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Miles for MacMillan ... Walking for Daddy Dear

Cheryl Barrows is raising money for Macmillan Cancer Support

Team: Remembering Bernie Barrows

In memory of Bernie Barrows
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Miles for Macmillan - Clumber Park 2013 · 7 September 2013 ·

The number of people diagnosed with cancer is growing, we're doing whatever it takes to help more people with cancer get the best care the UK has to offer, whoever and wherever they are. To donate, volunteer, raise money or campaign with us, call 0300 1000 200 or visit macmillan.org.uk

Story

On June 13th 2013 the most amazing man i ever have and ever will know finally surrendered to cancer.

Our inspirational dad informed us in October 2011 that he had 2 brain tumours, that we needn't worry or be anything less than positive, he was having surgery on one of them and then chemotherapy and radiotherapy, that it was just a 'temporary glitch' and that was all.

Dad never showed any of us a shred of doubt or negativity, always talked about his future positively and optimistically, planning holidays while we all questionned how much we knew and how well things were really going. Deep down I knew Dad wasn't telling us all the entire truth, not letting on to how bad the situation actually was, but I still, perhaps naively, thought Daddy dear was nothing less than a superhero, the strongest, healthiest, bravest and most determined man i ever knew, and I never let myself consider the possibility that my hero would not beat the disease.

Late 2012 I rang Dad to find out his MRI scan results, expecting to hear "Yup, they've all gone, totally clear now, now tell me all about your week?"

Dad told me the tumours hadn't disappeared but they also hadn't grown or changed and the consultant was quite happy with them, they weren't too much of a concern ... I wish the conversation stopped there ... Then came the real news ... There were new tumours ... New tumours in an area of the brain that could not be touched. Surgery was not an option, Dad had had his maximum allowance of radiotherapy and chemotherapy probably wouldn't touch them ... And then in the most casual way he mastered, Dad said the words I never wanted or expected to hear ... "There is nothing they can do".

Totally deflated, I still didn't let this sink in. I kept telling myself "He's a superhero! He'll beat it. He'll be one of those people you read about in magazines that were told they were untreatable and then just somehow got better." The very best i could let myself contemplate or accept was that he wouldn't be cured but would still live several more years. He had too. He had so much more to do with his life ... and in mine.

I receieved a phone call at work one afternoon, telling me Dad had taken a turn for the worse and that I should go and see him. He had spent the weekend with me just 3 weeks earlier, we went out for lunch and a few drinks then went for a walk around a lake. How 'normal' and 'healthy' he seemed then made it impossible to expect to see him how I saw him that evening. He was a different person. He practically fell into the room on legs he seemed to have owned for 3 seconds, he looked and sounded so confused and lost, so helpless and vulnerable. My brother and I immediately broke down. This wasn't the Dad we walked with 3 weeks ago, this was some paraletic drunk badly impersonating him. Dad didn't want to see our reaction, because Dad didn't want us to see him that way, Dad didn't want to be that way, he certainly didn't want confirmation from his children that he was a different man now. He stumbled away and found the sofa as we sorted ourselves out and put on brave faces. Spending that evening with him seeing him that way, hearing him finally admit he needed help, and realising myself what the tumours were actually going to do to him, was one of the most painful evenings in a long list of ones to come.

I went to spend a long weekend at Dad's 2 weeks later, we had all developed a rota of when we would go up to help as he certainly couldn't be on his own. This had been the case before due to his risk of tumour induced seizures ... now it was a matter of necessity. He had lost all the independence he once thrived on. His arms were failing, his leg had failed and the other was going too, his sight was getting worse, he needed assistance in every way. I must have asked myself every 10 minutes "How has he got this bad so quickly?!" and cruelly reminded myself every 5 seconds "we were walking around that lake a month ago!" Now he couldn't even stand. Dad had always been the traveller, the explorer, walking around the lake districts one weekend and climbing up volcanoes the next, exploring Rome one month, skiing with friends the next. We knew how much it hurt him and how hugely it affected him when he had his license removed after diagnosis, he lost his freedom, his independence, his life. That was bad enough, but at least he could still do some things - walk to the nearest fishing spot, to the nearest pub for lunch, get the bus into town for some costa coffee, do some gardening, etc - now he had even been stripped of the bad compromise. My heart broke for him, mainly because it was so painful and upsetting to watch but probably also because I knew his heart couldn't possibly break anymore.

We struggled through the Saturday, breaking our backs to get him up and down the stairs, wincing at every step thinking he was going to topple over, but Sunday was a thousand times worse. If I was struggling to understand or accept the difference in him over 4 weeks then the difference of a day would be impossible. We realised by Sunday evening that Dad being at home with people helping him simply wasn't enough anymore, and it certainly wasn't safe for him. As horrendous as it was (knowing what he did and didn't want) it was also a relief to finally hear Dad accept and admit that being at home just wasn't viable anymore. I called the MacMillan Nurse that was overseeing Dad's care and informed her of the weekends' events and our concerns. An emergency response team of Marie Curie Nurses were sent out within 15 minutes and spent almost the entire evening with us. I will cherish their support and care towards Dad forever. Having originally planned on travelling back home early that evening I could not bring myself to leave until close to midnight. After such a weekend I was finally having to accept the possibility that any time I said goodbye to Dad it could be the last. Needless to say it was a very emotional farewell. I sat on the edge of his bed with a brave face after having words with myself downstairs to keep it together and by the time I got to telling him how proud I was of him the tears were streaming down my face like they are now. I told him I knew he must feel like he had lost all his dignity along with his independence and that I knew he worried people would think less or differently of him and I assured him that actually, if it was possible, I had even more respect and admiration for him than I already did, and that I couldn't have possibly been any more proud of him. He raised his eyebrows in genuine surprise and said "really?" Typical Dad, so modest, he really had no idea how inspirational he was to us all. I told him he was my hero, that he always would be, and that I loved him more than I could ever love anyone. I wish I could re-live those 10 special minutes with him every single day.

Dad was offered a place in a home by Tuesday morning, where he could recieve professional care. I spent a week with him there at the beginning of May, trying desperately to entertain and occupy him during the day and failing miserably to sleep in his empty house at night. He was now so confused, so bored, so depressed, and every last word we exchanged during the day would play again in my head throughout the night, from his confused comments like "when I get out of here and back home again I'll do this and that" to his heartbreaking comments like "just pass me a knife". I can't imagine for a second how he must have felt inside and I will always wish he never had to feel that way.

I went up again the following weekend. Visits were becoming harder and harder as Dad was slowly deteriorating. I could no longer entertain him with taking him out into the garden in his wheelchair, playing puzzles or games with him, he was either sleeping or falling asleep and his sight and concentration didn't allow for games. Making conversation was painful too, he was too lethargic to chat and when he was awake enough it was either a very confusing conversation or a painful one. I had to remind him 2-3 times a day that he could no longer walk or stand. Every time he asked me to pass him his stick so he could get up out of the chair, everytime I had to remind him he needed his wheelchair and everytime he asked me "why, what's wrong with my legs?", I think I physically felt my heart break a little more.

Still, at this point, we all thought that Dad was going to have to endure this unhappiness and boredom for a few more months at least. He still had bursts of his sarcastic dry wit and cheeky personality shining through to remind us all he was very much still there, plus we all knew he was a very strong man and a fighter, he wasn't going to lie back and let it happen, he'd battle it to the end. We discussed looking at different homes, homes closer to us, Dad was being made appointments with physio's to assess whether he could be helped even a little with the use of his arms and legs, we visited a hospice where we arranged weekly day visits for Dad in the expectation he would enjoy the day out and the different things to do and people to see and that once he was deemed as being at 'end of life' phase he could then move there. Upon our first visit and assessment they confidently pointed out Dad was not close to that stage yet.

Yet exactly 2 weeks later I returned to Dad knowing I would not be leaving his side now until the end.

I had visited him the week before and had left him on the Friday afternoon when my Mum had come up to see him. Mum and Dad separated/divorced some 13 years ago and Mum had been asking us for weeks and weeks if we could ask Dad if she could go up to see him, or at least talk to him but he was never overly bothered or enthusiastic about the idea, until finally when we asked again and told him "Mum really wants to see you Dad, she just wants to say goodbye", he finally agreed to her visiting- maybe confirming his acceptance of what was happening. When I left him with Mum he was in pretty much the same condition he had been the week before and the week before that, but eating a little less. My eldest brother Simon arrived on the Saturday morning and I was going to go back up again on the Wednesday for another few days, only Simon contacted me on Monday to inform me how bad Dad was.

"Was Dad talking when you were here?"

"Of course he was, why?"

"He hasn't said a word to me since I got here on Saturday morning. He hasn't even said hello to me Cheryl. My dad won't say hello to me."

It broke my heart to hear it let alone be the one there experiencing it. I told Simon I would be straight up the following morning.

Dad had also not eaten or drank anything since Saturday morning. It was as if he finally saw Mum and then that was it, he had nothing left to do or say. Knowing at that point that Dad had not moved, spoken, drank or eaten for 3 days and was now simply sleeping 20 hours a day his entire family rallied around him to say their goodbyes.

NO PARENT SHOULD HAVE TO SAY GOODBYE TO THEIR CHILD ...

And we shouldn't have had to watch our nan and grandad say goodbye to our Dad. It was wrong and cruel on every level and it will haunt us forever. It was painful enough seeing his sisters break down when telling him they loved him and saying goodbye but to watch ... Not even worth re-living.

Once all his family had left it became the cruelest waiting game ever known. We knew it was coming, we knew it wouldn't be long, we knew it could happen in a number of ways, we just prayed it would be very quick and totally painless. Every single time one of us went outside for a cigarette or popped out to use the toilet we couldn't do it without saying goodbye to Dad, just incase. None of us dare leave his room for more than 15 minutes, we certainly didn't dare be out of shouting distance, so the idea of going back to Dad's at night to sleep was very quickly dismissed by all 3 of us children. We lived by Dad's side, grabbed half hour naps in the chairs when exhaustion became unbearable, took it in turns to go and have a lay down for an hour on the sofa on the strict understanding that if there was the tiniest change we would be instantly woken. None of us ever expected this would go on as long as it did. Dad was proving to us one last time that he really was the strong brave fighting superhero we all said and thought he was. The average human can survive 3-5 days with no food or water. Dad made it 13. My number one man finally let go at 4.50am on the 13th June 2013.

Whilst the last 2 weeks that we spent by his side will in ways haunt my dreams forever; the way we saw him, the suffering he endured, the vision of him trying so so desperately to speak to his children when he just couldn't manage it; I also take from those 2 weeks the most special moments I could ever hope to experience; Dad smiling and almost breaking into a laugh as his kids reeled off Monty Python quotes around him, Dad managing to mouth just a few words to his kids at a very special emotional moment, not loudly, not clearly, but well enough for us to make out the few important words he wanted to say and we needed to hear.

In a million ways our Dad was robbed. He was only 58 years of age and even at that a very young 58. He was so active, so healthy, so motivated. He worked his way to the very top of his RAF career from the age of 17 to retirement at 56, ending his duties as Warrant Officer and one of the most highly respected and admired men i've ever known. Dad had well and truly earnt his retirement and should now be enjoying every last minute of it, exploring all the parts of the world he was yet to see, but cancer robbed him of this and he didn't get to enjoy any of the retirement he worked 39 years for. It is difficult to not be bitter and angry when there are so many obvious reasons to be. But I made promises to Dad and wasting my time being resentful wasn't one of them. I can't change what has happened. As much as i'd like to I can't alter the past. But I can attempt to make a change to the future, even if my actions are only a tiny drop in the ocean. Raising money for MacMillan seems as good a place to start as any. They were a huge support to my Dad and the family through this and if they can help an individual or family cope better or suffer less then I want to fully support that. And Dad absolutely loved walking so what better way to raise money for the charity that helped Dad than to go walking?!

Dad we will be thinking and talking about you all the way, so many stories and memories to get through we may need to walk it a few times :-)

Miss you so so much number one. Think of you always. Love you millions. Sweet dreams Hero xxxxxxxxxxxxx

 

 

    

Donation summary

Total
£379.00
+ £15.00 Gift Aid
Online
£125.00
Offline
£254.00

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