I feel almost like I shouldn’t write tonight as its just going to be one big old whinge fest !! Well i guess that you warned.
I woke up when D did at sodding 5am as usual well in fairness it 50/50 between 4 and 5 – its a killer coz you just know those last few hours of sleep til 7 or even 6 woudl have been the best sleep you had ever ever had!!!
anyways – coz i cant be trusted not to fall over and cause lots of paper work i have carer but i dont like that word so we will just say i have an S – she ace actually part of the family now – anyways she helped me shower without getting my arm wet – with the usual threat of death if she touched said are (its still as bloody sore). On the way out of the bathroom the bloody motion sickness from yesterday came back with vigor. head in bowl – S telling me how much she hates sick – not that i am particularly relishing the feeling !!!!! I had an anti sickness tablet we had some left over from when we all had a terrible tummy bug in October so we just crushed one and pumped it down the tube – later we found out that’s a but of a no-no buy hey, it worked –
The post arrives and there’s my appointment schedule for my radiotherapy……… 41 bloody appointments that’s not including consultants, physio, speech therapist, max fax, and whoever else i see – I saw fit to order a new calender – a HUGE one with space for each person, no more cute doggie calender.
Then the nurse turned up it was a new one so i gave her the “i will not be responsible for my actions if” you touch mu hand – she took it in good humour but i think she realised it was at least partly true. She went on saying ohhh arrr thats big ohhh its looking wonderful etc etc .. tbh it just not something i can get excited about funnily enough – its a bloody great hole in my arm whats good about that !!!
Then my hairdresser turned up and shes lovely – she quietly started while me and g put the world to rights and listened mt me ramble on – not even mentioning the difference from last i saw her, shes really good at making me look less like a scarecrow which has to be good.
Then more meds and a doctors appt for this sicky feeling. Turns out the surgery have a Monday meeting and they talk about all the “interesting” cases and i now fall into that category – so essentially all the staff know, and you can tell – i bloody hate that – overly niceness for the poor cancer stricken woman – they might as well stroke my hair and say there there !!!! grrrrrrrrrrrrrrrrrrrrrrrr
anyways – doc recons its possibly lots of build ups of fluids etc and her words “clinical exhaustion!!” now my reaction which thankfully i managed to use my inside voice for was “bollox i have a child who doesn’t sleep and i fooking hurt of course i am tired”. but in fairness she is actually a very nice doc and sorted out some tube friendly anti sickness gloop apparently what were doing wasn’t ideal due to dosage issues, but hey, it worked so i am happy. Shes also put me back on something called baclofen which is for my twitches and muscle spasms in my legs which just tend to be annoying until you factor in having to be extremely still for radiotherapy lol.
she did ask how i was feeling /doing and i just said “its all just shit” which is pretty much how i feel – i am fed up of feeding pumps of feeling crap of needing help, im fed up of my sodding arm, of not being able to eat a friggin big mac, and no matter how many people say oh wow your speech is great (for a person who had half her tongue cut off and it replace with part of an arm) its still not my voice – i know what my voice is like and this is not it – as i am typing i am thinking faster than i am typing and i am saying the words in my head in MY voice … it bugs me that if i am tired i loose the ability to speak and swallow.
I guess i have just hit a hump – i am thinking why me i am thinking fuck of world and leave me alone – i did warn you xx
attempting a smile xxx