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

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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.

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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

IMG_5214S/W Ver: 85.92.70R

 

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.

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

A Mother’s Prayer for a child doing exams

I know that you have worked hard and studied

I know that one final exam can seem unfair
to show the sum of your worth.

I know that you are nervous
I can sense it,
even behind your smile and assurances that you are ok.

I know that you are tired and that
words are blurring on the page,
so sometimes a break from the books
is the best thing to do.

I know that you are doubtful
of finishing long papers in time.

I know that you are hopeful
for favourite poems coming up.

I know that you are ready.
I have watched you for six long years.

I know that the hard part is waiting
for the first exam to start.

So, I am praying for the nerves to settled
as soon as you pick up your pen.

I am praying for the answers t come to you
as soon as you see the question.

I am praying for Plath and McCarthy
as topics in English and History.

I am praying for enough time for you
to get it all down on paper.

I am praying for strength and endurance
to get through the next few days.

I pray that you talents will shine through
and that your words and efforts will
inspire generosity in the examiner.

I pray for perspective
for the knowledge that in the long run
this won’t be what defines you in the world.

I pray for gentle and untroubled sleep
for you on the nights before your exams.

I pray that you will always know
how much you are loved, cherished
and valued in our family and in the wider world.

I pray that you will have faith that all will be well.

AMEN

Mother's Prayer for Child Doing Exams

Written for my daughter Emma as she prepared for her State examinations last Summer. It’s a tough and challenging time so hang in there. All will be well.

Brenda

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.

hall street gang
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