Hair Today, Gone Tomorrow [Excerpt from Diary of a Stem Cell Harvest and Transplant]

Monday 4 June 2007
It's just three days since they harvested my stem cells and just over two weeks since my first liquid chemo - cyclophosphamide - and my hair is really starting to come out. It's so thin now that I really can't go out without something on my head. I don't mind so much. I am undecided about whether to get a wig or not. A wig is just not me! It's not like I present the news or am on TV elsewhere ... I don't need it for cosmetic purposes. I don't think it will make any difference to the kids - well I hope not.

Emma has a photo of me on her bedside locker. She said she wants to remember me with hair! I suppose it is her way of dealing with it. She has been so good with all that we have had to throw at her.

Cathal still won't let me out of his sight after being without me for two weeks. He keeps saying "you are my Mammy. I'm keeping you home.". That's tough to have to hear. I underestimated how all of this would effect him even though he is only 2 and a half.

I love my kids so much and I have great determination to be around for them as long as I can.

Tuesday 5 June 2007
Everyone went off to school and minders this morning. When I was making my bed I could not believe the amount of hair that was on my pillow. It's surreal. I thought I would cry once this process began but I haven't. That doesn't mean that I won't. It's a real in your face symptom of my illness but it is also a positive sign that my treatment is progressing. Bryan doesn't seem to mind whether or not I get a wig. I am lucky that he loves me just the way I am - and just the way I am at any particular time.

I remain undecided about the wig:

"To wig or not to wig
that is the question"

I got out of bed this morning
my hair decided to stay
as I pulled on my top and trousers
it spread itself out in the sun
It was strange leaving the room without it
We're usually inseparable! 

 [apparently I wrote this 'poem' in my journal]

Wednesday 6 June 2007
I was coming to terms nicely with having less and less hair. Then I swear a girl with hir the length and thickness mine used to be was standing outside the house talking to a neighbour. Just at the moment it hit me hard that it's going, going and almost gone. I miss the weight of my hair, the feeling of it as it dries off after I wash it. I miss the smell of the shampoo in my freshly washed hair as it billows around me. I do miss it.

Cathal came over to me this evening and handed me two large clumps of hair, told me to put them on my head and said 'there you go now' before walking away.

Thursday 7 June 2007

Today was a hospital day. Dropped the kids to school and minder and got to Tallaght Hospital early. My line and stitches are really itchy. They cleaned the line (this is the central line in my chest that they used for the stem cell harvest and will use again for the transplant). They removed the stitches too and the relief was wonderful. I have been dying to give them a good old scratch but I somehow resisted.

Blood results were good and they say that I am looking well.
I needed a wrist Xray to use as a marker !!!!!

My hair is still coming out in clumps and I am wearing one of those horrible bandanas that I bought from the wig woman when she came to see me. They have phoned me again asking if I want a wig but I have no answer for them as I am still undecided.

I am getting very close to just cutting what's left of my hair off. I have three comb overs and it's just not a good look!

Friday 8 June 2007
My hair is a disaster. I put my hand to the back of my head today to sort out a tangle and it felt like the whole back of my head came away. It didn't! It was just a huge clump of hair - one of the comb overs! I had a shower and more of my hair came away. I decided it was time. I went into the downstairs bathroom where there is a small mirror and no window. I cut off the comb overs and the last few bits of long hair. Then I used Bryan's head shaver and did a complete once over on my head with my eyes closed. I just couldn't look! Then for good measure I got the dyson hoover and gave my head a once over to get rid of all the last bits. Bet that's not on the instructions and uses for a Dyson!

After it was done I was too scared to look in the mirror. I put my glasses back on and looked up and it was shocking. I almost did myself a neck injury trying to look all the way round to the back. I am an egg head, a baldie.

I left the bathroom after what felt like ages. I was even afraid to let the cats see me in case I scared them. They didn't move a whisker. I walked around the house for a while - BALD. It felt strangely liberating to be free of the clumps and the comb overs.

Not sure how the gang will react but I will cross that bridge later.

[This is transcribed from my diary as I wrote it in June 2007 when I was dealing with all the fall out from being diagnosed with Myeloma - a cancer of the plasma cells of the bone marrow. I have not edited this or changed anything.]

 A few year's after my treatment I was inspired to write a short story based on my hair loss experience called 'Well if Sinead O'Connor can live with it'. You can hear me read the story on my Audioboo account at the link below:

https://audioboo.fm/boos/369931-well-if-sinead-o-connor-can-live-with-it-by-brenda-drum

PS My hair grew back really quickly and is as long and thick as it ever was!

Excerpt from Diary of a Stem Cell Harvest - No Editing, No Filter!

This time seven year's ago I was in the middle of a two-week process of harvesting my own stem cells. I was reminded of this yesterday at a talk I was giving on Lough Derg about living with cancer.

I thought I would share two actual diary entries that I wrote as I was going through the stem cell harvest process on 23 and 24 May 2007. This is exactly as I wrote them in my journal - no editing and no filter:

Wednesday 23 May 2007 DAY 3

1.30am, the early hours of this morning the awful nausea turned into actual vomiting - gut wrenching vomiting. I was attached to the IV fluids so by the time I realised what was happening I only had time to unplug it and make it to the sink in the room and not the bathroom. Eugh
It brought back memories of the awfulness of the sickness I had last December. I was dripping with sweat and my new surgically inserted line started to ooze - so painful. What a horrible feeling.
I did manage to get back to sleep but I had a lot of pain and was generally very miserable.
When I saw the doc early this morning he said he would write me up for some strong anti-sickness meds. Liz came down and she was unhappy that I was allowed to be so sick so she got onto it too.
I threw up again at 3pm - really bad, really painful - it was my own fault. I should not have drank a can of LILT - but I was so raw and thirsty.
I decided to walk down to the shop and was asked by one of the nurses to get a paper for the man in the room across from me - JOB done, after a tentative walk......
I had a visit from a medical student who had to assess me. He asked me at the end if I was a doctor or worked in medicine - Ha ha! Doctor's coat anyone?
PS Cyclizine drug is my new best friend - no more sickness today.

Thursday 24 May 2007 DAY 4

EVERYBODY HURTS SOMETIMES
NEW SERIES OF GREY'S ANATOMY TONIGHT  (for some reason I have that written on the top of the page - no idea why)

I woke up with this morning with a great sense of relief. I slept well apart from couple of trips in the night - false alarms. I wasn't sick so the new anti sickness drug is working. Cyclizine is working - what a relief. I have to remember to get scripted for this in advance of the next set of chemo. NOTE TO SELF WRITTEN

I had jelly and ice cream for lunch. I couldn't eat anything else. I did the scene from Jurassic Park with the jelly shuddering and shivering on the spoon in the girl's hand. Screen test anyone?

The nurses and doctors are lovely. They are so caring especially when they see how miserable you are. They just can't do enough for me. I have nothing but respect and admiration for them.

Saw Dr Enright - she is happy with me and my response.

Emma came up (that's my daughter who was 9 at the time) and I know she misses me. She is full of questions about my line in my chest and the meds I am on and constant fluids. She is such a gorgeous girl. Bryan said I appear to me much better, more relaxed about my time in hospital this time round. I guess I am more relaxed as I had notice that I was going to be admitted and had read up on all that was going to happen so I was able to plan.

Friday 25 May 2007 DAY 5
ELECTION

Another good night last night. I think I was up twice for two more false sickness alarms. Very vivid dreams. Bryan was telling me that Cathal has learned how to climb up and into his cot so I guess that now means he can climb out too! Oh O!

I am in good form today. I asked the doctors about getting out for day release and he has to check with the consultant. I doubt she will say yes. I am still on the anti sickness drugs and am scared what will happen if I come off them. I am now on the other injections into my stomach for helping to mobilise my stem cells.

My Mum told me that Emma sat Cathal down and was explaining to him that I now have a line sticking out of my chest and telling him he can't touch it and needs to be careful and gentle. He said I will be careful and I won't pull it. I am aching to see him.

I had a great chat with Emma tonight. She is just adorable and I hope that I am and can always be the mother she deserves.

I am so excited - just found out I am allowed out for a few hours tomorrow.

Cathal phoned with the help of Bryan at about 9.30 tonight and said: "Where are you Mammy? I miss you." I thought my heart would break. Then he said "Love you Mammy".

Are there any nicer words to hear from your child?

Signing off for the night.

Ends

I kept a journal faithfully during my year of sickness and I am hoping to publish it soon as a book called LIFE FINDS A WAY.

Follow me on Twitter @BrendaDrumm

Being a Teenager

This is a guest post by my 17 year old daughter Emma 

"Among other things, you'll find that you're not the first person who was ever confused and frightened and even sickened by human behaviour. You're by no means alone on that score, you'll be excited and stimulated to know. Many, many men have been just as troubled morally and spiritually as you are right now. Happily, some of them kept records of their troubles. You'll learn from them—if you want to. Just as someday, if you have something to offer, someone will learn something from you. It's a beautiful reciprocal arrangement. And it isn't education. It's history. It's poetry."

– J.D Salinger (The Catcher in the Rye)

When I stepped over the precipice of innocence into adolescence, into the supposedly terrific and terrifying teenage years, during which (if one believes ‘Little MissSunshine’) I was to acquire all the suffering that would shape whoever I turned out to be, I had certain preconceptions that have proven mostly, wildly inaccurate.

Firstly, I believed that I would become cool. If anything, I have become less cool, enmeshed in the claws of Battlestar Galactica and Star Trek and Doctor Who. Secondly, I believed that I would become corrosive and irrational. Instead, I maintain fluid diplomatic relations with my family. Thirdly, I believed that by the end of it I would know precisely who I was and what I wanted to do with my life. Of all my widely inaccurate expectations, that was pretty high on the delusional scale.

At some point in the past two years, I reached the terrifying conclusion that I have one life; one chance to do everything right, and it was absolutely terrifying. My teenage years haven’t given me one iota of wisdom about myself. I could tell you about the Cold War and The Beats Generation of artists and writers in New York City, but when I’m asked to say two things about myself I am rendered uncharacteristically speechless. I think that most people my age feel more or less the same way, and while it’s comforting not to be utterly alone, it doesn’t exactly help.

I believe that there’s a myth about adolescence as being uncoordinated and illiterate when it is anything but that. It’s during these years that we must make the choices that determine the rest of our lives, and that’s a lot of pressure to put on sixteen-year old shoulders. It’s a swirly whirly vortex of different ideas. We struggle with religion, with consensus, with sexuality, with the very foundations of our moral system, and yet at the same time we’re expected to learn things about maths and geography.

I’ve catapulted between cynicism and idealism and then challenged the basis of these categorisations; I’ve changed my mind about what I believe in dozens of times. I’ve wondered about God and been more than a little horrified by the crimesof those who came before me. I’ve read a thousand books; I’ve thought a thousand different and contradictory things. Honestly, I feel like an old woman already.

I’ve also memorised Pythagoras’s Theorem, learned how to motivate imaginary employees, and sat bewildered by the difference between diverging and converging plate boundaries. I am a person constantly in flux, but while I’m at it why shouldn’t I decide what to do with the rest of my one single precious life?

Being a teenager is hard. It’s one of the most difficult thingyou’ll ever go through. It’s so hard that some people don’t make it to the other side. All the same, it’s a brilliant time. It’s like when you’re on a rollercoaster and you’re slowly edging up to this massive height and your stomach is sick, you feel like you’re going to fall out and smash into a million pieces as people look on while eating peanuts and candyfloss. But, once you get to the top there’s a relieved, exhilarated sort of excitement slamming your heart against your chest. In the end, the triumph of reaching that giddy height is worth the slow and painful ascent.

I suppose that being young is simultaneously the worst and best fate imaginable. You’ll look back with nostalgia to your legging-wearing, Adidas-sporting days, but there isn’t enough money in the Western economy to persuade you to do it over. You’ll be terrified that, no matter how badly you did it the first time around, you might mess everything up even more spectacularly if given a second chance.

Even if I don’t reckon I’ll ever settle definitively on the one thing I want to spend my life doing, by the end of my teenage years I think I’ll have an idea, a murky inkling I can somehow grope my way to. It isn’t anything as concrete as a career name, but a dim sense of something indescribable. I think that one day I’ll take a blind step down the road of my life and it’ll feel like I’m finally headed in the right direction. It’s as simple and as complicated as that.

 

Copyright:  Emma Tobin 

April 2014 

Discovering my old life in Ballybay, Co Monaghan via Facebook

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 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 year's 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 4 year old survives being knocked down, trapped under a car and driven around a tough tarmac school yard ? I remember our postman and Miss Salmon chasing the car and shouting STOP before it pulled out onto the main road.

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

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

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

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

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

The Hall Street Gang sometime in the 1970s

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

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

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

THE STAR IN A LOSING SKY

I watch you through the window of my soul 

Angel of nameless grace

Through the twisted tangle of my heart
I will wait for you beyond

Summer fingers dapple on my shuddering shoulders 

The lines that time has forgotten
Leaves whisper your voice into my ears as I cling
To the chandelier of my life

I am as a changing day, wanting in all aspects
But that of blissful hope
The burst of cherries on the tongue of a waking hour 

When I will sleep
Spread out on a bed of clouds, staring
Across the spaces
As my body spills onto the world below
And I am nought but rain or snow
Forgotten words on aging lips, a memory of a day Full of hope and raining death. 

Emma Tobin 2013 

Copyright @ Emma Tobin 

New Year Resolutions

I don't do New Year Resolutions at all. Instead I make wishes. I used to make these wishes quietly to myself and then last year someone introduced the idea of writing the wishes onto Chinese Lanterns and sending them skywards. 

I attempted to do that last year but the rain and wind saw to it that the lanterns and my wishes never left the ground. 

My wishes were: 

1. To be loved

2. To stay Myeloma free 

3. To be published 

4. To make my first radio documentary 

The two most important ones were granted (1 and 2) and I am grateful to be starting 2014 having celebrated another year being cancer free and having celebrated our 18th wedding anniversary. 

Wishes 3 and 4 are still under development and the ball is firmly in my court on those.

This year's wishes are:

1. To stay myeloma free 

2. To have a year of health and happiness in our home 

3. To stay employed 

4. To rekindle old friendships and not allow myself to be taken for a ride by people masquerading as "friends" 

5. Wishes (3 and 4) from last year

So here's to a year of dreams and wishes coming true for me and anyone reading this. 

Giving Thanks

"Ah there's yer wan again going on about her hospital appointment - JEEZ enough with it!"

Now I can understand people saying that about my Twitter and Facebook posts - another hospital visit post = YAWN!

I don't blame you, any of you for saying that, for thinking that because the reality is that I do post about my hospital visits a lot and that's for the simple reason that I am in hospital a lot.

I am under the care of the Renal Team and the Haematology Team in Tallaght Hospital and I also see a Dietician from time to time - being sick is almost a full time job, but I already have a full time job and loads of interesting hobbies so at times, it's hard to find the time to be sick.

Those of you who know me, know that I was diagnosed with Myeloma in January 2007. Myeloma is an incurable cancer of the bone marrow.

I am kept on a very short leash by the hospital - kidney clinic every six months and haematology every two months without fail. There are sometimes in between visits for issues and minor complications. I have lost count of the number of times I have been an out patient and inpatient.

A friend said recently that when she told a work colleague about all my hospital appointments, the colleague said: 'That's like a death sentence". A wee bit insensitive you might say but sometimes people say and do strange things when they learn of your illness and circumstances.

For me, it's a very small price to pay for being well.

So the reason for my post is that I recently had a scare when some proteins were found in a sample I gave at the renal clinic. Proteins are the villains in my Myeloma story - they are like the Lex Luther or the Joker to my Myeloma Superman or Batman! They are sooooooooo not good. The renal team admitted to me that they were being super cautious but at the same time proteins are proteins and so I was called in for a repeat test.

I  had to wait for a week for the results. Needless to say during that week every possible worst case scenario went through my mind. The Myeloma is on the march again and I will get the news just in time for my birthday and Christmas. Lovely!

• What if I have to be in hospital for Christmas - away from Bryan and the kids? 
• What if I have to have another Stem Cell Transplant? 
• What if I don't respond?
• What if there are complications and I can't have new treatment? 
• What if.......? 

Myeloma is a dead weight that I carry around all the time and the what ifs are there all the time but in the last week they were magnified and in High Definition just sitting there in front of me.

Since my diagnosis and treatment in 2007, I have really gotten my life back and my diary is full of wonderful stuff. In the next month I am going to turn 45, I am going to be a judge for the new Oliver in the local Musical Society, I have Christmas parties and dinners, I have Santa stuff to do, I get to be a radio head twice a week now in KFM the local radio station where I get to interview so many wonderful people. I have plans in my diary all the way through to next Spring at this stage and the idea that the Myeloma might have come back means that all of these plans might have to get scrubbed out.

These plans are great to have but they all pale in insignificance when it comes down to it and what it would mean for my family. I don't want to be the Mom who is sick [AGAIN], too weak to walk up stairs, too weak to drive, too sick to get out of bed, so sick I have to be in isolation for a month in hospital and I don't want to be a sickly wife who places the burden of care and work onto my husband. It's unfair.

I had imagined the worst - that's what we do, that's what I do. I was preparing myself for the absolute worst case scenario. In a way I am constantly preparing myself for THE worst case scenario because it will be the case someday. I just don't want that SOMEDAY to be any day soon as I have so much left to do.

I have so much life to live and I have so much of my kids lives that I want to be here for. We have great plans for our retirement, Bryan and I, and I want to be around to be an outrageous old dear who wears purple and dyes her hair!

I was very relieved to get the news last week that the proteins are behaving themselves. It must have been a blip or something on the particular test. If only the people in the labs knew what these blips do to patients like me!

Thankfully I am still in remission. I have made it through another year of living with Myeloma. I missed some of my targets - I had planned to get through the year with no admission to hospital but that didn't happen thanks to a serious infection in March. But it's another year notched up. 7 years and counting......

I can look forward to my 45th birthday on November 29th, to Christmas at home with the family, to our 18th wedding anniversary on December 29th and to a New Year of great plans and resolutions.

I have a lot to be thankful for and I don't take any of the time I have for granted. I don't take the wonderful moments everyday for granted, the little things, the memories made are all so precious. That's a gift that serious illness gives ......... every cloud and all that .......

So next time you see me posting about yet another hospital visit, perhaps you will understand the significance for me of getting through each and everyone of these visits with a clean bill of health.

Brenda
xxxxxxx