Thursday, July 8, 2010
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.