Monday, July 26, 2010
Well my amazing ladies did it. They bounced on their space hoppers and raised a stack of money for Cancer charities in Yorkshire. I'm so proud of them they give me so much support, emotionally and physically. They are my reason for life.
Lots of flat space hoppers, pumping required.
Carys in full flight, well her hair is anyway.
Post bounce pooped
They bounced for a minute to try to set a record but missed it for some reason but then set a new record for the number of people bouncing a quarter of a mile! Carys bounced the full course and was totally bounced out by the end of it.
I feel incredibly blessed to witness the kindness and generosity of people who have given their time or their money to charities. I have also received gifts from work which are incredibly generous and have given me a massive lump in my throat to think people take time out from their busy lives to think about me. Thank you, it means a massive amount to me.
As a dad and a husband I am the luckiest, yes having cancer is sh*t but I have an incredible family who I absolutely adore and they are a constant reminder of how good life can be.
Friday, July 23, 2010
That's been today and yet all I've done is sit. First I sat in the waiting room for the respiratory lung function test at the Hallamshire. Blow into a machine and keep blowing until you feel a bit odd then blow some more. Then sit in a machine which looks like something Sir Clive Sinclair could have designed and blow then suck then hold then blow some more! The first test looked at my peak flow and the volume I could exhale the second showed how much gas was being passed into my blood stream by my lungs, an efficiency test by all accounts. Both showed I have really good lungs which I'm really pleased about, so my heart is good my lungs are good. Just sort this extra lump in my chest and away we go!
Then I sat and sat and sat some more at Weston park. Not sure why everything took so long this morning but it did and it was a little frustrating but again nothing to get excited about. I had some bloods taken, quite a bit this time, seven vials in all which my battered veins struggled with. They had to use two to get enough blood, mind you the ladies in phlebotomy are amazingly good at getting the red stuff out of you.
The consultation felt like a bit of a blur of information and form signing. It wasn't but it felt like it. It was actually forty minutes of chat about me, how I was doing and what was happening next. Yes we'd waited and waited but then to have forty minutes of a consultants time was better than the health service you hear of. In that time the labs had looked at my bloods and confirmed they were in good shape for the next round of chemo. My head's in a pretty good place too, yes I'm worried about having a line put into my chest but they've done it before and they're experts! I'm worried about the girls going to Wales but it's the best thing for this summer and we're working towards having many more summers so that's how I'm dealing with it. It's a bit like riding up a hill to then have the joy of riding down the other side. The pain will be worth it.
My heads also much more air cooled than before. With the advantage of hindsight I should have hoovered my head before having a shower to save the carnage that was our plug hole. It's a very strange feeling putting hand on head to wash hair just to find most of the aforementioned hair in you hand and sliding down your legs into the bath. It's this loss of hair that get's to Wendy the most I think, it is the visible sign of illness, of the chemical warfare raging in my otherwise pretty bloody healthy body. I look like a thug or a gay biker not sure which. I'll er on the side of thug, personal preferences and all that!
You try hoovering your head and taking a photo!
That's not the half of it!
The weird look is in this summer.
There has to be a big thank you though, Dad offered to take me up to hospital and ferry me and Wend about. Not sure he was over joyed at the eight oclock pick up but then he spent the next four hours waiting for us and taking us here and there. It's special having a dad like that really special and now he has more hair than me...........for now anyway!
Thursday, July 22, 2010
Wendy and the girls are bouncing on space hoppers for Yorkshire Cancer Research at the weekend and have already raised a huge amount of money but it's be great if we could give them a bit extra.
They have a just giving web page HERE and it gives any information that I've missed!
It still amazes me how much time and effort people put into raising money and awareness, I'd like to say I'll be bouncing at the weekend but as a walk to the coffee shop wiped me out this morning it's unlikely. I'll hopefully get some photos of the bounce and will post them on here.
Thank you ever so much if you decide to donate or even if you have done already.
Wednesday, July 21, 2010
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.
Saturday, July 17, 2010
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.......
Wednesday, July 14, 2010
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.
Thursday, July 8, 2010
'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.