Chapter 21 – Back to Myself

If there’s one thing I learned, it’s that nobody is here forever. You have to live for the moment, each and every day . . . the here, the now.
– Simone Elkeles

The chemotherapy had taken a huge toll on me – physically and mentally.

I was changed from the person I had been BC (before cancer).

There were a lot of physical issues.

My mouth was permanently dry and it was four months before I was able to eat bread or biscuits.

My teeth were damaged by the chemo and discoloured too and I had always had such great teeth.

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My stomach was nervous for months after the transplant. The slightest thing would upset it and I would be back vomiting. About six weeks after the transplant we tried a celebratory glass of champagne and some take away which were both delicious. A couple of hours after having them I was being sick again.

I was cold all the time because I had so little padding. My bottom and back would hurt if I sat too long on firm surfaces. My friend Sara took me for a hot stone back massage for my birthday and I had to ask the masseuse to stop as the stones were catching on my ribs.

My neck too was permanently freezing as I had no hair.

I worried about the side effects inside my body – the things I couldn’t see.

The worst thing about the chemo was it killed my fertility and I was told I would never be able to have more children. I was devastated as no woman ever wants to hear those words. It felt like part of my identity as a woman had been taken away from me.

There was a part of me that would have loved another child but then I would remind myself abut all the thalidomide in my system and what that could do to an unborn child.

I was physically weak too and found that my body just couldn’t do the things it used to be able to do. I couldn’t carry anything heavier than a shopping bag and if I tried heavy housework I would be out of breath and out of arm strength. I probably should have been sent to a physio as part of my recovery but it was never suggested to me.

Another permanent side effect I live with is poor sense of taste and a sense of smell which is almost entirely gone.

As well as all the physical effects I was dealing with a lot of emotional issues and predictive grief.

I have incurable cancer which could come back at any time. I might not even get a year out of the transplant. I might succumb to something else.

I would find myself lost in day dreams where I would visualise my own funeral and wonder who might say the Mass. I would pick readings, music and symbols of my life. Then my heart would break at the thoughts of Bryan, Emma and Cathal following my coffin.

This is what predictive grief is and it can strike at any time. I might be driving in the car or at an appointment and I would find myself visualising my inevitable death from this cursed cancer. It was all very raw in those first few weeks and months.

I would make bargains with God:
– just let me see Cathal starting school
– just let me get Emma into secondary school
– just let me see a couple more Christmases
– just let me live

I made sure never to put anything in writing so as God couldn’t hold me to anything.

Each hospital check up was fraught with nerves and fear. Were that particular day’s results going to be the ones to knock me off my recovery course. I would often cry tears of relief on the journey home from my hospital check up.

There is an ongoing battle inside me which wills me on, which makes me place the incurable cancer thoughts into their box so as they don’t interfere with everything I do.

It’s not easy. Some days it’s impossible to do and I just let those thoughts jump around a bit before packing them away again.

My ambitions in life have been changed by the diagnosis of Myeloma … Yes I still want to do lots of things on my list and see more of the world but, my ambition now is simply to grow old with Bryan and to see my kids grow into the fine adults I know they will be.

It’s not much to ask but it’s everything to me.

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Chapter 20 – Back to Life

I may not have gone where I intended to go, but I think I have ended up where I needed to be.
– Douglas Adams

I was back in some sort of a ‘normal’ routine by the end of October 2007. I was being managed as an outpatient by the haematology team and they were allowing me four weeks between each hospital check up. It was wonderful to feel a lengthening of that hospital leash which had been very short for a long time.

On my monthly visits to the day ward I had full blood checks, a review, my intravenous bone strengthener and the immunoglobulin to boost my immune system. The whole process took from 9am until after 5pm. My butt cheeks would be fairly numb by the end of those days.

I would also feel very tired for a few days afterwards but I was happy to be feeling better.

Halloween came and went. We had a little party for the kids and enjoyed welcoming all the trick and treaters to the door. Emma dressed as the scream guy and Cathal was a pirate. I missed an opportunity to be Voldemort from Harry Potter with my bald head …. Instead I dressed as a witch with a wig. It felt good to have hair again.

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Quietly and without fanfare we started to plan again as a family and to talk about family dreams and celebrations. It was nice to be able to do that after almost a whole year of everything being on hold.

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I was adjusting to the nagging voice inside my head all the time reminding me how short life can be. I was making lists in my head all the time – lists of things I wanted to do with the kids, milestones I felt I needed to tick off …..

But I was still feeling frustrated by my lack of physical strength and I grew impatient at the slow pace of my recovery. Then I would remember just how sick I had been in July and I would ease off on myself.

I had to remind myself of what I had achieved and of how significant the effects of cancer and chemo are.

This wasn’t a Hollywood movie where the heroine goes from being dramatically sick to fully recovered in one single montage or scene change – it was real life.

It was all very real.

Chapter 19 – Setback #1

Without setbacks and mistakes, no experience. Without experience, no learning. And without learning, you’ll never truly understand the awakening of your heart’s desires.
– Robbie Vorhaus

I was still riding high on my remission wave when I noticed pain a few days later.

It was a tingling along my back, shoulders and groin and it was like nothing I had felt before.

I ignored it for a day or two but by Monday 1 October 2007 it was painful enough to force me to call the doctor.

I was still on a lot of medication at that stage:
– tablets to prevent viral infections and fungal infections
– calcium tablets
– a small daily dose of Thalidomide which acted as a maintenance treatment
– one or two other tablets

I wondered what it could be considering I was on so much preventative medication. I thought it might be a flu coming on.

My GP examined me and announced that I had shingles.

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I was taken aback by the diagnosis as I was on an antiviral treatment which should have prevented it. On the other hand, my system was still coming right after the transplant and I was more vulnerable than I thought.

Dr Michael rang the hospital and spoke to someone in haematology so as to share my diagnosis with them. He gave them his idea for treating me and they agreed and said they would be in touch.

I went home to rest. I was sitting on the sofa with Emma at 4pm that day when my mobile phone rang. It was one of the nurses from the haematology day ward ringing to tell me I needed to be admitted to hospital immediately.

I was devastated to be going back so soon. Emma got all upset by the news and I did my best to reassure her. She was just getting used to having me home and I was going again.

We made arrangements for Cathal to stay with his minder and once again Bryan, Emma and I headed off to hospital.

I was in a lot of pain and discomfort so I knew that I was going to the right place to be looked after.

Once I was settled in hospital I sent Bryan and Emma home and waited to see the doctor.

I was put on a drip and charted for pain meds and anti viral meds. My doctor came to see me and explained why they had admitted me. It was because I was just over the stem cell transplant and they were worried that the shingles could spread to vital organs. And to think I thought it was just a rash.

I had a terrible night of pain and itch right across my back and shoulder and spreading to the groin. It was just as well they had admitted me as I was able to get the right pain meds.

The following day they started me on an immunoglobulin product which would boost my immune system. It was decided that I would have it once a month until such time as my immune system got stronger.

At home the kids were missing me – again!
And the house had been turned upside down by me – again!

It was all so frustrating but I had to just lie back and get better.

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I spent a week in hospital and on discharge I was told to take it easy. Gently and slowly were the words to live by.

The pain from the shingles stayed with me for weeks and ultimately they meant a setback for me on my timeline of going back to work and to life.

It would mean no return to work for me in 2007. That was difficult to take in as I felt it would have been good for me to get back to work in the same calendar year as I got sick.

I had a long chat with my consultant and she told me that they average recovery time from a stem cell transplant is six months. By that schedule I was pushing things a bit by forcing myself to be ready before time.

I relaxed a bit after that and decided it would have to be a day/week/month at a time.

I got over the setback and got home to the family again. In total in 2007 I spent 10 full weeks in hospital …. I was hoping that I could get to 2008 without spending any more time there …

Only time would tell.

Chapter 18 – The one with the Levi’s

By choosing healthy over skinny you are choosing self-love over self-judgment. You are beautiful!
– Steve Maraboli

So it turned out that I had lost four stone in weight as a result of the side effects of the stem cell transplant. It was a shock to me and to those around me to see me back in my surroundings looking so very thin.

In the hospital I was surrounded by all the machines and equipment and wearing pjs all the time so the weight loss wasn’t as noticeable to me or to others.

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When I was back at home I rooted through my wardrobe looking for clothes to fit me. Nothing fit! I had to gradually build up my wardrobe again with clothes to fit my size. It was a great excuse for some retail therapy.

One Sunday morning when I was feeling a bit better my hubby Bryan said he wanted me to get a stem cell transplant present for myself to celebrate the success.

We headed over to Kildare Village and as we wandered around looking at all the lovely things, we spotted the Levi jeans store.

I had never bought a pair as I always felt they wouldn’t look good on me in my size. I had no idea what jeans size I even was.

I was browsing in the shop and the sales person came over and she asked me if I needed help.

I told her I wanted to try on some jeans and asked her to translate the sizes for me. I grabbed a couple of styles and went into the changing room….

They didn’t fit …. They were huge on me.

She came in and asked if I wanted another size or style and I said I did.

I said “I’m not sure of my size but I think I am a 14/16”.

She looked at me and sort of laughed and said “eh I don’t think so ….” And she left the changing room.

I was livid. How dare she suggest I was fat and would not fit into a 14/16.

I was really annoyed until she came back into the changing room with a size 12 and said “try these”.

Oh ……. The penny dropped with me…. She saw clearly how skinny I was ..,,

I tried on the 12 – it didn’t fit

She came back with a 10 – it didn’t fit

There was a mannequin at the entrance of the changing room and ‘it’ was wearing a gorgeous pair of jeans. I asked the sales girl if I could try on a pair like that but there were none left except the pair on the mannequin.

Right in front of my eyes she stripped the mannequin and handed me the jeans. I started to laugh and couldn’t stop.
Bryan and the kids were waiting outside listening to the commotion.

I took the mannequin’s jeans and tried them on …. They were a perfect fit. I checked the size – they were an 8.

I had dropped five dress sizes as a result of the treatment ….I was shocked ….

I got quite tearful and I think the girl was getting worried so I told her what I had been through (briefly) and she was very kind.

The jeans looked amazing on me but they were also a reminder to me of just how much I had been through and how much it had cost me physically.

It was the first time I had bought a pair of Levi’s and the first time they had ever looked good on me. I was delighted with them but I still felt very uncomfortable about my new shape and weight – it almost felt unnatural for me.

I would find myself in a shop looking at clothes in size 10 and 12 and thinking I would never fit into them.

I knew that it would only be a temporary weight and size as I was under strict instructions to build myself up.

When I look at those Levi’s now they remind me of how far I have come in my recovery and how looking like a mannequin just didn’t suit me.

Chapter 17 – The R word

I can never read all the books I want; I can never be all the people I want and live all the lives I want. I can never train myself in all the skills I want. And why do I want? I want to live and feel all the shades, tones and variations of mental and physical experience possible in my life. And I am horribly limited.

Sylvia Plath

In the middle of September 2007 I attended the haematology day ward in Tallaght hospital for bloods, review and to have a bone marrow biopsy. The biopsy would tell us whether the transplant had worked and we would also find out if the myeloma was gone.

I was calm and relaxed as I waited as I had been through the process many times.

I met Dr Sean and Dr Larry – the two doctors who had looked after me most often during my transplant. Dr Sean almost passed me by in the hallway without saying hello because he didn’t recognise me.

Dr Larry was the one doing my bone marrow biopsy and he too was shocked to see me. He remarked on the extreme weight loss while I coaxed him to give me plenty of local anaesthetic. A bone marrow biopsy is painful, especially once the anaesthetic wears off.
We got it all done and I was told to come in for the results two weeks later as part of my scheduled haematology appointment.

This diary entry was written at the end of that day eight years ago when I went in to hospital to hear the results.

Wednesday 26 September 2007
DAY WARD RESULTS

I can’t describe how in bits I was this morning. I was wide awake at 5.30am walking around the house, pacing up and down. Sleep didn’t come too easily last night either. I got very emotional with the kids this morning – I know they didn’t really understand why. I was uptight, nervous and it was very difficult to utter any words that made sense.

I had decided to go to the hospital by myself (again). I had all sorts of offers from people who were happy to come with me but I needed to do it on my own. If it was bad news I would have time to absorb it myself before I had to break the news to anyone else.

People knew I was getting my results today so my phone was hopping with texts all morning with good wishes and offers of prayers.

I dropped the kids to school and delayed a bit chatting to people – all the time prolonging the journey to Tallaght Hospital.

When I got to the hospital I had to have my regular bloods done so I headed straight to phlebotomy. Then it was up to haematology. I had a fair idea that some of the nurses knew my results but they couldn’t say anything. I had to hear whatever the news was from my consultant Dr Slaby.

In fairness they all knew how nervous I was and they got me into a side room to wait for Dr Slaby almost as soon as they saw me. He arrived and was a bit concerned about the cough I have. I was sitting beside him and I could see the computer screen. I was afraid to look at it as he pulled up my results. My left hand was shaking so much that I had to sit on it to stop it. I glanced at him and then glanced at the screen and lots of numbers and words blurred in front of me but then I thought I saw the words ‘no myeloma present in the bone marrow sample’. I thought I was seeing things so I closed my eyes because I was too afraid to hear bad news after everything I had been through.

Then Dr Slaby said the words: “We’ve done it. The Myeloma is gone.”

I punched the air with both fists saying YES!I wanted to scream the place down but I somehow composed myself. I don’t know how or why.

I honestly didn’t hear a word he said to me after that – something about maintenance treatment. Then he realised I wasn’t hearing him and he said “that’s for another day”.

He said he was concerned about my cough so he insisted I hang around for an Xray. I was bursting to get out of the office and he eventually said that’s it and we shook hands.

I ran out into the day ward and ran straight into one of the nurses who had taken care of me and I said ‘I’m in remission’ and she said ‘I know’ with a huge smile on her face. She hugged me and realised how badly I was shaking from shock so she put me into a side office and told me to dial 9 for a line out and not to come out or attempt to leave the hospital until I was a bit more settled. She said well done and left with a huge smile on her face.

I dialled 9 and called my hubby Bryan but there was no answer. Then I dialled my mother and just as she was about to talk to me I cut her off by mistake. I was all fingers and thumbs and couldn’t work my mobile. Bryan rang me back and it was one of the most emotional moments of my life. I could hardly get the words out. “I’m in remission”, I said and started to cry – tears of joy, of relief, of sheer unadulterated happiness. He said ‘you deserve champagne tonight so that’s what we will do’. It was just a moment I will never forget.

I called other friends and then my work colleagues as I knew people were waiting. There was such joy and love coming at me down the phone lines from family, friends, colleagues. My phone went into overdrive.

When I was satisfied that all my friends and family knew I switched the phone off and just sat by myself for a while taking it all in. I did it. I was in remission. All the awfulness, all the suffering and trauma, all the worry – I had done it. I was in remission.

End of diary entry

I remember leaving the room and meeting the other nurses – they were all thrilled as they had all been willing me to be well. I owe my life to this team of amazing men and women in Tallaght hospital. There is no way to ever repay them for giving me my life back but I am determined to try by staying well for as long as I possibly can.

There was such joy in the dayward but we all had to be mindful of people around me who were not receiving good news on the day I got my life back.

I went off for my Xray and skipped out the door of the hospital. I wanted to stop everyone I met on the way to tell them that I had done it! That I was in remission and that the myeloma was gone.

I remember heading home down the N7 singing along to the radio. A song by the Hot House Flowers came on called “I can see clearly now the rain has gone” I sang along to it at the top of my voice thinking how apt the lyrics were.

I can see clearly now, the rain is gone, I can see all obstacles in my way
Gone are the dark clouds that had me blind
It’s gonna be a bright (bright), bright (bright)
Sun-Shiny day.

I think I can make it now, the pain is gone
All of the bad feelings have disappeared
Here is the rainbow I’ve been prayin?for
It’s gonna be a bright (bright), bright (bright)
Sun-Shiny day.

Look all around, there’s nothin?but blue skies
Look straight ahead, nothin?but blue skies

I can see clearly now, the rain is gone,
I can see all obstacles in my way
Gone are the dark clouds that had me blind
It’s gonna be a bright (bright), bright (bright)
Sun-Shiny day.

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My daughter Emma who was 9 at the time knew that I was getting results on that day. I remember her school bus pulling up and seeing her walking across the green outside our house so I ran over to her and we just stood in the middle of the green hugging after I had told her the news. She was so happy for me.

It was such an incredible moment. At the time I had no idea that my neighbour was watching us from her bedroom window – she knew I was getting results that day and she dropped in a card later that day telling me that she had stood at her window watching this beautiful moment between mother and daughter unfold before her eyes. She said it was impossible not to cry!

There were a lot more tears before the day was over but they were all tears of joy. There was a glass or two of champagne when Bryan got home as it dawned on all of us that I had beaten cancer.

We all take things in our lives for granted – time being one of them. We assume a path in life that includes growing old with the ones we love. At the end of that day eight years ago I knew I would never take time for granted again. Thanks to my diagnosis of cancer time is the thing I find myself most grateful for.

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Chapter 16 – Picking up the pieces

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Appendectomy update

Hi there

Apologies for the lack of chapters but I am recovering from surgery to remove my appendix. The surgery took place last Friday and as with everything with me – it wasn’t straightforward!

The surgeon attempted keyhole surgery but the appendix was so nasty he had to open up a larger incision. The surgery should have taken an hour but I was on the table for four hours. It has been painful since then.

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I was kept in hospital for a few days and I am home now recovering.

I am determined to get back to posting chapters in the next day or so. Stay tuned and thanks for checking in.

Brenda
24 April 2015

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