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

video

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!

video

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!