Saturday 17 March 2012

Another Taken By Bowel Cancer

As i get more involved with people who have been affected by bowel cancer i become more aware of what a deathly disease this is.....i hadn't realised already? well yes but i was diagnosed in Aug 2007 nearly five years ago, i still feel 'normal' i look 'normal' i am still working although i am soon to give up, it hasn't affected me as quickly as others. Two lovely people who i met through having a shared experience of Bowel Cancer have died in the last two months and whose blogs i followed on here....Carole and Lisa Lisa died on the 8th Feb and Carole last night the 16th March. I am so sad to hear of their passing and i think of their poor families coping without them for the first time.
It also brings it home to me that this is the path that i shall face at some point, and this is something that my boys will have to face in their future. I have been lucky so far, Carole was diagnosed in 2010 and had such a hard time since then, i need to make the most of the time i have whilst i feel well.
I had my second round of chemo on Wednesday and even before i left the chemo suite felt rough, not long after arriving home i went to bed for the duration but had to wake myself up to take chemo tablets later on, i was also physically sick just the once but this is not usual for me. Three days on i am still feeling rough a metallic feeling in the moouth and awful peripheral neuropathy, i was actually in tears on Thurs with how i felt and sods law it hurt like hell to cry!!! that'll teach me. It is gradually wearing off but the thought of having 6 more cycles makes me feel ill in itself. I hope that in a week or so i will be back on form and forget how this felt, it's a bit like childbirth give it a bit of time and you forget how bad it was. I have! to persevere, oxalyplatin worked well for me last time and the Avastin seems to be relieving the pelvic bleeding already, but goodness i understand how people can just give up. I want some more quality time now i am not working to squeeze holidays and things into with the boys, it worries me that this will become so debilitating that it will eat into that. The hope is that it affords me more years to sort out my affairs and make memories for the boys.
I am rambling now time to go.
RIP Carole x x x

Friday 9 March 2012

More info on the chemo trail.

So i haven't posted for a while so i need to recap on what has been happening over the last month or so.
I had my first cycle of chemo, Avastin Oxalyplatin and Capecitabine tablets. The infusion went ok i sat and worked on some staff competancies on the laptop whilst i was sitting there. Dee the chemo nurse who i knew from 2007 was there when i had my PICC two days previously, during my last cycle last year she was still on maternity leave so it was really lovely to see her again. She wasn't there on the Thursday though so i made a request to change my day to  Wednesday just so i could see her, it makes a huge difference to sitting there all day.
Went home and later that evening went out to the book group. Went to bed as normal and found that in no way could i settle to sleep, the Dexamethasone strikes again! it is a steroid to help minimise sickness but i react badly to it, finally fell asleep at 4am.
The Friday feeling very tired and a little rough and my shoulder started to ache....not the one with the PICC though come Saturday i felt awful, not nautious just not well somehow, i do remember thinking at one point if this is going to be how i feel i don't want it anymore. The boys rallied around really for the first time so i must have looked bad, and then in the evening i had a nose bleed my first one ever! Poor Zaki was in the room with me, he has had them often but my nose was streaming and he ran round to get paper towel for me, he wrote on his facebook status my 'mum is ill and she had a nose bleed i feel sad'.
By Sunday i was feeling better, for the next week i went sick from work and just vegged out infront of daytime television. I remember on Saturday i felt really well and got back to getting the house in order and doing the washing. Since then i have been fine, we wonder whether the awful pain in my shoulder was due to deferred pain as there really wasn't any reason for it to have occured.
On the Friday i also had a visit from the Mac Millan nurse as i have now been referred to their team. During the discussion i became rather weepy, she was lovely and i think she will be just the kind of person i will want to deal with when the time comes. We have agreed that a counsellor will call and make an appointment really just to go through how to break things to the boys when i think i need to. I am stil hugely affected in this decision from the experience i had with my dad and to a degree my mum. I knew Dad had cancer for 9 months and that i was going to lose him. This was compounded i guess by the fact that he was the first person i would lose who meant so much to me so i was getting my head around that emotion too. Everytime i saw him all that was in the back of my mind was that was i going to lose him and the feeling of holding things in is still tangible trying to keep up spirits everytime i saw him rather than break down in front of him. In hindsight this wasn't the best thing to do but this was nearly 16 years ago and i was all over the place to a degree.
I just don't want my boys to look at me and start to miss me before i have gone, i want our days to be positive and normal as much as possible whilst i am still feeling totally normal myself. When i start to feel that the cancer is affecting my health then i think there will still be time to let them know that i won't get better and prepare them for life without me as much as i can.
I went back to work on Tuesday and recieved the letter confirming that the OH has approved my request for early retirement on the top tier which means that i get my pension made up as if i had finsihed at 65. Everyone i tell is so happy for me, and everyone says it is the best thing to do and i know it is, but for me it is bitter sweet.  A very scary step, i still have bills to pay and a life to lead and i hope that there is enough to do that.
RIP!
The other thing that has happened too is that i have the higher rate of DLA. I took my lovely car into the garage yesterday and was told that she can't be saved. The engine is on it's way out and can go any minute. So weird because now i have DLA i can use the mobility component to get a brand new car, i get servicing, tax, tyres windscreens, insurence free and a new car every three years for a bout 50 quid a week out of the 125 a week DLA i get. I feel a fraud to be honest but without it i wouldn't ever be able to afford a new car let alone a brand new one, i am going to make the best of this to get the car i really want may mean up to 2,000 pounds advance payment, but i will see what i can sort out. At least this is rather exiting!!