Friday, November 19, 2010
I've had a fabulous week, I've felt more relaxed and fitter than I have done for a very long time. I'm still getting tired but it's a learning process, how much I can do in one day and how I feel before the batteries run dry, kind of!
Something has been missing though, my life has changed a little since I had my Hickman line out last week. My daily injection is no longer needed which is fantastic, my belly was looking like a very random dot to dot puzzle. I have had a real mental block about giving myself the injections and I had reservations about Wendy giving them to me. I appreciate she's a trained nurse and that she was happy to do it but I didn't want her to, I didn't want our relationship to change to one of carer and cared for. If it got to the stage that I'd been so ill I had no option then so be it but I wasn't planning on being ill! This meant that I had a daily visit from the district nurse team, not the whole team just one of them at a time!
This visit was as much a psychiatric assessment as much it was to administer the drugs. It helped so much having a friendly face call in and have a bit of a chat, I can understand how important it must be for people who are alone. The team helped me come to terms with coming home, being ill, being better and also about being a complete woos when it came to me doing the injections. They were patient and funny and they did a great deal more for me than just give me injections they started my head healing.
The removal of the line has been a relief for me, I had worried bout how the procedure was going to work and whether or not it was a case of just pull the darn thing out. As it happened it was local anaesthetic into the area around where the line exited my shoulder and a reasonable amount of cutting. The line has a rough area designed into it so the body's tissues can grow onto the line and hold it in place. Well from the grunting and huffing of the doctor and the pushing and pulling on my shoulder I guess my body had done a good job of growing new tissue! Once the connection between me and the plastic tube had been severed it was a gentle pull and out it came, as it was pulled out of my neck the doctor put pressure on my neck to help the vein heal up and so I didn't bleed under the skin. I would have been annoyed to have beaten cancer twice and then bled to death! I now have three stitches and a line on my shoulder which may give me the scar I was wanting. More importantly though I don't get woken up by a sharp plastic clip digging in my nipple every time I roll over in bed and I don't feel self conscious in front of Wend when I'm in my birthday suit. She's never commented or made an issue it's purely in my head that I'm feeling self conscious about it.
This new freedom has allowed me to be a little more adventurous with my days, so along with my physio rehab I've visited work and driven around more than I've done before. I'm also really enjoying walking the dog the smell of the leaves, the sound of the river and the feeling of the seasons changing.
The visit to work was great, seeing people and having a bit of time to catch up but most of all it was the welcome I was given. Having been away for so long you never know how people will react to you. They're busy with their own lives and their own worries but they made me feel so welcome and the number of people asking when I'd be back, it was quite humbling.
Well it had to have a bit of a lump in the smooth running and that came on Thursday. It was my fault, I'd felt great on Wednesday and so I'd done too much. It wasn't the end of the world too tired like a few weeks ago but it was a definite reminder of how I'm not sorted, regardless of how good I had been feeling.
I feel great in my own skin at the moment and have very few if any sad thoughts, until I was watching children in need tonight. A young lad had lost his mum to cancer, he was talking about how brave she'd been having all the injections and the treatment and yet she still passed away. I had a lump in the throat and a tear in the eye when George piped up that I had been brave having all the treatment. I haven't been brave I've just had to accept my lot and get on with it, I've been damn lucky to be honest. I'm still here and I have the majority of my faculties about me, long may it last.
(Oh the instruction in brackets is to a friend of Wend's who complains about not knowing whether to have a cup of tea with her blog up date.)
Monday, November 15, 2010
Normal for us is being out in the peaks walking and scrambling and generally enjoying the great outdoors. So the first morning of the rest of our lives that's what we did. A gorgeous blue sky followed us all the way to Burbage where we walked under the gritstone cliffs and through the heather watching like minded folks enjoying the amazing scenery.
It was the first time we'd taken Bertie on the rocks and we needn't have worried, I think he's actually a grey hound/kangaroo/mountain goat cross rather than a pedigree Border Terrier. The way he scooted about and then bounced over the heather brought joy and amazement. I felt superb scrambling up the cliff to try and catch up with the girls, I couldn't have done it any quicker but I felt great and my heart wasn't trying to burst out of my chest as I'd expected. With few slips and slides and plenty of laughter we were back at the car ready for tea and medals at the local cafe.
This was the scene of my first welling, I could feel my eyes filling and my heart pumping. Looking at my amazing family, sat round eating toast and having their various drinks, we got here. Through it all, all the chemo, the scans the high's and the lows. The blue lights and the crappy food (in hospital), we'd got to the other side and I just felt an overwhelming pride in these three incredible people who I'm lucky enough to call my family. They'd carried on, going to school, walking the dog and keeping the house sorted and all being fed and watered and carrying on with life.
I kept it together, can't be sobbing in a public place! It took it out of me though and I felt flat for the rest of the day, the sobbing was stuck somewhere and it needed out but it's not like a spot that you squeeze it needs a trigger. Charlie was very nearly that trigger when he phoned from New Zealand, I wish I could have sounded happier but I had nothing left and I felt myself going but then the phone went dead. He rang back, it went dead again, he rang back muttering something about the hamsters weren't running hard enough! It was enough though for me to lose my train of thought and for the sobs to remain stuck, probably to Charlie's relief!
They came at Sunday tea, we'd had a lovely day going to the park with Viv and her family and then chilling, watching the rugby and just pottering round home. I'd taken the hound for another walk just round the block but I felt capable and really enjoyed the feeling of the air in my lungs and the warmth in my legs. So we're sat round having had a beautiful roast chicken and were just tucking into some pudding when they came. Wendy saw them coming and I tried in a way to stave them off but they came anyway. This time I knew why, I was looking at George and thinking how grown up she's becoming how much has changed since the start of round two. How fabulous it was to take the girls to a restaurant on Friday and the way they behaved. How I'm going to get to see them grow some more, this is it, I get to see my family blossom and grow. Whether I agree on boyfriend choices or come out with the immortal line 'You're not going out dressed like that' I don't know and to be honest I don't care because unless I get knocked over by a bus (other forms of mortality available!) I'm going to live more than was expected. The feeling that my life is extended is weird and wonderful at the same time, I just don't want to mess it up.
Friday, November 12, 2010
I'm in remission, again! Liked it so much I thought I'd do it twice!
The scan has shown that the lump has reduced in size, the nodules on my lung have disappeared as they hoped they would, the liquid round my heart has gone but has left a thickened sack around the heart and my liver is a bit fatty. Fois gras anyone!
It's not sunk in yet and I haven't sobbed but I will and I'll bloody well enjoy it. My head feels like it's going to explode with all the pent up angst and my heart feels like beating out of my chest.
I owe so much to so many and the hearts and thoughts have given so much. My wife and kids have always been my raison d'etre and the look of relief on Wend's face when we had the news was magical as was the reaction of the kids when they came home from school. Carys wanted to squeeze and squidge me, George seemed happy with a hug but there'll be plenty more of those.
The big boss (not Wendy!) says I'll be in trouble if I break my arms cartwheeling! Mum sobbed, Viv sobbed, Dad hugged and hugged as did Amanda, Belinda squeeled and Mark was overjoyed. After having to give shitty news out for so long it's fab giving good news for a change.
Going to go for a curry and a couple of shandies tonight, a little celebration. This time remission feels right, it feels like it has a permanence to it as though the little bar steward is beaten. Whether it is or not only time will tell and that'll always be in the back of my mind, but for now I'm going to enjoy life for as long as possible.
Thursday, November 11, 2010
The torchlight procession was lovely and the the fireworks were excellent, the food queue was rubbish. It's the one thing that let down the evening, it didn't flow and was too slow, it's not a massive problem but it meant that I spent more time stood waiting than being with Wendy and the girls.
I felt good Sunday, my legs knew I'd been walking and standing for longer than before, but I felt great. I so looking forward to the evening, beer and chat with my two best friends. The Hillsborough Hotel is a weird little pub which has it's own brewery attached to it, it's the sort of place that has live music. In fact there was a group of people playing folk music in the conservatory at the back while we chatted and laughed and shared stories, some old some new. Mark and Charlie had bought me a brilliant black and white painting, ink on silk, of Stanage edge. Emotive and beautiful it made me think of times walking and biking on the edge with friend and family. trying to catch Mark riding down the bridleway and getting to know Veronica on her first visit to the UK while watching the girls jumping from rock to rock.
It's not big but it's special and it meant so much knowing who it was from. The beer sank really smoothly and the banter was light hearted and witty, we even had a Barry join us which added another dimension as he has witnessed Charlie being tipsy on more than one occasion!
My head was surprisingly good the next morning, much to my amazement, perhaps chemo stops hangovers........not something I'm going to research too much! My second physio session was superb, I was buzzing with endorphins afterwards and wanted to take on the world. Something had changed, be it in my mind or my physicality or both but I worked harder than the week before but it was easier to do. I could lift more and I lasted longer on the aerobic exercises and my breathing was easier too. It just gave me so much confidence and such a high.
My high was tempered slightly by a scan the next morning, a tickle in my throat prompted my to stay and get it checked out. So I spent the morning giving blood and breathing in and out to be told all was well. I have my consultants voice ringing in my ears warning me of being complacent about tickles and coughs. It was no bother and at no point was I made to feel as though I was being an inconvenience to anyone. As I was leaving I had to squeeze through a group of people on the corridor, they were obviously the recipients of the worse news possible. There is a look in the eye, an acknowledgement of the fragility of life. It brought me back to my own reality and that the scan I'd had that morning will bring some sort of closure, one way or another. Up until that point I'd had only positive thoughts about it's outcome, even now I'm having positive thoughts. I've been walking the dog and thinking about work.
It'll be what it'll be.
I've been a royal pain in the bum leading up to my birthday last week. I've had too much time to think to be honest, I've been thinking too much about life and what's important. I've spent time looking out of windows wishing to live, not wishing for a new phone or a bigger better faster thingymebob.
So when asked what I'd like for my birthday I said nothing, as in I don't want anything rather than not saying anything! The thing that I couldn't see in my blinkered way was that Wendy and the girls and others around me wanted to celebrate my birthday and that the giving was as much for them as it was for me.
The biggest thing for me was that I made it, at times I was unsure as to whether I'd get to my 39th year. I guess it was a little touch and go at times, but hey I'm here and I have no plans to go anywhere soon.
I had started to suggest things to Wendy but I still wasn't being overly helpful. But she came up with the one thing I didn't know I wanted but I really did! Along with a cookery book and a box set of dvd's, which I'd forgotten I wanted, Wendy got me a lovely ceramic mixing bowl. I have watched cookery programs and yearned for a nice ceramic bowl in which to make bread. Now I had the bowl and the book so Saturday morning I made my first loaf of soda bread, it was so nice mixing and feeling the dough in between my fingers. The really basic action of mixing together simple ingredients and then hoping and watching as the dough turned from something so soft and plain to a lovely looking loaf. It tasted ok too, even if I do say so myself.
Crusty and tasty
Friday had been a lovely day with gifts and laughter and the return of Charlie, on a flying visit from New Zealand. Saturday morning started with wonderful pancakes, bacon and maple syrup. Breakfast in bed, with Wendy and the girls and damn good food how can I not wake with a smile.
After a fairly lazy morning we had a lovely afternoon with a superb afternoon tea which Wend had prepared. Mark and Jill brought Charlie down and mum and dad called as they were taking us to Eyam for the fireworks. It was a lovely afternoon spoiled by me having a panic attack and being rude to Wend. We were half way to Eyam and all of a sudden I couldn't think where I'd put the tickets, the last time I could remember seeing them was when I was putting my shoes on and Wendy had moved them all of 2 inches from where I put them. This in my mind had been enough to stop me picking the darn things up and I said as much. It wasn't Wendy's fault the tickets hadn't been moved out of my eyesight and the embarrassing and worrying thing was I'd picked them up and put them in the pocket on the back of the car seat! It served to show me how my temper is still so close to the surface and that although my fatigue levels are miles better than they have been it still has a bearing on my patience.
Wednesday, November 3, 2010
I was nervous about going to the physios, I was nervous about being crap, about being the new boy, about how I'd feel the next day. So it was with trepidation that I got on the bus and pottered up to the Hallamshire for my physio controlled work out.
I was also really excited about it as I want to get my fitness back as it was such a big part of my life before. I was never a gym bunny and I hadn't realised how much I needed the endorphins until I had been denied them. But now I'm aching to get back to playing, running, swimming, biking just being me again.
So I changed into the only shorts that fitted me and a top that was once loose but is now almost indecent and into the world of heart rate monitors and sweat and pain we go. Well not really, it was friendly and gentle and welcoming. All the people there were people coming out of or going through a fairly harrowing time of their lives for one reason or another. No-one was rippling muscle or baywatch babe and it made fitting in much easier, the only person concerned about my ability was me.
My ability was mixed, I was pleased with my strength but frustrated with my aerobic ability. I know I've been through a lot and my body is doing remarkable things but my aerobic stamina cost me a great deal of time last time I tried to sort it out. I think that the fact I've done it before is a massive help to me but it's still a daunting hill to climb. Best get my crampons on.
Yesterday I had a trip into work, dad drove which was a massive help as although I felt a lot better than I thought I would after my work out Monday I was still aware that controlling two tons of metal was more taxing than controlling 18 stone of bald Yorkshireman on the bus! It was lovely to see people at work, it wasn't a social I hadn't got enough to see everyone that I wanted to (sorry Belinda) I had a form that needed signing too but it was brilliant to see the people I did. Some looked straight through me, but then I do look very different to last time they saw me, bald of head and bald of chin too!
All in all it's been a reet good week so far, I'm tired today from not sleeping very well but otherwise I feel great, even walked to the corner shop without having to stop for breath tonight! I want to keep at this level of improvement if I can, not sure what I can do to help but I'll keep doing what I am so far.