Friday, 31 August 2012

Nine Down and Three to Go

Friday 21st August - Chemo Day
9 down and 3 to go? I'm not sure about that because the drug administration is only the start of the cycle with the real battle taking place during the following weeks.
After my outing in the Dark Peak almost 2 weeks ago I took a dive in my energy levels, really only picking up last Tuesday when we had a day out at the seaside town of Cleethorpes, making the most of a beautiful summer day. I enjoy Cleepies, its clean and tidy and I can watch the ships making their way up the Humber Estuary through my new binos.
Wednesday evening
I really let my hair down (what bit I  have left) on a night out with with colleagues / work friends. OK I had TOO much to drink but enjoyed it immensely. I even managed to throw up which after so many months of trying to keep it down made me feel better. I spent a long time on the clean up which sobered me up somewhat. It didn't go down well with Sue though, she's right it must be affecting my brain cells but I must say for those precious few hours of eating. drinking and banter, I felt like a normal guy, remote from the cancer label I feel that is stuck to my forehead and with Bob and his pouch hidden beneath the restaurant table. Yeh she has a lot to put up with.
Thursday -
Yesterday was Blood Test day at WPH where I met up with Steve D who was there for his first of his 30 radiotherapy sessions. These are daily (except weekends) and take about 20 mins. The meeting with Steve was short lived 10 mins at most before I was called in for my consultation. All seemed well till I got home and was advised that my Platelet level was LOW @ 91.  I needed to go back early this morning for a re-test and if they had risen above 100 I could carry on with my treatment. I left the Parish Oven quiz early just to get a little more kip.
Friday - Today
I'm at WPH for 09.30 and get more of less straight in for my blood test which is done by my fave nurse Rachel. She redressed my PICC and measured the exposed line which used to to be 3cm and is now 6cm meaning that 3cm has come out. My other fave nurse Helen who is the expert and who fitted the line came over to check it out.Whenever my dressing is removed it seems like my body tries to reject the line. When I ask if this is normal she says NO. Again it looks like in their experience I'm unique. (in other words a problem patient that is a pain in the arse)
Blood sample result come back with my platelet level at 105 so my prescription is ordered and its a long wait for the pharmacy to prepare the drugs. During the infusion I read some more of Issac Newton's biography, reading each page twice for it to sink in or until I feel sleepy. I had so much time on my hands that I also watched "Eiger Wall of Death" on the i Player. Talking to one of the regular patients who is next to me her platlet levels are 350 which is bang on the mid level of 100 - 700. I'm a little concerned that activity levels or sleep affects platelet levels however Helen assures me that there is nothing that I can do to improve or restrict platelet production, it relies upon my bone marrow's ability to manufacture them and I just happen to be one of those who is slow.
I'm late getting out and go straight to bed when I get home but the sleepiness that I felt earlier has faded and the steroids have taken over with my brain on overdrive. Its going top be a long night.

Update Saturday 06.00
I slept from about 12 till 02.00 then nothing after. My head is buzzing with thoughts and ideas all unrelated to my health but they are are gone and forgotten just as quickly as they came. A few brews and more IPlayer views got me through to 05.00 then I got up to paint an angle iron lintel in preparation for our garage side door being replaced this morning so I'm must be up by 07.00 to move cars and get the area ready for the builders. Later today I will have to get stuff ready for a few days in the Lake District with some old friends starting on Sunday afternoon so hopefully I may get some sleep tonight. At the rate my bottle is emptying it will be Monday morning before it is done so I'll disconnect and flush the line myself then.

Tuesday, 21 August 2012

Chemo is Not an Excuse to do Nothing

Tuesday 21st August
I cannot put my finger on it but you just cannot predict how the side effects of each session will go. My canister did not empty until sometime during Sunday night so at 04.30 I disconnected myself and got sandwiches packed. Later that morning after Sue flushed my line with saline I managed a day out in the Peak District, on Black Hill with Graham and Dave White even though I was feeling pretty rough and had not had much sleep. Normally I would have expected to feel reasonably well (for a chemo patient) directly after treatment but it was just like it was mid week at the point when I take a turn for the worse. I'm also noticing that my taste buds are taking a huge hit since I usually enjoy my picnics on route but disappointingly my cheese and pickle sandwiches tasted like lard and this was followed by a huge amount of effort to stop me vomitting. I really need a good curry or chilli con carne. I remember when Dad was on chemotherapy for Leukemia, he had similar problems with his mouth, taste, well everything - now I know what he was going through.

Don't Look at Me - Blame Chalky
The walk was only about 12 km but over rough terrain through bracken and heather which really took its toll however visiting some of the quarries and low crags in the area brought back the urge for adventure on rock.
I almost soloed a route but thought how silly that would be thinking back to what Sue said about if I had an accident whilst on chemotherapy and that I would not heal.
Back at the car my legs were like lead and I didn't even fancy a pint on the way home.
Today I have still been pushing myself to the limit, busy in the garden, doing as much as I can - Rest there is plenty of time for that when I'm in my box, hopefully many years from now.
Sue read the above blog and she thinks its killing my brain cells - as well as my blood cells

Friday, 17 August 2012

Eight Down Four To Go

Friday 17th August
Yesterday was blood test day. You get to recognise various patients, some of whom acknowledge me with a nod or wink which in contrast ALL staff that I'm in close contact make an effort to communicate in some way. Dave - the Day Ward Support Worker came and spent his lunch break sitting with me whilst I waited for my appointment. We chatted about all sorts of things including him having similar treatment to me several years ago. It just show how this terrible disease can unite strangers and nurture friendships. Helen also spotted me waiting and also spent some quality time with me chatting. She spotted my latest reading material which is a biography of Issac Newton, a hero of mine - a bit like Graham Duckmanton (My hero for selfishness) and Andy Kirkpatrick (hero for - well being Andy Kirkpatrick). Yep I'm full of shit making out that I understand the workings behind this great man's intellect - but I'm trying.
One of the advantages of getting there early and having a late consultation is that by the .time you get to see the consultant the blood test results are back. The results of the tests were OK with my platelet level remaining stable at 95, so it has not taken a dip suggesting that (in my opinion) that if I carry on as I am then I should be on course to complete the treatment. Side effects have carried on much longer this time  (12 days in all of feeling sick) so I have been taking vitamin supplements and cod liver oil capsules plus a regular dose of Turmeric mixed with pepper and olive oil on the basis that it could help and if it doesn't then it won't hurt either.I have however stopped taking the Aspirin albeit temporarily since it reduces blood clotting which is the purpose of Platelets.
Today was another learning curve for the Sister who tended to me. Obviously I'm infamous throughout the day ward for my unusual vascular physiology relating to my PICC and she could remember me for that
reason. Anyway after cleaning and redressing the line the flush went easily but it was impossible to draw blood back so the dressing was removed and retried - It worked so it was redressed again and then hooked up to my drugs. The following 4 hours went fine however I could easily have fallen to sleep if the drip alarms from fellow patients didn't keep sounding. As usual I have been resetting my own occlusion alarms when none of the nurses are looking.
Back home and checking emails I have had a lovely mail from a mate in the Fell and Rock Climbing Club who has had similar health problems noting that he was enjoying this blog. I'm finding that the effort is worthwhile in order to keep so many friends who are scattered around the country up to date. It's just a tool (some would say just like me) that needs using wisely.
PS - We won the quiz last night,  £15 to add to the kitty and the beer was semi palatable with the exception of stinging the ulcers on my tongue. Jane the barmaid obviously missed us last week however she made up for it this week with the extra banter and a good dish full of roast potatoes left from the restaurant carvery.

Sunday Evening Update
 I only managed 3 hours sleep on Friday so I was awake for over 23 hours yesterday and still did not feel tired. It just goes to show how much the steroids affect brain behaviour with mood swings and insomnia but without them I'm advised that I would be vomiting constantly. When I did get to sleep it was short lived when I found that Bob's pouch was leaking, luckily it had not escaped on to the bed covers. Once sorted and cleaned up I had a cup of warm blackcurrant and listened to a bit of Barry White (Album - Stone Gone) on my Ipod with that deep, soothing voice gently weighting my eyes closed. My canister seemed to empty pretty quickly Saturday however since then the flow has slowed (maybe because I sleep with my arm bent and it restricts the flow) so it won't be empty till sometime tonight which means I will get disconnected in the morning. The sick feeling has been a constant unwelcome companion for the whole weekend especially after food but it is something that I just have to get over.
Our Phil has posted his JB's cook resignation on my previous post for anyone to look at and he has also sent a photo of our Emily, Diane and, Sarah before they set off on the Race For Life which is posted below (Named in order on the pic) Well Done All of you.

Friday, 10 August 2012

Quiz Team on Tour

Castle Crag Borrowdale
Buttermere from Fleetwith Pike
Wow  11 hours sleep last night? Not surprising really since I have just come back from a few days of steady walking in the Lake District with Uncle Barry and Graham. I suppose we were more like Compo, Clegg and Foggy from Last of the Summer Wine rather than Mountain Men, but the idea was really to escape the shitty time that both Barry and I are having and give everyone else in our lives a little breathing space. The pressure of life over the past 6 months has taken its toll emotionally with me hitting all sorts of problems, physically and mentally. Certain setbacks have opened up huge weaknesses in my mental armour which have left me vulnerable to the slightest emotional highs and lows. I'm aware that it is something that I need to get to grips with if I am to retain some dignity.
Anyway Graham and I had already sussed out some easyish walks that would neither kill us nor leave us thinking that we had been short changed, all of which would give fantastic panoramas of the beautiful landscape around Borrowdale and Buttermere. Staying in our Rossthwaite cottage and doing our own cooking we lived like kings for a few quid apiece but the icing on the cake is being out in the mountains just like old times. Monday we walked around Castle Crag and on to Grange, Tuesday Fleetwith Pike and Haystacks and Wednesday Rannerdale Notts and Buttermere. Tuesday  I was OK  ish on Haystacks but I knew that the Chemo would really kick in by Wednesday so as expected, even on this low fell (Rannerdale) each footstep was an effort, gasping, head pounding, chest pains and sickness. It felt like I was walking in lead boots so the rest of that afternoon was spent snoozing and relaxing besides Buttermere, watching some of the kids playing and enjoying the sunshine. I suppose Fleetwith  Pike and Haystacks was the benchmark effort of the few days for both Barry and myself and I even carried Graham’s coat on Monday. It also looks like Curry Boy (Our Phil) has got some competition for cooking duties on our next JB's after Uncle Barry voted Graham's veggie stir fry with pasta as the top dish 
Just a note to all at Pandrol, I did invite Mick MacMichael, our Parish Oven quiz captain (who was already taking time off) on our trip but he decided to give it a miss this time. Just look at what he missed
Another thing that was unusual about this few days away was the distinct lack of beer since the cottage is only 30 yards away from the Scafel Hotel. Total alcohol consumption for 3 days for 3 persons was 3 Bottles of red wine, 2 pints of Carling lager and 1 pint of Jennings bitter. We were in our pit by 10pm. What is it coming to?
Kids playing in Buttermere
with Fleetwith Pike Behind
Back at home our Sue has snaffled nearly all of my liquorice Catherine wheels, saving me just a couple which I'm enjoying the last one now and I'm taking it easy for the next few days since my nose has had a slight bleed which is a sign the my platelets are low. This bit of sunshine is doing me the world of good.

Saturday, 4 August 2012

Session No 7 - But only Just

Thursday 2nd August
I have been for my blood test today. Helen my support specialist nurse always makes a fuss of me, finding time to sit with me in the waiting room for an informal chat prior to my consultation, this is when she changes hats to become the professional that she is. I think that she is noticing some that I have highs and lows, probably due to lack of sleep and lack of free time in the outdoors. My blood results had not come back but Richard was happy that they would be OK. 
Barry, Graham and Michael picked me up for the quiz at the Parish oven. The beer did not taste so good and my tongue tingled with the cold. We always enjoy the night whatever and agreed to have a few days of steady walking in the Lake District next week.Michael chose to give it a miss
Friday 3rd August
We arrive at WPH and was looked after by Becky - there are 3 Beckys, this one is young, blond and lovely. she looked through my notes and mentioned that my platelet levels were lower that they like (95 when they like to have a reading of 100) however Richard the consultant was happy for me to go ahead and have the treatment. It all went smooth. Whilst there it gave me the chance to carry on writing the geology section to my book. How can one criticise this bunch of caring, compassionate team when they all work so hard and still maintain a smile to cheer you up.