Wednesday 22 August 2012

No mans Land end of Chemo...... for now!

Finished the last of the capecitabine tablets yesterday which means this cycle of Chemo is over ........ yay no more feeling tired and hands and feet hopefully will return to normal soon they have been sorely tested with this last lost of capecitabine i think because the dose was increased when i stopped the oxalyplatin. I wonder if i had continued with the oxy whether these mets might have been blasted more thoroughly should i have been stronger and continued longer? I know that it probably wasn't as bad as what others go through a little sickness but not loads it was just that the symptoms were making my feet worse and i was worried that i would have permanent neuropathy in my hands.....but is that the price i have to pay? They have said i can go back to it again if need be. Maybe further down the line longevity will seem more precious than it does now. I find it hard at the moment to feel like i am fighting for my life as i feel so well, but in essence that is what i am doing every day!! and will i feel i let the boys down in the future for not being strong enough now. It's such a hard road at times......for now i need to get back to making the most of my time rather than letting the days slip away as they have done lately. I need to get my feet sorted they are sore leathery numb and i have achilles tendonitis to boot! Walking especially after a period of rest is a lumbering affair in the morning i have to take the stairs one at a time like an old woman!!
Well scan next week doc the day after and then what happens next!!?? for the short term i am entering no mans land that bit of no chemo in between the march of the mets! where nothing is being done and we play the waiting game!

Thursday 16 August 2012

From dates to demise

Well since i last wrote two important dates passed by on July 30th marked 16 years since i lost my Dad to cancer. I had always been very positive until that point about how cancer can be beaten, dad had it when i was a baby he under went a course of radiotherapy, i don't think he had chemo then this was 1963 i made it by the skin of my teeth, mum and dad married in Sept 1961 before i was born mum miscarried and i arrived the following year Oct 1962 right in the middle of the Cuba crisis what kind of world did they think i would join? Mum rode through the winter of 63 keeping a small baby warm, and then i don't know when each event happened but i was taken ill around 6 months with febrile fits and dehydration which they thought i may die from and dad had his cancer. It is only now really nearly 50 years on that i can appreciate the turmoil that she and he must have gone through, how lucky i was that i survived and that Dad beat the odds and lived for a further 33 years, only to have the cancer return practically to the same spot but on the pelvic bone, so painful. He remained with us for 9 months from diagnosis, i was pregnant with Adam at the time and life was good, i finally had the second child which would mean that my Joe would not have to live his life as an only like me. The day that mum called to say that dad had cancer i think i would have to say was the worst of my life to date, i think that bolt from the blue that indicates that your life is going to change forever is hard to take, for me even harder than actually losing him if that makes sense? it was all encompassing and i just couldn't take it in. I asked to be told what i was having so dad would know but they couldn't tell me and in the end he was still alive to see Adam who was born three months before he died. So every year i know that whatever age Adam is that is how long it has been since i lost dad.
The other date was the 8th August mum's birthday a week before a friend told me that she had a spare ticket to go and see the show jumping at Greenwich, just around the corner really i live very near. Her mum was going and brother and girlfriend, who i know, it was so apt! Mum would have loved the Olympics she loved sport any sport far more than dad did he was more inclined to go and tend the garden or his allotment than sit and watch football or tennis or show jumping which was her favourite, she rode horses as a child and encouraged me to do the same i would head off down the marshes each Sunday for riding lessons. One of my best memories is as a 12 year old or so galloping along the cliffs in Devon on our annual summer holiday. They knew me well enough now to let me hold back from the rest of the the riders and then gallop to catch up, i loved it racing along the cliff path as fast as i could go , very free and aware of the salt sea air and the connection with the horse taking me on this fantastic ride no theme park can give more of a thrill. So show jumping on what would have been mum's 90th birthday was apt very apt and i thought of her often as i watched them jump with bated breath.
Nick Skelton 
Typically the day i attended was the only day the GB team didn't win a medal!
The Egg Man!
I like the rest of the nation was enthralled with the Olympics and how well we were doing i took to checking the website occasionally for tickets, the last day suddenly tickets for the closing ceremony appeared, they weren't cheap but there they were! i clicked continue a few times till it seemed that yes they actually were going to allow my to buy them! oh boy should i shouldn't i? excitement took me over and i pressed the final button....once in a lifetime!!! me and Joe as the two youngest boys were going camping and if i had to choose i wouldn't i would have maybe not got them or gone with a friend. Adam still doesn't know that we went... It was phenomenal just to be in such an atmosphere. We arrived early and watched them set the stage then for an hour before the broadcast Andy Collins who met once and is noted for his ability to warm up the crowd, kept us amused and told us where they would like audience participation. We had to count down to nine and then announce it's 9 o clock which we seemed to do pretty well. When the pet shop boys came round we were supposed to all set our camera flashes off at once but that didn't happen. We were asked to sing along with Freddie which i think really didn't need stating and lastly to go Wooooo when Russell Brand announced that he was the egg man. I have to say that my favourite section was singing along to always look on the bright side of life, Dad loved it and i considered asking mum to use it at his funeral, but i didn't think she would have approved....singing it was joyous along with the national anthem in a roaring 80 thousand people crowd. We will rock you wore my arms out but not my voice, i even sang along to one direction! Was it worth it?.....i think so
Joe and I
Leaving the stadium was great fun a brilliant time with policeman posing doing the bolt or the mobot, having pictures taken with woman in blue suits with light bulbs on their heads.... flames wandering around as all the dancers etc didn't bother changing when they left. We sat on the DLR with a group of Morris dancers from Bristol who had auditioned for the games and ended up dancing with Eric Idle, they had green and red ragged tops and the bell on their legs of course jangling their way home, which happened to be in a tent in a garden in Catford where one of the troops parents lived....22 of them!! no expenses were given it seems only food boxes each day of rehearsal, their treat was to watch the rehearsal for the opening ceremony.
We queued for a cab at Lewisham with others who had been there, it was interesting how the spectators spread you could see them dotted around the bus stops in lewisham.
Finally another person i have met through our shared experience of having bowel cancer died last week. His name was Mark Browne, i never met him but we hooked up on Facebook a couple of years ago and since then we have exchanged messages a few times but in the main i just watched what was going on from a distance. He was out spoken and part of what i could see was a very loving family with three teens and a devoted wife, he was her Alpha a man's man he worked out in the gym and drove a van for a living up and down the country. He only stopped this a few months before passing, i noticed in the last couple of months that he had a problem going into hospital and then was shocked to see a pic of him, no longer the boys builder but very thin and looking quite frankly ill. He had a long time carrying on as normal like me, i truely feel his loss obviously from a distance, but it has also scared me a bit because of the rate of his decline, i have always imagined having time that deterioration would take place over a longer period of time. I think when you lose someone in your 'cancer community' it is always hard, but harder too because you wonder is that my pathway too? and it brings it home to me that it is likely to be me one day, i feel so well that i put those thoughts aside completely the reality of my demise is not present just yet, how will i feel when it is.....i may turn out to be a very different person than i am now, or maybe i will just go with the flow as i have done to date. Time to cancel those thoughts out i need to sleep......RIP Mark Browne x

Saturday 4 August 2012

Control

I was thinking tonight how annoyed i am with cancer for affecting who i am....not internally but physically yes should be the least of my worries but i didn't choose to have short grey hair, i guess i can change that but at the moment its a cheap option.
I have aged too.....maybe i look the same as i would anyway but i can't help thinking that it has happened more quickly.
Potassium deficiency turned me into an old woman hardly able to work up to a good pace anywhere i walked and if i did i was acutely aware that it was an effort. Early menopause, however i seem to be coping well in this area.....weight gain... comfort eating between chemos and my hands! and feet! The capecitabine has turned my hands into leather, tight dark coloured and itchy! dry skin cracked on one finger and my feet no better cracked and sore and dry and a funny colour.
Don't get me wrong i love the idea of getting old it is a privilege and one i will be very lucky to experience, when i see old people i envy them now their ability to get to an age where their kids are grown and they can play with their grandchildren, if only i was ten years older i could at last have experienced possibly my boys marriage or first child and know that they were old enough to ook after themselves. As it is the aim is to see zak to 18.....! 6 years and for goodness sake 18 is no age anyway.
I think losing control is why i sometimes take control in my own way. I am notorious for arriving at chemo sessions or blood letting at a time that i choose, i don't meant to be flippant or unreliable but i think it is my subconscious  control mechanism. I made a deal to leave hospital by going back to have an intravenous antibiotic...i didn't.
 Don't get me wrong i wouldn't do anything that would greatly affect my health but one doc had already indicated that she didn't think infection was my problem and neither did i....... i am still here!
Going on holiday,  deciding how to manage my hands and feet, arriving late being flippant about my situation, it's control i know how i feel, i don't like being dictated to.......maybe not the best way of dealing with things but it suits me!

Camp Bestival Hospital and re arrangements!

Drove off to Dorset to work at Camp Bestival on Thursday, wasn't a bad drive but on arrival i had to have a little kip on the grass in the sun. Zak and i headed off after my little siesta to get stores, noticing a sign to Lulworth Cove we did a detour and found ourselves amongst a mele of people with blow up boats and nets all prepared for their day out. It was hot so we treated ourselves to ice cream beautiful creamy gorgeous ice cream made on a farm Zak had a scoop of clotted cream and one of honey comb i had clotted cream and black currents and coconut.....lovely.
We then sauntered down to the cove, the smell of salty air was something i hadn't smelt in some years, not just the sandy beach smell but one that promised rock pools and seaweed in abundance. The cove is remarkably spherical with a small harbour entrance, lots of limestone and pebbles and kids clambering on the rocks with nets, a pastime as a kid i couldn't get enough off and peered in again as if a child looking to see if i would see a stickleback dart under a rock or the hint of a crab claw....no such luck too many had been there before. We found a reasonably comfortable rock and sat together looking out at the view and the various people passing around us, in the sun enjoying the ambiance.



We then set off for the supermarket only then to be drawn towards durdle dur, we followed the signs and found ourselves parked on a cliff top a little way in the distance was the formation of durdle dur but was a bit of a trek too far considering we really had other things to concentrate on...i was loving the time Zak and i weren't arguing he was enjoying the scenery as much as me and every time we passed through a quaint little village with thatched cottages the city boy would say oh mum we should come and live here!
We walked along the cliff a little way and then returned to the car and after driving for ages ended up in Poole where we bought the goods required. It had been a great day and ended with Zak and i sitting on sofa's in the middle of a field in Camp Bestival underneath the stars chatting.


That night in the tent was freezing! i didn't sleep until 6.30 when the sun appeared to warm my bones i finally appeared on the stall at 10.30. We worked pretty hard i think Zak was warned to stay away from the front of the cake stall but couldn't resist instead of wandering off to have fun he much preferred getting involved with serving customers. He added up ok and cut good slices for the customers, he told them what each cake was and was very polite. In fact as Lorna and Chunk whose business it is commented that he had been more help than the girls who had come along to help in the end. He worked like a trojan apart from when he met two girls whose mothers worked on the churro's stall....free churro's!!! he would on occasion hang out with them or they would come and stand byt he stall whilst he served chatting.....and giggling, he would later develop a fan club of another couple of girls who thought he was 'cool'
That night he hung out with the girls and i went to see Hot Chip it was 3 am before i returned and i could see him fast asleep in his tent. Again another cold night and less sleep my legs ached and me feet hurt but the stall was busy so time went quickly. I had another snooze by a tall fence keeping us away from the general public.....i was so tired i didn't notice it fall over me without hitting me and Chunk moving it back into position again!
One of the things Zak loved was that we got to camp in the main area behind the stall, i also managed to leave the car there too....no lugging ruck sacks and tents over miles of fields to get to our camping position, he thinks i should bake my cakes and have my own stall at Glastonbury so that we can camp near everything again!
That night we went and met up with friends of Lorna and Chunks who have a paella stall really nice crowd...we went on to dance in the speigal tent which was packed the night before there were far less people when we danced to discs made of shellac!
Zak loved the late night out with us and again was just such great company no moaning or complaining we headed back before the others as i needed to try and sleep.
The last day although Lorna encouraged me to go and see a band i really didn't have the where with all mainly because my legs ached so much i had cramp in the tent and then on the stall my thumb suddenly went into spasm, really weird.
We completed the day saw the paella people whilst Zak hung out with his girl friends again then i headed back having packed up in the morning i was ready to get home to a comfortable bed. I found Zak in the stall and we got into the car around midnight and headed home. I took a couple of stops to sleep and soon was sooo pleased to be back at home. I went straight to bed and asleep.
I woke up around 9 feeling really rough i was hot but felt cold and realised that i must have a  temperature. It is drilled into you when on chemo that you must! notify the hospital if you have a temperature so i called suite 8 Jean the chemo nurse answered and said i should come in. I had! to have a bath first and then fell asleep again she called to tell me to come so a friend came and helped me there.
Turned out i had a temperature of 38.4 so Jean gave me a bolus of antibiotics as they thought my picc line which had been infected and taken out the previous Wednesday was the cause. The dose immediately made me gag and i started to retch....... about half hour later i did actually throw up nicely in a bowl but the poor people hearing me gag in the suite. They decided to admit me and a porter wheeled me to Laurel ward.
I spent two days there with regular intravenous antibiotics and regular bloods. Later the first day they appeared with a couple of soluble tablets, i had a low potassium and needed to take the foul tasting tablets in water.
I also had low calcium my bowels were really loose and probably contributed to the mineral reduction. When i was finally released after a deal to return that night for another dose of antibiotics......i didn't ....i felt better than i had in ages suddenly i wasn't walking like an old woman and my legs had stopped aching!!
Who knew! ? i don't think i had an infection neither did one of the doctors, i think i was just run down but i would have carried on with the aching legs and lethargy that i have had for a few months. I feel sooo so much better and more inclined to cook and get things sorted and take the poor dogs for more walks than i had been doing.
The days in hospital co incided with a trip planned to Manchester for an Olympic match between Morocco and Spain my friend Tony drove the boys up for me and came back i had to arrange last minute train travel to get them back which cost a fortune, but they had a nice little adventure together up north!