bishop Colm O’Reilly was there waiting for us in the graveyard when we arrived as was her lifelong friend – the priest I had to call. It suddenly made sense.

We said goodbye to her at the graveyard in Longford. My brothers stayed to fill in the grave. We all played our part.

Ten years on she is still missed, still talked about, still loved.

I miss you Mammy Drumm. I hope the tea is good in heaven.

xxx