Together we will beat cancer


Greetings ish

11 Nov 2017 05:41

Suppose the best way to start things off is saying "hi". so "Hi" to everyone on here. 
Im 40 years old. Spent the last year going through prob the worst time of my life.
i have been through Motorcycle accidents. Been shot at, stabbed (kinda self inflicted.. never show off doing that alien knife trick.. bad idea.), electrocuted (also never hold onto two ends of the same cable and ask a mate to "flick the switch on. lets see if this will work")
Im a bit of a Joker at Heart. always like to make people laugh..  i see the funny side to most things.
My Epic Cancer started last year.. around this time.. fell down some stairs. hurt my leg. first thoughts was its broken. went through A&E etc. they aimed for a thrombosis at first. then in Jan found a "Lump". size of a matchbox.. By start of april i had grown to wrap around my thigh. April 24th it was removed at Stanmore RNOH after i was given a few days to live cause of its aggressive nature. and my red blood cell's plumiting and unable to replace them. 
it was also extremely painful. the NHS pain scale of 1 to 10 doesnt come near the pain i was going through.. i was scoring it in the high 100's. i have had broken bones less painful. 
I went through 30 sessions of experimental radiotherapy at UCLH. Great bunch up there. love the staff to bits.
I ended up with a 1.2kg Pleomorphic Grade 3 Sarcoma removed from my Left Thigh. which also meant i lost the Left thigh muscle on that side. i got to keep my leg though.. i had signed the sheet to say take it.. 
you think its all over. ok so monthly chest X-rays, phisyo forgot about me. 4.5 months down the line they have taken hold and pushed to get me walking without a brace etc. not working.. without my brace my knee collapses.
Anyway..  Been back to Stanmore today.. Had a Chest X-ray. so thats all clear.. Im thinking. "great.  quick appointment and im out of here for 3 months". 
i get on the couch. jeans off and the Doc is looking at my leg. he knows from the letters that i am still in pain.. still way too much pain really. and its been a nightmare. i expected to be pain free, but the stabbing pain in the middle of my thigh. burning pain at times. way more than i expected. but then i didnt really have an expectation of what to expect. (if you get what im saying). 
he starts poking around my scar..  the scar runs from the knee to my hip. 
finds a "lump". at which point i leep off the couch screaming..
Yup that hurts.. a Purple lump around the site of where the other tumor was taken..  almost the size of what the other tumor was when it was first descovered.. 
Can't do a MRi scan.. (i have a ICD in my chest.. another failsafe thing cause of a dicky heart at 35)
UCLH had prebooked a CT scan for Next friday. so he has said he will get the info/data from that and have one of their Multil disaplinary meetings they do on the following friday to see what is what. although not ideal as the CT isnt perfect. 
Told me not to worry but seeing as a secondary growth is possible. he will treat it as such until its proven otherwise. 
at which point the appointment was over and i left..
Queue the floods of tears when i got back to my car.. I dont think i have cried so much in ages. didnt even cry that much when i found out the first time.. 
reguardless of what its doing to me. i know what effect it had on my parents.  My mother didnt eat for 2 weeks and couldnt sleep. and she is a A&E Nurse too. 
I have since told my father about it and the appointment. (i still live with him. he is kinda my carer)
but i dont know how to tell my Mum. 
thing is i dont know how im going to deal with it again. 
tried sleeping tonight and all i kept doing was dreaming about ways to end things. 
and i know thats not good. 
i was just starting to get my life back in order.. start up my own company. get things going in the right direction. and now this again..
its like a train has derailed and slammed into my head. 
I tried talking once to a Macmillan Nurse, but after 10 mins on the phone i hung up. i cant do talking on mobiles to strangers. not like that. 
funny enough though typing things out helps. 
a bit.
Im not looking forward to things if it is Cancer again. 
already had the maximum life time amount of radiotherapy on that thigh. 
the area covered was from my knee to my groin.  right the way round..  so there is no boundry layer
although the RT was experimental.  its possible it might of missed something.. 
so Im faced with another Op and maybe Chemo. which is the part that scares me the most. 
so yeah. im scared as hell right now.. 

Re: Greetings ish

11 Nov 2017 08:44 in response to JesterTiger

Hi there ... well you've been through the mill ... no wonder you feel like this, it's so normal as think no matter how strong we seem , there's always days we just give in and want to give up ... I've been there a few times ... what works for me is a couple of days saying poor me, admitting I'm scared ... curl up in bed ... then go right enough is enough... get back on that roller coaster and hold on tight and know it's gonna be a bumpy old ride ...  and ready for getting in the ring .... this cancer wants to see us give up, wants us to crumble and it has no compassion... then it sort of wins ... all the time your taking it on , your giving it a kick down the road ... it might take us in the end but we'll take it on every step of the way ...

I think if you could sort out your pain more , you'll find you can cope better ... nothing worse then 24/7 pain ... so have a word with your oncology team ... glad it made you a tad better writing it down ... we're here for ups and downs ... so hold on in there ... sending you a virtual hug ... chrisie xx

Re: Greetings ish

14 Nov 2017 01:38 in response to Chriss

im on Solpadol 30/500 which i have been on now for around 11years (pain is a constant thing in my life anyway).
but the pain in the leg im trying to take the edge off using OxyNorm 5mg/5ml. 
cant drive on the stuff. but it knocks me out at night so i can sleep, mostly.
had a bit of a breakdown in front of the Dr this morning. My GP. poor guy has no idea about what goes on as the cancer team doesnt keep him in the loop. 
the first thing he knows is when i turn up and say, "oh btw i have a lump again. its painful and its getting bigger"
He has put my next med's review at 2 years from now. so should stop the constant nagging by other GP's at the surgary to check my meds.
the lump is getting bigger a bit too quick for my liking. 
only really noticed it last friday. it was a small egg size. now its a extra large egg size. 
its a stabbing tearing sort of pain too.. been down this route before.,
spent last night being very unwell. couldnt eat. most came back.

got chatting to a care nurse at the GP about head stuff and i let it slip that i have been having the scary dreams bout ending it etc, and i had a feeling she might of hit the "dire need of help button" if i had said the wrong things.
i dont think im at that point right now though. yes i thought about ending it already. i dont want to go through this anymore.. im really bored of being unwell in my life. everytime i go and try and do something to change my life, move on with stuff, my health throws a spanner in the works. 
was driving the car and thought how easy it would be to full throttle and aim for a tree or a wall. 
but my mind slaps me hard and comes back with "thatsgoing to hurt, its going to be messy and how dare you think about hurting the car" (i love my car. built it up and its my pride and joy)
im going to have a chat with a group called "the Olive Branch" and see if i can chat to someone there about the stuff thats making my head go round the bend. 

Re: Greetings ish

14 Nov 2017 08:04 in response to JesterTiger

Hi there ... have you tried tramodol for pain... I'm on long acting one for the problems in my back ... one in the morning, one at night ... they work for 12 hours ... may be worth asking your g. P... the olive branch sounds promising ... worth giving it a try ... I know what health problems are like, and like you sometimes I'm sick of being sick ... so hang on till you've tried the olive branch ... sending you positive vibes ... chrisie x

Re: Greetings ish

16 Nov 2017 04:00 in response to Chriss

tried tramadole before...  used to have 30mg tramadol and they did something for a while, but then they became inaffective.  even tried the Oxycodeone slow relase ones recently but they gave me savage cramp. 
the Oxynorm liquid is taking the edge off things right now. Dr has upped the dosage a bit so its a lots more effective at knocking the pain off, but it tends to wipe me out.
My leg is suffering though.
its really starting to swell all of a sudden.  the lump is visable under the skin. (last one tbh didnt take that long before it started turning huge)
and the constant feeling sick anyway doesnt help things.. although im still eating for the time being..