Tuesday, September 29, 2009
Like the title says. Just got back from the hospital and have been told I'll be having no more chemo. There was some shrinkage but not a significant amount and therefore they don't think anything would be gained by giving me any more.
Plan now is to have a PET scan in a couple of weeks which will show whether the mass that is left in my chest is alive or dead. If dead then congratulations buy a lucky dip you can get on with your life, if alive then zap the furball with radio therapy until it's dead.
I feel like sleeping for a week now, just exhausted. I'm sure my emotions will get the better of me at some inopportune moment but hey that's just me.
We're not out of the woods yet but we're going in the right direction. Best go and wrap Wendy's birthday presents.
Carys pointing out the obvious, in her loudest voice.
Happy Birthday mum.
The girls returned, happy and healthy from their trip to Wales and the house sang again with love, laughter and happiness. It felt real again, being alive, surrounded by so much life.
Other than more injections and another course of antibiotics for a small throat infection the last three weeks only have three noticeable points. Another CT scan with another barium based drink, didn't taste any better than last time and the results come back today. It's one of the reasons for this post being a bit staccato, the results determine whether I have more chemo or go down the radio-therapy route, so I'm a little anxious.
The second high point was going into school. I had a day feeling really well, you know normal, so the next day when I felt great again I went in to Winterhill (where I work). I have a had so much support from people there that I wanted to see some of them and just say thank you. Along with Wendy and the girls returning from Wales the next big emotion was the girls and my friends and colleagues going back to school. It was a reminder that however I felt, I was still ill and I have a long way to go. Sometimes you get so see the people you want to but the first hurdle was I didn't want to get out of the car. I wasn't scared but I was nervous, nervous of how people would react to me, whether I'd scare any kids (not always a bad thing) and whether I'd be emotionally strong enough.
I needn't have worried, I had a lovely welcome from everyone I saw, the kids and the staff. I saw people who send me text's every now and again just to see how I'm doing. People who ring me up and just chat (cheers Dennis), people who post on here sometimes and people who write me letters. I brought one woman to tears, not the first time I might add, but in a good way (she assures me). I had smiles and waves off kids and plenty of hugs from staff. Although it made me nervous about germs and the like the physical contact and the emotional support that a hug gives far outweighed any worries. I had a good chat with the boss, about this that and the other and I was made to feel welcome. Which sometimes when I look at photos of myself I'm surprised that people look past me now and see the me that they knew.
The other high is that it's Wendy's birthday tomorrow so we had a day out to Chatsworth. Sotheby's have a load of sculptures there at the moment and we took a picnic and met mum and dad there for a glorious few hours walking round. I took the low route with dad as I was tired but the girls went off exploring and found more of the installations. It was a glorious time and the high point for me was the ample couple, just a very clever piece of casting. Then in the evening Wendy and I went to Artisan at Crosspool. Mum and dad had the kids overnight which was superb, even so we were home for 9 to watch the Strictly come dancing we'd taped earlier! I felt quite adventurous (I don't as a rule like fish) so started with scallops on pork belly and then had baked cod on a crab risotto for mains. They were both delicious and the head waiter was brilliant in advising about what may be less safe for me to eat, so thank you to them.
Right going to get some lunch now and then go and find out the results of the scan. To be honest I have no idea what I want the results to say, other than they're growing back (that'd be bad). More chemo means less scar tissue possibly, but more likelihood of a baggy heart, to go with my baggy belly. No more chemo means more scar tissue staying in me and the possible start of radio-therapy. Who knows. Go with the flow.
Friday, September 25, 2009
Firstly an apology, I've not posted anything for a while and the simple reason is I've not understood how to write this post. So sorry for not posting and sorry if this doesn't flow very well.
After my stint in hospital and then the worst chemo I've had I was pretty shattered, just tired of the process, of the drugs, the feeling pants, looking like a warmed over turd and being tired and a bit ratty all the time.
Our anniversary was wonderful, a glimmer of normality in a starless night, it was the start of up. Cancer for me and everyone who knows me is a roller coaster full of ups downs and round and round. The problem is it's like the old coaster at Alton Towers which ran in the dark, you have no idea which way is next.
The day after our anniversary meal dad took the girls and Wend to Shrewsbury station (I'll explain in a minute) and I stayed at home waiting for the district nurse to come and give me a blood boosting injection. Wendy and the girls were going to Anita's for a well deserved holiday and a bit of normality. The idea behind Shrewsbury (say shrew not shrow) was it's kind of half way and it was a whole lot cheaper than going all the way. Also changing trains in Birmingham new street with two small children and a case which she could probably fit it was not Wendy's idea of fun! Mine either.
I was hoping to go with them in the car to the station but I knew it'd be an emotional farewell, the nurse coming to give me an injection was a cowards way out of the public show of emotion. So I did it on the street instead! I knew they'd have a great time, playing with the dog and the cousins and going to the beach and just having a change of scenery would be so important for them all, especially for Wend.
Wendy is an incredible human being, not big in stature but massive in heart and determination. It is her that has picked me up so many times when I have fallen, mentally and physically. It's her that gives me the strength to carry on, to be me.
I was a weird teenager, I was known as Roger Hart's son or Viv Hart's brother. Now the reference to dad is fair but to be known throughout secondary school by your younger sisters brother was frustrating. Whether it was because I loved the infernal combustion engine more than football or I didn't wear the right clothes or what I have no idea but I wasn't a happy person at school. Leaving school gave me new friends but I still hung around with the old crowd which did nothing for my development.
Years passed and I saw the friends for what they were, not friends at all but a group of people who would never change. They'd drink in the same pub, live in the same area, support the same teams and their kids would do the same. So the cycle continues.
I didn't know what I wanted but I knew I didn't want the same as them. So by accident more than design I went looking for something different. I found a different group of people, who turned out to be the same but with different labels and different faces but the same blinkered outlook on life. It was fun for a while but kind of empty, getting drunk, going home (alone) and then doing the same thing the next night.
Then Wend came along, a true breath of fresh air, a young lady who'd grown up in the country and had moved to Sheffield to follow her dream of being a paediatric nurse. She was adaptable, determined and downright stubborn at times. I knew I'd met my future, two months after meeting I asked her to marry me, I don't think anyone expected it but I didn't care. If I let this person go I knew that I'd regret it for the rest of my life.
Yes we've had good days and bad and we've said the odd cross word to each other but it's because I love her. I love the way that we end up laughing at inappropriate things, the way that she's so honest, how stubborn she can be (especially with water fights, just don't. I did warn you!), how when it's cold she disappears into one of my jumpers and curls up on the sofa with a cup of tea. So many reasons, yet she is the one person that sees the real me all the time. The me that is hurting, that is tired to the point of exhausted, that shouts at his kids for no reason other than I can't think of what words to use to explain what I really mean, the one who has such bad farts they wake him up in the middle of the night (I blame the anti-biotics Wend would probably say different). You know she see the warts and she still loves me. She's amazing.
And for a week she's in Wales.
I spent a couple of nights at mum and dad's being looked after which was lovely. I spent an afternoon and evening round at Mark and Jills which was great just talking bikes and stuff and having my tea cooked for me. All the while the injections carried on and I spoke to the girls and Wend every day, sometimes twice or more.
I coped, I found that my head went into a weird coping mode. I had little emotion that week, I had a good cry one night when I missed everyone but other than that I found I was preoccupied with the Injections. They were to boost my white blood cells, which they did, a side effect which I'd got myself wound up about was bone pain. Mmmm bone pain, must be good if the mention it in the leaflet, I wonder when that'll kick in, if at all.
2:30am OH MY G*D, what the f***ing hell is going on....move, come on fatty move. Movement made the pain go a little, so I moved. All over the bed, upside down, crouching, stretching, bending, hanging over one side then hanging over two, stood up, squatting. Walking helped a bit more so around and around the bedroom I went. Went to the loo, difficult to get it all in the toilet when your pelvis feels like it's being crushed with metal clamp. Bend down to clean up, oh that's so not a good position to be in, I hope I don't bang my head and get stuck like this. Ooh you little F****r, must read the side effects, miss the bottom stair and jar my back, great. Read, come on eyes focus, right bone pain may be treated with normal pain killers. Right then pain killers it is, I can't believe they'll do much but I have nothing else to try. 2 paracetamol, not touching it, 2 brufen, 20 minutes later and I was asleep, not soundly but I was comfortable, ish.
Wednesday, September 9, 2009
The weekend came and went, I was in a better mood by the Sunday, still pretty wiped out but in a better frame of mind.
Monday our Viv had her second baby by ceasarian, baby Lola came into the world happy and healthy and with a full head of hair. Dave (my brother in law) was in attendance for as much as he was allowed to be and then the electronic notification started whizzing around the world. As much as I wanted to go with Wend and the girls to visit I was scared of going out and on a purely selfish basis I wanted to save myself for that night.
You see Tuesday was our wedding anniversary. Nine years, a tip for singletons reading this, get married in a year which is memorable and easy to do the maths, we got married in 2000 which makes life for a simpleton like me much easier! In those nine years there have been births and deaths, job changes, redundancies, retraining, working away, arguments, laughter and a whole load of love.
I met Wendy through a blind date arranged by a wonderful friend. Gwyn was my boss at the time and had suddenly exclaimed one day that she knew the perfect woman for me, not bad considering we'd only worked together for a couple of months and then it was only a 12 hour shift on Saturdays! To say I was sceptical was an understatement, I'd never been particularly lucky in finding the right person, I guess I wasn't actually sure of what or who I was looking for. As blind dates go it was interesting to say the least. We went out as a group from work and although Gwyn had described Wendy to me I'd never seen a picture so when the person Gwyn described walked into the pub I nearly walked out. She was, well, er, putting it politely, not my type, possibly not anyones type! I'm sure she was a nice enough person but not my cup of tea.
I was wondering where Gwyn was as I thought they'd have come together but there was no sign and then they walked in. Now that was more like it, not the tallest person in the world but everything in the right place and cetainly not hard on the eyes, even before the beer goggles had kicked in.
We had a pub crawl which coincided with another groups pub crawl. I ended up being a bit of a tart and dancing with a woman from the other group in Roxy's. Gwyn came up to me and told me I was going to lose Wend if I carried on carrying on. Something in my beer drenched mind decided to stop the dancing and go and find Wendy. She was at the bar buying me a drink, not too bad I thought, but then she explained that she was only buying it for me as I'd bought her one earlier and she didn't want to owe me anything!
We got talking and talking and talking and talking. Until about half four in the morning on Gwyn's sofa in the middle of the manor estate in Sheffield. Yes it was just talking. As the beer was wearing off I realised the time and called a taxi, I had to be at work (for Gwyneth) in an hour and a half. B*gger!
For the next two weeks I had no contact with Wend as she'd gone home to Wales and Gwyn wouldn't give me her number. I thought that I'd been in love before but those two weeks made me realise that I hadn't. Nothing felt like the yearning I felt, I just wanted to see her, see if she was real, see if she liked me just to be with her again.
I proposed after two months and although my dad had to come down off the ceiling and Wendy's dad thought I was gay, we both finished our courses before getting married and we've been together ever since.
To say that we've some stories would be an understatement, we've had good times and bad but we've been honest with each other and that along with our love and a fair amount of laughter has pulled us through.
The love that I felt all those years ago that convinced me to share my life with someone else has just grown and my admiration for the blonde bombshell I married has multiplied many times over. When we started courting I wanted to wrap Wend up in cotton wool and protect her from everything. I soon found out that Wend is not one to hold back with her thoughts and she didn't want wrapping up. It's this strength that she has that has pulled us through so much. She is so dedicated as a parent and so strong as a wife that I thank Gwyn every day for introducing us. (In my mind, I think she'd get fed up with all the phone calls).
We'd booked Mum to baby sit, cheers mum, so off we trotted into Sheffield for a pint and a curry. Well it ended up being a couple of halves of strawberry beer at Platillo's in Leopold Square and then a superb curry at Aagrah, underneath Platillo's. I remember many years ago driving past a curry house with an elephant outside, turns out this was one of the first of the Aagrah chain of restaurants. We had a fabulous meal and I managed two thirds of my pint before it all got a bit much. Steadily we reached the tram and made it home, twenty past seven, dirty stop outs we are! The girls were still up and it was still light and I guess it was the shortest baby sitting in history but I was done.
I'd had a fabulous time with my stunning wife, it was the night I wanted but given the circumstances it was a darn site better than it might have been.
Thank you Gwyn.
Thursday, September 3, 2009
Sunday came and went, the old boys on the ward were a good laugh the banter floed freely and my spirits rose although my energy levels were still in my boots.
Wendy and the girls came to visit as did mum and dad, as the person being visited it's lovely to see these people and obviously seeing Wend and the girls is magic but it's also hard. It reminds you of what you're missing and of a place you'd rather be, that's not to say I didn't want visitors it was just where my head was.
I was confident that I'd be going home that evening, how wrong could you be. Three day's later I was leaving, it had taken that long to get my blood well enough for me to fight infections as and when they came along. The neutropenic situation basically means that part of my white blood cells, the neutrofil, were at a critically low level. This meant fighting something as simple as a common cold could have become life threatening! That'd be rubbish wouldn't it, at the funeral, "well he beat cancer but a cold got him!"
I came out of hospital feeling lucky, two of the guy's on the ward had terminal lung cancer, a woman I got chatting to had two tumors removed from her brain but they'd come back and so it went on. As far as I can see I have a damn good chance of beating this and getting back to being as normal as I ever am, so I'm lucky.
I should have been having chemo the next day but they didn't think I'd be up to it so it got put back to Friday. I rested and rested and rested and waited for my next dose of poison. Chemo is one of those things you go through, you exist through it, my existence on that friday was pitiful. I hadn't got much left energy wise or emotionally and it showed. Usually I can chat to the nurses or other patients but this time I chatted a little and buried myself in my magazines and books. A friend, unlucky Steve (long story) who had visited me while in hospital, had leant me the second of Lance Armstrong's books. Both are worth a read even if you don't like cycling they're well written and show humour and humility along with the desire to win at everything be it cycling or cancer he wants to win everything he does. Every now and again a line of the book would provoke the odd tear, it'd be a shared experience. Some famous bloke in Texas with some big bloke in Sheffield, sharing fears, highs lows sentiments, a love of bikes through the pages of a book. The second book talks about being a survivor and how hard it is, how getting the balance of living life like you've been giving a second chance but also being the person you were before cancer. It's fascinating from a people watching point of view but scary from where I was.
I sobbed, behind my hands, in an empty room. Watching the drugs go in and feeling like they were doing me harm not good, got me. It got me so that I couldn't think clearly, I hurt, my head hurt from all the thoughts and my chest hurt from sobbing. Sally was brilliant, there were only two nurses left on as I was the only patient and she just sat and listened and gave me a hug and was just a sympathetic human being. I guess it's part of the job but it's not something you can train for.
My drugs finished and mum and dad arrived to take me home. I think i've looked rubbish after chemo before but not as bad as that, it ended up with my crying, Kaz (the other nurse) crying and Sally wiping her eyes. I gave them both a hug and thanked them, the staff at Weston Park do an amazing job and do it in such a way that you never feel foolish or pitied just cared for.
The only thing I wanted that night was a chip butty with curry sauce and my family. Food first as I had an inkling that my lousy mood was partly fueled by a lack of food and then hopefully I'd feel better when I was with my family.
I don't remember much about that weekend, I can't imagine I was much fun to be around. I wasn't crying as much but I didn't have much to give anyone, the combination of steroids, oral anti biotics and a fresh dose of chemo probably proved to be quite a cocktail for my body to take.
I apologise for not having posted over the last couple of weeks but it's been a little bit busy in the world of Nick.
Having the girls home was fab, made the house sound right again, laughter and song and just general busy-ness. The focus would be Geogia's birthday, eight, where the flipping heck did the time go? Now it's awkward having a birthday in August when you're school age, all the people you want to invite end up going on holiday so parties aren't particularly overcrowded!
George loves pizza and so, as it was her party, pizza it would be. But not any old pizza, homemade pizza dough and homemade pizza sauce and toppings designed by George. Wendy made the dough and the sauce (complete with hidden vegetables for my benefit) and George did the toppings. It's safe to say come my birthday I'd like Wend to make more pizza's, they were fantastic and there was only a couple of pieces left over for lunch the next day.
I made it through the family party on the Friday, I'd felt better but I just put it down to being tired and having done too much.
Saturday came and George was going bowling with her friends that were not holidaying, Carys and us. That soon turned into just Wendy taking the girls down to the bowling and mum and Wend's friend Shelley meeting them there. I was in pieces, Georgie had a friend staying and what she must have thought of this big bloke sobbing into a pillow I don't know. Carys being Carys just asked straight out 'Why's daddy crying?'. I had nothing left, no energy, my get up and go had effed off!
By the evening I'd got worse and my temperature finally hit the 37.5 degree mark that constitutes a phone call, whatever time of day or night, to Weston Park. We both knew what was going to happen so Wendy phoned Mark and I got my overnight bag together, well I picked it up, as Wendy keeps it pretty sorted for times likes this.
You know you're bad when one of your best mates picks you up, looks at you and says "Yep you look shit". Not one for mincing his words Mark says it as he sees it and it's one of the reasons I love him as a friend, you know exactly where you are with him. He stayed with me for the best part of two hours while they tooks some observations and got me to swab for MRSA (one up the nose, one round the groin). It was a support that I didn't know I needed but it kept me together for the time being.
Being admitted was no hardship, I knew in my head and my heart it was the best place to be. Being jabbed several times for blood samples is also par for the course. Being woken up at half one in the morning by a very nice but very quietly spoken doctor and being told you're neutropenic was weird. Now I'm not the best at being woken up and being woken up by someone other than Wendy or mum puts me into an automatic who, what, where spin which was only stopped by the very patient sister. She was great, considering she'd stopped me spinning she allowed me to come round a bit before she put a cannular into my arm for the litre of saline and the intravenous anti-biotics that I had been prescribed.
Sleeping in hospital on a ward is weird as I have mentioned before. You have to get used to four other blokes snoring, farting, belching and the noise of sleeping on a plastic coated mattress always takes soem getting used to. Add to that a drip in your arm which you really don't want to lay on or pull out and it makes for a less than restful night. Having said that the old boys on the ward did tell me of a previous patient who woke them up one night shouting and screaming, they awoke to find this bloke knelt on the floor with his head under a chair bum in the air with no pyjama bottoms on............