Wednesday, November 11, 2020

10


 Ten, ten years, ten years since being told I was in remission. Not partial remission but proper 'up yours cancer' remission.

That's today, to many it's just another day on planet earth, hoping for a vaccine hoping to see loved ones again and hoping beyond hope not to be part of the statistics. 

I was hoping to celebrate this day, do something fantastic or luxurious. Just do something to celebrate having been in remission for ten years, did I mention it has been ten years?

I haven't blogged since 2014 when we lost an incredible woman, for some reason it hasn't felt right. Somehow I wanted a normal, maybe the normal I imagined or yearned for was BC before cancer. Funnily enough I almost feel that I'm at a place which is similar but different. There are days and weeks which cancer doesn't enter my thoughts, it's almost like it was someone else's story. There are times when, a certain scent of soap or the noise of a drip machine, I'm straight back on the ward being pumped full of stuff which is trying to kill the cancer but not quite kill me.

There are times when I get incredibly frustrated at not feeling fit or struggling to get fit. There are times when I am frustrated that my eyesight is not as good as it was or that I can't run as fast as my youngest daughter or I can't keep up with our eldest and her conversation. There are then moments when I think, blimey I feel like I'm getting old.

Mostly though, I feel utterly blessed that I have the option of getting old, with my amazing wife and kids. The opportunities to see them completing school and doing further education be it sixth form or university. Hearing that I am going to be a grampa, before I'm 50. Ooh 50, I'm highly likely to make it to 50, better not tempt fate but I'm living.

I'm living in a city I love doing a job which I could never have dreamed of, that I love. Living my best life, forget the insta-tube I'm loving my life. Love, luck, hard work and the NHS have got me this far.

From the outside I just look like a bloke and fairly big, fairly hairy bloke. I have two tiny scars, 3 dots tattoo'd on my torso and that's it for external marking. Internally I have no idea, other than I am probably carrying too much weight and I'm not as fit as I'd like to be. The fitness is a double edged sword, the time and effort I need to put in I also need to use recovering some times. I am sensitive to colds and flu, COVID scares the sh*t out of me but I am being sensible and trying to follow guidelines. I have a pituitary adenoma which means I have to use some hormone replacement therapy, that in turn makes me slightly more at risk of stroke or heart attack, neither of which are on my to do list.

The biggest scar is the one in my head, the one no one can see, the one I can't handle at times. The one which hurts when you least expect it to. I guess, although I've never been diagnosed, that I have some sort of PTSD. Whether that's right or not I don't know and as I suggested at the start I'm the luckiest so and so alive. I have no doubt I suffer with my mental health, whether it is related to having survived or maybe it's just me. Either way I have to keep doing, physically and mentally. If I get out of balance then I suffer as do the people I love as I can be a right miserable git.

Life has been incredible, I have coached a girls rugby team, I started playing rugby again at 47! (Retired at 48) I have traveled more than I ever dreamed I would, I have cycled (both muscle powered and petrol) and I have laughed.

We have a little motto, Love Laughter and Honesty. My wife is the most incredible woman, she gives me strength and love, she picks me up when I need it and keeps my feet on the ground when I am away with some hair brained scheme. She is also the mother of our wonderful girls, chalk and cheese but both amazing in their own ways.

We used to go to see It's a wonderful life at Christmas, a couple of years ago we stopped. Not because the film changed but it's meaning changed. I used to go and I would sob, I needed the film to bring things into focus. I was scared of letting go of what had happened, I was scared of looking to the future, daring to hope. Daring to live. 

Now I live, I live my life, I cycle more than I did,
I have designed my next tattoo, we are talking about our next holiday, maybe even looking at the future (10-15 years). 

I'm not religious but I am grateful. I am grateful to have the opportunity to live longer than I might have done.

Friday, May 9, 2014

For Eve

I mentioned in the last post that a wonderful woman was starting another battle with cancer. This time cancer won.
We see on the news everyday the hatred people have for each other or the lack of respect there can be between individuals. We see people suffering because of someones else's actions, be they financial, physical or even emotional.
Losing Eve has had a massive impact on so many people and at the funeral there was so much love and respect and tears for the loss of someone so loved, it brought back how human beings can be capable of love. 
It is not something that you can make a potion for, sometimes it isn't even something you can explain but you know it exists. Love, as a word, can be used to describe a cup of tea, a painting, a holiday even a pair of trousers. But Love is more than a description it is a sense, a feeling, a visceral sensation which some people never get the joy of.
People loved Eve because of her way, honest and kind, funny and highly intelligent, a great cook, a superb wife and mother and grand mother, she loved travel and food and exploring and settling down in front of the fire with her husband and shutting out the night.
Why Eve had to pass away I have no idea, why anyone has to go at a predetermined time is anyone's guess.
Eve was a brilliant example of living life, getting up and out even when it all must have been really easy to shut the door and hope everything left her alone.
Partly in that vein but also partly because I've been incredibly lucky in my own story I'm trying to live life as much as possible.
New years day saw me running down Saundersfoot beach, into the sea, with hundreds of other lunatics raising money for various charities. I had tears streaming down my face, not because it was cold but because five years ago I had done the exact same and over the last five years it wasn't always looking like I'd repeat the feat.
Stood in the sea with my amazing nephews and brother in law, was a superb sensation. Cold but adrenalin filled, I felt so alive, so lucky. Running back up to the main road I could see Wendy with tears in her eyes, a mixture of emotions so complex it would be wrong to try and explain. A quick kiss and then I ran barefoot along the main road in my wetsuit, no photos exist, passing cars and laughing to myself. I knew how odd I must look and didn't care, my love of life was too strong to worry about image.
I haven't a clue why or how I got to be so lucky, an amazing wife, two wonderful kids, a bonkers dog and more life to live. Wendy has been encouraging me since Christmas to get fitter for doing a bike ride which I tried last year. Last year I started it, tears streaming down the face again, good job I don't wear mascara, and got two thirds of the way round. This year the goal was to finish it, I have been doing more riding and running, watching what I eat. I gave up alcohol AND chocolate for lent, the first two weeks were really hard but now its weeks since Easter and I have hardly had any of either since.
My fitness is nearly back to the level it was at before I got poorly five years ago, I don't recover as quickly but I think that maybe understandable. I'm lighter than I have been for five years and my head is in such a good place it's wonderful.
I went for a walk the other day with mum and she crossed the stepping stones. It sounds like nothing to some people but to mum it was an event which caused elation. As she stood there on the other side the love of life was plain to see. The risk had been worth it.
So it was for me as I set of on my second Dyfi enduro mountain bike event. A couple of miles of road into the Welsh mountains and then all off road for 45km. I rode down Machynlleth main street, funnily enough with tears in my eyes, with a 1000 other bikers. A feeling of elation coursing through me, tempered with a nagging thought of falling off or breaking something.
The climbs came and went as did the descents, the food station came as it had last year. The clean up wagon waiting there for people who'd had enough, me, last year. This year I had some food and a chat with fellow bikers or marshalls and rode on through.
I finished. Just under six hours after starting. I wasn't last, pretty close but I wasn't, to be honest I'd have been happy finishing last. The goal had be achieved. I tried ringing Wendy but the welsh hills made the phone call wait until I was sat on the grass and sheep poo field clutching my finishers mug and crying. Tears of pure joy. Being alive is bloody brilliant and I love it.
I should have smiled more!
Photo thanks to Dan Wyre Photography.

Sunday, December 29, 2013

What a year.....

My last post was intended to bring people up to speed after my lack of writing. It wasn't detailed nor grammatically brilliant but I thought it was a reasonable summation of my life to then.
This post will be similar I guess, 2013 has been an incredible year for us, Wendy and I have settled into our new jobs and speaking from my point of view are enjoying them. Mine has been hard from the point of view that I am working more hours than I have for ages and some of my days have been longer than I have worked since I got into education. Because of this our work life balance isn't quite as good as it could be but I can not complain at all.
I had the news last week that the hospital don't want to see me for six months! That was a real shock, I'd been feeling under the weather and tired with my hours at work, I really need to remember what I have been through and that the treatment has aged my body quicker than my mind! Six months is something I never thought I'd hear. I thought I'd always be four monthly, six months may sound often to some but to someone who was used to going every other day its a massive luxury, not to mention a huge boost in confidence that the treatment has worked.
I asked the consultant about doing a new years day swim and other than suggesting my mental health should be checked he saw no reason for me not to take part. I took part five years ago and although there is nothing to connect a swim in the sea with a none hodgkins lymphoma it does stick in the mind. Whether I need to do it as yet another up yours cancer or what I have no idea but do it I shall, I do hope it's a little warmer than last time though.
Being utterly selfish I have had an utterly wonderful year. Being me I have had an utterly wonderful year tinged with incredible sadness. The anniversary of Gareth's death hit me hard again this year, I guess it always will. A good friend lost his wife to cancer a year after sitting on our sofa and talking about life late into the night. Then to cap it off one of the most amazing women I have ever had the pleasure to meet has been told her cancer has come back. She is one of the nicest people in the world and her husband is a perfect match for her, mellow and loving. They met later on in life and have lived more in those years than some people live in a hundred. What cancer is and why it happens I have no idea, all I know is that it happens and it takes loved ones. Having been rather close to not telling this story I have come to the conclusion that everyday is a blessing and that everyday is to be lived. I am not saying live every day as your last but everyday has the opportunity to be a good day, to be remembered for the laughter or the smiles or the sunrise or sunset, the feeling of the wind in my thinning hair or the sting of the rain walking the dog, things I can feel when others can not.
I love my life, I will always miss those who I cannot share time with but I will remember them and the times I did share with them. I will cry for those who go before their time. I will feel the pain of their passing but I will remember how they were and the joy they brought me and I will try to share that with others.
I will live my life loving my family and friends and being me, the luckiest man alive today.

Tuesday, September 17, 2013

The new me

Firstly an apology, well maybe an explanation not an apology as such. I haven't written on the blog for a long time, just over two years to be honest. This has been for several reasons, the first, misguided, reason was that I thought I didn't need to blog anymore. How wrong I was.
Secondly, blogging while teaching I find odd and an emotionally difficult thing to do. The blog has for me been a vent for frustrations and emotions. If I were to write about some of the challenges and challenging students I faced I would quickly be sacked or in the papers for being unprofessional.
I have had an incredible time over the two years since posting last, we've moved house, I've bought a motorbike, I've started a new job, Wendy has a new job, Wendy's been to New York (the week the hurricane hit), Georgia has moved to secondary school, we've been to Jersey and Paris and Pembrokeshire, I've got my tattoo, I've taken part in a mountain bike race (didn't finish but got two thirds of the way round a 30 mile route), I've lost a best friend to an accident, Ive lost a dear friend to cancer, I've made new friends, I've tried golf (it's not great but it's not terrible), I've cried a bit, I've laughed so much that I've cried, I've wondered why me and I've felt incredibly lucky.
Mostly though I feel blessed, lucky isn't enough, I have my family. The house we live in now has an incredible view over the valley which I have spent hours looking at thinking how amazing my life is. I have a new job which combines my love of engineering and the joy I find in passing on knowledge. The little adventure into the word of patents and intellectual property with Charlie is working out nicely and I can find nothing to complain about in the world I live in.
Yet until last week something was nagging at the back of my mind. My mind has been the weakest part of my recovery, fighting battles of why am I still alive mixed with I wonder if that pain is something I should worry about or not. I have had counselling which helped tremendously, through that I found that the job I was doing was giving me no room to build my emotional resilience. 
Through a conversation with Mark and then subsequent investigations at hospital showed my body was lacking testosterone. A new prescription of HRT (insert jokes here) which will probably last me a life time and I had a new lease of life. More energy and patience and a certain zest for life now comes in a gel which I rub on my shoulders and midrif, no where near the family jewels!
Life had reached, I thought, a peak of balance and contentment. Then last week I went out with some friends from my last job. We laughed and chatted over old times, new times and life in general. I was shattered so left early and drove home, part way I smiled and laughed to myself. I got in and sat with my wonderful wife and cried. We both shed a tear, the thought I'd had was that not once in the evening had anyone asked how I was. There was no reference to my health or hospitals or anything cancer related.
It was so amazing to be 'normal' I cannot explain how emotional the aftermath of being ill is but I now feel that I'm through, I'm Nick Hart. Husband, dad, son, brother, friend, engineer, lecturer, biker, eater of curry, drinker of beer and lover of life.
Thank you Wend you are utterly wonderful and I love you with all my heart.
Thank you to everyone else who's read this blog, it has been incredibly cathartic for me and I hope not too badly written for you reading it. 

Wednesday, June 22, 2011

Learning

How to be me again.

I'm sorry for not posting for so long, so much has happened to me and to others. There's been earthquakes and tsunami, unbelievable how powerful nature can be. I can't imagine life in either New Zealand or Japan, talking to Charlie last night in Christchurch and it gives a tiny glimpse of how life can change in moments. I still have stuck in my mind the image of the tsunami hitting the coast of Japan and cars trying to change direction away from a wall of water.

I'm not sure why I stopped posting on the blog, maybe it was because I was busy trying to remember how to be the teacher I was. Maybe by talking to people I felt that I had my emotional release, more realistically I think I wanted to finish the story but I didn't know how.

Several people who have followed the blog and have emailed and texted support suggested that I should turn the blog into a book. I like the idea and started looking into it, asking friends about publishing and talking to really kind people who had all sorts of advice. I got thoroughly carried away with the idea of publishing the story and raising money for charity, maybe I should pursue it more but I need to stop the story and return to reality.

Looking back I find the last two years almost fictional, my mind is playing a wonderful but dangerous trick on me. It seems to have blanked out so much of the last two years that unless I'm talking to someone about it I forget it's happened. I guess it's a self preservation technique which works 99 percent of the time the other 1 percent memories catch me up and bite me on the bum.

Over the last few months my energy levels have increased, as has my fitness. Up to Easter I felt absolutely amazing, I had built up my attendance at work from calling in once a week to staying in a couple of hours a couple of times and then teaching a couple of hours with another teacher and then teaching on my own and progressing to the point four weeks ago when I took back my timetable fully.

At one point in time I was wondering if I'd ever get back to work let alone back to my full timetable, coming up to Spring bank half term I felt fantastic, tired but fantastic. Then I started with the odd ache and pain that I couldn't explain, upper left chest, along with an itchy back and itchy scalp. The itching is something that I ignored when I first started this journey, the pains were what took me to the gp's. Along with being tired my head started to wonder, this time last year I relapsed, the cancer came back. Fathers day last year has a photo of me looking shocking, fathers day this year has no photos of me but if there was I'd look tired but relieved. The scans were all clear, my bloods showed that my immune system is still pretty shot but that's to be expected.

Weston park are still at their best, my phone call asking if I could discuss the sensations I was having brought about a series of tests and scans all within two weeks of ringing. I can't praise them enough, they don't even think I'm a hyperchondriac either!

I think it has come at a good time, a reality check/slap across the face. I have to learn how to be me, the new me, not improved but still alive. I have had to learn to chill out at school as stressy teachers get eaten for lunch. I have to balance my physical exertion with making sure I can recharge my batteries sufficiently before the next effort. I have to exercise my brain as much as my body and most of all I have to remember how amazingly lucky I am.

I have had so much support from friends and family, far and wide. I have had letters from people who have read my ramblings, thank you Gordon yours meant so much, texts and emails. I have to move on with my life and whatever path that takes me down or up! I love my life, honestly there is no luckier person on the planet. I've never written a diary before and whether I write one again is up for debate. Thank you to anyone and everyone who has sat through my drivel. Most of all to my amazing wife, I love you so much and I couldn't have done the last few years without you. Thank you.

Thursday, February 3, 2011

Normal

I go on about normal too much maybe but it's what I crave and it's the normal things that we haven't been able to have.

For example picking Wendy up after work and driving to a little cafe and sitting drinking good coffee in the sunshine. Walking the dog without feeling like my legs are going to fall off, doing bits round the house (not much but starting.....), looking at school work, even thinking about going back to school. All these things which many people take for granted or don't even consider during their days, these are the things that I have craved and I'm sure many other people suffering illnesses crave their normal too.

My head is a bit up and down, I'm petrified of going back to work, it scares me more than any procedure or chemo session ever did. The only reason I can put that down to is that I have control over it, it is me and only me that can be the teacher in the classroom and it is my head and my mouth that get's information into young people, hopefully get them thinking too. When I was having a process done to me I'd accept that it'd either work or it wouldn't, regardless of my input, in this way I found I could accept the processes in a much more relaxed way.

I'm itching to get back though, there's only so many times you can look at bike bits on the internet and day time telly isn't all it's cracked up to be, I feel myself losing brain cells as I watch and I don't have that many to start with! I want to get back to being the teacher I was, not the best but I was ok and I had a good rapport with most of the kids and some of the teachers! I'll get there, I know I will it's just how long it takes and how I am in the mean time.

I've ridden my bike, I've been swimming with the girls, I've washed and hoovered the car and I feel great. Yes I still get tired, yes I still get scared when I have a cough or an ache and yes I'll probably always have that fear but the hospital don't want to see me of three months so I have to take their lead and feel confident that I'm on the road to normality again.

Walking home from school last night with the girls just made me so glad to be alive, the laughter and joy of life that we had was such a tonic. Lay on the sofa with Wend just finished my day off perfectly. Life is good, long may it last.

Friday, January 21, 2011

Up there for thinking down there for dancing

Too much thinking and not enough dancing that's my trouble. Another week and another head full of worries, oh and plenty of snot to boot!

The latter has only been presenting itself at night, in the form of coughing fits, the worse making me sick. The best waking me and Wendy up time and time again. I guess the lack of sleep took it's toll on my body but it had a deeper effect on my head, the tired body and the irrational head started thinking that it feels like it did last year when the furball came back.

I didn't have any of the other symptoms but my head thought and thought and worried and worried and all of a sudden I'm sinking into how do we tell the girls again, Wendy shouldn't have to go through this again, I don't know if I have anything left to give. So when in doubt give Weston a shout!

I left Weston feeling like a complete hyperchondriac, having had bloods done, a thorough examination and a chest xray the worst that they found was one of my blood results was one point off being perfect! The rest of my bloods were as good as a normal human being and according to the ward clerk much better than hers! My xray was clear and the examination showed nothing other than a big scared bloke with a cold.

I left with a course of antibiotics and a big piece of humble pie. As seems to be the case I meet people worse off than myself on my visits, maybe they're sent to remind me how lucky I am. The staff always reinforce the if you're worried get in touch message which made me feel better and then I thought about my blood results, nearly four months after stem cell transplant and my bloods are normal. How brilliant is my body, at replacing blood, not at dancing!

Wendy says, rightly so, that I think too much and I have too much time for thinking. I do think too much and looking back at my life the things I've talked myself out of by thinking too much is amazing, a ride on a bmx back in the day, a ride on a drunk but pretty scouser (long story chivalry prevailed), parties and life experiences which will never repeat themselves. But then I am a grown up now and riding a bmx is not so good for my back!

So the dog and I went for a big walk down Wyming brook footpath and back up the race track. It was a cracking day, cold and bright and the air I pulled into my lungs was so sharp and invigorating I couldn't help feel totally alive.

So from now on it'll be a bit less thinking and a lot more doing, not dancing, doing stuff rather than thinking about stuff. Well that's the plan anyway, I'll be scared in the future as I have been in the past but I need to keep rolling with this journey called life and it's little foibles.

It was a bit parky!

No time for sitting, it's time for doing.



I likes steel I does

20 minutes from a big city!