Pride

Today was aspirations day at the girls school. With the help of a very clever and creative nanny they were a chef and an RSPCA officer. This is what makes me proud, they have ideas and thoughts of their own, neither wanted to be a pop star or a footballer or a footballers wife (heaven forbid). They spent time thinking about it, well George did Carys was pretty set on being a chef from the time it was mentioned and is a wonderful little helper int he kitchen cutting and mixing and adding love to cake recipes.

I love our girls and they make me proud. Money can't buy happiness like that.

Summats happening

Well the hair has started to go anyway. Just started this morning which is good seeing as I had a hair cut the other day! When they asked what I wanted and I said it was all going to fall out anyhow they got the picture. Some people would have left it but my shearer had had a recent scare herself and so we went through all her emotions and how she was quitting smoking and how being positive was the key to all this blah blah blah.

You know sometimes when you want to talk and others when you just want to be silent. I didn't have much option in not talking but I wanted my head to be left alone with it's own thoughts. Oh well it's only three quid for a hair cut there so I wasn't expecting much but hey it got rid of the late 80's bouffant which which sprouting out of the top of my head and going very curly in the process.

I've had a reasonable week all things considered, I'm tired and I get tired easily but I'm able to do bits and have driven the car a couple of times. The sensation of driving is just so freeing, I no longer have the sofa attached to my backside nor do I have the four walls of the house sitting there just watching me, none of this dramatic closing in stuff they're not falling down or anything!

I'm maudling a bit though and getting wrapped up in my body's inability to do what my head wants it to. I don't feel like a very good anything unless you count holding the sofa down. I have to get stuff done and I need to plan my days a little better. I have people to write to and paper work to sort out and and and. But I have an attention span of a year 11 boy, so I need to get my head out of the clouds and into doing stuff.

Anyhow this morning brought good news. After an ECG at the Hallamshire the person doing the scan told us that all the liquid had gone from around my heart. It wasn't unexpected news but it was great news nonetheless, my heart has felt ok for a while now but to have confirmation that all is well is great and it really does mean summats happening.

So one worry down, another to go.......

Naivety got me through last time.

So I'm going with it this time too. When you have an incredible health service as we do they build up a booklet fetish. These booklets are produced by well meaning professionals in order that the patient has time and information and all the answers they want about their own particular procedure or situation. Unfortunately being a bloke I don't read instruction manuals until I'm stuck or have bits left over at the end!

Part of me is also a massive hypochondriac who if I've heard of a symptom will suffer it or will at least think I'm suffering it! So I'm going to stay blind to many of the symptoms and situations and experience them for me for the first time and then probably write about it on here to get it out of my busy head. Naive, yes. Best way of doing it, not sure but as I haven't done this before it's all a bit of a stumble in the dark.

My head is busy with things like the girls going to Wales for the summer. They'll have a fab time with love and laughter and a fair amount of ice cream thrown in. Anita and Jason's place is a home from home for them and is a wonderful house for kids to be in, loads of fun and noise and space to run around in. I'm going to miss them like I can't describe but I can't think about that, they have to keep living and being in Sheffield visiting me looking probably not very well isn't my idea of a fun summer for them. Wendy will have time in Wales and then come back here, again being here if I'm in isolation is going to be less than fun for her. Yes I always feel better when she's in sight, anything is possible while I can be with her and the worries fade away holding her hand but I want her to live too and living doesn't have to be rubbish it should have a balance.

Physically at the moment I don't feel too bad, my skin is a bit of a mess, bit like some of the kids I teach but not too bad. My guts are suffering as is Wendy's nose. I'm noted for being able to clear a room but this is ridiculous! I'm tired too but hey there's a fair amount of rubbish in my body dancing about trying to kill stuff so I have to bear that in mind when the urge to get on my bike starts over riding the lethargy in my legs. When you have been relatively fit and active the need to move can be frustrating to say the very least. My appetite is good and although I'm still on steroids I'm trying not to eat too much as I don't want to fit the fat jeans I ended up in last time. I'm having incredible cravings for Chinese/Thai/Indian food though and went to sleep dreaming about East One in Sheffield and the kedgeree that Wagamama do.

The worst thing for me at the moment is the worry that the treatment isn't doing anything. I can't see inside me, I have no sensation of the lump, I have no reference point to which I could measure any progress. So I sit, I surf the web and watch terrible telly and I wonder. I wonder about what the furball is doing and I hope that it's having a damn good kicking from the bags and bags of drugs they put into me. I wonder if I could reach in and pull the little furball out because to be honest I'd love it out of me now, I'm bored and fed up of being host to chemical warfare.

Any way winge over, we had great news yesterday. Jason's dad has been told he's in remission and has been given the all clear. It's news that cheers the soul to hear that someone has been through it, survived the treatment and is going to make a recovery is brilliant.

Put the kettle on it's a long one.

'Return to Weston Park please'.

It's how a trip to Weston starts really, catch the bus up and go for a scan and then catch the bus home. Oh how little I knew then!

Going for a CT scan is part of the process and I even managed the majority of the contrast drink this time, not that it's any nicer just I managed it. Sitting there in the waiting room I felt ok, just waiting for the scan, not worried about the results. I don't think I was thinking about the results just being there was enough for my head.

The scanning process is easy, lay down and enjoy the ride, they tell you to hold your breath at certain points but other than that you're in a slightly surreal world of high technology and slightly old pub style paintings.

Then you wait, you wait with the other people for your cannulars out, to make sure you don't have a turn or start bleeding or something. My cannular came out and I didn't bleed or have a funny turn but I didn't get told to leave. In fact a nice lady came to talk to me!

It turns out they'd found something on my scan, not a huge surprise, but they'd like me to wait for someone to come and see me. Debbie turned up, she's the lymphoma nurse specialist and a point of contact all the way through this saga.

'Come on you're coming to ward 3 with me.' Not the response I expected but who am I to refuse. The surprise was that I'd got a bed, not particularly the target I'd wanted!

Ok so they'd found two things on the scan, the tumour has returned but also, as a brucey bonus I have a pericardial effusion! Now having a limited medical knowledge I kind of worked out it was something to do with my heart but the explanation is much easier really! Everyone's heart sits in a sack of tissue to protect it from rubbing on other organs and the ribs, it just so happens that mine had a large quantity of liquid in it which shouldn't be there.

Now it is probably and most likely that this liquid is a side effect of the lymphoma being back but all the same it meant my heart was doing aquarobics! So it had to beat faster and harder to keep me a live, poor little b*gger. So there's a lot going on in the left side of my chest, there's this liquid which shouldn't be there and the lymphoma is twice the size it was. Hence me having a bed in hospital.

The only way to find out how much liquid was around my heart was to do an ultrasound scan which meant a ride in an ambulance to the Hallamashire hospital which is only five minutes round the corner but they wanted the ambulance to take me and who am I to argue. As fascinating as an ultrasound is and it's weird seeing your own heart beating away on the screen the over riding memory is just how cold the gel is that they put on the sensor. I remember Wendy saying about it when we went to see the girls during pregnancy and I just thought she was being nesh, she wasn't it's flipping cold.

The lady at the Hallamshire concluded that although there was a reasonable amount of liquid there it wasn't a massive worry and they'd see me again in a couple of weeks. So then we waited, the nurse from the Weston and I, and we waited and waited and waited and waited for a medi car to take us back round to the Weston Park and ward 3. Why it took so long I have no idea but we chatted and talked about all sorts of things, education and religion and life in general. We made it back eventually and although I could have walked it I'm glad in hindsight that I didn't.

All this time Wendy has been running around trying to sort out an overnight bag and get to the Weston as I was going to the Hallamshire and mum and dad came up to the Weston too to get some of the information that would be relevant for my next round of chemo. All through this the girls were at school expecting to see me home that night, maybe poorly but at least at home.

Tuesday night was uneventful other than watching people on the ward coming and going and listening to other men sleep, not high on my list of to do's but life's like that.

Wednesday morning was not a massive amount of fun. Debbie came up with Linda my consultant and gave me a very quick break down of where are. Basically, and it is very basically, the lymphoma is back so that has to be treated with more chemo therapy, this will be more intrusive than last time. The chemo they start me on will last for two sessions (6days in hospital and two weeks off if I behave) then they'll scan me. If the scan is good then they can look at working with my stem cells and harvesting them and then putting some back. If the scan isn't favourable then maybe two more of the chemo I've just started or maybe a different even more invasive one. Then they said the word you don't want, palliative, I have too much to live for to think that the next option is looking after me til I die. I know we all go some time but I have things I want to do and see and experience and I want to watch my kids grow and go places with Wendy and work hard and run and ride my bike and and and and.

Bridges, to be crossed when you get there.

They are treating me as though I can be treated so at the moment it's as good as it'll get!

After this brief meeting and my breakfast I settled down to tv and the papers and the general life of a student. This is when my heart started working hard, maybe the breakfast was too much, but I didn't have the full English...... I mentioned it to the registrar who after a couple of minutes decided that I wasn't staying at Weston but I was to be blue lighted across to the Northern General to the the cardiac care unit where they could possibly drain the the liquid from around my heart.

As the ambulance staff arrived one asked where we were going so asked for Filey for an ice cream......but Northern General it was, being in the back of an ambulance is like being in a really sparse caravan which goes round corners just as badly. It's not exciting nor is it to be recommended.

Northern General is massive, it's a huge place with miles of corridors so when I saw the back or a beautiful woman looking a little confused it was lovely to be able to call Wend from the trolley. The ambulance staff knew where they we going but Wendy didn't and it was wonderful to see her. Especially as she'd been just about to set off to Weston park when she got the call to say I wouldn't be there!

The cardiac care unit is as the name suggests for cardiac patients and feels very clinical because of this. The staff though were lovely and funny and had no qualms about the number of sticky pads they put on my chest to measure and monitor me. I have no idea how women go through the whole waxing thing as these little pads hurt like merry hell when they had to come off.

From being wired for sound it was all a bit of a blur, another ultrasound scan which according to the guy doing it showed between 500 and 700 mls of liquid around my heart so there was no wonder it was working hard. From there on I was nil by mouth, possibly a least favourite term of mine! It means two things, no food or drink but it also means the possibility of a surgical procedure. To be honest the lack of food or drink is my main concern but hey old habits die hard.

They eventually had a slot for me that afternoon and off to the theatre I went. The drain would be put in under local aneasthetic using the ultrasound to guide the hand of the surgeon. All around me in this very impressive operating theatre were staff of varying rank but it was clear that none of them were there for the fun of it they were there incase they were needed. Well they raised me up and then they tipped me this way and then they tipped me that way and then someone else came in and all the while they're putting more and more of the super cold gel on me man boobs.

In the end they decided that the risk outweighed the benefits! They seemed to want about 2cm of gap to get the drain in, I had at best 1cm in a less than ideal position. 1cm is a good cough really, cough and oops I'm in the heart sorry sir! So they left it. from my point of view it felt like the right decision, you know when you have a feeling about something going right or going wrong, I know where my money would have been that afternoon.

So back up to the cardiac care unit and Wend, Michelle and dad. Shelley works at the Northern and like the great friend she is had come over as soon as she'd heard. Dad had come up as it's what great dad's do. Their faces were a mixture of relief and worry at the lack of procedure, possibly so was mine!

The decision was made to wire me for sound for the next 48 hours and see what happened with my heart, my resting pulse had come down a little but was still around 115 beats per minute which for an athlete like myself, ho ho ho, is ridiculous. (It was 71beats per minute yesterday morning so the drugs are doing something).

Technology is amazing, not only can I sit in my homer dint wirelessly connected to the internet but they could wirelessly connect me to the monitors which allowed me the freedom to go to the loo without asking which was great. The slight draw back was getting the pack to talk to the base station, for whatever reason nurse number one couldn't figure it out so called nurse number two, both blokes I hasten to add. Nurse number two checked the connectors, the battery and then dropped the unit in my lap to check the base station. Now not being one to complain but when someone drops a small brick in the family jewels it tend to provoke a reaction. That was the highlight of my stay! Nothing more interesting to add, 48 hours being observed morning, noon and night.

Another ultra sound with yet more really cold gel started Friday morning off, bit of a shock but again the consultant was happy with his decision and said that once transport could be arranged it was back to Weston for me. It was with mixed feelings that this came as it meant one thing was finished but to me it was the bit I dread the most the chemo. I've never liked drugs, I've never smoked a splif I smoked possibly 3 cigarellos in a Clint Eastwood phase but I have a healthy hatred of drugs. Now they're going to start pumping them into me in order to save my life which feels very strange.

I was given a side room which I thought was a bonus at the time but back fired on me a little. As the ambulance staff wheeled me through the ward it was lunchtime and the fish on the trolley looked superb. This coming from a person who doesn't like fish, bloody hell though it was fabulous, crispy and tasty and just wonderful. That was Friday, from there until yesterday has been a mixture of swapping bags of drugs, cannulars, two at a time don't you know so that they can put one lot of drugs in one side and more in the other.

There are problems with cannulars though, they can be uncomfortable and they can move so when my arm blew up like a small tree trunk the other night they switched arms which gave me an opportunity to swap my t-shirt which had been behaving like something possessed. Reassuringly the nurse said it better to do the swap with the drugs going in rather than the next bag as the next bag if spilled would cause us serious skin burns! Great serious skin burns but pump it on in!

Wendy gave me a wipe down the other day which was wonderful and above and beyond the call of duty. You don't realise sometimes how lucky you are until the world turns to cr*p. Yes my medical situation is cr*p at the moment but I am so lucky to have such wonderful friends and such an incredible family and to have found Wendy, later in life than I wanted but I found her anyway (well Gwyneth did), is just breathtaking.

The treatment has gone for now, I'm home. I had a lovely soak in the bath and have slept in my own bed. I need to get my bowels moving and keep moving myself so that I don't end up some steroid addled couch potato. I probably have more coursing through my veins than the whole of the Tour de France!

Anyway the brain has gone, I've just had a daily injection to help my white blood cells and wendy has put some soup on. Thank you to everyone who has visited and texted and written and made me feel very very loved. Last week was spectacularly sh*t and my head has been in pieces, the nursing staff have helped and slowly I'm getting round the one step at a time scenario. But it's when you come home and your wife and kids beam at you as though you're the last piece of pizza or a returning warrior that you really feel where your strength is at. Rational head says bring it on, emotional head says oh my god I'm scared but together with Wend we can do this.

On a boring note, please can we ask that between 5 and 8 is quiet family time and we'll ring after that.

So we start again.

All the will in the world all the crossed fingers and legs and anything else that can be crossed didn't stop the consultation going the wrong way.

I was hoping for bird flu or even man flu. What we got was a 99.999999 percent probability of the lymphoma being back. The blood test which I had a week ago showed enough abnormalities to lend weight to the argument of it being back. Unfortunately with the other symptoms including the fluid on or around one of my lungs kinds of seals the deal.

The emotional result of this is the ar*e has fallen out of our world again. We told the girls which in all honesty was the hardest thing I have ever done in my life. We told them when we were told I was in remission that it had gone to sleep so telling them it's woken up should be easy. But their faces contorted with pain and worry and tears and anger and pure pure emotion was too much and it was confirmation, if needed, that we were back in the fight.

Telling people is rubbish, they answer their phones and are happy to hear your voice and then you give them the news. Their voices sink and you can hear them thinking of what to say, of which there is very little they can say. Then you leave that person holding that piece of news and you go and give the news to someone else, in a way it's the old 'a problem shared' but it's not really it's just cr*p.

One of the hardest was a skype call to New Zealand to tell Charlie and Veronica that we won't be at their wedding. I knew they'd understand but I wanted to be at their wedding we'd booked the flights and everything, even bought a Swedish phrase book as the wedding will be in Veronica's homeland, complicated yes but worth doing for people you love.

I phoned Jase (brother in law) as he can sometimes be a mushroom in the chain of information passing (kept in the dark and fed poo). His response was like many others, sorrow that it had returned and a wish that I get through this. We agreed to talk more that evening. What I didn't realise was that he and Anita pretty much dropped everything and came up to give us a hug.

I'm so lucky, it sounds very backwards and maybe I am but I'm so lucky to have so many people wishing us well and wanting to help and do stuff and praying for us and worrying for us. Perhaps I would never have realised all this without the journey that is cancer but I realise it now and it feels brilliant to have this amazing group of people that we can ring or see.

The person that I feel for the most is Wend, once again she has the prospect of looking after the girls and maybe me and a dog now. She has the worries of a wife looking at the person she loves going through treatment. And there's not a f*cking thing I can do about it. Sorry about the language but it's not fair, she worked so hard last year keeping everything together and kicking me when I needed it or loving me or just holding or stroking my hairless head. She deserves a medal for the way that she kept the girls lives as normal as she did, she deserves another one encrusted with diamonds for putting up with me. She doesn't deserve another round of uncertainty and worry. It's just not fair on her, she's so amazing I don't want her suffering because of me. Wendy I love you.

testing testing 123

Ok so the elbow thing is better, having spoken to a physio terrorist at a wedding and being told to sleep on my back the pain has completely gone in my left arm.

Unfortunately I now have a pain in my chest, I wake up with night sweats, I've lost a load more weight (just on the 16 stone marker ish), I have temperatures in the day, my breathing is ok depending on how I'm positioned, I have a severe lack of energy, my tastes have changed again and I don't like things like brown bread and pasta which I lived off before cancer, oh and I'm drinking like a fish but not weeing anything like enough. Maybe that's what the sweats are for!

So putting them all together and having been told I looked less that sparkling by some of my colleagues, they did ply me with coffee and chocolate though which was lovely, and Wendy saying you look peaky prompted a trip to the gp.

The gp didn't look in my throat or examine me just said well we'll take a blood test and get you back in in a week. I suggested that as once you're in at Weston park you're in, that I just phone them up. He was delighted!

So that's where Wendy and I have been today, Weston Park. I managed to get to see Georgia do her obstacle course for her sports day but then had to dash.

To cut a long story, well I could make it long, short I'll give the abridged version.

Waited, for a long time, got seen. Consultant wants blood tests doing and ct scans. If it were one or two of the symptoms above she'd put it down to side effects, which it may still be. It may also be a virus and lord knows there's plenty of them going round at school with the snotty little oiks. That's just the teachers! It may be something more sinister. Who knows, not us.

So we're back on the roller coaster that is cancer, I want normal not roller coaster. But having said that I feel less angry than I did which is odd. Ho hum I'm sure some shrink will figure it out.

In search of me.

Before cancer I felt on top of the world. my job was going well, my fitness was the best it had ever been including being a kid and my work life balance felt amazing. Wendy and I had time together, we had time with and without the kids and I had some time just being me.

I felt like I was chilled, that anything could come my way and I could work through it. I laughed at people cutting me up in the car and everything would be done when it was done. It felt brilliant.

After cancer I was trying to be that person, but that person had a routine of job and sport and family which I didn't have. But gradually I got more and more angry and crosser and crosser. At nothing in particular. The slightest little car incident would have me blowing the horn or gesticulating about the other person's inability to drive. The kids and Wendy were getting short shrift for no reason other than I could and the dog learned to stay out of the way!

It all came to a head recently when we'd been to see Wendy's Gran. She's the traditional matriarch and a lovely woman but she'd had a stroke recently and then we were all going over for her 90th birthday. We went over on the Sunday before going back to school and I just got so wound up that I was mean and sarcastic and just not the person I aspire to be.

Wendy let me know, there's only so much someone can take and she's taken way more than anyone should. We had a frank discussion and I have to find how to be Nick Hart before cancer again.

Walking round school I was in a real mess, if home isn't right then nothing is right. Talking to people helped I hope I didn't bore people as I try to leave things at home but I am a bit of an open book and people tend to know my emotions half way down a corridor sometimes.

I spoke to Belinda my little goddess of honesty and straight talking and she suggested flowers and /or chocolate. It had been ages since I had bought Wendy flowers and the girls had never had any so roses (flowers not chocolates) it was.

Bertie is a fabulously rubbish guard dog until you're trying to walk in with bunches of roses for the ladies you love. Sometimes words come and sometimes they don't, I gave the girls their single rose each and explained that I'd been so proud of them and that I don't feel like I've been a very good dad this last year. Not my fault I know but I should have been better. It set the waterworks off I was crying the girls were crying Wend was crying and it was such a release. Such a release of emotion of thoughts of nick after cancer. It was my starting point.