Monday, 31 May 2010

Blog No. 71.

I am no longer going to apologise for my delay between entries here, Mainly because I can't predict how I am gong to feel one day to the next, or sometimes I have personal reasons for not writing an entry. I do want to do one every day but right now that's just not possible.

I am starting to feel better, but one day I can feel OK then the next I can feel worse. I am starting to eat, but really only a meal a day and a few things that I pick at. Even the meal I eat is half the size of what I'd normally eat. Today I bought shorts for my trip to Brighton later this week, and regular sizes no longer fit me, I had to buy kids jeans, 13-14yr old is the age, end even these are a big too big on the waist.

I am disgusted by how thin I am, I have a spine like some Alien creature, which is very uncomfortable, especially in the bath. I was given the handy tip of putting a sponge underneath the base of my spine when in the bath.

My knees dig into my legs when lying down, and have caused bruising on the opposite leg while sleeping. I now have to put a pillow between my leg when lying on my side. Vile, people often say they wish they could be thin, but I wish I wasn't this thin. It's affecting my life. Not just physically, but mentally.

I don't have the self confidence I once had. It upsets me if I catch a glimpse of my body in the mirror. The last time I properly saw myself I cried. It had been a long time since I'd looked before that time. So the difference was huge in what I last saw of myself. I have never had body issues, not saying I had a high opinion of myself, but I have always been happy and content with how I looked and my physique.

Now that has all changed and I hate it. You can all say what you want but this is a very real opinion that I have. It's how my body looks, not how I am perceiving it to look. So please don't tell me I don't look that bad, I don't want your compliments or sympathy.

The thing that's annoying me now is the god damn itching from the painkillers. My whole body has it's own turn and needing a scratch and when I get rid of one itch the next one appears. It is a lot, lot better than the pain I suffer from.

So as I mentioned earlier I am off to Brighton on Thursday. I am going with my sister, we where going to go to Barcelona but due to the B.A. strikes, the airfares had all gone up to ludicrous prices. Was going to cost about £1,500 each just to go for the weekend. Hardly worth it.

So I decided on Brighton as I want a beach and a bit of a cosmopolitan atmosphere around me.
I need to just get somewhere and relax. I have a couple of friends in Brighton too which will be nice to catch up with.

So as I now go and start my washing for going away, I shall leave you my thought of the day.

Whats goes up a chimney down but, wont go down a chimney up?

Peace Love and Brighton rock...


Monday, 24 May 2010

blog No. 70.

I am so fed up pf feeling crappy and tired. It is beginning to take over my life and my mind. I am finding everything such a struggle and effort just now which is so hard and difficult. I just wish that when I next wake up I feel fine and dandy, but it doesn't work like that, which is quite sad. I have lost so much weight and look like a big of bones. I used to love food and eating, it was a passion of mine. Now I feel like food is such a battle ground for me. I kind of feel like I would be happy if I didn't need to eat again.

I had my birthday party on Saturday. I wish I was able to enjoy it more than I did, but due to lack of energy it was a struggle for me. I got some amazing gifts and cards and again I would like to thank you for them and thank you all for coming and dancing. It means a lot to me it really does.

I am starting to eat a bit more, I hope that this week my body shall start to repair to itself. I do not know how much longer I can go on like this. I feel like I am being tortured and I just want it to stop. This is no life, and not how I want to continue. But maybe now I am starting to eat I shall return to life but it will be a slow process.

I don't have to much to say other than another thank you to all of you who made Saturday so special and beautiful for me.

My thought of the day is...
Keep the music inside you and move to the beat.

Peace Love and Music,

Tuesday, 18 May 2010

Blog No. 69.

I keep trying to find the words to start this blog, but they don't seem to want to flow today. If this is how you find this news out and I haven't told you then I'm sorry, but it's so hard to tell so many people you care about bad news. It's bad enough being told it yourself. But passing it on has been a task for me a very difficult one.

Yesterday I found out that the chemo hasn't been effective and that the cancer has advanced even further, everything has basically gotten bigger. I asked what does that mean, how long do I have left to live and the response was simply and devastatingly, "Months". He then said there maybe other channels I can go down but need to take a month off treatment first.

My sister was with me and seeing her upset like that has broken my heart. I have passed the news on to as many people as I could face last night and every time I told someone it was like a little piece of me was crushed. So if this is how you find out then I am sorry but I couldn't tell anymore people.

It's strange as I feel fine, not amazing as still hardly eating and have a sore back, but I feel fine, definitely not like I am dying at all. I know you will all tell me that doctor's get it wrong and people live for years. I know all this I haven't had my head buried in the sand all my life. I do believe I can be one of these people. So please if you see me out or talk to me don't tell me all this cliche stuff. And I do know first hand that doctors get it wrong it all the time.

My life is in the hands of the God's as they say. I will leave it down to fate and spend this month off trying to get myself back to a fit enough state so I can battle on with this or be Strong enough to do whatever I decide to do.

I don't have anymore information on the in's and out's of it all or what my options are so please do not question me about it. I will let you know what I know when I know it.

The thought of the day is...
What would you do with the rest of your life if you knew you only had a short time left?

Peace love and God please help me!

Saturday, 15 May 2010

Blog No. 68.

I do not know where to begin. I have had the most horrific week of my life. So much happened it was all due to negligence of the NHS doctors who treated me in hospital last week, as they didn't carry out there job properly.

I ended up having to go back into hospital on Monday night as the pain in my bowels had gotten so intense. it got worse as the days went on. The painkillers IE morphine infused with other painkillers in a drip did not alleviate this. It was torture. I kept passing out from the pain. Whenever I think of the past few days I get upset so this entry may be a bit non-sensical.

I am trying to thin the story out as it is so long and a bit raw to go through it all but I will try. Basically my stent, the tube which keeps my bowels open was blocked with tumour, either new or the original has grown. That's why I couldn't pass anything at the toilet. It should have been the first thing they checked, not give me laxatives and painkillers and send me on my way.

The build up got so bad that my bowel was about to perforate, which would have killed me. This is where I get a bit graphic, I had a C.T scan and the surgeon straight away seen this, I was only x-rayed before which would not have shown what was going on at all. I was transferred and a new stent put in under the original.

As soon as the new stent went in I can only describe an explosion of faecus. I was covered from head to foot, it was in my hair down to my toes. Its the most inhumane, humiliating degrading thing I could ever Imagine happening and it did. I am crying as I type this but it was truly horrible. I will never trust a doctor again as it shouldn't have gone that far. I was left on the truly with a paper bowl under me and told too poo. I was pleading begging to go to the toilet and they said we're to busy cleaning.

The process from scan to new stent being put in was about 2 hours, the stent takes 10 minutes and they do under sedation, not exactly a hassle in the first place. I haven't eaten for about 2 weeks, and will take weeks for may appetite to return as my stomach will have shrunk, it did last time about 3 to 4 weeks it took. But I have lost so much weight through the ravishes of chemo.

I got of hospital today Saturday and I am physically in no pain or discomfort, just got 3 weeks of being stuck on the loo to look forward too. But its has left me traumatised and a little dark inside, the pain rings inside my head along with the humiliation of it all.

I have to stop typing this as I hope you understand it's really upsetting me.

My thought of the day is...

If you wouldn't let a dog suffer why a human?

Peace Love and this wasting disease

Saturday, 8 May 2010

Blog No. 67.

So the move was quite simple, basically got picked up and just have to wait on my stuff to follow. Will take a few days to get everything organised properly but I am happy to know all I have to do now is basically settle. Glad to be where I have to moved to it's a very nice quiet area. We have our own garden which is great for the dog. The projector for TV isn't bad either.

There's loads to do I won't lye but it's basically unpacking and organising which is usually the most fun part I find anyway. I am just glad to have my own space at last. This is only a temporary move until me and my sister find our own place. But gives us time to think and look, and gives me my own space. Somewhere to call my own for now.

The dog doesn't travel very well as he cries so for the car journey I had to basically bribe him with dog chews to keep him quiet. He has now gone a bit manic and went wild in the garden. he will be sniffing around and around and around for days. It usually takes him three to four working days settle.

I am so excited as for my birthday Chris is buying me a memory foam mattress. I should have it next week and I tell you I can not repeat can not wait to sleep in it. Especially after how my back has been through not having a real bed. So thank you to my stunning boyfriend for that pure hundreds of love to you :-)

I still haven't pooped properly but will keep you updated on this as I am sure you are really fascinated by it. I know I am. My stomach is like a jacuzzi the noises its making are probably effecting the Richter scale I'm sure.

Well I have some organising and settling in to do so I shall leave you with my thought of the day...

If you could have a jacuzzi built into your stomach what colour would it be?

Peace love and gurgling bubbles

Friday, 7 May 2010

Blog No. 66.

So where to begin firstly with apologies for not writing for a few days. I been sick and in hospital. Will let you know whats been going on in this blog. It's been a busy old week for me.
I had my intravenous chemo on Tuesday, which was such a long day as was up at six to wait on patient transport. It didn't turn up so was late for my appointment at nine.

I had to have my arm x-Rayed as my pic line (the tube in my arm) had moved. It had moved to far so had to come out. Such a relief not having it in but more annoying in a way as now have to have drips forced into my veins, and it now hurts having the chemo, not just getting it but arm been sore for a few days. But at least I can shower properly now.

So what was up with me? Basically Constipation. Don't sound too terrible, but I been blocked up for nearly 2 weeks. That's how I ended up in hospital in first place. I got took to hospital on wed night to make sure nothing has happened to my stent, I got transferred to a different hospital as the one I was in was full.

I was kept in overnight and everything is "fine". They think it's the painkillers I am on that has caused the blockages, but they had to be sure and as I wasn't able to eat or drink for a few days they wanted to give me a drip. I kept getting pumped full of morphine which is fun in it's on way.

I got sent a nurse from the Beatson who came and went through my meds with me, she decided to change my pain relief to a morphine based painkiller in a low dose, which has helped Its two different forms of the same medicine, oxycodone is the medicine, it comes it two forms, one is a slow release tablet I take twice a day and the other form of same medicine, is one i can take whenever I need to as often, which as it says on the box is for breakthrough pain relief.

They kind of make you a bit dazed, but I am used to that feeling. I also received an enema, kinda strange thing that is and was given some to take home to try flush me out. I know pleasant conversation this is. I do tell all don't I?

While I was in hospital there was arrests made, people fighting the lot. Then when I was moved to the second hospital there was a junkie in the bed next to mines, who was at it. He overheard my story as I relayed it between one medical person to the next and decided to pass on what i was saying to his family, he tried to copy my symptoms and behaviour to get some Morhpine, the staff saw through this. But God loves a trier.

It was kind of funny as he was getting all these bits mixed up and I did have a giggle at him. He then tried to play the doctors off against each other, and he was eventually signed out as fit and healthy with a dose of methadone too for his trouble. I overheard him on the phone to his dealer which was amusing as he thought if he had his back to me I couldn't hear him.

Now where am I at? Oh yes so I am out of hospital having a bit of bowel action. I move flat tomorrow (Saturday), me and my sister move in with her boyfriend for a few months. We are there so I can have my own room while me and her flat hunt. I cant wait to have some sort of sanctuary I tell you. Makes all the difference having your own space.

I feel like I have so much more to tell you about, I feel like I have been cheating my readers the past while as I haven't been typing an entry everyday, But it is hard for me sometimes, and sometimes I find myself empty or not much has happened and you can't really make up a lot on these things as you always get caught out.

I shall let you know how the move goes tomorrow so until then,

My thought of the day...

Is two the loneliest number?

Peace Love and flitting bits.

Saturday, 1 May 2010

Blog No. 65.

What a wonderful nights sleep I had last night. These new sleeping pills and painkillers are amazing. I had to pick up more prescriptions today, one is for my scalp a lotion, as its breaking out and I am starting to loose my hair more noticeably even though I know tricks to hide to hide it and have good products so you won't really notice. It's still a strange thing getting used to it, how it feels how I can style it and how I can have it cut.

But my scalp has been really uncomfortable and sore for about a week now, I have lost a little of my hair its just mainly got thinner and receded quite a bit more. It's a weird thing to go on about but if i shaved my head it would be my choice not to have hair but loosing it like this feels like another battle but not one that consumes me.

I do like having hair as it identifies who you are and makes a statement about who you are too.
But all in all I am not too fussed about it.

I am also on a kind of laxative as the painkillers I am on can cause me to be blocked up, it's more of a sugar syrup than a pill I don't really know how it works but it tastes nice. A bit like maple syrup, Better not take too much or I will have funny marks in me pants hahaha.

Tonight I am going to have a nice romantic dinner with Chris, really looking forward to it it will be our first kind of date as we usually go for a night out when I am feeling fit enough but usually are confined to the house because I am to sick to go out.

Can't tell you how much I am looking forward to it. Will be nice ah bless. I need to tidy up the flat and walk the dog but I have plenty of time. Mind you the painkillers have made me get a bit a spacey at times so I feel everything will be done in a rush this evening as I don't seem to notice time has passed.

Well I guess I should go and stare into space a bit more and enjoy my relaxing afternoon before I have to tidy and clean up.

So the thought of the day is...

Staring into Space or going into Space?

Peace, Love and Space Raider's