Thursday, 1 September 2011

Party Pics...

staying alive is the name of
the game!

watch out, it's the classic
oops upside your head...

Mum, Joe and my gorgeous cousin getting
into the groove...

nifty at fifty. my fantastic full
of life cousin...
this beautiful cake was made
completely out of icing. Look at
that fantastic lily...
queueing at the surprises there...
not sure about the chest David...
my beautiful girls looking gorgeous as usual...
crazy cousins...
 a good night was had by all...

Wednesday, 31 August 2011

I Don't Know How To Die, Only How To Live

Hi everyone! I've been out of the ciber world for a while now, since about April, because I've been in hospital. What started as a sudden on come as feeling bloody awful with backache, ended up as pneumonia and a four month stay. Fortunately the hospital is literally a five minute drive away from my home so mum and Joe can visit everyday. The staff are fantastic and I've made some great friends! Its actually a palliative care ward I'm on so as you can read between the lines, its unlikely I'll come out. don't get me  wrong, I'm still holding out for that miracle or magical drug that's not going to kill me. Apparently the PLX drug i was holding out for, I'm not well enough for and because i have so many growths and tumours the breakdown and  toxins that would be released would upset the apple cart and make me really unwell. so I've decided no more extra treatments. I'm going to let my body do the fighting. So that makes its time to be a little realistic as well because with the ongoing symptoms I'm having its likely I've got growths in my left lung and now my liver. in saying that though, the last week I've felt fantastic. Hopefully its not the calm before the storm and its my body kicking into action.
Apparently when i was first admitted i was only given hours to days to live, so mum and Joe were saying their goodbyes. I don't remember much of this time because i was being kept comfortable. This is when my stubborn streak kicked in and the four month roller coaster began. I slowly started getting better, again! and again!...and again! I'm an attention seeker, what can i say. I joke about it now while I'm well but the lows have been awful with pain like you could not imagine mostly caused by my left arm. It is so distorted with so much swelling all the way down the my finger tips. This is because the lymph nodes cant take it away anymore so i sit here making sure the fluid stays out of the hand by keeping it elevated all day. Some days this helps and some days it doesn't.

From then to now though hasn't been easy. I have completely lost my dignity. the weakness crept up so fast! right from the start i was using a bedpan (number ones of course) because it was so difficult to get out of bed. I even had to start wearing 'pads' which is a flash name for adult nappies! They're nothing like pampers i can tell you that now. There's no cartoon characters changing colour just plain wholesale nappy! To top it off, now because i have lost so much weight i cant use the bedpan because it was too coarse and was scraping the skin on my back as the nurses were putting it into position, so this is where the  loss of dignity kicks in. when your 'pad' needs changing you just lay on the bed like a baby with a nurse wiping you clean and replacing the pad with a new one - and that's number ones! Number twos started off as not too bad. Two nurses would help me get out of bed and place me on this weird seat with wheels, called a camode, with a bloody great hole in it and then id be wheeled over the toilet. easy! But then i lost the strength in my legs and the nurses couldn't get me in and out of bed onto the camode so now they use a hoist. Its a bit like a meat hook. You sit in this harness type thing over a bed pan until the job is done. The nurses do leave the room to give you some privacy but its still embarrassing all the same.

my new Adams apple

The lumps and bumps (tumors) have gone mad! the boob on my back is now all the way under my armpit and out onto my chest, where boobs are supposed to be i guess! So with other tumors that have formed around my shoulder i look like an American Gridiron player. Thefloppy penis is no longer floppy its just dead in the water. Icant use it at all, so its one hand typing now! i don't even have chat sessions on facebook anymore because i don't want to be one of those nuisance people that take ten minutes to write one sentence. I'm also having difficulty with the dead weight of the shoulder pulling down on me, its really painful so i can only sit up to type or eat etc... in short bursts. needless to say my dinner goes cold quickly. mind you, there is a lump that appears to be growing into  my throat so its difficult to swallow anyway and the food gets stuck. I also have no saliva, due to the drugs so i cant eat anything with no juice. as you can see in the picture my shoulder is way up in the air. that's not me sitting crocked that is the quarter back shoulder in its place and the right shoulder is meek and mild in its normal position.  My actual boobs have gone from a DD - E cup to a egg cup B and the nurses have informed me i now have a boney arse! i haven't been this weight since i was twelve!  if i had the strength to get out of bed id be shaking my skinny boney arse all over town!

It was my birthday back in June, 42!!! I'm catching up to mum. I decided to have a party at the local football club, 70's fancy dress theme. Thanks to mums wit we called it staying alive, after the Saturday Night Fever movie but with the twist. It was a birthday party but, because i really wasn't well then, to me it was a living wake. i invited 130 people and about 120 showed up and had a fantastic time.  Everyone dressed up and mixed in with each other and had a great time. the 'techno dudes' managed to Skye me in, so i got to see everyone in the their glory! put it this way, all i could see was Afro's and alcohol (I'll add some pictures after I've written this).

My trusty sidekick has had a bit of a struggle this month. She has made the step and moved into my house permanently. We've had it arranged from the start but saying it and doing it are two different things. Especiallywhen it comes to packing some of my stuff away to make room for hers. The kitchhen things aren't too bad because we're both kitchen gadget freaks and have doubled up on most things but its my clothes. Putting them into a suitcase to make room for her clothes is whats done it. i cant blame her. Packing someones clothes away, dead or alive, cant be easy.

So sorry mum for putting you through all this. sitting here in the hospital bed is easy and if i ever forget to tell you, i admire you so much. YOU are the strongest woman i know.

from infinity and beyond, i love you.

Thursday, 7 April 2011

Ketamine and hot dogs...

Here we go for the funniest and scariest experience i have ever had...

I have now been prescribed the big stuff! Ketamine. I didn't have a clue what it was but I knew it rung a bell. Well I know now! It's horse tranquiliser pain medication! The one all those stupid kids get off on, except mines not been processed like theirs so it would be useless to them! I was assured that I would not hallucinate on the low dose I'd been prescribed so that was a relief but apparently it was fantastic for nerve pain, which at this point is my main problem.  When my arm was floppy and painless it was a novelty but now it's still floppy and constantly in pain it's not so funny.

When i picked the bottle up (I was surprised it was in liquid form) from the dispensary at the hospital pharmacy, which by the way took them two hours because they only keep four bottles on site at any one time, the young lady asked my address, date of birth and whether or not I'd ever used ketamine before. I replied no and that was that really except for the fact that she gave me an oral syringe and showed me exactly where the 3ml dose line was. I was to take 3ml, three times a day. I asked her whether it would have any effect with the high dose of MST morphine I was on and she said no. She then burst my bubble by telling me that it could take a couple of days before I felt any effect. I felt like crying. I had already pinned my hopes on the x-ray armblock working, then we had to sit around for two hours waiting for the medication and then to top it off the darn stuff wasn't even going to work for a couple of days. I was in agony, I was tired because I couldn't sleep due to the pain and generally feeling really low and fed up. I really was hoping I could just get in the car, take some and my pain would be gone. When I got home I realised there was no 'side-effects' form, or directions for taking this medicine. All there was was a 'this is an unlicensed drug' form, what ever that meant.

So Thursday was when I started taking the prescibed dose. Friday I was fine but Saturday Iwoke up feeling a little light headed. I was having lunch with friends that day, Kayleigh, Sarah and Amy, but as the day went on I started feeling more and more strange. By 2pm I had double vision and by 2.30 I had to hold the phone at arms length to be able to read texts!  I sat at Kayleighs like a stunned mullet (kiwi slang again). Imagine sitting staring at one thing with your mouth open not saying or doing anything. Apparently in the drug taking community it's called 'ketbombing'. The girls are in their early twenties and refer to me as 'mummy lisa', so to them this was hysterical.  When Amy dropped me off home I went straight to bed to try and sleep it off because by this stage I was walking like a barn dancing crab...two steps to the step forward, docey-do, docey-do...three steps to the other step back, docey-do, docey-do!

stunned mullet
After my sleep, which by the way I was out cold for four hous, I still felt foggy and no more alert than before. I was due to take my next dose of ketamine but I decided not to take any more until I'd spoken to my G.P. They are not kidding when they say this stuff can tranquilize a horse, considering my last dose was at 1.30pm and it was now 8pm. This stuff could knock an elephant out! I didn't want to go back to bed so I decided to watch some television. I obviously nodded off because next thing I know, I find myself standing in the middle of the lounge with my arm out in mid air and even though at this stage I was alert I was still trying to grab a french stick (bread roll)! I shook my head and kind of laughed at myself even though I was a little freaked by it. It was a bit like sleep walking I suppose. Anyway, I carried on watching the television and then blow me down if I didn't come to in the middle of the lounge again with my arm out in mid air but this time in my mind I was grabbing tomato sauce from a supermarket shelf! Again, even though I was fully awake and alert I continued to reach out for the ketchup! It was like playing charades by yourself. At this stage I figured it was time to go back to bed where I would actually fall asleep and not 'nod' off. As for the charades, my best guess was that I was trying to make hot dogs. 

On the Sunday I spoke to my G.P the lovely Dr Graham, and told him what happened. He was not happy that I'd been given a bottle of Ketamine and left to get on with it. Especially with the high dose of morphine I was on. So on the Monday I was admitted into the local hospital to be introduced to Ketamine gently until they had the pain under control. Which apparently is how it's supposed to be done. I didn't ask, but I guess this is how you hear of people accidentally over-dosing. It felt very strange being in hospital and not being sick but I did feel so much safer. Although I was seeing the funny side to my hot dog experience, it did scare me not having my body under my control.

 For the first couple of days they increased the Ketamine and  MST Morphine slowly. The problem was I had two different types of pain, as I explained in a previous blog. Firstly there's the bag of spuds under the armpit that gives a constant deep, dull ache that gets worse if the arm presses against the body. So I have to have a pillow under my arm to create a gap. Over the past month this had got a lot worse and was contributing to circulation and nerve problems all down my arm. Secondly was the actual nerve pain down the arm and into the hand. Both types of pains needed to be treated with different drugs.

So let's start with the first type of pain. This image on the right is a view of the bag of spuds. Imagine you're looking through my body from the feet up. This is a 'slice' of my body. My spine is what the darker blue arrow is pointing at and those two beautiful clear big black circles are my lungs.  Fingers crossed they stay that way too.
MRI image of the tumours under
 the armpit

The problem in this picture is what the red arrow is pointing at. That's the mass under my armpit, the bag of spuds. Now for those of you with no knowledge of the parts of the body and where they should be, that yellow arrow on the right is pointing at my shoulder blade. This is where a shoulder blade should be but as you can see, the other yellow arrow is pointing at the shoulder blade on the left and shows how the tumour has pushed it completely out of position. The light blue arrow is pointing at my arm bone. It's in the image on the left but not the right. This is because the tumour has completely lifted my shoulder. If you look at me straight on, my left shoulder is at least three inches higher than the right.

MRI image of
'the boob on the back'
Then remember this little beauty. This is the MRI image of  the boob on the back (the red arrow) below the shoulder blade. Whereas before this was lose and not attatched to anything, the crafty little devil has connected itself to the mass under the armpit and also a new tumour spreading across my chest. This is why i now can't have surgery. I really wish I had asked to have the boob on the back removed sooner because the tumours grow so fast that by the time you've got you're appointment to see the surgeon, it has become inoperable.

Anyway getting back to the pain, these tumours combined are like a constant deep dull ache, but fortunately most of the time they can be maintained with morphine which takes the 'pain' away and leaves me then with a more discomfort feeling. I'm on two different types of morphine for this, the first is called MST which is a slow release morphine which helps keep the pain at a minimum constantly throughout the day. Then if I have any peaks of pain , as a top up I have Oral Morph which I take for a more instant relief. Some days this combination works and other days my armpit will just ache all day. So while I was in hospital having the ketamine slowly increased they got the MST balance right as well.

Now for the second type of pain, the nerve pain. As I've said in previous blogs this is the hardest to maintain. The Gabapanten had started to work but since the first arm block wore off it had become unbearable. I honestly don't know what to do with my arm some days. Nothing soothes it...heat pads, elevation, hanging it, compression bandages, support under the arm pit, you name it some days I have to try it all. so while I was in hospital I was pleasantly relieved when the pain slowly started to ease due to the Ketamine. Again, some days were better than others for some unknown reason but on the whole it did seem to be working and I only had two mild episodes of hallucinations.

Firstly, again involved the girls! They had been to visit that afternoon but the hallucination wasn't till that evening. I was so dopey that I was dozing off watching television. I 'came too' kissing the girls good bye but not the normal peck on the cheek like we normally do, it was a real over the top, lips fully puckered and making the mwaaa sound! But that's not the worse bit. I came too kissing the second one and was fully alert as i continued to kiss the third one. It was as if they were standing there and I couldn't stop myself. Thank goodness no one was around!

The second episode is even worse. It was the normal pattern of me dozing off from being so doped up and slowly getting used to the increases in medications. This time however I 'came to' licking the inside of a yogurt pot making all the mmmmm, mmmmm sounds. The problem was I was fully alert and continued to lick the yogurt pot all because in my mind there was a lump of strawberry at the bottom of the pot. To add to the embarrassment I was still making the mmmmmmm sound effects too with my tongue half a mile out my mouth! Thank goodness I had my own room otherwise my room-mates might have been wondering what was going on behind the curtains. Sadly my hallucinations didn't have Brad Pitt in them, instead i get bloody yogurt and hot dogs.

Tuesday, 22 March 2011

Arm block, part 2...

Well i don't mind telling you, it's been a right couple of weeks! So much so I'm going to have to break it into two or three separate posts but believe me, even you will wet your pants this time! For now though I'll start where we finished, with the arm block.

When you're talking pain relief, where best to start than my angel Dr Ivan, the arm block guy.  As you know from the previous post the arm block worked like a charm and lasted two and a half blissful weeks.  Having no control over the arm was difficult at times but surprisingly enough you learn to adjust. One weird thing i did discover was that everywhere i went the toilet roll was always on the left hand side. Even in my own home! Girls will get this more than blokes but i first realised this in a public toilet. We women squat over the seat. This alone takes great skill. So there i am in position shall we say, flopsy is hanging by my side as usual, knickers down to my knees and i have to lean across myself to reach the toilet roll and of course i can't find the end. Typical! Usually there's miles of it on the floor but not today. With great skill and balance i did it though, without one inch of my skin touching that toilet seat. So now i pre-roll! Can't catch me out.

bruising caused by a combination
of trying to find the nerve space
and medication that makes me
bruise easily
As i was saying the arm block lasted two and a half weeks. The pain came back gradually up the hand and then within two days it was back full force. I could move my wrist, fingers and shoulder but not my elbow. So i was still completely floppy and now also in pain. Thank goodness my next appointment was Thursday, two days away. Instead of chewing on peanuts and gaining more weight, i just kept telling myself, two days, two days.

When we got to Dr Ivan on the Thursday the pain was starting to get me down. It seemed worse than before but I wasn't sure whether that was because I'd had a break from the pain or the fact that the tumours under the armpit were a lot bigger. So Dr Ivan went through the usual procedure. A little brandy (sedative) as he called it, although with the amount of medication i was on i don't think it made that much difference. Mum said i had a little slur. He put the local anaesthetic where he was going to insert the probe and off he went, but this time no twitching! My arm laid there as dead as a do-do! Dr Ivan explains that although he knows he's in the right place he cant put the 'blocker' in unless he's absolutely sure. In my head I'm thinking "twitch you bastard, twitch!" He tries again but still no twitching. I could tell by his face that he really didn't want to send me home in this much pain. That's why he's my angel because you can tell he really cares. It's as if he can feel the pain too. So the next thing I know hes getting an ultra sound machine sent down to the pain clinic to try to locate the right space.

When the ultra sound arrived Dr Ivan got started. My cousin Debbie had come along for the ride, so her and Connie Beachamp (my mum with too much Holby knowledge) were glued to the screen as Dr Ivan explained to them what each thing was and what he was looking for. He found the right space again but still no twitch even though he could see he was definitely in the right place. Again he decided it wasn't safe to inject the 'blocker'. I was absolutely gutted and so disappointed at the thought of having to put up with the pain again. However Dr Ivan hadn't given up. Apparently the procedure could be done under x-ray, so he made me an appointment for the following week.  

This bruising appeared after the
failed arm block for no reason at all.
The following Thursday could not have come any sooner. We turned up at the pain clinic all ready to be relieved of the pain because by this stage it was unbearable. I honestly was at the stage that i didn't know what to do with myself. I'm not a cryer, but found myself crying all the time because i was exhausted from lack of sleep due to the pain.  If i let the arm hang the pain in my shoulder was incredible, as if i had a 10kg weight hanging from it. Also because of the large tumours under the armpit, whenever the arm hung straight down it would compress the tumours against my ribs and hurt like hell. Imagine having two or three golf balls under your armpit then holding a bag of shopping with the same arm. Wearing a sling now to take the weight off the shoulder wasn't working either because my hand would begin to have an unbearable tingling sensation. A bit like when you've scraped the ice off your car without gloves and your fingers are so cold you cant feel them and then they hurt when they defrost. I couldn't win either way.  So knowing i was definitely getting the arm block today was such a relief.

This was the bruise that appeared by the
armpit. Apparently it was just part of the
nerve path but unexplained why it came
up like that. The 'easy bruise' medication
made it look worse than what it was.
Into the treatment room i go and what do i find? Dr Ivan in a leopard print lead suit. I couldn't stop smiling. Only him! He's got such a great sense of humour. He reminds me of Gino, that chef. When i took his photo i said to him
'can i take a photo of you in that suit for the blog?' and he said
' i have to.... oh ok' this was all in one breath, then he struck the pose. He loves it really.

Anyway, back to the procedure. Dr Ivan decided to try it the original way first then move to the x-ray way. As usual i got my shot of brandy, then the local injection went in and then in with the probe. As Murphy's Law would predict the arm twitched like mad first time. I was so relieved it was gonna work. So in went the 'blocker' and i went back to the recovery area, where mum was, for a while where they monitor you, give you a cup of tea and see how it's worked.

At first i couldn't feel or move my hand but that only lasted 10 minutes or so. Before i knew it i had full function of my hand again except for my little and ring fingers. I couldn't move or feel them at all. Not even to touch the skin.

Dr Ivan was completely baffled as to what had happened and was going to consult with one of his colleagues that afternoon and ring me the next day with the next plan. The thought was that because i still didn't have full mobility that that somehow was effecting the block. What ever it was i was so dissappointed.  In the mean time though, Dr Ivan was very concerned about getting the pain under control. He had spoken to me weeks ago about Ketamine being excellent for nerve pain but in large doses it caused hallucinations. Aparently i didn't need to worry about that with the small dose i would be on. i knew the name Ketamine rang bells in my head but i couldn't think what for. So remembering that conversation and being desperate for something to alleviate the pain i agreed and he wrote me a prescription which had to be picked up from hospital pharmacy.

Fred Flintstone or Tarzan?
You decide, this is my Dr Angel.
When we got to the pharmacy it was a number system with only half a dozen people sitting there so at least this wouldn't take long. Yeah right!! Not today of course. Two bloody hours! I was five numbers off the number on the screen and it was going to take two bloody hours. I tell you, if the receptionist guy wasn't behind glass and i didn't have a floppy dead arm, i would have choked him.  We later learned that it's because they only keep four bottles of Ketamine on the premises at a time. At that stage i didn't know why.

As we walked back to the car, i was in so much pain and was so dissapointed about the arm block not working that i was holding back the tears but the minute we got into that car i let them out. We decided to fill in the two hours with McDonalds, perfect for depression, and some retail therapy at Hobby Craft. We got back to the pharmacy just as my number was being called. 

Part two of my Ketamine experience is soon to follow and it's a laugh from start to finish! You won't want to miss it.

Wednesday, 16 February 2011

One arm bandit...

One arm bandit, cool hand Luke or even quick draw magraw! Any of those nicknames would have done, but no! My arm has been nicknamed 'floppy penis arm'. To be honest, since the nerve block to my arm it does just hang there and i still can't move or feel it from my shoulder to my wrist. Aside from the pain free bliss I've been in for a week and a half, it has given me and my friends some hysterical moments of laughter and also a frustrating moment of embarrassment ( i was alone for that). But fortunately i am right handed and it truly is amazing how quickly we adapt to a situation and work with what we've got.

The pets seem to detect when i'm
out of sorts or in pain. This was taken
the night before the arm block. They wouldn't
leave my side for days.
Let's start with a normal morning. Say the shower. Now don't forget since i had the total node dissection to my groin (my left leg i might add), i still have to lift my leg to get it over the edge of the bath or in the car and so on. So imagine that act with one good arm lifting the leg and the other just hanging there (also my left arm) but don't worry, i did it broken bones and Mum was close by just in case. Now, wash your hair. Normally i would pour shampoo from the bottle with one hand into the other hand then place it on my head. Simple! But with flopsy i can't even turn my hand to catch the shampoo i'm pouring into it, so i had to pour the shampoo directly from the bottle onto my head. Obviously my quantity judgement was out because by the time i put the bottle back on the shelf the shampoo was pouring down my face like I'd been slimed and when i lathered it up i looked like I'd been in a foam party! I swear it took me twenty minutes to get the shampoo out and my hair was squeaky clean. Now I've got it sussed. i hold the bottle between my knees, squeeze tight and squirt the shampoo into my good hand that way. Genius!! I like to call it Kiwi ingenuity. Where there's a will there's a way.

Then there's simple things like putting deodarant on. You can't just lift your arm and spray. I have to pick my left arm up with my right, rest it on the dressing table, bend my knees to open the armpit area and spray. Think about it. Give it a try even. You'll be surprised how the smallest things become the most difficult.

One evening i even thougth i'd be extra clever and paint my nails. I am a Beauty Therapist afterall. How hard could it be? I'm right handed, flopsy only has to do five nails! Well i started off great guns, as you'd expect and then it came to flopsies turn to paint the right hand. Firstly i had to dunk the brush into the bottle with my right hand and place it between the fingers of my far so good. I then figured because i couldn't move my left hand or grip the brush firmly to do the brush strokes i would pull my nail of the right hand along the brush instead. Easy-peasy! It only took five minutes to paint my right hand...but let me let you into a little secret. It also then took an hour to get the nail polish off my skin! But the satisfaction i get from not letting something like that beat me is well worth the time and effort.

Now lets move to the kitchen. Because the arm tends to ache at the shoulder because it's a dead weight, if i don't have a pocket i pick it up and place it on the bench. So this particular day, Mum was folding my washing for me and i was making us a cup of tea. You can do that with one hand! I was in the process of filling the water filter jug to pour into the kettle. I rested my dead arm on the handle of the jug as a weight so i could pull the lid off and because i have no feeling in my hand i forgot i had my hand in the handle of the jug. As I swung round to talk to mum, the jug was still in my hand but instead of just stopping i ended up in a process like a dog chasing its tail with my good hand trying to catch my dead hand and the jug. I was spinning round in circles saying to Mum 'help me catch it' but as i caught a glimpse of her she was standing there, legs crossed about to wet herself, laughing hysterically. Consequently, i now put the dead arm in a sling so i know exactly where it is.

Now for the embarrassing one. I don't know why I'm so honest with you all sometimes but with cancer you have your good days and your bad. Your funny times and your sad and i figure if you're going to read all about my journey you may as well know it all.

So this particular day it was decided that my G.P was going to ring me and we were going to discuss all the medication i was on. With being in so much pain before the arm block and having on call Doctors add new painkillers to the mix my Oncology team wanted to make sure i was taking the medication i needed to be taking. Also because my angel Dr Ramos (the arm block guy) wasn't sure how long it was going to last initially, the maximum doses were all left as they were. But as it was 4 days in and all was looking good, we decided to reduce some of the higher dose medications. As it turned out i was feeling really tired that day and decided to have a little afternoon kip. I didn't want to go upstairs because it would've been sods law that Dr Graham (my lovely G.P) would ring, so i decided to lay on the couch. Being blond and highly intelligent i had my head down by the phone so i could grab it with my good arm if he rang...not thinking my dead arm and dodgy leg were on the edge of the couch. It turned out i went into such a deep sleep and was there for over an hour. The phone didn't ring but when i woke up i was bursting to go to the toilet. Forgetting i had a dead arm, i leaned over to get up off the couch, my arm collapsed like spaghetti and i fell onto the floor. Well with my dodgy leg, if I'm on the floor it takes some mighty manoeuvring to get up anyway and that's with two fully functioning arms. So there i am on the floor, I've got a blanket tangled round me and like a walrus I'm trying to stand up! Don't worry, I do get up and unharmed and run to the loo with flopsy swinging by my side. Now is the embarrassing bit. Try pulling your top up out the way of your trousers and your trousers and knickers down with one hand at warp speed. Don't forget you can't just pull your trousers down on one side. You have to go all the way around your waist with that one hand. Try it next time you go to the toilet. Put one hand on your head and actually try it one day. Believe my it is a mission, let alone when your bursting. So needless to say i wet myself! I was mortified but more so relieved that Joe wasn't home to have seen his mum wet herself. Once i changed i sat there on the edge of my bed and had one of those feel sorry for myself moments. I thought, i can't have surgery...arm blocks are fantastic for pain but that leaves me with a completely useless arm...and I'm pinning all my hopes on a trial drug that may not work. So for all you lovely people out there that leave me such wonderful messages of how brave i am and how i inspire you all, please know i have bad days too. We all do. But you know what i did. I thought about how bloody funny i must have looked rolling round the floor like a walrus. I remembered how much pain i was in before the arm block and how quickly i have adapted to the use of one arm. I went out and bought some tena lady (at 41 years old) to prevent any further accidents and i reminded myself that i am still alive and i am positive that trial is going to work and shrink these tumors.

Sunday, 6 February 2011

Coping with the pain...

Let's start with stubbing your toe. Those very first initial seconds when you're hopping round the room like a maniac, tears in your eyes and cursing the piece of furniture that was in your way. Multiply that pain by fifty, transfer it to your arm and hold that thought.

Now, whack your funny bone so hard that the shooting pain down your arm makes you feel sick to the stomach and does not ware off. Again, multiply that pain by fifty and hold that thought.

Finally, add a throbbing cold heavy ache to the mix. Centralise it to your armpit, again multiply by fifty and hold that thought.

Abracadabra...put it all together and what have you got? The bag of spuds growing under my arm!

It never ceases to amaze me how fast these tumors grow. It was just after Christmas when i noticed a lump under my left armpit. I had a bit of a chest infection and put the inflamed node down to that because once the chest cleared up so did the node. There was still discomfort under there, as if the seam of my sleeve was too tight, but it wasn't painful. However, an MRI scan i had done a fortnight ago had shown a mass of nodes, deep in the armpit, pushing on nerves which was causing all the pain from my armpit to my thumb. 

Deltoid muscle
My shoulder however, started aching when i had the Adrenal Gland bleed. I put that down to the subcutaneous morphine shots i was having for the pain relief, until i noticed a very flat lump right beneath the deltoid muscle. By beneath i mean literally sandwiched between the muscle and the bone.  After a week or two as the lump got bigger i started noticing a lack of movement with my left arm when it came to simple jobs like washing my hair or even just lifting my arm to put deodorant on.  It was so painful. Now, less than three months later, i can't lift my arm away from my body more than a foot and i can't even unscrew the lid off the milk.

Then there's the good old boob on the back to add to the mix. As I've said in earlier posts, that's also getting bigger and is now spreading it's way under my arm as well and putting pressure on my shoulder blade.

So that's where we add all the varieties of pain i described together. All at the same time, continuously through the day or night and regardless to whether i move my arm or not. My normal dose of pain medication, morphine, diclofenic etc...isn't even touching the pain because the majority of it is nerve pain. So I've been prescribed Gabapentin which is a neuropathic painkiller but this week i hit the total dose i can have and I'm still in agony so another nerve pain pill, Amitriptyline, has been added to the mix.  I'd love to say that's working but it's not so I've resorted to another method of pain relief because Morphine, I've discovered, is useless for nerve pain as well and only really subsides the dull throbbing ache.

#1 - food: especially peanuts. I've got a tub next to my chair and i sit and focus on chewing down every mouth full. Imagining every nutty morsel, every grit, crunching down to a paste. It sounds gross but it actually did  take my mind off the pain for a while.

getting rosie round the cheeks
during the blood transfusion
Fortunately i had my three monthly check-up two weeks ago and i had pre-warned Charlotte, my lovely specialist nurse, about my arm and the pain i was in so my surgeon, Dr Andy, was also there to have a look. One of the reasons i love my team is that we discuss treatments and outcomes so radiotherapy was thrown onto the table as a method of pain relief.  Going by the radiotherapy i had for the boob on the back we know it wouldn't shrink the tumors but the hope was that it would help with the pain. The only problem i have there is that whether its coincidence or not, every time i have radiotherapy or chemotherapy my body goes crazy and fights the treatment and not the cancer. I also weighed up the fact that even though radiotherapy is pain free at the time your body still compensates and gets rundown for weeks after the treatment. So i decided i wanted to go for the surgery option. Since having the total node dissection to the groin i was well aware this time that when Dr Andy said my scar would be 20cm he actually meant 30cm (unusual for a man to underestimate size i know). So we all decided surgery would be a good idea to alleviate some of the pain but i would lose some movement of my arm and it was going to be a big job (about 4 1/2 hours). To be honest the thought of ridding myself of some of the pain far outweighed losing mobility that i didn't have full use of anyway. There was just one problem. For some bizarre reason my haemoglobin level had dropped to 7.9 and i needed 3 units of blood. Dr Andy and Alice both wanted to wait for the results of a CT scan to see what that was all about, talk to a brachial nerve specialist for the best way to go about the surgery and we were off and running. So by the Thursday i was having a blood transfusion and Friday the CT scan. No rest for the wicked you know.
That brings us to this week! Excruciating pain in my arm that has had me in tears, a puffy face from steroids and more pain killing drugs and a weight gain of four kilos due to the bloody peanuts!!! Not a great week. But not to worry, my follow up at the MDM (multi disciplinary meeting) was Thursday. Ahhhhhh, Thursday. Dr Andy will give me a surgery date and all will be well in the world again...not!!!

As usual, my trusty side-kick, mum, and i waltz on in and the team come into the room. Dr Alice, Dr Andy, a couple of other Doctors and Charlotte my nurse. I hadn't really given the CT scan results much thought because i was in so much pain with my arm i was just fixated on a surgery date. So i was gobsmacked when they said i couldn't have the surgery. It turns out the boob on my back and the bag of spuds under my arm have all joined up with finger-like connections spreading into the surrounding nerves and tissue. So my 4 1/2 hour surgery just turned into a 6 hour surgery. I'm sitting there thinking that's okay, a little bit longer but I'm sure i can handle that when Dr Alice then says that the Adrenal Glands have also got larger and between her and Dr Andy they don't think my body can handle the surgery and whether it is in actual fact doing me any favours. Also to top that, and this one is a double-edged sword...i have a new tumor growing on the outside of my kidney attaching itself to the renal artery. This isn't just your average tumor, it's a Lisa special because apparently it's preventing my liver from throwing blood clots to my lungs! How about that then! In a weird way I'm taking the mickey out of myself here but honestly my body never ceases to amaze me. I joked with Dr Alice about this as well and she gave me that look. That "i can't believe you" look, but she smiles too and at the end of the day i just keep telling's not in my lungs, liver or kidneys! And it's not that i don't take it all seriously enough either because every day i look at Joe or Mum, i know it's not a joke but it's how i need to deal with it. I need to find the bright side. What can i say, I'm a cup half full person.

So back to the meeting. Because of the amount of pain i was in Dr Alice was going to refer me to the pain clinic because the 35 tablets a day i was taking were not even touching the pain. Thank goodness, that afternoon i got an appointment to go back the The Royal Berks for the next morning to the pain clinic and this is where my angel came in. Dr Ramos...ahhhhhhh. One mild sedative, a little local anaesthetic and a large needle with an electrical current passing threw it being shoved into my neck, followed with some more anaesthetic and my arm was as dead as a do-do! One nerve block completed. Oh my God the bliss. I couldn't feel or move my arm from my shoulder to my fingers. It was fan-tas-tic! The best way i know how to discribe it is...imagine yourself in a really busy shopping centre at Christmas. There's kids screaming everywhere. People pushing and shoving you around. The music is so loud it's hurting your ears and you just can't think straight. Now flick the switch and turn it all off. Magic! My God, the peace that i felt within my body to have that pain turned off. It is hysterical though not being able to move my arm at all. It just swings by my side with no control what so ever so i have put it in a sling to stop myself whacking it into things or accidentally shutting it in the car door but i feel like this huge weight has been lifted. The first night after i had the nerve block done i slept twelve hours straight! It's not sure how long the affect will last but even a few days will be heaven and as far as sorting these tumors out and ridding my body of them all, i still pray every night that the angels rid my body of all the cancer and disease so that i may live a long, healthy, happy life. I still have my weekly healing with Kimberly and the Crystal Bowls and fingers crossed in the 2nd quarter of this year the drug trial I've been holding out for will start and we'll shrink these babies that way. Every day is still a blessing.

Friday, 21 January 2011

A year ago today....

A year ago today...It was the 14th January, 2010 that i was told i had four months to live! Wow!! I still remember that day, the drive home from the hospital with Mum. Not saying a word and not being able to even register what we'd been told. The next few days going into automatic overdrive trying to displace all the emotion so that i could deal with dying and family travelling from New Zealand to say goodbye...any ones worst nightmare.  It has been a year that has flown by but when i look into the year so much happened. I look back at the rough times, especially the physical pain of those adrenal glands bleeding to say the least and i look back on the emotional pain and what a roller coaster ride it's been. Mostly though i look back at every extra day I've had. Every extra laugh, extra hug and extra conversation I've had with all my friends and family but mostly Mum and Joe. It's those moments that are priceless.

my beautiful tree until
the cats had their way
When Christmas was coming i didn't want to jinx it with the ten more sleeps, nine more sleeps etc like i would usually do but Joe and i did do everything else.  As usual his Santa list was put on the fridge at the end of October, with a No Change Policy by mid November. When he was little, like most kids, he would scour through the Argos catalogue and write me a list with the full description, catalogue number and price but depending what adverts he'd see on the t.v that day the list would be constantly changing. That was when we came up with the No Change Policy, otherwise Santa was in the bad books for not getting it right. Now that he's older it's not the Argos catalogue that gets scoured it's the Internet. I get a lovely printed Santa list now with images, web addresses, store names and prices. It's great but the money doesn't seem to go as far as it did when he was 7 or 8 years old. However, with the unavoidable "is this my last Christmas" voice in my head, i did go over board with the spending but hey, you can't take it with you!

That cheeky smile melts my
heart every time
Another old Christmas tradition we had when he was younger was catching the train to London Christmas Eve for the most painful experience of my life...2 hours in Hamleys Toy Store!! Up and down those escalators, in and out of different departments, toys in the basket, toys out of the basket, people pushing and shoving and ankle biters screaming everywhere...arhhhh!! Now however it's a movie and a restaurant of his choice. So this year it was The Little Fockers followed by the most lush meal at Wagamama with a belly aching laugh watching Joe try to use chopsticks. We'd never been there before and it was a-ma-zing. I had the Teriyaki Beef and couldn't stop saying mmmmmmm, until Joe told me to be quiet cause it was embarrassing. I didn't even realise i was saying it. It was a fantastic day, as usual, bonding with my boy.
Of course i was an expert

Anyway, back to not wanting to jinx Christmas...we made it! We didn't make any extra fuss or treat it like my last Christmas, we just ate too much and laughed lots and that's how it should be.

That brings us to January 14th, 2011. One year on and I'm still here and i will still be here for many years to come. I don't want to blow my own trumpet but it doesn't matter what situation you're faced with, you must face it head on. Don't bury your head under the rug, don't sit in the chair 'waiting for God', just face it and carry on as usual. The strength will come, trust me. Even if you're fortunate enough to have no health issues, remember to take in the people around you. The old cliche of count your blessings. It really is corny i know but when you're on the other side of the fence everything matters and everyone is worth it. A friend of mine has just had a tattoo on her foot that to me sums it all up and I'm going to copy her and have the same...

Love, Laugh, Live