I haven’t blogged for ever and I keep getting asked if I am ok as I haven’t blogged – I am ok – in my own way !
I thought I would start with a quick run down of whats been going on I am seeing Mr Moss 4 weekly and at that appointment I also see speech and language (these are also th people to help with swallow and therefore eating – more about that later on) and I see my nutritionist who wants me to “make up” calories so I have the right amount so I have free reign over ice cream …
OK arm pic it looks a bit paler in this picture its more pink in real life – its fully healed and we are using massage to stretch it out as the top bit on the left can get very sore as the skin is so tight. But overall I am pretty happy with how its healed I do still hide it a bit not because anyone has said anything but I just feel more confortable.
The next few pictures are to show how much weight I have lost .. im now a UK 14/16 and was a UK22, loosing weight that quickly really messes with your head, you pick up a top size 20 and I go to put it on – it drowns me. I wont need to shop in Evans ever again, im some ways im more confident with my new body but I most definatly need Gok Wan to get me into some magic knickers – I haven’t got baggy skin or anything its just a mummy tummy after 2 C-section and my pelvic surgery.
NOw this is a bit of a random picture but I wanted to share a friend of mine is going to make one of these for my son for Christmas, which he is going to love, his aunty JoJo got him the first DVD for his birthday which was 10 days ago, he had a great day he got a BMX scooter, a remote controlled helicopter, £65, 3D bedding!!!! oh and a Darlek alarm clock which projects the time on the ceiling. Then he went to school hee hee, we then took him to his favourite place to eat out, Harvester, he loves the salad bar, actually so does D. everyone (im not inc) had a great meal and pudding and off we trotted back home for some helicopter fun … it was very funny to watch especially hubby as K expected him to be able to do it straight away and he did not, he was as bad as K but they had a good laugh.
You might remember me taking a questionnaire about my low moods etc – well I am now on anti depressants and have been for some weeks now and am starting to feel the benefits – I spoke to both my GP and Mr Moss to said its almost unusual for cancer patients / during or after treatment not to become depressed. Weirdly hearing that its normal made it easier to talk about and even put in here.
I had my first “scare” (that should read paranoid crazy lady moment) I hadn’t had a period since May and I started to become aware of this and think of it more as August progressed and I got more worried thinking – has it spread – but I had a clear smear in January, but it could be, what if it is, it could be, you never know omg it is… im going to die .. etc etc. But being the sensible person I am I bottled this up and said nothing to anyone until my amazing health visitor popped over and I turned into a snotty blubbering squeaky voiced mess, she proceeded to get me an appointment the next day I think it was, anyway G came with me as by then I has fessed up my crazy. So I explain it all to the doc as she says you have lost a lot of weight you have been through soo much your body has probably just put it on a back burner for now – she then said but as we have spoken about it it will be here within the week, something no one understands but it happens. We left and 5 days later the doctor was proved right.
I guess that’s what I have too look forward to for the next … ever, as you never forget that day you never forget the biopsy or the telling people .. so I think what I am saying is I will always be scared in one way or another that its going to /has come back and it will always have that hold over me.
I know this is turning out to be a long post but I just wanted to update about my eating or lack of, I can manage Weetabix most days – some days it feels to sharp in my mouth and leaves my mouth and tongue so so sore. I have tried lots of other things mash potato different soups and have stolen food off everyone’s plate to try and eat and I haven’t found anything that I can eat without it causing burning pain or making me choke and turn a lovely shade of blue. This is starting to piss me off now as I am fancying food – I see or smell something and want it but I cant…. very frustrating
anyways I need to finish a bit of sewing so I will leave you with a non wonky smile
Its been a long old time since I last blogged this is mainly down to feeling thoroughly rubbish – which I more recently I found out was due to having an infection.
A week ago Friday I was rushed into hospital with a temp of 40.6 and I was totally out of it ! On arrival at the hospital I had a rather batty nurse – she was lovely and looked after me very well- initially the doctors suspected I had a chest infection – so I was sent for a chest x ray and ten moved to ward B16 the respiratory ward – i was given my own room too, most probably due to the d n v but either way it was a bonus. I has various blood tests which showed i had a raging infection but thy dont show the location either so – i was having IV anti-biotics 4 times a day as well as my usual cocktail, although i had my syringe pump removed and now i just have cyclazine to use as and when – which is a much better solution I think.
One night i was happily watching Eastenders and i hear mumbling… i turn around and see a old lady with long grey hair and a zimmer frame looking at me, I smile out of politeness ….. she turns her zimmer and heads her way in to my room still mumbling and grumbling . I press the nurse call button….. she sits in the bed side chair “where is he” she says i asked the obvious”who” she replies “da” she replies i told her he wasnt here, and given she was about 90 i did wonder. Eventually the nurses came and ushered her back to bed.
Each day I was promised the gastro doctor would come and see me for both the D n V and to rule out the infection being appendix or bowel etc …. eventually turned up and was terrible, “so you have cancer” was one of his sentances. Anyways he wants to see me as an out patient.
All throughout this i was struggling with seriously low blood pressure 75/48 and alike which was and is making me feel all wooshy headed and collapse. One time was a corker i was on my way back from the loo and my head was spinning and i just went slap straight onto the floor – i had to call for the nurses to help, including a big chap, whos first words were, maybe next time we can meet over a drink lol … they helped me up and down i went with a bang albeit slighly ore controlled this time.
The conclusion of this week stay in hospital….
infection of unknown location now gone
Low BP – ignore and it will go away
D n V -ignore it and it will go away
So i am now using the wheelchair much much more incase i fall. its extreemly frustrating – im keeping my fluids up as im told that my help.
But Im home and i missed my little people loads D is growingup loads and wants to be so much like mummy and K who is nearly 8 has hit teenager – and is a lot of fun. G has done a fantastic job of keeping the house going – i just wish i could help more.
Im smiling because of my wonderful hubby and kids
It seems like ages since I have updates – I actually think its 4 days which I guess in blog terns is quite a lot. Truth be told I have mostly slept since my last blog.
I mean that literally all I seem to do is sleep, one day I went for a nap at 1am and woke up at 4am .. talk about sleeping your life away…
So the syringe driver that I went home with si working well I haven’t been sick once (touches wood), I developed a lovely allergy to the dressings
, but thankjfully the district nurses had various ones to try. The district nurses have been amazing – I have known some of them since October with my bback so its lovley to see them, yjeu klnow the kids they know the dogs and most importantly they know me and know I look when I am ok. They currently come out every day and refill my syringe driver and whilst they are there every other day they change the dressings on my arm, which incidently is looking fanbloodytastic its amazing here is a pic…
I had the doc round the other day, my GP to see how I was and stuff – the mutual decision was made to start happy pills as I have emotionally been struggling, so rather than having them for depression per say, its situational at the moment. But who knows – I do have a history of depression, from regular depression to post natal. We are just waiting for the medication in liquid form so it can go down the peg.
Talking of the PEG im still 99.9% reliant on the peg now – I am trying things – the other day I tried a cuppa soup I managed a few tea spoons of that and a tiny bit of mega soggy bread ! and I have had ice cream a table spoon at a time. I am getting in creasingly frustrated wit this – I have time that my swallow just doesn’t work – the mechanism just doest work – I have time where I choke and tiem where the pain is simply too much… and that’s all just with water. I try to taste food from g’s plate and its like I have forgotten what to do with it. But its not likr I can taste it anyways….
I have found myself making goals for the future some of which may sound small or pointless but for me atm they seem huge
• Eat Christmas Dinner
• Go On Holiday 2014 (pennies permitting)
• Not be afraid of eating to drinking in front of people
• Not be so self-conscious of my facial/ mouth problems
• Make my sewing our second income rather than a hobby ..
• Be a stronger person
Now its time to go back to bed –
still smiling xx
Well friday, after seeing the palliative care doctor (not end if life, but symptom control), who added as drug to my syringe driver and gave me the ok to go home.
This is Sarah the Dr I saw and she was THE kindest doctor, she was amazing and I even loved her dress (it was from … Pepper Berry and yes i asked lol)
I can honestly say she was the most supportive doc i have ever seen – she took on board your concerns and made sure you were feeling ok about the decisions which were being made – which inevitably would affect me.
Just before i left i spotted this to, a LEAF – i asked what it meant …. I was told by an amazing health care assistant who has helped me loads (pic below) thats they place leaf pictures above the beds of the patients who are at risk of falls’s. I thought it was great.
Especially as i did have a fall whilst i was in hospital and didnt want to shout about it ..
I got home via hospital transport and i will admit i found it bloody hard work – i was so bloody tired and jiggling round didnt help, I got home to discover that the syringe driver (as per video) had come out so we had to call out the district nurse!
The next day, saturday, my aunty,Uncle ands Nannan came round it was great to see them and the kids had a blast – I love that my littler miss “i dont like people i dont know reallly well” loves her great nannanand great aunty and uncle so so much
We then went off to the hospital to collect this … and for a few appointments – i will update appts later as i am soooo tired
Who would have thought it – i certainly didn’t – its seemed forever away in the beginning… but I’m there – although i cannot take all the credit – i have had a lot of help.
I did have some bad news this week thou, friday i has the speech and language therapist (SALT) show up … she asked how eating and drinking was going – I said eating had pretty much stopped as i couldn’t taste and it hurt too much so not even eating for taste anymore, and drinking was ok, apart from the choking! RED FLAG to the SALT — I will be right back she says and off she goes – comes back with cups a jelly a yoghurt and a spoon. I am going to do a swallowing assessment she says … she says she will spoon in water and i am to swallow and she will have her hand gently on my throat to check the mechanism of my swallow. Sounds ok to me except o bloody choke about half of the time … i ask to do it a different way, but by then i am tired so choke more. she then goes and gets some thickener. now rightly or wrongly (due to personal experience) i associate this with very sick people. She goes ahead and shows me how it thickens the water and i try it and yes i didnt choke but, I WILL NOT BE USING IT not how not never… its like wallpaper paste its horrible the texture is just awful. Anyways out of this I am officially diagnosed with an unsafe swallow and am advised not to even try food and not to drink unless it’s thickened !! oh and if i do i am at high risk of chest infections etc !!! Now is it me or is that a bit shit !
Saturday i had a catch up radiotherapy (i missed 2 last week) and then i slept till sunday lol – the tiredness is killing me slowly.
Today I had radio then dr’s he was asking about my sickness and those of you on my Facebook page will know that i had had 2 days of not being sick (yes past tense). he advised cutting out one of the drugs – and i have felt nausea most of the afternoon – i am hoping its a fluke and we shall see what the morning brings – but i do have a bowl ready ! – what a sexy life i lead – its practically sex and the city lol. Other than that he is happy – then SALT and Nutritionist – 2 people who i used to fear – in a im gonna get told off by teacher sort of way .. so i sit down – we work out im having 1000 -1500 kal a day on a good day and sometimes as low as 800. which even i know isnt great but turns out i am maintaining my weight so she lost that fight although 500mls of water in a day BAD SHOW had to agree on that one.. then SALT she asked if i had used the thickener – I said no and that mentally i wasnt there – that it didn’t seem right ! which is true it really doesnt and I don’t think i will be using it any time soon.
Pain.. Ive been in quite a lot of pain this week my back, neck and mouth/throat… so I have had to take oramorph a fair few times on top of my normal medication. but i guess that why i have it, to take when needed.
I guess i am feeling defiant atm – very much – you say i cant do something so i will – i will prove you wrong, If i am 100% honest it probably stems from fear but i am soooooo not there yet – for now i will happily choke on water and feel crappy each time !
I can honestly say I have only cried a handful of times since diagnosis and that includes when i was told and even after surgery … see i don’t like crying, i worry i wont stop or i will loose control. but tonight i am in a lot of pain, my back isn’t liking the bed that i lay on for treatment and given my surgery was only October im still a bit sore – and my mouth feels like a major dose of tonsillitis and we all know that sucks … mix that up with general knackeredness and a dash of fucked off with the world and I CRY.
G suggested i write in here more often how I am truly feeling ir the bad stuff and not to worry if people don’t like it or read it – just to write it down.
So here goes I am frustrated, I have a friend moving house and normally i would have helped even if it was making the tea.
I am pissed of i haven’t been able to “use” the fact i have recovered from my back surgery.
I feel like a prisoner, who is “exercised” everyday to addenbrookes and back
I wish someone truly knew how i was feeling, how i just want to scream and punch things and how certain people simply could not fuck me off more if they tried .. this is going to sound very “pot calling the kettle”.. but this person is so wrapped up in their woe is me life — which to so many others would be a perfect existence.
I believe in Karma and have recently witnessed it in full force, but if it does exist, why have i had all the shite…. im often reminded i was a shitty teenager and a terrible toddler who never slept, but to my recollection i haven’t done anything too bad, other than some cracking arguments with my mother which no doubt were of my making and my “fiery nature”. When i have been able to to have done volunteer work – even if its spending weeks making some bunting for a children’s charity’s new building – its not much but they appreciated the thought .. i volunteered at a special needs school – i taught children basic sign language .. and i always gave a shit – i would help people where i could – even if its just an ear to listen or a shoulder to cry on… I set up and now run a on line support group for military spouses with additional needs and or disabilities ..
Maybe i have asked too much of people – actually i am certain i have, which is why I haven’t seen anyone well my parents 4 ish times since diagnosis, my friend E is moving so doesn’t count, nor does H as she’s not too well … but thats it no-one …. im lonely – thats not to say i want to inundated with people i dont know well, hugging me and coming over for coffee etc and tbh i would probably find that hard to deal with – i guess i have realised i dont have many friends – more people i know, you know.
its sad really for a woman of 30 to say … which sums up how I am feeling, sad.