Musings – Off the hook for another 8 weeks

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

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

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

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

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

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

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

muffins

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

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

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

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

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

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

butterflies

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

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

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

I physically relax and all the butterflies disappear.

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

IMG_7377-0

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

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

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

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

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

I am off the hook then for another eight weeks.

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

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

candles

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

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

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

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

Chalk words

“Packing It In”

This brought back so many memories of my last days before my stem cell transplant. Well worth a read and a follow.

sllrblog

In my last blog, I mentioned that my consultant who is Greek and whose use of the English language is sometimes uncertain had urged me to “pack it all in,” which I had interpreted as an encouragement to do as much as possible before weeks’ of isolation. One of my friends has kindly pointed out that he could have meant the complete opposite – i.e. to cease all frenetic activity and take it easy for a while.

I have preferred not to go back and ask him quite what he intended to mean but to interpret it my way and so it’s been a busy week. My report on the suffering of Yazidi women went out on Newsnight on Monday and since then it has been non-stop with more TV and radio appearances on this sad story, another appearance on the Victoria Derbyshire show about my sad story, a trip to the West End…

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Musings – National Dawn Walk for Cancer

“If you are faced with a mountain, you have several options.
You can climb it and cross to the other side.
You can go around it.
You can dig under it.
You can fly over it.
You can blow it up.
You can ignore it and pretend it’s not there.
You can turn around and go back the way you came.
Or you can stay on the mountain and make it your home.”
Vera Nazarian, The Perpetual Calendar of Inspiration

On Thursday 9 July I went down to Kilkenny for the launch of the National Dawn Walk for Cancer which will take place for the first time on Saturday 22 August 2015. I was delighted to be part of the launch and to have the opportunity to speak about my own cancer story which I always prepare in such as way that it will offer hope to people who are listening. It was an extra special way to be spending the anniversary of my own transplant.

National Dawn Walk for Cancer

The Walk is just as it says – it will take place at dawn on 22 August and will involve a 10K walk (downhill) on Mount Leinster. The walk has a two-fold purpose:

(i) to remember those who are no longer with us because they succumbed to their cancer

(ii) to encourage those who are battling cancer.

The walk is open to everyone. All monies raised will benefit the Irish Cancer Society. The cost is €10 per adult and €5 per child and you must register online. See a short video below about some of the work of the Irish Cancer Society

Remembrance Balloons 

In the months leading up to The National Dawn Walk for Cancer’s, the organising team invites you to purchase a Remembrance Balloon Pack. The pack costs €5 and all money raised will also go towards the Irish Cancer Society.

In this pack, you will find two information leaflets, an intention sheet and an envelope. On the intention sheet, you will be invited to write a personal message to a loved one who suffers, or has suffered, from cancer. The contents of this letter will be known only to you, so say whatever it is you like. The organisers ask that you submit your message to the walk’s organising committee on or before 16 August, the Sunday before the walk.

On August the 21st, your message, along with those of countless other participants, will be incinerated and blessed by Bishop Denis Nulty, the Bishop of Kildare and Leighlin. The ashes of these messages will then be divided and placed inside the balloons.

On the day of the walk, once all the walkers reach the village of Myshall, everybody will be asked to release their balloon to the wind, symbolising the journey and achievement of all the walkers and allowing time for us to remember.

The Remembrance balloons will be on sale at many events across the south east and at many shopping centres on dates which will be announced on the Facebook and Twitter pages of the National Dawn Walk for Cancer.

The best place to get the info is on their website which is here.

I realise that I am one of the lucky ones so that is why I am going to do the walk on 22 August. Will you join me? Registration is open now.

Brenda

xxxx

Musings – 8 GREAT YEARS

Life is pure adventure, and the sooner we realize that, the quicker we will be able to treat life as art.
Maya Angelou

Today, 9 July 2015, is the 8th anniversary of my successful stem cell transplant and I am filled happiness, relief, joy, thanks, nerves…… and a myriad of other feelings.

I am so thrilled to be marking another year of a clean bill of health as far as the Myeloma is concerned. I know I had the blip with the appendix in April but overall it has been a very good year and it feels wonderful to be celebrating the 8th year since my clever stem cells did their miraculous work and saved my life.

I honestly never thought I would be here writing this today. I wasn’t sure I would get eight months, never mind eight years.

I used to project forward and do the maths around the kids and how old they would be if I was to have a year, two years, three years etc. They would never be old enough to be without their mother was what I always calculated. Why should my two beautiful children have to grow up without their Mum? I never wanted them to be set apart as the kids people elbowed each other about because they no longer had their Mum.

Although I am celebrating today, eight years is not nearly enough time with them. Emma is an adult now and that’s quite something to be able to see as a Mum. She is beautiful, kind, caring, intelligent, funny, quirky and one of the most talented writers I have ever read. Yes I am biased of course. I want to be around for this next stage of her life as she goes to college, falls in love and finds her place “on the train of things” (I am quoting a line from one of her poems – see below).

When I have fears that I am – A Poem by Emma Tobin 

I need to find some old besotted meaning
I need to find my seat on the train of things
I need to find the person who will listen even when
I don’t want to be heard or seen or known,

Even when I don’t want to have been.

I want to be around as she takes flight and I want to be around to be the broad shoulder she will always have if she needs to have a good cry. I want to share box sets and movie screenings with her….. and I hope she will want to share them with me.

I want to be around to watch her first novel being unpacked and placed on the shelves of book shops. I want to be around to teach her how to drive.

All the big/little milestones which are to come.

Cathal is almost 11 and he still has so much growing up to do. I want to be around for him as he changes from my little boy with his sweet voice into a moody seep-voices teenager. I want to see and hear those changes. I want to be around to film his youtube videos for his own channel which he hopes will someday have a Golden YouTube button (whatever that means).

Here is his first ever YouTube video which is an ‘unboxing’ one (whatever that means).

I want to be around for his transition from primary to secondary school and for all that will bring. I also want to be there when he receives the Golden Button on YouTube (I need to google that!)

Growing up we bought our younger brother a t-shirt which said:

I WANT
I WANT
I WANT

That’s all it said. I think I need one of those t-shirts now.

While I want a lot, it’s all simple and ordinary stuff.

I know there will be lots more extraordinarily simple day to day things to come for me with the kids and they are the things I want most – the routine of

I want to be around to grow old and to watch as my face changes and crinkles more with age. I want to have more adventures with Bryan – we are married 20 years this year – and I still feel we have only just begun. It’s wonderful that he loves me just the way I am, and it’s wonderful that he has loved me in sickness and in health.

I also want to be around and need to be around to clean the toilets – no one ever seems to notice they need to be cleaned in our house! To think the state the toilets would get into if I wasn’t around!

And the cats – I need to be around to look after the cats. Sure who would feed them? No one ever remembers to feed them or to let them out at 5am in the morning!

While it’s just super to be so far away from the trauma of the treatment for my cancer, it also means that I am potentially moving closer to its return. That is something that is guaranteed to happen. That’s the only guarantee you get with this cancer is that it will return at some stage. It augurs well for me that I have had such a decent remission on this first transplant. I have more stem cells waiting for me for the next time. They will only ever do two transplants as the risks outweigh the benefits hands down. There are lots of new treatments which have come on stream since my diagnosis and transplant 8 years ago. Eight years in medicine is a long time too.

But today is not the day to dwell on my cancer coming back. Maybe  I will be different and I will set a new record for the longest remission from a first stem cell transplant. Who knows?

What I do know is that:

  • I will continue to love, laugh, live
  • I will continue to make memories and to manage mischief with the kids
  • I will continue to hold my hubby’s hand and heart
  • I will continue to be unpredictable and to use up the rest of my 99 lives
  • I will continue to just be

and I will squeeze every last ounce from this one single imperfect and yet perfect life I have been given ….

Happy stem cell transplant anniversary to me

Musings – Being Here and Books

This was scheduled to go live on July 4th but something happened in the background. I am letting it go live now anyway. 

This time eight year’s ago I was getting ready for July 4th which was the day I was to be admitted to hospital to begin the process of my transplant.

I was ready for it at that stage. I had read all the literature and felt I knew everything.

At home, I was about to collect my daughter Emma from her last day of school as her Summer holidays were about to begin. I had planned lots for us to do in the first few days of her holiday as after that I was going to be away for a few weeks at least.

I remember feeling pressure to try and pack in as much as I could in those few days before I was admitted.

While trying to make a fuss of Emma on her school holidays, I was also trying to make sure I had as much time as possible with Cathal who was approaching his third birthday and who was finding it quite difficult to get used to the idea of me being away even for a few hours – never mind a few weeks.

Emma and I had a few dates marked in the calendar:

She had marked the days she thought I would be away for based on what we had read from the transplant literature.

She had marked two dates which were to do with Harry Potter:

The first date was 12 July and that was the date of the release of the movie of Harry Potter and the Order of the Phoenix. Emma and I always did the Harry Potter movies together and I was hoping that even if I could not make opening night that I would be home in time to see it with her while it was still in cinema.

The second date was 21 July and that was the date of the publication of Harry Potter and the Deathly Hallows. We had arranged to be a special event in a local book shop where we had pre-ordered the book. There was a huge amount of hype around any new harry Potter book and the shops always went the extra mile and allowed people to queue so as they could open the door at midnight for people to get their copy of the book.

It was my target to be home for that.

I failed and missed both of those events. July 12 was just after my transplant so I wasn’t going anywhere and July 21 was when I was at peak chemo fallout and I was in a very bad way. I remember chatting to Emma on the phone after the first date came and went and we were both clinging on to the July 21 date as a possibility. I was disappointed that I couldn’t make the book launch with her and I know she was too.

Emma was well looked after on the Harry Potter front as she was able to go to the movie with her friend and she was taken along with everyone else to get the book. I was able to hear all about it from her on one of the occasions she sneaked into the hospital to see me.

One of the nurses who was looking after me was also reading the Harry Potter book and I used to get snippets from her each evening she came in to look after me. I wasn’t able to read it but I wanted to be able to chat to Emma about it as I knew she was powering through it at home.

Cathal’s birthday in August was the next date I was aiming to be at home for. Luckily I made it home in time for that and we had a small party for him and a few of his friends.

There have been many more book and movie releases and I have been free to attend all of them with Emma and now Cathal too as he is that bit older.

This year I got to see Emma graduate from school – she’s done with it, finished. She did her major State exams and we now wait for the results. I am very glad to have been fit and well so as I could be around for her for these times.

Cathal just had an advance birthday party with all his friends before they broke up for Summer holidays. We had a great day full of laughter, fun and snakes…..

It really is all about the little things and about simply being here for and with the kids as they grow up.