Friday, December 24, 2010

Merry Christmas

Like it says Merry Christmas. Wendy and I are having a phone and web free Christmas so greetings are a little early.

A very short post this one, just to say how amazingly lucky I am to be here. To have another Christmas with my beautiful family is a blessing I wasn't always sure I'd get. Not everyone is so lucky and my heart goes out to them, there is often someone worse off than me and I hope they can find solace and peace in the arms and hearts of family and friends.

For now I'm going to curl up on the sofa with my girls and grumpy dog and a glass of something suitable. The love and support we've had this year has been amazing and makes me warm inside, along with the mulled wine!

Have a great time, love to all.

Monday, December 20, 2010

Traditions

Some traditions hark back to a distant place in time. Others we start. Last year Wendy and I went to the Showroom to see it's a wonderful life. This year we did the same, does that class as a tradition? Anyway I sobbed, I thought I was sobbing quietly but according to Wendy I wasn't. The bit that got me was when George Bailey comes back to being (he's granted a wish by Clarence (angel second class (got no wings)) that he'd never been born), so he's just seen the world as it would have turned out if he'd never been born.

So he'd seen his wife as an old maid, he'd seen the town he lived in turned into a corrupt little town in the pocket of the old miser in charge and he'd seen his mother broken by grief when his younger brother drowned as he'd not been alive to save him.

So to come back into being and see his children and to see and hear and hold his wife was such a joyous occasion for him it set me going. I hadn't been taken by an angel and I haven't changed the world I live in but I have experienced being unable to hold my children and being unable to hold and see and hear Wendy. To be given a chance to do that again has been worth all the time and drugs and injections. How much time I have on this planet is unknown but it is all so precious, it is worth more than anything money can buy. My life now is simply amazing.

To add to the traditions we went to the panto again, this year Sarah and Geoff were late through no fault of their own, they battled through snow and ice to drive from Wigan to see some bloke in a dress........ We were also joined by Debbie and her daughter Alicia, the cousin we didn't know about but now can't imagine living without and her daughter who I taught at school. Then to round out the extended family was Shelly and her bloke Dave and his God son Nathan. Sixteen in total with mum and dad and Viv and family. Carys was the loudest by far but the laughter that came when the dames boobs slipped was worth the entry fee alone!

Whether the ice skating in the peace gardens makes it into tradition I'm not sure but the post panto curry may!

Walking the dog this morning was a chilly experience, four out five of the glass milk bottles had broken this morning as it was so cold and the new washing machine refuses to work as the water feed to that is frozen too. But as my nasal hair, newly acquired and it was sorely missed, froze in the cold air my heart sang in my chest as being alive is just bloody brilliant.

Tuesday, December 14, 2010

Christmas Show time

Sometimes children's school shows are a little bit wearing, songs that have been rehearsed to death in the home, recorders out of tune and pushy parents taking up the front seats.

Sometimes they're not. Carys' was a lovely event last week, she was a narrator with a line of importance. It went well, Carys said her line well, with clarity and volume and we sat there pleased as punch. Anyone who's ever met Carys won't be surprised at her performance as she's a young lady who can be a star in her own lifetime if she so chooses.

Georgia has been a different child recently, she's grown into her own skin with a confidence that I worried she would never find. Her sense of humour is wickedly quick and she has her own identity in a world that could be described as bland. She even volunteered to be a narrator for the Christmas play!

This is something that neither Wend or I would have ever believed could happen, volunteering to stand in front of a room full of strangers and speak out loud. Well today was the day. We went with baited breath and sat in the hall on chairs that are way too small for my rather large backside.

There was the traditional waving and smiling and thumbs up as the kids came in and sat in their pre-show places. Then it was show time, the first people on stage were George and two other narrators. There she stood holding on to the hem of her t-shirt a little smile on those lips and a sparkle in her eye. Then she was into her lines, clear and loud and so perfect. Wend had tears in her eyes and I had a massive lump in my throat. It meant so much, after the past two years there she was our Georgie pickle stood with confidence narrating her lines in front of parents and peers alike.

She's just gone to bed and I can't put into words how proud I am of her, so I told her just that.

The show was brill, even after George had sat down, there were shadow puppets and costumes and singing that was way better than it should be for a junior school show. To say I felt warm inside is a massive understatement. What a fabulously lucky man I am.

Monday, December 13, 2010

Other peoples stories

Like I commented last time sometimes it's about other peoples stories and their experiences with cancer and the subsequent treatments. Sorry that's wrong, it should be other peoples stories and their experiences with life. Life is a common theme running through all of us and how we live it and how we see it is entirely up to the individual.

The snow has been an incredible boost to the community, it's slowed people down, it's made people think of others and for me it's been wonderful to see people working together clearing snow and talking about something new.

Mark and I went to the NEC for the motor bike show, I was a little nervous as this would be the furthest I'd driven for ages and it was also minus six as we cleared the car off in the morning! It was minus eleven by the time we were on the M42 towards Birmingham, I thought it was meant to get warmer as the day progressed!

We made it with no incidents, other than the screen washer jets refused to thaw, not surprised really I wouldn't work strapped to the bonnet in minus eleven either!

The show was great with a notable exception, Jason was meant to be meeting us there as we'd bought him the ticket as a birthday gift. Due to the weather he'd lost a couple of days work that week and then the forecast wasn't so good so he decided to stay home. It was a damn shame as he works hard and I haven't seen him for ages and it would have been nice to catch up. But this is what I mean about other peoples stories and experiences with life. No it wasn't life or death and to many it would be just a motor bike show but to Jason it would have been a day out and to me it would have been time with two of my best friends. So it was annoying and disappointing but not to be helped.

Mark and I spent plenty of time sitting on motorbikes, some way out of our reach some that could be within reach and some that I wouldn't touch with a barge pole but it was fun to try anyway. There was a large number of scantily clad ladies brightening up some stands and there was a large number of overweight sweaty blokes dulling the effect somewhat with their leering and over large cameras. I guess sex sells!


Me making a big bike look average! (yes that's facial hair too!)

Mark going reet fast!

The following night was a curry with the biking lot. I don't like calling our christmas do for some reason that makes it less relaxed than just going for a cuzza! Again the weather had an effect, although some of the party had been skiing on a local dam wall and some had been snow boarding further into the peak, some couldn't risk the journey due to kids and babysitters etc. Pete and Rosie made it up from Bristol though and it was fab to see them both, I think in the years I've known them I've ridden with them once, but I've shared pints and tall tales over curry with them several times and it's always a joy to catch up. I had a great time and even without Jim and Nic and Baz and Lucy there were 16 of us which meant plenty of chat and banter flying about.

I came to the conclusion at the end of the evening that if I ever go on a biking holiday with Pete I'll have to be careful about my alcohol intake as there is a massive chance of it getting very messy!

Life is great. I had a check up on Friday, just gone, which went ok except for me having a bit of a cold. So I couldn't finish the tablets which has been a bit of a blow, in fact they gave me some more antibiotics which are great for the cold but not so good for the sleep and the stomach! Sitting in the waiting area at clinic is always interesting trying to work out the dynamics of relationships. Listening to the couple next to me, it was hard not to! It was touching hearing the husband making small talk but adding in the odd reassurance to his wife. She was obviously quite stressed about being there and the reality of starting the cancer journey, she turned to me an asked how I could read in the waiting room. I didn't say it was a cover for people watching, as I was reading! For me I have been there so many times and I feel so relaxed about my situation that I can concentrate on a good book. (I've started re-reading feet in the clouds about the little known sport of fell running and have found my legs moving faster as I walk the dog!) We started talking about the surreal feel of the initial news and the over riding feeling that someone will pinch you and wake you up from a horrible dream. It would have been nice to talk for longer but then my name was called so another meeting of people came to an end. Who knows how her story will pan out, or the young couple who were holding on to each other so tightly, or the young mother who came in with her boisterous toddler or the guy playing on his phone?

It got to me somehow, knowing what I've experienced, I just hoped that they would have an easier time of it. That their story wouldn't be long winded and quite such a roller coaster ride.

Wednesday, December 1, 2010

Am I so transparent?

Writing a blog has been a fascinating process for me, being honest with my feelings but not pushing my opinion, it's been massively emotional for me and an incredible release. Reading the little comments has been a boost as well, it's been a real support to us knowing people are out there rooting for me.

Reading Gwyn's comment on the last post was like looking into my head which was weird! I'm not known for my patience but I, mistakenly, thought that I was hiding my desire to be back to normal! Obviously not.

It's been a strange couple of weeks with some real highs and some mind focusing lows. The low's have mostly been due to an inane ability I have to look at the negatives, sometimes I just get caught into a spiral of negative thought. Why I don't know, how I break that spiral is never clear to me until Wendy points it out, I have to break a cycle. Usually it's a physical thing with me, go for a walk or go in the cellar and hit stuff, it's a combination of busy head and a body that isn't ready to do all the things I want it to! The recent spiral was broken with a mixture of walking the dog, doing my physio rehab and also sorting some paperwork out. Now this last one is a new one for me but I found it very rewarding, even though it took me a full morning to fill in a form and write a letter!

I called in to work last week and had a wonderful time for a couple of hours, then I crashed and just had to leave. It was as quick as that, one minute happy and chatty next minute I'm quiet and focussed on leaving. It was weird but it was also a good sign that my head isn't anywhere near ready for going back, that said it was fantastic to see staff and kids alike and the positive vibe that the majority of kids gave me was brilliant.

Physically I'm getting much better, it's unusual now that I sleep in the day, my hair is trying to come back (everywhere, which is surprisingly nice). I've been playing in the snow today of which we have a ridiculous amount (14inches) which has been fab. Playing, throwing snow balls, sledging, building a little igloo/snow tunnel and rugby tackling people all without getting out of breath or having to give up five minutes in is just incredible considering I've only been out of hospital for two months.

This is a fact I have to hold onto. I'm lucky like a lottery winner, talking to a guy at the physio sessions he was in isolation for six months, having infection after infection. He went from 16 stone to 10 and has lost so much muscle tone he has to walk with a stick to save him falling all the time. He doesn't seem to want sympathy but he just wants to be normal, I guess that's a common theme with people who've been through an experience like we have.

My normal is being a dad and a husband and a teacher who bikes and runs and does stuff. As it goes I feel like I'm getting there with the husband and dad bit, I so want to be teaching again it makes me ache but first I need to be fit, physically and mentally. So, Gwyneth, I'm going to take Nick size small steps...........way slower than I'd like but probably better in the long run.

Friday, November 19, 2010

Just a little too much. (Dawn, put the kettle on)

I've had a fabulous week, I've felt more relaxed and fitter than I have done for a very long time. I'm still getting tired but it's a learning process, how much I can do in one day and how I feel before the batteries run dry, kind of!

Something has been missing though, my life has changed a little since I had my Hickman line out last week. My daily injection is no longer needed which is fantastic, my belly was looking like a very random dot to dot puzzle. I have had a real mental block about giving myself the injections and I had reservations about Wendy giving them to me. I appreciate she's a trained nurse and that she was happy to do it but I didn't want her to, I didn't want our relationship to change to one of carer and cared for. If it got to the stage that I'd been so ill I had no option then so be it but I wasn't planning on being ill! This meant that I had a daily visit from the district nurse team, not the whole team just one of them at a time!

This visit was as much a psychiatric assessment as much it was to administer the drugs. It helped so much having a friendly face call in and have a bit of a chat, I can understand how important it must be for people who are alone. The team helped me come to terms with coming home, being ill, being better and also about being a complete woos when it came to me doing the injections. They were patient and funny and they did a great deal more for me than just give me injections they started my head healing.

The removal of the line has been a relief for me, I had worried bout how the procedure was going to work and whether or not it was a case of just pull the darn thing out. As it happened it was local anaesthetic into the area around where the line exited my shoulder and a reasonable amount of cutting. The line has a rough area designed into it so the body's tissues can grow onto the line and hold it in place. Well from the grunting and huffing of the doctor and the pushing and pulling on my shoulder I guess my body had done a good job of growing new tissue! Once the connection between me and the plastic tube had been severed it was a gentle pull and out it came, as it was pulled out of my neck the doctor put pressure on my neck to help the vein heal up and so I didn't bleed under the skin. I would have been annoyed to have beaten cancer twice and then bled to death! I now have three stitches and a line on my shoulder which may give me the scar I was wanting. More importantly though I don't get woken up by a sharp plastic clip digging in my nipple every time I roll over in bed and I don't feel self conscious in front of Wend when I'm in my birthday suit. She's never commented or made an issue it's purely in my head that I'm feeling self conscious about it.

This new freedom has allowed me to be a little more adventurous with my days, so along with my physio rehab I've visited work and driven around more than I've done before. I'm also really enjoying walking the dog the smell of the leaves, the sound of the river and the feeling of the seasons changing.

The visit to work was great, seeing people and having a bit of time to catch up but most of all it was the welcome I was given. Having been away for so long you never know how people will react to you. They're busy with their own lives and their own worries but they made me feel so welcome and the number of people asking when I'd be back, it was quite humbling.

Well it had to have a bit of a lump in the smooth running and that came on Thursday. It was my fault, I'd felt great on Wednesday and so I'd done too much. It wasn't the end of the world too tired like a few weeks ago but it was a definite reminder of how I'm not sorted, regardless of how good I had been feeling.

I feel great in my own skin at the moment and have very few if any sad thoughts, until I was watching children in need tonight. A young lad had lost his mum to cancer, he was talking about how brave she'd been having all the injections and the treatment and yet she still passed away. I had a lump in the throat and a tear in the eye when George piped up that I had been brave having all the treatment. I haven't been brave I've just had to accept my lot and get on with it, I've been damn lucky to be honest. I'm still here and I have the majority of my faculties about me, long may it last.

(Oh the instruction in brackets is to a friend of Wend's who complains about not knowing whether to have a cup of tea with her blog up date.)

Monday, November 15, 2010

The start of normal

Normal for us is being out in the peaks walking and scrambling and generally enjoying the great outdoors. So the first morning of the rest of our lives that's what we did. A gorgeous blue sky followed us all the way to Burbage where we walked under the gritstone cliffs and through the heather watching like minded folks enjoying the amazing scenery.

It was the first time we'd taken Bertie on the rocks and we needn't have worried, I think he's actually a grey hound/kangaroo/mountain goat cross rather than a pedigree Border Terrier. The way he scooted about and then bounced over the heather brought joy and amazement. I felt superb scrambling up the cliff to try and catch up with the girls, I couldn't have done it any quicker but I felt great and my heart wasn't trying to burst out of my chest as I'd expected. With few slips and slides and plenty of laughter we were back at the car ready for tea and medals at the local cafe.

This was the scene of my first welling, I could feel my eyes filling and my heart pumping. Looking at my amazing family, sat round eating toast and having their various drinks, we got here. Through it all, all the chemo, the scans the high's and the lows. The blue lights and the crappy food (in hospital), we'd got to the other side and I just felt an overwhelming pride in these three incredible people who I'm lucky enough to call my family. They'd carried on, going to school, walking the dog and keeping the house sorted and all being fed and watered and carrying on with life.

I kept it together, can't be sobbing in a public place! It took it out of me though and I felt flat for the rest of the day, the sobbing was stuck somewhere and it needed out but it's not like a spot that you squeeze it needs a trigger. Charlie was very nearly that trigger when he phoned from New Zealand, I wish I could have sounded happier but I had nothing left and I felt myself going but then the phone went dead. He rang back, it went dead again, he rang back muttering something about the hamsters weren't running hard enough! It was enough though for me to lose my train of thought and for the sobs to remain stuck, probably to Charlie's relief!

They came at Sunday tea, we'd had a lovely day going to the park with Viv and her family and then chilling, watching the rugby and just pottering round home. I'd taken the hound for another walk just round the block but I felt capable and really enjoyed the feeling of the air in my lungs and the warmth in my legs. So we're sat round having had a beautiful roast chicken and were just tucking into some pudding when they came. Wendy saw them coming and I tried in a way to stave them off but they came anyway. This time I knew why, I was looking at George and thinking how grown up she's becoming how much has changed since the start of round two. How fabulous it was to take the girls to a restaurant on Friday and the way they behaved. How I'm going to get to see them grow some more, this is it, I get to see my family blossom and grow. Whether I agree on boyfriend choices or come out with the immortal line 'You're not going out dressed like that' I don't know and to be honest I don't care because unless I get knocked over by a bus (other forms of mortality available!) I'm going to live more than was expected. The feeling that my life is extended is weird and wonderful at the same time, I just don't want to mess it up.

Friday, November 12, 2010

Done it

I'm in remission, again! Liked it so much I thought I'd do it twice!

The scan has shown that the lump has reduced in size, the nodules on my lung have disappeared as they hoped they would, the liquid round my heart has gone but has left a thickened sack around the heart and my liver is a bit fatty. Fois gras anyone!

It's not sunk in yet and I haven't sobbed but I will and I'll bloody well enjoy it. My head feels like it's going to explode with all the pent up angst and my heart feels like beating out of my chest.

I owe so much to so many and the hearts and thoughts have given so much. My wife and kids have always been my raison d'etre and the look of relief on Wend's face when we had the news was magical as was the reaction of the kids when they came home from school. Carys wanted to squeeze and squidge me, George seemed happy with a hug but there'll be plenty more of those.

The big boss (not Wendy!) says I'll be in trouble if I break my arms cartwheeling! Mum sobbed, Viv sobbed, Dad hugged and hugged as did Amanda, Belinda squeeled and Mark was overjoyed. After having to give shitty news out for so long it's fab giving good news for a change.

Going to go for a curry and a couple of shandies tonight, a little celebration. This time remission feels right, it feels like it has a permanence to it as though the little bar steward is beaten. Whether it is or not only time will tell and that'll always be in the back of my mind, but for now I'm going to enjoy life for as long as possible.

Thursday, November 11, 2010

Fireworks and friends

The torchlight procession was lovely and the the fireworks were excellent, the food queue was rubbish. It's the one thing that let down the evening, it didn't flow and was too slow, it's not a massive problem but it meant that I spent more time stood waiting than being with Wendy and the girls.

I felt good Sunday, my legs knew I'd been walking and standing for longer than before, but I felt great. I so looking forward to the evening, beer and chat with my two best friends. The Hillsborough Hotel is a weird little pub which has it's own brewery attached to it, it's the sort of place that has live music. In fact there was a group of people playing folk music in the conservatory at the back while we chatted and laughed and shared stories, some old some new. Mark and Charlie had bought me a brilliant black and white painting, ink on silk, of Stanage edge. Emotive and beautiful it made me think of times walking and biking on the edge with friend and family. trying to catch Mark riding down the bridleway and getting to know Veronica on her first visit to the UK while watching the girls jumping from rock to rock.

It's not big but it's special and it meant so much knowing who it was from. The beer sank really smoothly and the banter was light hearted and witty, we even had a Barry join us which added another dimension as he has witnessed Charlie being tipsy on more than one occasion!

My head was surprisingly good the next morning, much to my amazement, perhaps chemo stops hangovers........not something I'm going to research too much! My second physio session was superb, I was buzzing with endorphins afterwards and wanted to take on the world. Something had changed, be it in my mind or my physicality or both but I worked harder than the week before but it was easier to do. I could lift more and I lasted longer on the aerobic exercises and my breathing was easier too. It just gave me so much confidence and such a high.

My high was tempered slightly by a scan the next morning, a tickle in my throat prompted my to stay and get it checked out. So I spent the morning giving blood and breathing in and out to be told all was well. I have my consultants voice ringing in my ears warning me of being complacent about tickles and coughs. It was no bother and at no point was I made to feel as though I was being an inconvenience to anyone. As I was leaving I had to squeeze through a group of people on the corridor, they were obviously the recipients of the worse news possible. There is a look in the eye, an acknowledgement of the fragility of life. It brought me back to my own reality and that the scan I'd had that morning will bring some sort of closure, one way or another. Up until that point I'd had only positive thoughts about it's outcome, even now I'm having positive thoughts. I've been walking the dog and thinking about work.

It'll be what it'll be.

How does she do it?

I've been a royal pain in the bum leading up to my birthday last week. I've had too much time to think to be honest, I've been thinking too much about life and what's important. I've spent time looking out of windows wishing to live, not wishing for a new phone or a bigger better faster thingymebob.

So when asked what I'd like for my birthday I said nothing, as in I don't want anything rather than not saying anything! The thing that I couldn't see in my blinkered way was that Wendy and the girls and others around me wanted to celebrate my birthday and that the giving was as much for them as it was for me.

The biggest thing for me was that I made it, at times I was unsure as to whether I'd get to my 39th year. I guess it was a little touch and go at times, but hey I'm here and I have no plans to go anywhere soon.

I had started to suggest things to Wendy but I still wasn't being overly helpful. But she came up with the one thing I didn't know I wanted but I really did! Along with a cookery book and a box set of dvd's, which I'd forgotten I wanted, Wendy got me a lovely ceramic mixing bowl. I have watched cookery programs and yearned for a nice ceramic bowl in which to make bread. Now I had the bowl and the book so Saturday morning I made my first loaf of soda bread, it was so nice mixing and feeling the dough in between my fingers. The really basic action of mixing together simple ingredients and then hoping and watching as the dough turned from something so soft and plain to a lovely looking loaf. It tasted ok too, even if I do say so myself.

Crusty and tasty

Friday had been a lovely day with gifts and laughter and the return of Charlie, on a flying visit from New Zealand. Saturday morning started with wonderful pancakes, bacon and maple syrup. Breakfast in bed, with Wendy and the girls and damn good food how can I not wake with a smile.

After a fairly lazy morning we had a lovely afternoon with a superb afternoon tea which Wend had prepared. Mark and Jill brought Charlie down and mum and dad called as they were taking us to Eyam for the fireworks. It was a lovely afternoon spoiled by me having a panic attack and being rude to Wend. We were half way to Eyam and all of a sudden I couldn't think where I'd put the tickets, the last time I could remember seeing them was when I was putting my shoes on and Wendy had moved them all of 2 inches from where I put them. This in my mind had been enough to stop me picking the darn things up and I said as much. It wasn't Wendy's fault the tickets hadn't been moved out of my eyesight and the embarrassing and worrying thing was I'd picked them up and put them in the pocket on the back of the car seat! It served to show me how my temper is still so close to the surface and that although my fatigue levels are miles better than they have been it still has a bearing on my patience.

Wednesday, November 3, 2010

Physio-terrorists

I was nervous about going to the physios, I was nervous about being crap, about being the new boy, about how I'd feel the next day. So it was with trepidation that I got on the bus and pottered up to the Hallamshire for my physio controlled work out.

I was also really excited about it as I want to get my fitness back as it was such a big part of my life before. I was never a gym bunny and I hadn't realised how much I needed the endorphins until I had been denied them. But now I'm aching to get back to playing, running, swimming, biking just being me again.

So I changed into the only shorts that fitted me and a top that was once loose but is now almost indecent and into the world of heart rate monitors and sweat and pain we go. Well not really, it was friendly and gentle and welcoming. All the people there were people coming out of or going through a fairly harrowing time of their lives for one reason or another. No-one was rippling muscle or baywatch babe and it made fitting in much easier, the only person concerned about my ability was me.

My ability was mixed, I was pleased with my strength but frustrated with my aerobic ability. I know I've been through a lot and my body is doing remarkable things but my aerobic stamina cost me a great deal of time last time I tried to sort it out. I think that the fact I've done it before is a massive help to me but it's still a daunting hill to climb. Best get my crampons on.

Yesterday I had a trip into work, dad drove which was a massive help as although I felt a lot better than I thought I would after my work out Monday I was still aware that controlling two tons of metal was more taxing than controlling 18 stone of bald Yorkshireman on the bus! It was lovely to see people at work, it wasn't a social I hadn't got enough to see everyone that I wanted to (sorry Belinda) I had a form that needed signing too but it was brilliant to see the people I did. Some looked straight through me, but then I do look very different to last time they saw me, bald of head and bald of chin too!

All in all it's been a reet good week so far, I'm tired today from not sleeping very well but otherwise I feel great, even walked to the corner shop without having to stop for breath tonight! I want to keep at this level of improvement if I can, not sure what I can do to help but I'll keep doing what I am so far.

Sunday, October 31, 2010

Heavenly

It's been a great week. The girls were on holiday and mum and dad had them to stay for a couple of nights which was great, we love the girls but every now and again it's nice to have a bit of a lay in!

Wednesday Gwyn, Drew and Simon (Gwyn's eldest) called round. Now for all the times we've visited them in Wales this was the first time for Gwyn and Drew to call in on us. It was wonderful, when old friends meet and the conversation flows and the laughter is raucous. Simon has a wonderfully quick and dry sense of humour and it was such a relief to have conversations that focussed on others peoples lives and topics away from hospital and illness.

Yes we spoke of my time in hotel Hallamshire and I found it very strange as I'd forgotten things about my stay, maybe I'd blanked them out or my head had come up with a coping strategy. Whatever it was it felt very strange knowing that my memory was playing tricks. But overall the conversation was about life, normal life and normal dreams and normal ups and downs.

We ventured into town and found another wonderful meal at Aagrah. The strawberry beer before certainly hit the spot for me and the conversation and laughter were as much a tonic as any drug could ever be. It was just wonderful.

Thursday I felt good, a little tired but not exhausted, so we thought it'd be nice to go for a drive and get a butty and sit and watch the world go by. Well we got 2 miles from home and it was enough, it wasn't anything serious but my concentration was suffering and as Wend doesn't drive I couldn't ask her to take over. We bought a butty and headed home to chill. The chilling took me to bed, it took Wend to Morrisons!

Wendy made a fab kedgeree and we drank a bottle of wine, the decadence of not having the kids around............

Friday morning was a little steady for me, I had a funny little headache which was related to how fast my movements were. I think traditionally this sort of ailment would be called a hangover! It didn't interfere with my visit to Weston though. I have been setting myself little targets all the way through this experience, be it walking to the loo or brushing my teeth without any pain. A big target for me has been waiting for the consultant to say we'll see you in two weeks, to me it's a sign of progress, a sign that my body is fighting back. Well it's happened, no appointment this Friday! It felt amazing just like reaching the top of a climb or getting a new job or when the person you fancy says yes to a second date. A weight was lifted, I stood a little taller with a bigger smile than previously imaginable.

The up wasn't to stop there, a short walk over to the Hallamshire to see the Physio department was to be the icing on the cake. Last year I craved a structured return to fitness, something supported by someone who knew what they were doing rather than me beating myself into the floor. This time as I have had a transplant there is such a rehabilitation scheme which is run by the physio team at the Hallamshire.

Jo was amazingly patient and sympathetic to my impatience. Suggesting that she had seen people like me before and that although she hadn't been through anything like I had she was very understanding. She even laughed at my jokes.......I think anyway! My regime starts Monday so we'll see if I survive to tell any tale worth telling, or not as the case may be.

All this up was tempered with a little down on Saturday. We went to the pictures which was brilliant, more normality, a family going to the pictures as a treat for the end of the holidays. It all went really well until we tried to get home, an ambulance had broken down on the tram tracks which meant we had to find a bus. Walking up through town was hard, concentrating on the traffic, the crossings and the crowds made it even harder. I was starting to feel tired and stressed just as the student in an overgrown babygrow asked me for a donation. I told him no thank you, we choose a charity at the start of the year and give to them, he rattled his box and said it's a worthy cause. I replied no thank you again, to which he said any coppers will do. It just got to me the noise the people the hill that I'd never previously felt so the response was 'which bit of no do you not understand?' I know he was trying his best and he'd probably been there a while and was fed up with it all but it riled me and the fact it riled me riled me even more. If I hadn't been with the girls I don't know where the meeting of minds would have led.

It was disappointing for me because it showed how close to knackered I am. I'm learning, even when my head feels good think several times about doing anything physical. I've had a fantastic week with a little blip just to remind me of where I've come from. Next week is next week and that's where I'm going so that's what I'm focussing on. The future. Loving the now and am looking forward to the tomorrow.

Thursday, October 21, 2010

All quiet on the 'Weston' front!

It's been a quiet week on the medical front. Well except for the tube up the nose treatment I had on Friday last week, they were looking for bugs and so the best place is the back of the nose in a cavity which I was unaware of! Not the nicest thing to have done, a tube up your nose which then taps at the back of the cavity when it's in far enough! They have suction on and a little catchment bottle into which the bogies and snot gather! Unfortunately they didn't get enough out of my right nostril so into the left they went, amazing how much your eyes can water...........

Monday was a bit of an event, I walked to school to pick up the girls with Wend. It was weird and amazing at the same time, seeing the teachers and the kids and how things have changed since my last visit.

Tuesday was a bigger event, parents evening. I made the effort to walk up again and I was so glad I did. It was hard work on my part as Georgia's class is now on the top floor of the school, something that in the past would have been a quick jog was now like Everest, slow and steady was the way and I made it without my heart pounding out of my chest too much.

Meeting Georgie's teacher was an absolute pleasure, her work has improved no end. Georgia not the teacher..... The feedback the teacher gave was great, she tries hard and is always polite and will work with anyone in the class. Her levels, that they measure children by, were little miss average but to me it's the way she works and how she interacts with the rest of the class that is more important the a tick in a box.

Carys' teacher is newly qualified and lovely but she looks knackered at the end of her first half term. I remember the feeling well, counting down the days and the hours until you can have a lay in or a proper night out, just to recharge the batteries before the next onslaught. Carys' report was great, her levels were great and her work was amazing considering her years. She also got praise for the way she worked within the class and how she interacts with the other kids.

So there we are proud as punch, our kids have got great reports from their teachers and given the year they've had it's an amazing testament to them and to Wend. We wandered across the yard and had a chat with one of the assistant head teachers. We thanked them for their help and support and praised the teachers and Georgia's in particular, she has experience of cancer in her family and has been a great support to George. The assistant head said that they were happy to help and people wanted to help the girls because they're such good kids and they're polite and lovely to work with! This is when the heart pounds and the pride inside grows.

I have praised kids at school for good lessons and they throw it back at you by being rubbish the next time. Our kids are different they get the truth about everything. My memory isn't good enough to lie anyway! So we praised them, we told them the truth we hugged them and thanked them and loved them. I also told Wendy that I have the utmost admiration for her, she's incredible and she still doesn't know how incredible she is. She's kept life real for the girls and kept routine and normality as much as possible.

The next day I crashed, I was grumpy, distant and generally irritable. I was short with the girls and distant with Wend. I had nothing left, I thought I was doing well but the truth was that I couldn't cover up my emotions. Wendy's honesty gave me a much needed kick up the bum though, it's hard hearing home truths but they needed saying. I needed it, as I can paint a very black picture when I'm tired. I have to be careful, I have to listen to my body but I almost have to pre-empt being tired. So today was a very chilled out relaxed kind of day. I'm still tired but I have to remember how much I've been through and how far I've come. Progress is being made but it's slower than I want it to be, patience grasshopper.........

Monday, October 11, 2010

Think, just think

If I worked on the average time to stay in isolation then I'd be coming out of hospital tomorrow. This is the fact I have to remember, I've had 8 extra days of freedom and I have to keep that in mind when I'm feeling fed up.

I was fed up on Friday as my blood counts had dropped to levels which started to cause concern. We had been warned that this may happen and I'd also started on another medication which can have the side effect of dropping my blood counts. None of these known facts prepared me for the disappointment that was printed on the piece of paper in front of me. There were columns of numbers and some had stars by them, these were the problem areas, a bit like getting a poor mark at school. I felt like I'd failed, I'd let people down, I'd let myself down. There was nothing I could do about it other than stop the medication, take it easy and rest my body and wait to see if there was an improvement by Monday.

Today is Monday and my bloods have recovered, they're better, they're up to a level that they would expect and that is safe for me to live a bit more of a normal life. Well, normal as in staying awake all day and maybe walking up stairs without the room spinning or being completely out of breath. I also mentioned that my resting heart rate was a great deal higher than I'd expect it to be. When we started on the road that is cancer my resting heart rate was 60 beats per minute. Granted I was riding to work and running and being generally very active and now I'm amazingly inactive. Plus I've had bucket loads of chemicals pumped into my body and that's going have an effect.

But and it's a big but, I forget that I've been inactive for so long, I forget that I've had six months of treatment. Weeks and weeks of time in hospital months of sitting on the sofa and an incredible amount of drugs, thank goodness for National Insurance!

I also have to remember and I was reminded vividly today, that there's always someone worse off than you. Because of my fragile immune system we go straight to the teenage unit so that I'm not exposed to too many coughs and colds of the general waiting area. The teenage unit is a humbling place, young people who've had short lives living through a massive challenge. One young lady was talking with a visitor, without being rude it was difficult not to overhear. The radio therapy she was receiving had damaged her throat and she was struggling to eat. She'd been rushed in because of the damage and it would mean a stay in over the weekend, the weekend of her birthday. A night down town had been planned and her mates were looking forward to all the festivities. All this information was shared with the visitor, a visitor of another patient. But the amazing thing was how mature she was offering advice on how to cope with the weird situation of patient-visitor relationships, thoughts on life and relationships outside of the hospital and life in general. It was a very selfless conversation on her part, perhaps it was a relief to talk about something other than her illness. I don't know but I hope she gets better before the weekend.

Like I've said before Weston park is one of those weird places where you see all walks of life going through an incredible experience. Incredibly hard physically and emotionally. I'm tired and fed up of it now I want my life back. But I have to think how much I've gone through, how much my family and friends have gone through and how far I have come. Think about taking it one hour at a time and getting better at a speed that suits my body. It's going to take time and patience but I have to think of the future.

Wednesday, October 6, 2010

I'm home.

Monday morning and it's doctors round time. Sunday had been ok my bloods had come back as being better than expected and so they'd said I'd be allowed out of the room and to the lift atrium. Walking to the nurses station was far enough, laying in a bed for the last three weeks or so has messed with my muscles and they've lost ability, I won't say definition as that's not really what my temple is like!

The blood count is what matters at this stage, whether I have a certain number of platelets or white blood cells. The doctors decided that as my bloods were good enough I could go home. It was as quick as that, from being allowed out of the isolation room to be allowed home in the matter of hours. My head was spinning, the emotions were so mixed, the safety of the hospital and the isolation but the joy of going home. The risks associated with coming home are minimal but the benefits way outweigh them.

The emotional support that watching my girls screaming down the path to hug me and sitting on the sofa being held down by the dog is magic. Watching Wendy sorting everything out is hard though. I'm on a serious case of rest, so I'm meant to be waited on hand and foot, the only thing I'm allowed to do is wipe my a*se. Wouldn't wish that on anyone though!

Nutritionally it's a world apart being home, the food is damn fine, it's tasty and made with love. My mouth is much better than it has been, it doesn't hurt now but there's still a distinct lack of saliva which makes bread and dry products a real no no. Imagine eating loads of cream crackers without drinking anything, that's what it's like from the first mouth full. So it's juicy food from here on in for a while, Wend makes a fab risotto and boy did that hit the spot, my stomach has shrunk which may be a blessing in disguise but doesn't help when you have a lovely dish of food in front of you!

So today we went for a check up, bloods taken and a private waiting room so we're not exposed to the great unwashed! After the usual wait we went down for the consultation.

First question from the consultant wasn't how are you or any problems? Nope it was, so we did have any chemo therapy then? It threw me for a second or two but then the blood results came out of the file. Not only have I been one of the quickest to be sent home but my platelets were the highest at this point of treatment than anyone's ever had before. Usually they expect a count of 20 by day 20 and 50 by day 50. Today my platelet count was 138! How or why I have no idea but it was.

So the next two weeks it's rest and recuperation, another check up on Friday and then all being well weekly check up's. Then it's get better, get fit and get on with my life. I'm scared that something will go wrong but I'm not going to dwell on it, too much. This is the risky bit, while my bloods are still weak (comparatively) I have to be careful of not catching a cold or getting an infection of any sort as it could make the last three weeks of life a little pointless! Oh well we see what the next few weeks bring and how my body recovers.

Saturday, October 2, 2010

It's been f*cking hardwork

Apologies for not posting before but it's been a bit up and down the last couple of weeks. Well a lot of down and lots of little heart shaped highs but mostly down.

They said this was high dose treatment and boy oh boy they weren't kidding. I can't put into words how it's felt as I have nothing to compare it with, it's so much worse than man flu it's just not funny. But when you're out of breath having walked to the toilet and showering means taking a nap after (there's a lot to shower but that's not the point!) to recover it's pants. Walking like a really old person shuffling my feet along didn't bring joy to Wendy's heart either.

I have no idea what I would have done without her unbelievable support. The love hearts are such an amazing thing to do, to have the idea and then go round people and ask for their thoughts or comments. But then she brought them a little at a time, not all at once just a few everyday and it's just been the highlight of my life. The things people have written are giving me an emotional strength that I didn't know existed. They've prompted some good outbursts of tears, cheers Jase you really know how to make a grown man cry!

It's been hardest for those few lucky enough to be visiting, Wendy, mum and dad. They have seen me at my lowest they have seen the days when I have slept and slept and slept. They have seen the blood drain from my face and the injections and the bags of chemicals going into someone they love. Which are there to kill off the most basic thing a human needs after food and water, their immune system. I'm lucky as ever because the nursing staff are looking after me, the doctors are trying to keep me alive and give me more life than no treatment would bring and if I sleep then I sleep and no one interrupts that except for injections or blood letting or observations.

I have had a good couple of days yesterday and today, I've actually drunk some fluids. Prior to this weekend my mouth was sore like the back of beyond. Most people know of the sensation when they've had a couple too many the night before and it feels like a budgerigar has moved in over night, well this little blighter had razor blades on the bottom of his feet. Not good, my mouth wouldn't open fully, speech was slow and slurred and it hurt like fucking hell. Sorry for the language but it did. The only people going near my mouth were the ones who could prescribe the good drugs, cocaine mouthwash was underwhelming as it happens!

My tummy has been a bit upset by the lack of foods, mind you it was very upset by the food it started out on, lets just say trumping has been a bit of a lottery..........I'll leave that for you to decipher.

The best day for me was Thursday. Wendy's birthday, although it would have been better waking up next to her in our bed in our house, it was fabulous seeing her dressed up to go out for lunch and I managed to time being a bit brighter with her visit. I just want to take the hurt from her heart and the girls hearts too, tie it to a rocket and launch it into space. Anyway she had a nice time and looked beautiful and the girls did a fabulous job of getting some surprises sorted for her, I'm so proud of them.

I don't want to make light of the last couple of weeks as I feel better today because it's been the worst couple of weeks of my life. But out of the worst weeks have come the best emotions, the most support the most admiration for human kind. The hearts have been a talking point for staff and myself and they've been a constant support when I wake in the middle of the night and I start to wonder. I read and I wonder no more.

Sunday, September 26, 2010

Hearts

Hello it's Wend here, Nick has asked me to post a little update. Basically he had his stem cell transplant last Wednesday. He has been pretty poorly ever since. He is managing to sleep lots, and we are trying to take it a day at a time. He is an inspiration to me with his courage and determination, and it breaks my heart every day to see him suffer. But he retains his unique sense of humor you'll be pleased to know!

The main things he has asked me to pass on are apologies if he does not reply to text messages. But mostly thanks for the messages of love and support he has received. Below is a picture of some of the hearts he has received in his room. Please keep your messages coming they give him so much strength. You can either sent them to me at home or to Nick Hart, Ward P4, Royal Hallamshire Hospital. Thank you. x

Friday, September 24, 2010

Ick

Ok so things are kicking in and my tummy is rubbish. Crap night being sick 'til there was no more! Will try to get blog up to date. Use the time wisely!

Sunday, September 19, 2010

Hotel Hallamshire

Ok so I'm here in my room with a stunning view. I can see Houndkirk moor and Holmesfield and Porter Clough from my window.

I can also see a whole load of love and best wishes. Wendy had gone round friends and family and the neighbours and given out love hearts so they could write a little comment on for me to read. It's such a brilliant idea as they're now on my wall in my room and they get read everyday bringing me hope and happiness.

A couple of them have quotes which I think are brill, the first is Dr Seuss the second I'm not sure but it made me sob the first time I read it and it still sits there to remind me how lucky I am.

"I have heard there are troubles of more than one kind,
Some come from ahead and some from behind.
But I've bought a big bat. I'm all ready you see.
Now my troubles are going to have trouble with me."

"In a world of misunderstanding,
tell you one thing I know.
It's a rich rich man,
who has a hand to hold."

By that I'm a very rich man.

Tuesday, September 14, 2010

Being alive is BRILLIANT

It's been an excellent couple of weeks, except for having a bit of a cold, not man flu I assure you!

It has been emotional because in the back of all our minds is the coming stint in hospital which is a massive unknown. I'm sure my body can cope, it's been through so much but it's still going, which is nice. Whether my head gets through the coming weeks is a bigger question, yes I have to stay positive and not give up, I don't like giving up. But there are going to be days when my emotions get the better of me and I just want to get out and get my life back.

That's the brilliant bit, we've had a bit of a glimpse as to how our life was and how it could be again. I've eaten curry and drunk beer with my dear friends. I've driven the car again, not far but it's been nice doing a bit. I've done a little DIY (amazing for a technology teacher and the shelf is still up 3 days later!). We've been to the park as a family and I pushed my kids on the swings. I've made Wendy breakfast in bed, I was knackered for the rest of the day but the pancakes were pretty good, even if I do say so myself! I've even thought about engineering problems and teaching and a future. A future where I'm not holding the sofa down, one where we're travelling round Scotland on a motorbike, where we're packing the car up to go on holiday, one where I'm running and biking again and feeling fit.

Anyhow that's all in the future. For now I concentrate on getting through the next few weeks and not forgetting to write Wendy's birthday card........

Next year Wend's birthday is going to be great, not sure what I'm going to do for it but it needs to be special.

Being alive is brilliant, yes sometimes it hurts when you stub your toe or Carys looks into your soul and says "I'm just so worried about you." But being alive means I'm here to have those sensations and to feel the wind on your face and to be there for Carys to hold her and try to reassure her. To tickle Georgia til she falls off the sofa and to to hold Wendy while we watch a film on tv.

I'm aiming to be alive for a while longer an I have to keep that in mind when my emotions get the better of me. Keep those feelings surrounding my heart to protect it to keep it safe from the demons that my head and hospital food conjure up.

I have amazing friends and family and it's them that will have the hardest time coming up. I send my love to you all and thank you for your support so far. I need you now as you need each other.

Monday, September 6, 2010

....... to down and then back up

Then results day.

The usual waiting and waiting ensued, we chatted and people watched and waited. Then it was us, we have stopped second guessing results as it's too hard emotionally. Having said that I was feeling very relaxed after the good week I'd had.

So the results. The chemo is continuing to have an effect, the lump is now 64mm x 56mm down from 75mm x something else! This is great news, it means that we can go for the high dose chemo and the stem cell transplant now.

Then came the talk about the high dose chemo which scared the pants off me. It really gave me an awful feeling, being in hospital for a minimum of 3 weeks with a minimum of 2 weeks in isolation with restricted visiting, no kids. Maybe 6 weeks in hospital. With possible risk of viral infection, fungal infection or infection from my bodies own bugs. Possibly 6 to 12 months before my immune system is back to normal. Infections can turn from an infection to death in a matter of days, so any little tickle etc is taken really seriously.

This was the time my sense of humour left. I felt like the colour drained out of me and my smile disappeared again.

Now as I write this my smile is back but it's strained at times. I'm knackered and I'm bloody scared. I don't want to be away from my family again and I certainly don't want to be ill.

But and it's a big but they haven't told me to measure up for a box and they're doing all this to me to give me more life so I take it on the chin and get through it. I'm sure my body can do it I need to convince my head it's a good idea though!

Down to back up.........

The rest of the week was an existence for me, I didn't want to swing from manically happy to manically sad so I tried to stay in the middle. I managed some success with that but I was almost too successful.

As we sat in bed drinking tea Wend asked how 'How did we get here? When we have nothing to say to each other?' I volunteered that it hadn't been a normal summer and that as we're together so much during the day we have few new topics of conversation. Wend asked where my smile had gone, why didn't I laugh anymore.

Then it happened, it all came out in a massive sob. All the negative thoughts and feelings I have, I hate being stabbed everyday for an injection to thin my blood, I hate going to the toilet as it hurts like bloody hell sometimes, I hate going to the hospital, I'm scared of what's next, I hate seeing the hurt in Wend's eyes when she looks at this ill baldy bloke lay next her, I hate feeling shit, I hate that the kids walk past me and go to Wend for an opinion on something, I hate being knackered after walking up stairs, I want to travel, I want to work, I want to be intimate with my wife, I hate having tubes sticking out of my chest, I hate that the bloody clips on the tubes (obviously designed by a bloke) have sharp corners which stick in my nipples when I move or am asleep, I want to ride my bike, I want to plan, I want a motorbike, I want my life back. I want my f*cking life back.

Any how my sobs didn't go unheard and all of a sudden there was a pile of crying Harts on the bed. I apologised to George as I am hard on her but I expect too much sometimes and I see how similar she is to me and I want to give her the shortcuts that took me so long to learn. We held each other like only a family who feels can, that tight desperate clinging that would hurt but the pain our hearts feel over rides it.

It seemed to be a very therapeutic crying session though because as the day went on my mood lifted, why I don't know but it did. It felt like a weight had been lifted, I didn't keep all the feelings in on purpose I just didn't want to voice them.

Bank Holiday Monday was going to be a joint party for little Lola, (my sister, Viv's second) and for George which Viv had very kindly organised. Unfortunately the snot fairy had been to Viv's house and delivered streaming candles and bogey bubbles to the kids. Definitely a no go zone for me. The girls had been wanting to go out on their bikes for ages now and so we called on the dynamic duo of ma n pa to see if they'd take us somewhere suitable.

Rother Valley country park is an old open cast pit on the outskirts of Sheffield, technically Rotherham, which although it doesn't sound attractive is a brilliant place to visit. Since the coal lot pulled out they flooded it and made it into part nature reserve and part watersports venue. They've landscaped it and over the years it's matured into a really nice place to go, so off we went!

Dad and I drank coffee and watched the dinghy's and the kayaks playing in the sun and Wend and mum took the girls round the main boating lake. It was heavenly, watching the world go by, the clacking of ropes on masts and the lapping of the water on the pontoon. A real change and a real lift.

That week was to be a great week, mostly. The CT scan on Tuesday required no nasty drink and no cannular and as a result it took five minutes instead of the usual hour and five. I felt great afterwards so got on the bus and went to meet mum in town. Feeling great I thought I'd look for a new telly, I'd seen one with 300 pounds knocked off so I thought I'd spend the money that people have collected for me from work (truly amazing and so touching it made me cry, shocking!). Walked in, the shop had one that had been delivered and then returned as the customer hadn't understood what they were buying, so the shop took it back and knocked a further 70 quid off it! Done, bought it, gone digital. I didn't want to go digital but we have done and now we have 99 channels of repeats and dross!

Saturday, August 28, 2010

Daddy, daddy, daddy

The cheerful shouts from Carys five days earlier were now being repeated but the tone was different. It was a panicked, tearful shout from the little one as I got in the car to travel home. I felt sick, sick to the stomach, regret as I had to leave to come home for more treatment. No it wasn't my fault but it still felt like it as we drove up the coast.

Jase was driving half way and then dad was picking me up for the second half of hairy bloke relay! I wasn't the most conversational of passengers which must have been hard for Jase as we passed through the stunning countryside up the coast and then into the mountains. I'd eased up by then and although not my usual verbal self the time passed quickly and all of a sudden we were handing over and travelling back into England.

Starting chemo always feels strange, regardless of the stage, but this was different. It felt like groundhog day, it felt like hard work, even though all I was doing was sitting there having drugs pumped into me same as before it was hard. Thankfully I was on the ward again and sharing with someone I'd met before, it's weird but nice in a strange way having someone familiar there. There are conversations that can carry on and you have a new conversation topic, progress. If there is any progress or what they plan to do next, sometimes it's good news other times it's not so good but it's still news to share and that's a new conversation to have.

The stay on the ward went, Mark came up, mum and dad visited regularly and I spoke to Wendy and the girls daily. The food stayed the same, still good quality but the same, my appetite dropped off and my legs and arms swelled up. Liquid retention is a big problem with some chemo treatments, but then they are pumping a great deal of liquid into a body which is struggling to cope. To counteract this retention a water tablet is one possible solution, to be taken with water! Now I'd had no prior reason to take a water tablet and so it's effects would be something new. So I thought, taking it in the evening was a real pain as it starting working pretty much straight away. The first night I was up six times passing up to a litre each time. By the morning I was shattered and two kilo's lighter! But still it worked, up and down up and down jug in hand. Pee, measure, record, drink, measure, record, pee, measure, record repeat until tired and then repeat some more. Like I say groundhog day.

The highlight was the return of the girls, brown and happy they swung into an empty ward room as everyone else had gone home. No bad thing as there was a cantankerous old racist and an ex army chef who seemed to have a word or fifteen to say about everyone or everything.

Coming home was as usual a tonic, our bed, our bathroom, Wendy's cooking. Just heavenly after what had been my hardest stay in Weston park. It turned out to be my lowest week at home since starting out on, furball 2 return of the lump!

Last years wedding anniversary hadn't been much to write home about, it was lovely and we'd been for a meal but it was just after treatment and it was a short evening. I think we even talked about this years being better!

Well I got it wrong, I didn't buy a card and I didn't buy a present. Wrong, wrong wrong on so many levels wrong. I used to be romantic buying flowers and things, sending cards and even doing a mix tape at one point (for younger readers a tape is something that used to store music maybe 90 minutes at a time!). But I'd lost myself in the bubble that was my self pitying head. I wrote Wend a message but I didn't even know if it made sense, I read it and re-read it but I felt like I was hallucinating while I was reading it so anything could have been there.

It was one of those days, it wasn't the day I wanted it to be and it wasn't the happiest of days but I was at home and that meant something. It just wasn't how either of us wanted it to be, we decided that next year we'll spend our anniversary in Paris. It gives us a year to save and for me to get well.....

Thursday, August 26, 2010

A great day

What birthday?

Beautiful birthday girl.
Morning after boy.....
A busy Pembrokeshire beach!
Surfs up duuuuuude.
Just happy to be there.
Cake number 2!
Cake number 3!!

I'll let the pictures do the talking on this one. Just to say it was an amazing day with family and friends on a beautiful beach. No the cake numbering isn't wrong it's just there's been plenty of cake over the summer!

Aber Station


Nowt more to say!

Tuesday, August 17, 2010

The missing present

So the journey was on, 6.10am taxi to Sheffield station, 6.50am train to Birmingham New Street, 8.50am ish train to Aberystwyth and then pick up in Bill's car to Boncath.

I haven't chosen to get up at 5am for a very very long time and it was a somewhat rude awakening but the goal would be worth it. The journey was great, it's a while since I have been far and watching the world wizz past the window was great. It also allowed me to see some of the beautiful countryside that I usually miss as I'm driving down to Wales. Mountains and fields and estuaries filled with various forms of wildlife, from the lowly (worried looking) sheep of the hills and valleys to the herons and little egrets of the rivers and estuaries. Stunning.

Wendy's dad, Bill, was to meet us at Aber station with the girls who were still in the dark about us coming down. They'd been told that they had to do an errand for Uncle Jase and that there was a steam train at Aberystwyth station that they could go and see. I waited on the train as an overexcited Wendy stepped onto the platform expecting to see them but they weren't there so I got off before hoards of people trampled me as they boarded the train. As it happened Bill was only a few minutes away and as Wendy saw his car pull in she charged down the station at top speed causing the station master to hold the train he thought she was late for! I stayed on the platform with the bags and waited.

After the hugs and kisses in the car park Wendy told George that she'd left a present on the platform for her and they had to go back and get it. The girls ran on the platform and were looking for a present, as they ran George looked at me and then looked away, then she did the same again. On the third time she looked I stuck my tongue out at her and smiled. It was such a shout, DADDY, then I heard Carys behind shouting the same daddy daddy daddy. I opened my arms and held my girls tight and we sobbed. The release of emotions flooded over me and I didn't care about anything, just holding those precious little people in my arms was everything at that moment.

We had a great journey down, a bit of traffic and one fool passing in stupid places but other than that it was a car full of excited chatter and laughter. The feeling of relaxation drifting through me as I sat there watching the world go by listening to the girls and their stories and feeling so incredibly lucky.

The luck continued later that day. After a meeting of oncologists and radiologists it had been decided that the areas on my lung which the day before were a cause of concern were NOT a cause for concern. Yes they'd keep their eyes on the areas and monitor them but the decision had been made to carry on with the treatment as it had been planned. The bearer of this news was Debbie the nurse specialist on the other end of the phone. Thank goodness for mobile phones!

It's difficult to convey how it feels when you get good news. This one phone call meant that the lump is responding to treatment. Full stop. No but's and no uncertainties. It was Wendy's face that summed it up for me, it was a mixture of disbelief and happiness and disbelief and happiness and relief and the look of someone having a weight lifted from their shoulders. To me it felt good. As the cancer adverts go on the telly, "today was a good day."

Friday, August 13, 2010

Harvesting and mixed results

Ok so the idea of being harvested was a little weird for me to get my head round. More the process than the actuall principle, always one for the mechanics of a situation I wasn't keen on my blood leaving my body........

Any way the morning blood count was excellent, they look for a count of above 10 with something they call CD34, well my count was 285! This meant that the GCSF injections I've been having and the bone pain that was a side effect had been worth it. The GCSF stimulates the bone marrow to produce more stem cells than t needs and therefore they then pass throught he bones and into the blood stream, hence the pains!

After a very quick breakfast and a strange taxi ride to the Hallamshire it was into the extremely busy lift to ride to level O. As normal in Sheffield someone sparked a general conversation into the crowded lift, "smells like cabbage for lunch then" and as normal when I'm nervous I had to respond "oh sorry that was me........" fortunately some people found it funny! As the display changed to O the lift juddered and then dropped to N! got the blood pumping I can tell you, not sure if that was planned but the flipping thing then went all the way down to the bottom again!

The process of harvesting was simple, painless and quite boring. The machine is coupled up to the now clear hickman line and draws blood one way, it then spins the blood in a glorified salal spinner, then it's mixed with an anti-coagulant and pumped back into me. When it's being spun the different parts seperate as they are of a different weight. This allows them to collect the stem cells as they're the heaviest and get flung to the outside ready for collection. Simple really! The only sensation I had was from the anti-coagulant as it affects the calcium levels and gives a tingling feeling in the face and then if left the rest of the body. This is counteracted by, in my case approxiamately 2 pints of milk and a fizzy calcium tablet! Three and a half hours later and it was done, they'd also collected a bag of plasma along with the stem cells to help with storage so looking at the bags I felt a little drained, fine but drained.

So having returned to the ward I was free to return home only to return the next day for the results of the CT scan. Mixed was the best way to describe them.

The stem cell harvest was a success, for it to be successful they need a count of 2.5, well they harvested 22.75 from me! Linda, my consultant had asked them to double check as they're not used to such high numbers! Ooh get me the stem cell king!

The main lump in my chest has responded well to treatment and they're pleased with that.

They've found two really small anomolies in my lung.

Bugger. Lymphoma on the lung is not the results I wanted. I have become able to turn off the expectant part of my brain when it come sto results day, too many roller coaster rides. I go with the attitude it'll be what it is and we go from there, either I'm just tired of it all or it's a self preservation technique. They're only small, 8mm and 10mm but they're there none the less. This meant a change of chemo regime and a more toxic set of drugs.

Oh and go to Wales! Linda was well aware that it's Georgias birthday this weekend and that a large hairy bloke being in hospital on his eldest daughters birthday wouldn't be good for morale and mental health. With this latest news about the lung thing she felt it worth while me having a bit of a break and going to Wales with Wend. I had initial reservations as it meant travelling away from the safety net that is Weston Park. But how could I refuse the offer? I couldn't, the thought of being with all my girls and the hound was too much, the tickets were booked as was the taxi and big Nick was on his way to Welsh Wales with his beautiful and extremely giddy wife.

Wednesday, August 11, 2010

In and out and back in then back out

Ok so the heart had taken a bit of beating but the head was feeling great, I was tired, well probably knackered is a better description! Then the pain started, it just felt like my nephew Jacob had tackled me and was sat on my chest. (Jacob's 17 but 6 foot three or so and a great rugby player) My breathing was strained and moving from one position to another was bloody painful. It felt like my rib cage was being crushed and I couldn't do anything about it.

The sensible thing to do was ring Weston Park and see what they say but I was loathed to do it, I'd only just come home and it was only Tuesday afternoon and I'd arranged with mum to take Wendy and me to a little cafe in the peaks. I could almost taste the millionaires shortbread as we drove to Weston!

The thing with turning up unexpected at Weston is the nurses and the rest of the staff all ask "what are you doing here?" they all care and they take an interest in all their patients. So as we walked along the ward Wend and mum looked at each other as though the favourite naughty student had just turned up again!

I had another bed on a ward in the corner next to the loo, not the best place but makes my midnight wanderings shorter! I was monitored and prodded and listened to and monitored some more. I just wanted to be at home with Wendy just chilling out and relaxing before I had to have another CT scan on Thursday. This scan would tell us which way we were going with my treatment plan and how the cancer was responding or if it was responding. This was the last thing my emotions could cope with and it was with silent tears that I opened a book Wendy had bought me and I lost myself in someone else's adventure.

Guy Greave had been just another bloke working in just another cube farm in Scotland when he decided to go and live in Alaska int he woods and build himself a log cabin and survive the winter alone. It was a gripping read and really well written, when I was a boy I remember a book in which a boy goes off to the woods and builds himself a cabin. Since then I've always wanted to build one, the book showed the boy digging a foundation and filling it with stones, cutting the logs and then laying a floor of bracken. He did it all alone. Guy Greave ended up getting help from locals and using their knowledge, tools and even dogs. It was how he succeeded, the local knowledge was invaluable and it led to amazing friendships. The only fly in the ointment of the book was he left his wife and kids, not permanently but for a year. Through choice, his own free choice. He wrote of how hard it was and I believe him but I still don't understand, leaving for such a period of time for something which could easily have killed him. Oh well it's a great book and it got me through a difficult couple of days.
I had already got an appoinmtent for the CT scan booked for the Thursday and as much as I wanted to go home the pain hadn't gone fully, so it was decided I stay in Wednesday night and then go home after my scan. All being well!
It was the first time I've looked forward to a scan, waiting in the waiting room it was also the first time the scanning staff had been late. Having asked at reception a member of staff came round and told me I should have been waiting somewhere else, even though for the prior six appointments I'd waited in the same place as today! Oh well, I'm only itching to get home.....
A couple of days at home and then it was back in Sunday night so they could asses my blood's suitability for harvesting stem cells at 6am Monday morning. Fun fun fun. To be honest other than being nervous about the harvest it was the easiest visit to Weston I've had. The only problem was being away from Wend for another night but as there were to be no surprises or chemo then I thought it'd be easy peasy lemon squeezy!
And we all know what thought did..........Blood taken, results back and all systems go. Over to the Hallamshire and get hooked up to the machine which will remove my blood, not all at once, seperate off the stem cells and then give the blood back to me. Simple, well it would have been if my hickman line worked as it should! It turns out that my body in it's infinite wisdom had recognised the line as a foreign body and was trying to block the end of it with what could be described as a clot. This clot was acting as a valve allowing liquid in to my body but then covering the tube and stopping liquid going out, not going to leak to death then!
So back to Weston park having not done the harvest, annoyed and worried that the line is faulty or in the worst case scenario it'd have to be removed and replaced. Wendy was resigned to another night home alone and I had to get used to another night of Weston food. It's good but nowhere near as good as Wendy's. They used the hospital equivalent of drain cleaner to clear the blockage, four hours after pumping it down my line they drew it back, it kind of looked like they'd cleared a bloody drain too. Lumpy and full of part dissolved clot within inches of my nose as they drew it through, lovely, but at least it was working. Result.

An Angel, an Owl and another blog

It was one of those moments, you know, when you've wanted something so much and there it is. With her sun bleached hair and her nicely tanned skin Wendy was an absolute picture when she arrived on the ward. My heart jumped and my head relaxed, she was home my angel was home. It was a better pick me up than any chemically derived product could ever be.

I didn't care that I was still on chemo, or that I was on a ward bored out of my tree Wendy was back and I could do anything now. We talked about her journey and about the girls and how hard it had been for her to leave them in Wales and come back to me. Emotionally she was torn between us and I can understand that. She looked so well and relaxed and happy after her trip, it was kind of how I'd imagined her trip to be, a break from me and the formalities of hospital and visiting times.

Wendy also told me of the girls blog, Twirly Girlies summer adventure is a little blog to record their holiday for me to watch and it's been brilliant seeing them on the beach and eating pizza's and generally enjoying themselves. It even recorded Carys losing another front tooth and yes the Welsh tooth fairy turned up!

Sunday brought more joy and laughter. I came home from treatment in the morning and the feeling of relief was almost overwhelming, just being in our home and being together with Wend was a return to the normality I crave. The afternoon brought the arrival of the Owl, Charlie is one of my best friends, my business partner, riding mate and curry eating companion. Some of which are more difficult now he's moved to New Zealand! Skype is brilliant and has allowed us to talk all the way through his time there but it's not the same and man hugs are not as fulfilling when they're done in a virtual world!

He was on a flying visit to Sheffield having been at his mum and dad's for his dad's 70th he was then flying over to Sweden to get married to his beautiful Swedish fiancee Veronica. It was mixed emotions as we had booked the flight and were going to be there, me as one of the best men, on the island watching two very loved up people getting married. Just not to be.

Charlie (on the left) and Veronica

The visit brought Mark and Jill out of their cosy little home for an evening of banter and curry and beer and wii dancing. I have video evidence and I apologise for some of the language, if easily offended please don't press play!


Mark and Jill set of Monday to catch the ferry and then travel up to the wedding, most of it on their trusty Triumph and the rest car sharing with a half Swedish half Scottish couple! I'm sure there are tales to tell from that trip!

Charlie stayed until Tuesday morning and that was an incredibly painful goodbye. Our friendship is one of those that picks straight up from the moment we meet, there's never any awkward moments and it had been a magic couple of days. Drinking coffee and eating biscuits and generally putting the world to rights as we used to do. Saying goodbye, well I dissolved into an emotional mess so probably didn't even say it, was so difficult. He's back in November so I need to get my a*se in gear and get sorted for then!

Mark and Charlie are my best friends and the love I have for them makes them more like brothers that I never had but without the negatives. I'm a lucky lucky man.

Saturday, August 7, 2010

Tuesday turn off my head and hold my heart

Tuesday morning came and with it the knowledge that my ladies were going for a holiday and I was going for more drugs.

Wendy and the girls were going to the wonderful world of Wales, Wend for a week and the girls for much of the summer holidays, oh and Bertie too! I wanted Wendy to have a break from me and hospital visits and the girls needed to have a proper holiday and time away from the stress of visits and appointments and me not being capable of driving them places or playing with them.

Some people have said it's selfless of me but they have lives too and I want them to live them. I would be in hospital for at least six days and when I'm there I'm looked after and fed and hey what more can you want!

So as with all aspects of our life we'd planned how the departure would work, Dad was coming over to take Wendy and the girls to Brian and Eve's outside of Shrewsbury from where Anita would pick them up. Brian and Eve are just two of the nicest people you could meet and put on a lovely meal for everyone and put up with Bertie being a bit bonkers! Thank you.

Mum came over at the same time to take me up to Weston park so that we all left the house at the same time and there was maximum distraction for everyone. It worked to a point, it hurt like someone ripping part of me off seeing my ladies crying and looking back at me in the car waving. It was the last time I'd hold Wendy for a week and it felt like the better part of me had gone, I felt incomplete, something instantly missing. But I had a job to do so my logical head kicked in, as it sometimes does and it was off to Weston for me and my broken body.

Using the Hickman line was so easy it all became clear why I'd had it fitted. The nursing staff took the covers off the lines and then once they had flushed through using a saline solution they hooked me up to a drip and away it goes, treatment in one easy and hygienic step.

So this is what it'll be like for the next 6 or 7 days? drip in arms free from cannulars, no sensation of the drug going in except for the injection of anti hystemene which almost instantly sends me to sleep. Mum stayed with me for some of the first set of treatment, it's an awkward time for both patient and visitor as depending on how the treatment goes has a great bearing on the conversation! Mum as always was great though, spending a bit of time with me then going and coming back later as I went up to ward three.

Next to the window is superb, my bed for the week, in a room with three other blokes. Much better than the side rooms where all my demons came to rest and my head span from wall to wall. Being in a room with other does mean you get disturbed, snoring and farting and general life noises at night but also there's four drip pumps going all the time and when they are empty or have a problem they bing bong. I still hear it now I'm home bing bonging in my head as I fall asleep. Then there's the unavoidable fact that sometimes someone is a great deal more ill than you are. Yes it made me feel lucky last time I was in but this time all I could feel was the families pain and suffering as they were told the worst news. But then I saw humility and love, the true kind the kind that doesn't have any strings attached just the tenderest kiss on the head of someone suffering so badly. The kiss of a wife who knows her husband is not long for the world. The son holding his dad's hands and wiping his eyes and trying to smile as family gather to offer support and possibly say their own goodbyes.

Selfishly I thought of my ladies and how I hope that they never have to go through that. I don't want to die, I have too much to live for but I don't want Wendy or the girls to suffer the sadness. Nor do I want mum and dad to lose a son, nor Viv a brother and so the list goes on. I don't want to cause pain and suffering, I've worked hard in my life to live causing as little pain as possible believe it or not. I'm not perfect, never been perfect and don't ever want to be but I don't want to put people through it now or ever. Not going to live for ever either but when I'm old and cantankerous it'll be easier for people to say goodbye.

Wow that got a bit deep, for me anyway! To lighten the mood and the mental load I had plenty of visits from friends and family even Jill came to see me and last time she visited a friend she ended up on his bed, not like that! Just because she'd fainted and slid down the wall so I felt honoured. I also had my phone which I could text of talk to Wendy with which was good but not the real thing.

I spoke to the girls every day and although it was incredibly hard to say goodbye every time it was a little lift hearing that they'd been to the beach or that Bertie was misbehaving or that they were having a great time in the garden. Yes they got upset now and again but there's nothing wrong with emotion and I never want to stop them sharing them, that wouldn't be fair. Wendy sounded great, like she was having a bit of time and a bit of fun, she has put so much into supporting me that I wanted her to have some me time, swimming in the sea with the girls and playing and being a fabulous mum.

The week went ok treatment wise, I saw my consultant and we talked about our dogs! My head blew a couple of times but there was no big sobbing this time which was easier for the nursing staff. My knees and face swelled up, possibly due to the amount of liquid going in and less coming out. Measuring wee became part of my daily routine, every time I went I took my jug and recorded the passing. I set a new record too 1150ml's in one go, which I was chuffed about apart from the fact that the jug only holds a litre! I don't get out much so things like this become interesting to me! Why my bladder seemed to work overtime at night I have no idea, when I was awake I may go four times but one night I went six times between 11pm and 6am, great!

Slowly slowly the week managed to drag itself along and then even more slowly it turned from Friday and me saying I'll see you tomorrow, into Saturday with the selfish prospect of Wendy coming home. I didn't sleep much that night, regardless of my bladders idiosyncrasy every fibre of my beaten up and swollen up body was aching for the return of my beautiful wife.

Tuesday, August 3, 2010

Sorry

It's been a while since my last update and it's not been through lack of wanting to download my head but because my head has been so full of rubbish.

The sorry actually relates to a member of secretarial staff who cocked up an appointment. Not just a chat appointment either it was for me to have my Hickman line fitted, a permanent line that goes from my shoulder into my chest near my heart in one of the veins. This allows medical staff to draw blood or insert medication easily and without using a cannular.

I was stressed about this, mega stressed actually and the fact that the hospital managed to get the dates wrong for me having the insertion just added to it. It's a good job Wendy had come with me as the stress and my dwindling resource of patience had led to a black mood that I was struggling to climb out of. As it happened the hospital sorted it, they found someone to do the insertion, a lot later than planned but on the same day and the procedure went well. The Hickman line is a stiff plastic tube that is inserted into a vein in the neck guided by ultra sound, uncomfortable and scary as the tube pushes on the outside of your throat as it finds it's way down the vein. They then make a pocket just in front of the collar bone under the skin using another hard piece of tubing, apparently easy on old ladies as their skin is less well attached than mine was! Once they have the pocket they push through from the shoulder to the neck using a stiff plastic rod, as this popped out of my neck I could see it in the corner of my eye waggling about. So the easy but painful bit comes then, attach the tube in the neck to the stiff plastic rod and pull it through. Easy because as a process it is simple, painful because as they are pulling the stiff plastic tube through the skin has to stretch for it to bend and travel under the skin to the shoulder. Not the most comfortable thing I've ever had done by a long chalk!

I'm glad I've had it done though as my veins in my arms are increasingly knackered from all the treatment and even seasoned stabbers are struggling to find veins for blood taking. It's also meant that the chemo treatment just gets connected to these tubes sticking out of my shoulder (I have thought about putting a photo on but I don't want to upset delicate constitutions out there!), once connected the chemicals just plod their way on in through the tube and my arms are free from cannulars.

Anyhow as I was waiting in recovery with Wendy a member of the secretarial staff came through and apologised for the mistake admitting it was her fault. That was it black mood gone, just a wave of gratitude sank through me, this woman had had the integrity to come and hold her hands up and say sorry. It was a big thing to do, we're all brilliant at complaining or putting our point forward but there are not many people who can say sorry. A simple little word that meant so much to me.

So that was Monday, Tuesday brought tears and heartache and drugs galore!