Thursday, 25 April 2013

Slow and steady...

For the  fortnight before I started round two of my treatment I quietly just got on with gathering my strength and getting used to my mouth being a bit different. I can now eat most things albeit slowly, I forgot to mention in my previous posts that when they operated they also had to split my jaw bone for access (it's now got a wee titanium bolt holding it back together) which meant they also removed my bottom front teeth,  so biting into stuff is a bit difficult, luckily with my remaining nine teeth I have one canine tooth and one premolar that still have their opposite numbers meeting them on the left side, which is also the side with a proper bit of tongue which I think helps.  Yaaay, four teeth that work!  Hopefully the couple I've been left with on the right side will help anchor new gnashers when I'm finished treatment and my mouth settles down.   I haven't tried peanuts yet or a nice crunchy salad, I think I'll expend more energy trying to chew that lot than what I'll gain from it!  I didn't lose too much weight when I was in hospital but I'm now back to my fighting weight plus a couple of pounds in store.

I've had a few appointments at Edinburgh's Western General  for CT scans, getting prepared for my treatment and a couple of appointments at my GP's surgery having the dressing changed on the skin graft on my wrist, it's healing nicely but slowly.  Oops, I was out when the dietician came for a home visit, not all my fault, she said she'd come after lunch but arrived at five past twelve, I was home by quarter past.  She came back on Tuesday and is happy with my progress. 

Last Friday was a cracking sunny day and there was nowhere I had to be and with the thought that the next six weeks my routine will be every morning, Monday to Friday, I'll be over to the Western for radiotherapy.  I wasn't wasting the day stuck inside so took myself to the Craigmead car park between East and West Lomond and headed up West Lomond, there were quite a few folk about, not surprising with it being so sunny, there was a big group snaking up the steep path, I was disappointed I wasn't going to get the top to myself, then I frowned at myself for being selfish, it was a group of kids with a couple of adults and nice to see them  enjoying being outside and not spending the last day of their holidays sat in front of the telly with a games console.  On the way back down my legs felt lovely and bouncy and I tried a wee jog only for around a minute, I could feel my jaw jarring a bit so stopped, it was only just over a month since the surgery but it was nice to try.  I'm not going to be daft, my body is using it's resources for recovery and repair and I won't do anything to hinder that but my body isn't used to being a couch potato either so when I got back to the car park I felt fine and wasn't ready to stop so headed up East Lomond , I was out for just short of three hours and it's around eight miles for both hills.  

I've been taking myself over to the Western for my radiotherapy, my appointment time is for 11.00am,so the Bridge isn't busy but I've been leaving in plenty time and getting there early and on both Monday and Tuesday I was in and out before 11.00am, once in position it only takes about ten minutes to be zapped.  Last night I had an overnight stay in the Western for my first skoosh of chemo, except it more like drip.....drip.....drip.....drip..... it took ages.

Pauline took me over for 9.30am.  After the doctor check me over her final words after I told her I'd been up the Lomonds  were "I wish all my patients were as active as you."  (So wheesht you lot that say I should just sit on my bakooky, I'm doing it now, see, a nice balance!)  A cannula was stuck into the back of my hand, then I was send along for my radiotherapy and after I was back I was hooked up to a big bag of fluids just to make sure I was well hydrated, I was drinking plenty too, my urine was to be monitored, I thought they would just want a small sample but no they wanted it all.  So being a girly type I had to place a grey cardboard pan on the pan then pee, I'm not sure about the quality but the quantity reached gold medal standard, twice I thought I was gonna make a waterfall before I stopped!  I pitied the poor nurse that had to carry the sample to be tested, actually no I didn't I just smiled and let her know I'd been.  

The fluids took four hours to go through then a wee bag of steroids then the toxic stuff, now jeezy-peeps it  must be dangerous, the bag was in another bag and the nurse had protective gloves on to hook it up and then she let it drip into me!  (I was also told that when changing the dressing on the skin graft if it is still has weepy bits to bag it twice before disposing it as it would be contaminated!)  The chemo dripped through over another six hours I was asked regularly if I was feeling ok, (I was) then another big bag of fluids which eventually finished around 4.00am.  After the chemo I was told I didn't have to pee any more I hope she just meant in the cardboard potty!  I have never had to get up so often through the night so I didn't sleep too well, this morning I woke feeling like I'd had a late night with a few glasses of wine, not quite hung over but neither bright eyed and bushy tailed, after breakfast and coffee I felt fine if just a bit tired.  I was home by noon after another zap of radiotherapy.  I didn't laze about when I got home I went for the big Tesco shop but I made Pete come with me and I was fine, even walking round Tesco keeps the blood circulating!

Tomorrow I'll take it easy after the last zap of the week, since I'll getting picked up at 4.00am Saturday morning.  I'm not running the Highland Fling any more but Pauline is and Gillian is driving and I'm coming for the fun and to help.  I'll be on duty at Rowardennan, not sure what my job will be but I'll be wearing these babies and they need broken in!  If I hear whimpering...

(Sarah, Andrea says this is your first ultra, you have picked a cracker to start with, you'll be fine, relax, run easy and enjoy.  Hope to see you go through Rowardennan smiling) 

Monday, 8 April 2013

Round Two

I was at the Western General this morning for the pathology results and I am to have radio and chemotherapy, as I said earlier I was prepared for this result.

Okay doky, I now know what’s ahead, that’s been the hard bits really, the unknown from the very beginning on my first appointment. The word ‘may’ appeared as in “This may be sinister.”  To “You ‘may’ need further treatment.” Well, now I can face it head on. It will take six weeks starting on 22nd April, I’ll have radiotherapy Monday to Friday with the weekends off and for the chemo, one hit on my first day of the radiotherapy with a single night staying in the Western so they can monitor my kidneys and bloods.  It shouldn’t be until around the third week when they hit me with the second and final blast of chemo that I’ll start to feel a bit rough, my mouth will get sore and my neck will feel like it’s sunburnt but that won’t be permanent and there’s a few other minor side effects .  The one thing I’m not liking the sound of is that I’ll end up with a dry mouth and that will be permanent, but keeping a bottle of water on hand definitely beats the alternative!

So the Fling will be around the early part of my treatment, and as long as I feel ok I’ll come up to cheer everyone on, but I’ll be a DNS for the WHW. That is the hard thing to get my head round, but next year will be all the sweeter when I slap my hands on the Leisure Centre’s doors.

I've still got the best support crew in my corner…seconds out…round two...ding ding.
Hands up, chin down. COME ON!

Friday, 5 April 2013

The Longest Tunnel.

Don’t worry, I'm not going to give you a scalpel by scalpel account of a medical procedure but this has been the hardest thing I've ever been through and without the support of everyone that cares for me I doubt I would've seen the light at the end so quickly.

Sunday 17th March Pauline took me through to St John’s Hospital in Livingston, I wasn’t nervous, I haven’t done nerves since my first WHW race in 2003, I was looking at it like doing a big ultra, I knew what was ahead would be hard, and whatever happened I would do my best.

Monday 18th was the operation, being anaesthetised is not like being asleep, I remember being prepared for the op and then suddenly I was coming round thinking that was quick, except it was twelve hours later. I felt ok, but I was on a morphine drip, my mouth and the right side of my face was numb, I was breathing easy and could wiggle my arms and legs.  This is where my fight started,  getting my bearings on what will be the new normal for me, two thirds of my tongue has been removed and replaced with skin, blood vessels and muscle from my left wrist, my wrist has been covered with a piece of skin from my tummy.  I was in Intensive Care until Tuesday afternoon, having my vital signs checked every hour.  It was reassuring when they stuck an ultra sound gizmo in my gob and I could hear my heart-beat pulsing loud and strong in the transplanted tissue.  I was moved up to a single room in the plastic surgery ward and on Tuesday night Pete and Pauline came to visit, they were really surprise how almost normal I looked, we had been told about the possibility of massive swelling and bruising, and apparently I wasn't too bad, I never saw myself for quite a few days so I just had to take their word for it.  I smiled when Pauline said the stitches up my chin were so small and neat and looked like a little Devil’s Staircase.  (The reason for the scar being zig-zagged is because the eye is drawn to straight lines so when it fades it will hardly be noticeable) I was tired but still fairly bright, I’d only missed one night’s sleep and for an ultra-runner that’s a doddle.  With having a trachea tube I couldn't talk, but when folk asked questions that only require a nod or a shake of the head, and it is amazing what you can say with hand signals and a note pad and pen, it wasn't too hard making myself understood.
After another night of being checked hourly, and with the sound of the oxygen pump and feeding pump whirring away and the noise of the ward I had second night with no sleep.  I was warned that the third day was the day where most folk who have gone through this took a dip.  Yep, it was a struggle, not any particular painful thing, that was being controlled by drugs it was the overwhelming everything at once.  Lying on my back for days was just not right, neither was having my left arm bandaged in a big tight dressing from knuckles to elbow, a breathing tube attached to my throat, two drainage tubes in my neck, one in my left arm, a catheter in my bladder and intravenous antibiotics in the back of my right hand.  I felt like a beached octopus.  The room was kept uncomfortably hot to make sure my blood vessels are nice and open. I was lying doing nothing but sweating like I was running a 10k on a summer’s afternoon, my arse was stuck to the damp sheets and my back ached. 

Pauline had plastered the toilet door with photos of my running highlights, West Highland Way and family gatherings.  I found it hard to look at them without doubting my ability of ever being healthy and outside again. But day by day the tubes were removed and by Friday all I had was the feeding tube.  Besides being nil by mouth I was also nil by bum, but Friday was the day that things moved and not just my bowels, I was in my own jammies at last and was able to get out of bed by myself,  I went for a pee around every two hours, not because I needed, it was because I could!  I also managed to sleep for the first time since Monday. 

The tunnel was coming to an end, Pauline and Pete brought in Mel’s iPad that she has generously lent me and I was back in touch via facebook and email. It was such a comfort having all your support and visits, and all the cards and wee presents I’d been sent too, a guardian Angel, a beautiful hummingbird brooch with the words in the card “A wee strong bird that can go very far!”  brought a lump to my throat, and some that had me rolling with laughter, a People’s Friend (yes I did read it, but not the serial stories, I wasn't wanting sucked in like watching an episode of a soap)  the hack saw with the cake.  Knowing I was in the heart of a lot of prayers was a comfort, I embrace all faiths and my uncle who’s  just back from a holiday in India  sent me a little statue of Ganesh, he’s the Hindu god for luck and good fortune, and his belly gets a little rub every day.  Some practical stuff, hand cream, lip balm, note book and pens, some knitting to keep me out of mischief and one thing I’ll never forget, (I still didn't have the go ahead to eat anything with substance,) the first proper food I had in nearly a fortnight, it took me all night to eat it with a spoon, a delicious Scrumptiousness cake!

I was coming on leaps and bounds and started to question some of my treatment, like did I need to be fed through the night? Also, I didn't believe 1700 calories a day was enough me, I was polite but in my mind I smiled and though “Oi don’t you know I have the metabolism of Rampant Lion!”  I also opened my window a crack and what a difference, my room was far more comfortable.  I had a little giggle to myself when three different nurses were checking my vitals said, “That’s better than mine!”

I was to be kept in over the Easter weekend, no bad thing I suppose because if I was let out I would have went to Perth to watch the Anglo-Celtic Plate 100k and 50k races. But I followed the progress on twitter and facebook, not as good as being there but the next best thing available to me. Doctors stopped examining me and on morning rounds just stuck their head round my door just to say Hi and if I needed anything I knew where they were.  

On Tuesday I was allowed home and what a pleasure sleeping in my own bed.  Getting out and about, but I'm being good, no running until the skin graft has healed.  My right shoulder is dodgy with nerve damage, my speech isn't too bad, I am being understood, saying the letters L and R need a lot more practice but I’ll get there.  It is hard though, from the oxters doon I’m in excellent health and chomping at the bit to go for a run but I'm gathering my strength, I still don’t know if I've to get radio or chemotherapy but I'm prepared if I do. On the grand scale of a life time what’s another six weeks of treatment and feeling rough for a wee bit longer. I’ll find out on Monday. 

But before that I've got a great night out ahead on Saturday, a fortieth birthday bash where I’ll be returning a lot of the hugs and love I've been sent.

One more thing, I will not be called a cancer victim or sufferer. I am a cancer survivor!