Aurora Greenway vs Oxford...

Have you ever seen the movie Terms of Endearment? Shirley McLaine (Aurora) plays a frustrated mother watching her daughter die of cancer (Emma, played by Debra Winger). Although it's a very moving story it has so many laughs in it you forget it's supposed to be sad. Well a couple of weeks ago Mum and I were watching Terms of Endearment and the sequel called The Evening Star. There was a scene where Emma is in her hospital bed and in a lot of pain, waiting for a nurse to bring her pain medication. Aurora goes into the hall and starts asking nicely and then becomes frantic, screaming at the nurses to bring pain relief...

"it's ten after four, you said she had to wait till four now it's ten after four and she still doesn't have her pain medication!!!"

Watching this gave me the giggles because it was at that point i realised my mother was Aurora Greenway!!

Back in 1998 i had Viral Pneumonia. The Virus had attacked my Brain, Lungs, and Heart. I was in hospital for about five weeks but due to complications i couldn't walk properly, talk, swallow or move my hands. The left side of my body was like I'd had a stroke and was so heavy i couldn't lift my left arm or leg and the right side of my body had an uncontrollable tremor but the most frustrating of all was not being able to talk properly.  I could see the sentence in my head but couldn't get it out my mouth.  I was living in England again and Joe was only about two and a half. Fortunately, i have heaps of family in England so Joe stayed with an Aunt of mine. Mum caught the first plane over, with my baby sister, from New Zealand to rescue me. There's loads of funny stories about this time in my life but that's a whole other blog!

Anyway as i was saying, i spent five weeks in hospital with physio and various therapists to help me walk, talk and use my hands again and then i was sent home. After a couple of days i was sitting at the dinner table when all of a sudden i got a massive headache and my voice went really deep and even slower than it was before that. A bit like one of those old tape decks when the battery goes low and it's about to chew your cassette up. Mum rang for an ambulance and i was back in hospital. I don't really remember much else until the next day when i still had the terrible headache. I had my head under the pillow to block out the light and hold my pounding head when mum and my Auntie Pat turned up. Apparently i had gone hours without pain medication because the nurse thought i was asleep and didn't want to disturb me (bearing in mind i couldn't talk at that stage and couldn't move my hands to grab the bell). So all i remember is Aurora!

'what do you mean you didn't want to disturb her, can't you see she's in agony etc...get me the doctor'

That was their next mistake. His name was Joseph Joseph and he was a general medical registrar. I really thought i had vision problems when i saw his name tag. Cue...Aurora!!

'what do you mean you don't know what's wrong with her! You're the doctor, find out, do tests..'

To which the very suicidal doctor replied,

'it would be easier if she was dead because then we could do a postmortum'.

Unfortunatly that isn't even an exaggeration because apparently even the ward sister stood with her mouth open when he said that. I think it was at that stage Mum had him by the neck and told him she was sick of dealing with the monkey, she wanted to see the organ grinder? I don't remember much of that conversation but i do remember seeing my Aunty's face as mum was screaming at the doctor. She was going lower and lower down the side of my bed as if she wanted a big hole in the ground to eat her up. Ten minutes later i was given pain relief and put in an ambulance to 'blue light'  me off for a MRI scan which showed Encephalitis and lesions on the frontal lobe of my brain. Thank god for Aurora! As i said though, this is a whole other blog and needless to say my determination got me through this too.

Bringing us back to the present day, Aurora is still tucked away in the deep dark depths of my trusty side kick, waiting to bare her ugly head. So last week returning to the Churchill to discuss drug trials i was on full alert. I had pre-warned her before we left the house, like a naughty child, to behave herself while we were there. Neither one of us have a lot of confidence in the hospital but I'm more able to see it from their side of view, whereas Mum is strictly black and white. Our trust and confidence was knocked last year when i was undergoing another trial.

I'd signed up to take part in a double-blind trial of AZD6244. This means it is completely randomised and even the doctor doesn't know if you are getting the drug or a placebo. It had some minor side effects but the most common was a rash on the face. I never did get the rash so i doubt i was even on the drug and was being given a placebo instead. The AZD was taken daily in tablet form, three times a day and had to be taken no earlier than an hour before food or an hour after food. This was very confusing to start with but i soon got used to it. Along with the AZD i was given Dacarbazine, a chemotherapy that is most effective with Melanoma, every three weeks. For the Dacarbazine (DTIC) i was admitted as a day patient at the Churchill to have it administered intravenously. We would have to be at The Churchill Hospital for 10am but would never get the chemo before lunchtime because it was always organised chaos. Each person is assigned a nurse and mine was lovely but didn't instill a lot of confidence in us. The first time we went up there, nervous of course about having chemo, blood tests had to be taken and ECG (heart readings) had to be taken at specific times. The second, third and fourth times it was a lot more lapse. Instead of three ECG readings three minutes apart they would just take them one after another to avoid having to stand around for three minutes. Also it turned out there was only a couple of nurses that could actually put the I.V cannula in for the chemo and my nurse wasn't one of them. She could take blood but not put a cannula in. So to receive the chemo 2-3 different nurses would poke and prod unsuccessfully to put the cannula in. At first i thought it was because my veins were particularly difficult but then Charlie, the magic nurse, would come in and get it first time. So after I'd had all my veins punctured and still no line in, i would then have to wait for Charlie to become available to come and do mine.

Another problem was that each individual trial had a different protocol so the day my nurse was off was disastrous. No one knew what to do with me. For a procedure i was told would only take a 'couple' of hours, we were lucky if we ever got out of there before 5-6pm and being stuck on the Oxford Ring Road at that time is not pleasant after receiving chemo. I remember feeling like i wanted to just get out of the car and walk because the thought of being stuck in traffic would make me feel panicky, but i didn't have the energy to move. So in my head i would ask the angels to clear the roads for us and i would just keep repeating to myself, "it'll be okay, we'll be home in a minute"

After each Dacarbazine treatment i was so ill i couldn't get out of bed for 6 or so days and to be honest, it's the only time i've ever thought "enough is enough. i can't take anymore". On the day of chemo I would be taking nearly 40 tablets a day, mostly steroids, which would decline each day until i was back down to my normal painkillers and AZD. For the first initial week I was permanently queasy, i had terrible jitters in my legs, i couldn't keep still, i would sweat profusely out of every pore of my body, which smelt like vinegar, was bright yellow and actually stained a white tank top! I had panic attacks if Joe or Mum were ever out of the house where i knew they were safe and i completely lost my appetite. The best way i could describe it was my worse hangover multiplied by ten and lasting a week, added with morning sickness from pregnancy. The second week i would be very weak but slowly getting my appetite back and by the third week i was feeling much better. By this time though, it was time to go back and have it done again. It was awful and i wouldn't wish it on my worse enemy. But in the back of my mind i was telling myself it was worth it because it was going to work.

The final straw as far as the Churchill was concerned came on New Years Eve. This was, what turned out to be, my final chemo. As usual we got there for 10am. All the nurses and staff were in party mode and couldn't wait to celebrate the New Year but i knew what was coming so i wasn't so keen. I'd been telling my nurse about my side effects for weeks but because she never wrote anything down and relied on memory i wasn't sure how much was going in. So finally i told the lovely Dr Emma. She thought it may be a side effect of one of the anti-sickness tablets, Metoclopramide, so she changed it to a different type, Cyclizine. The I.V went in and the chemo was started. As usual it stung like mad but i would try to sleep to take my mind off it while Mum would people watch. This particular day one lady had her chemo stopped rapidly because it had expired and another had to see a plastic surgeon because the chemo had gone into the tissue and not the vein (that's how toxic it was).

When my chemo had finished i woke up feeling fine. I'd never felt fine before. By this stage i would normally already be getting the anxious feeling and be seriously queasy, but there was nothing. We went home and i was still fine. That evening I'd noticed that in my bag of drugs they had forgotten to give me one of the steroids but it was too late to do anything about it so i would just play it by ear on how i was feeling. A couple of days went past and i still felt fine. I was even starting to wonder whether they had actually administered the chemo at all because they weren't very focused, but i think it all came down to the side effects of the anti-sickness and the fate of them forgetting one of the steroids.

So as you can see, my Aurora has every right to be sceptical whenever we go to Oxford. But i'm pleased to say she behaved. There was no neck grabbing, snide remarks or evil eye being given over the rim of her glasses. Partly this is because the Prof in charge of trials told me everything i wanted to hear and partly it's because i blocked her path of vision so she couldn't see or say anything. It was histerical. So the good news was, we didn't get thrown out or banned and if all goes well and i can stay alive and well, i'll be doing the trial i want sometime next year and without the Dacarbazine.

Please leave any questions or comments about my blog because i would really appreciate the feedback.

How long is a piece of string?...

Well it's about six weeks on from my 'little bleeder' ordeal and I'm feeling about 90% back to normal. The pain is completely under control but most importantly the panic, distress and loss of faith and determination i had has settled down and I've put things back into order in my head. It's also been explained that the chances of my adrenal gland doing that again, my time bomb panic, is highly unlikely, but hey, we are talking about me. So I've decided to do as they say, 'prepare for the worse but hope for the best'. Every night I still ask the angels and my Dad to take away all the cancer from my body so that i can at least see Joe grow into a happy settled young man. That is my biggest wish and i will fight this disease until that day and beyond.

While i was recuperating my wonderful mum, my trusty side-kick, stayed and helped out round the house which was a godsend because i got a terrible spasm in my back that was preventing me from breathing in. I couldn't move for about two weeks and was prescribed diazapan and lorazapan. This left me like a stunned mullet throughout the day, zombie for you non-kiwi slang readers. My biggest concern was that i couldn't breathe when my back had the spasm until it relaxed, which some times was about 30-50 seconds. My G.P, who i might add is also wonderful, said 'don't worry you'll pass out first and then start breathing again'. That boosted my confidence...not, but i did laugh with him about that. Fortunately that now has also all settled down and I'm no longer needing the 'azapans so my head is so much clearer.

Today was my follow up with the wonderful Dr Alice. I keep telling her I'm going to make her famous but i don't think she believes me. One thing i do know is that i love the look on her face when she first comes into the room and sees me. To me it's like happy amazement. I know she's got to be practical and give me the facts, and I'm grateful she is like that, but I think secretly i do surprise her how quickly i bounce back even though I'm sure she thinks I'm a fruit cake because of my faith in the Vibrational Therapy.

We discussed the boob on my back because it's starting to effect my shoulder at night when i sleep and as you know i couldn't have surgery last month because i was too weak. So the surgery option was put back on the table, along with sleeping on a hemorrhoid pillow to cushion the surrounding area. That made me laugh! I could have done with that when they were shoving jugs of laxatives down my throat! As expected the boob that was the size of an orange is now edging towards a grapefruit so really the surgery needs to be done now before the lump gets any bigger and can't be surgically removed. The problem is, its not an insignificant little surgery and as Dr Alice says, melanoma is so unpredictable we don't know whether I'm going to live another two weeks, two months or with my determination two years. It's as long as a piece of string. Apparently she has had patients come in for their follow up appointments looking fine and two weeks later, dead! That's melanoma for you. My dilemma is, every time i have any kind of treatment the cancer goes crazy, as if my body is fighting the treatment and not the cancer. Generally i mean chemotherapy and radiotherapy so i don't know if surgery would effect me the same way so I've decided to leave it to toss around in my head for a week or two. I'm very interested in a particular trial taking place called PLX4032 that is having fantastic results with tumour shrinkage, but I'll tell you more about that in a couple of weeks when I've been to see the Professor in charge of trials at the Churchill in Oxford.

Now, as i was saying, I'm preparing for the worse but hoping for the best. Fortunately all the doom and gloom stuff got sorted in January when I was told I had until May so it was the other little things that needed dealing with. Firstly my iPhone!

When i found out the tumours had grown i was so pissed off. Aside from all the obvious reasons my iPhone contract on the 3GS had run out and i was so looking forward to getting the white version of the 4 to come at Christmas but i thought sod it and went straight down to O2 and upgraded to the iPhone 4 and i love it. I can skype my sister in New Zealand whenever i want and that alone is worth it. Besides, i thought what's the worse they can do? Take the phone back when i die? Who cares! Joe has my 3GS and Mum doesn't have a clue how to use it anyway so they can have it back. I did feel very naughty, but it just gives me another reason i can't go any where for 18 months!

Then there was Dexter. No, this isn't a family pet it's the American television drama that I'm hooked on. Season 4 just finished on T.V and I'm going to be so annoyed if I'm not here for season 5 so i cheated and have been watching it online. This by no means is me admitting defeat, it's me being too impatient to wait until next year because the last episode was so dramatic! Mind you, it's not just Dexter, there's Greys Anatomy, Private Practice, Lie to Me...but I'll be patient for them.

Pt 2: the funny side of my ordeal

Well you know me by now. With my trusty side-kick by my side, Mum, there is always a giggle to be had. Now i must warn you, for those who have squeamish tummy's or don't like the word shit stop reading now!

About two days into my hospital stay i started to develop an awful tummy ache on top of everything else and the morphine wasn't controlling it. This wasn't a pain as such, more a discomfort. Every time i ate or drank it would get stuck in my chest as if it couldn't go down. A bit like getting a lump of dry bread stuck in your throat. Also my stomach was starting to go hard and stick out so they sent me off for a x-ray. I was absolutely scared stiff that i had fluid in my abdomen from the cancer or worse still another tumor having a growth spurt and pressing on my stomach. A couple of hours later my lovely little ward doctor, Jess, came in to give me the results, my bowels were backed up! Like most women i do tend to suffer from constipation quite often but keep it under control with lots of fluids and fresh fruit. Unfortunately though with all the drugs i was on and practically being bed bound this had made it worse. The x-ray confirmed it and made it official...I was full of shit, literally!! Now, in the past I've been told I'm full of ideas, full of knowledge, full of lip and even full of mischief but never full of shit! I couldn't help but laugh until the laxatives started. Bearing in mind i was hooked up to a blood transfusion machine, a morphine pump and oxygen, this soon became something from a comedy show.

It began with one sachet mixed in with my glass of water after breakfast. That will shift it, i thought! Next was a sachet in my glass of water after my dinner. Ha! That will shift it, but i was so worried i would block the toilet. I was in a single room with my own bathroom, thank goodness, but it wasn't like i could blame anyone else. Fortunately it did start shifting but clearly not enough because for the next three to four days i was being given a sachet in my glass of water with every meal. I remember thinking, "for Gods sake, how much shit can one person be full of!?" and then it came...the jug! I'm not even joking when i say this but they put six sachets in a 500ml jug and i had to drink it within four hours!! The nurses called it a purge or surge.Whatever it was called I'm sure those bitches were laughing, mind you i was by that stage too because every time i went to the toilet i had to unplug the blood transfusion machine and the morphine pump (both of which would beep with an alarm like a tracking device so everyone knew where i was) and then the oxygen nasal cannula, so planning ahead was essential. At one stage the urge came on so fast i managed to unplug the machine but forgot the nasal cannula and nearly ripped my nostrils clear off my face. I couldn't giggle about how funny it was in case i shit myself. I was spending 60% of the day on the toilet and my poor little botty was getting sore but now with the surge i may as well take my pillow in there. All i could think was that must have been one massive shit the radiologist saw on the screen. Guinness book of records style. Fortunately though there was no more. Nothing. I was no longer full of shit!

The pain that brought no tears...

Have you ever been in hospital, in excruciating pain and the doctor asks you,

"On a scale of 1-10, 1 being the least and 10 being the most pain you've ever been in, what would you rate yourself?"

Well a couple of Fridays ago at 2.30am, i experienced 10x10x10x10!! As usual, when all is quiet on the home and health front, i woke up with a tummy ache. Within five minutes that ache turned into a pain and started riding round my back. On my 'old' pain scale i would have classed it a 4, bearable. So I got up to take some Paracetamol and snuggled back down into bed. Ten minutes later my 4 had become a 6, so i got up again took some Codeine and thought "that'll knock you on the head you little shit", and snuggled back down into bed. Another ten minutes of tossing and turning in my bed later, my pain was now a 9 and i knew something wasn't right so i got up and took oral Morphine. The pain in my back was excruciating and i didn't know what to do with myself. I couldn't lay down, i couldn't sit, i just found myself walking around the room or leaning against my wardrobe swaying my hips like i did when i was in labour. Then the vomiting started! The pain was getting worse by the minute and was a serious 10+ by this stage and because I'd been sick i didn't know if the pain killers would still be in my system or not so i called the on call doctor. He was going to ring back as soon as he could so at that stage I rang Mum, my 'safe face', to get her round.

By the time Mum got there, ten minutes later, i was on all fours on the bedroom floor vomiting and groaning in pain saying "oh my god, oh my god, oh my god", the pain being at least 15 out of 10 and that's when i told her to call the ambulance. They were literally there in five minutes and funnily enough that was when the on call doctor rang back! From then all i can remember is thinking breathe Lisa the pain can't get worse than this...but it did, i would think again, breathe Lisa the pain can't get worse than this...but it did! It got to the stage I thought how much pain can a human body take before it gives up? The paramedics gave me gas and air which didn't touch the pain, but concentrating on my breathing and biting and screaming down that tube was giving me something else to think about. Mum couldn't come in the ambulance so she followed behind with Joe in the car. I was so scared that that was when i realised i was in so much pain i couldn't cry. I really did think my battle with this terrible disease was over and my poor Mum and Joe had to see me and remember me in that much pain. From then on I don't remember much else.

I came to in A&E, hooked up to all sorts and being injected with god knows but i didn't care as long as they took the pain away. On the pain scale i was buzzing but it was still at least a 7. According to Mum, aka Connie Beachamp from Holby City, my blood pressure was very low and my heart rate was very high. I was put through a CT scanner only to find that i had internal bleeding coming from my Adrenal Gland. This is where my hope and faith got a shake up and that bloody hypothetical 4x2 plank of wood that smacks me round the head occasionally had now become a railway sleeper!

Over the weekend i remained in CDU where they tried to maintain my blood pressure and get on top of the pain until Monday when i was moved to the Oncology ward. That's when Dr Alice came in and i could tell by the look on her face it wasn't good. Apparently the cancer had spread further and the mass on the Adrenal Glands had grown quite substantially which is what caused the left one to bleed. Alice had never come across an Adrenal Gland bleeder before so an Endocrinologist had to be consulted with because the Adrenal Glands excrete Cortisone which raises blood pressure and because mine wasn't working that's why i was dangerously low, also the fact that i had had internal bleeding didn't help. I tried joking telling Alice "i told you I'd make you famous", but inside i was so scared. It was explained that the capsule of an Adrenal Gland is like the skin of a grape and it has no pain sensors so it stretched and stretched till it couldn't stretch any more and that's why i didn't feel it growing until it bled. As if that information wasn't enough, we then had to have the 'rescusatation' talk. Wow!! I was not expecting that! Thank God mum was there to take it all in as well because all i could think was "this isn't right...i haven't been in any pain for months... i felt well up to now...it wasn't in the tea leaves...I'm not ready to go!!!" 

Dr Alice was fantastic and as compassionate as she could be. She explained that because of the uncertainty and rarity of my 'little bleeder', there was a chance that the Adrenal Gland could hemorrhage again but more seriously next time which then could cause my heart to give out. As a rule I'm pro-life. Take any measure, do anything just save me but she explained that because i have a young healthy heart, if my heart were to give out it would be because something more serious had given out on the inside and that even if they could resuscitate me i could just end up on life support and not be myself anyway. Looking at it from that point of view put a different light on it so I opted for the 'do not rescusatate'.

I found myself in shock for a couple of days. I was crying for no reason, but i had every reason. I always thought if this damn disease did get me, i would just start getting more and more unwell and know my end of life was coming but now it had been explained as if i was a time bomb. In my mind i was weighing up the pros and cons to both scenarios....firstly my body shutting down over a couple of weeks while i was so high on morphine i couldn't function or secondly going out with a bang when the adrenal gland burst and my heart giving out. I did decided option two was better but then i had to explain this to Joe so that he was prepared if it happened again. This was heartbreaking.

radiotherapy update

It appears I'm still baking. This is the radiotherapy mark five weeks after my final radiotherapy session.

The itchy has just started and I've had to stop wearing a bra because the rubbing on the skin is beginning to irritate the area. Hopefully this won't affect my surgery in October. I'll just keep slapping on the aloe vera gel and cross my fingers.

My tiny orifice...

Just when you think  it's all going quiet...whack...it all starts again! Remember my croaky voice? It started about two weeks before Radiotherapy and i put it down to Laryngitis. During Radiotherapy it got worse and i continued to put it down to Laryngitis taking longer to shift because of being run down from Radiotherapy. 6-8 weeks later my voice is still really croaky and gets quite sore when i talk too much, which in my case is often! I'd never heard of Melanoma spreading to the throat but hey, it's me we're talking about and if there's history to be made I'll be there. It also seems to be the pattern to how i find  new tumors. Ovarian cysts...tumor in groin, indigestion...tumor in chest...etc.

So two weeks ago I toddled of to my G.P, Dr Graham, with my concerns. It wouldn't be so bad if it was sexy croaky but instead i sound like an adolescent teenage boy! He gave me a prescription for antibiotics, to rule out the laryngitis and sent me for a chest x-ray. Apparently, it's very rare, but there's a nerve that loops down into the chest that has something to do with the vocal chords and maybe i have a tumor pressing on that. I didn't like that option but with my luck...that'll be it!

When they first found a tumor in my chest last year that was only because i thought i had indigestion. Very painful indigestion! Joe and I had been to the movies one Friday night and as usual i was pigging out on my popcorn and m&m's when the pain started. I couldn't finish the popcorn!!! That alone should have been a sign that something wasn't right. I'd never had indigestion before but i guessed that must be it. I felt like i needed a big burp because of the pressure in my chest so i bought a coke but I've never been a big burper so that just made it worse because the gas got trapped too. I tried indigestion remedies and they didn't work and by the Sunday i was in agony. It was like a pick-ax was going through the centre of my chest and out my back. In fact my back hurt more. Fortunately i live behind the local hospital so i just popped in there thinking they could give me some prescription antacid but before i new it the doctor was sending me off to Royal Berkshire Hospital because i was having a heart attack. Great!! Add that to the list! As usual i had my trusty sidekick with me because "it's our journey".  As mum and I sat in the cubicle at A&E, i was hooked up to all sorts. Mum had been watching too much Holby City and was telling me I was tachycardic! Crazy woman,  it hurt so much to laugh but as usual we were seeing the funny side of it until a lead fell off and i went flat line. Mum's face went white, it was hysterical and i cried in pain from laughter. If she could have cranked the resuscitation trolley up she would have. We were still laughing when the doctor came in and told me it was highly likely i had a tear in my Aorta! I worked in an operating theatre in New Zealand so I knew the outcome to that one. I WAS A GONNA!! Hmmm, couldn't see the funny side of that and all i could think of was 'that's going to make a mess'. I knew it could blow at any minute so when the doctor left i explained to mum where everything was regarding life insurances, bank accounts etc...As usual she told me to shut up but this time i needed her to listen. I was admitted and sent off for a scan that night.

That night i drifted in and out of sleep trying to keep as calm as possible so i wouldn't put any extra pressure on my Aorta. I heard the radiographer mention my name to the nurse and hand her a piece of paper, they both looked at me and walked off so i knew the results were in and it was a matter of time before they would have me in surgery repairing the tear. Well no one came. The next morning, no one came. By the afternoon i asked a nurse what was going on and she just said she couldn't say but someone would come talk to me. No one came. The next day the doctors avoided my bed when they did rounds, the nurses gave me the same fob-off answer and still no on came. Then finally a flustered nurse said the Oncology team were coming to see me! When i asked her what for, she looked like she'd put her foot in her mouth and scarpered off in a rush. All i could think of was if I've got a tear in my aorta, what the hell do the Oncology team want? That did not help with the stay calm breathing i was concentrating on so my aorta didn't blow. I couldn't think which was worse. The tear in the aorta or the cancer spreading to my chest.

Two days later a General doctor came to see me after i kicked up about no one telling me what was going on. Mum was starting to pace, so it was either me saying something politely or her grabbing someone by the neck. It turned out not to be a tear in the Aorta, it was a mass in my chest pressing on the aorta and surrounding nerves causing all the pain apparently the size of a large grape. That then leads into the story of how i needed Chemotherapy but that's another blog. Lets get back to the laryngitis.

A week or so after the chest x-ray i had my follow up radiotherapy appointment with Dr Alice about the boob on my back, which had not shrunk one little bit! She asked me about my voice and said there was something little on the x-ray. At first i thought she meant on my lungs and i was gutted because i had been so proud of the fact that my organs were clear but fortunately she meant in my chest. I sighed with relief when i realised she meant where the other one was. It sounds ridiculous to be relieved about that but my organs are precious and to me by them staying clear of cancer is proof that i can either beat this terrible disease or at least hold it at bay.  I don't know if that's arrogance or naivety but it works for me. So the next plan of action was to stick a camera up my nose to see if my vocal chords were working properly because if they weren't we were back to the tumor in the chest pressing on the nerve theory. Great! I've had that procedure before and it hurt. I've had untold procedures but that is one pain i will never forget. I joked about telling Dr Alice about my little orifice and that even my son was born through cesarean section because i was too small, which made her smile but she still booked me in the next day for the procedure. At the same time i was going to see Dr Andy the plastic surgeon to look at the boob on my back.

So Thursday, there we were. Me and my trusty sidekick. We walked into the treatment room where Dr Alice, Dr Andy and another doctor, with a camera in his hands the size of a bazooka, were all sitting joking about my little orifice. They must look at me and think, here we go again, it's that bloody nutter. I sat in the chair and before i knew it the other doctor had the numbing spray shooting up my nose. That alone is unpleasant and is like spraying hair spray up your nostril (i assume). Then before i could say "it's not numb yet" he was shoving the camera up my nose. I was hoping that since I'd had the procedure before it wouldn't hurt so much because my nostrils were no longer virgins...who was i kidding. The pain. Have you ever breathed water up your nose when your swimming? It's like that, times ten!

"Breath through your nose, say 'e', say 'ar', swallow..."

As my head went giddy and i broke out in a sweat from head to foot gripping the chair for dear life, i thought "I'll give you bloody breath through your nose you idiot! Pull this yard hose out of my nostril and I'll wrap it round your neck"
What a relief when it was done. I thought i was going to pass out when he'd finished so i put my head between my knees while they talked about what they found. In that position Dr Andy started to feel the boob on my back. Thank goodness i didn't have anything wrong with my butt or they would've been examining that too. It was at that stage i had to lay down because the room was spinning. They were all fantastic though and i couldn't ask for a better team. Dr Alice was stroking my shoulder and i apologized for being such a big baby, but i reminded her of my little orifice and she laughed. I love Dr Alice because she gets me and my sense of humour and makes me feel safe. She then went on to say there was a growth on my vocal chords that needs surgery. Of course it needs surgery, it's me. Can't even have simple laryngitis! Anyway they didn't seem to think it was cancerous but it needed removing none the less and would be sent of to pathology. I'm kind of getting a BOGOF (by one get one free) deal because while I'm having the surgery on my throat Dr Andy is going to remove the boob on my back. Apparently its the size of an orange under the muscle and it's quite a big procedure so watch this space for photos. Dr Andy held his fingers about 20cm apart giving me a rough idea of the scar size but with my experience of him i can add at least another 5cm on that. I'm looking more and more like a patchwork quilt as the time goes on but i don't care...I'm alive.

Each time something changes i try to see the positive side or the funny side. With these two surgeries it's easy. Firstly, there will be no more sleeping on a fist because that is getting painful. Secondly, with the throat surgery, isn't surgery on the throat how Bonnie Tyler or Kim Carnes got their gruff singing voices? Watch out Mr Cowell, I'm coming to X Factor.

Radiation #2 - The boob on my back...

Remember how i said i had one subcutaneous lump left? Well, it's like a boob on my back! In fact have you ever seen pictures of Posh Spice's alleged implants...it's like that. I'd like to see Wonderbra come up with a contraption for that!

the boob sticking out my back

Back in May i was offered surgery or radiotherapy to get rid of it but because i was feeling so well and it wasn't giving me any trouble at all Dr Alice and i decided it was best left alone. Hopefully it would disappear on it's own like the others. Well that was May! It's four inches in diameter and sitting right under my shoulder blade and although it hasn't grown since May it seems harder and is waking me up at night time. It's like sleeping on a fist.  So i decided that before i get too run down through broken sleep and it gets to the stage i look like Quasimodo I'd get it seen to.

I decided against surgery because although my surgeon Dr Andy does a fantastic job, I'm not a great fan of the Oxford hospitals and feel safer with Dr Alice and the Royal Berks. I've also become a big baby with a low pain threshold and since being in so much pain for such a long time and now not being in any, it made me want to cry just thinking about the pain from surgery. So i opted to have my extra boob zapped! Radiotherapy itself is pain free and just like having a long x-ray. It takes longer to get into the exact position each time than it does for the treatment itself.

So I rang my oncology nurse Charlotte and I was up at Reading seeing Dr Alice's registrar on the Wednesday and having my Radiotherapy Planning visit by the following Monday. Now that's what i call service.

red mark after week 2

Instead of everyday for six weeks like last time, this course was twice a week for three weeks. Easy peesy! Also, instead of going all the way through the body, this time they would zap only the lump itself. Last time was amazing and i wish i had taken photos. You know when you cover yourself with sunscreen and miss a bit and that goes bright red? Well, radiotherapy is like that. With the six week course i had a large red rectangle going down my groin onto my thigh and when i turned round i noticed another one on my butt going down the back of my thigh. It didn't start to appear until the third week or so and I had been told the radiation went all the way through my body but i didn't quite realise it until i saw that. So it meant everything in the middle got fried too including my left ovary. Fortunately i haven't grown a moustache or got a deep voice so my girlie hormones must be still pumping. I was so worried about looking like a Russian gymnast or going through early menopause.

Although Radiotherapy is painless the affects tend to sneak up on you. With the six week course i was still in pain from surgery, my leg was like a tree trunk and i was fair crapping myself at the thought of having radiotherapy. I remember laying there on the table trying to keep so still, listening to the buzzing of the machine and this alarm-like beeping sound.  My heart was pounding because i was waiting for it to happen. I don't know what i thought it was but it never happened. Literally one minute later the girls were back, i was off the bed and that was that. What a relief. It was like a long x-ray. The next day i was a lot calmer and counted...1 Mississippi...2 Mississippi...34! That was it! 34 seconds! By the time it got to week two i thought, this is a 'peace of piss' (excuse my weird phrases), then week three it hit me! The medical team warn you you may get tired but it's not an 'i need a sleep in' tired, it's an 'i can't take another step' tired. I have know idea how Jade Goody did Christmas panto alongside her radiotherapy, but i take my hat off to her. I was also fortunate enough to only get a couple of burns on the skin about 2-3 inches long. I had been plastering Aloe Vera Gel on the radiated area but the skin goes thin and my knickers had rubbed and broken the skin. I should have just done a Britney and gone commando but it's not a pretty site. After the six week course i carried on cooking for another six to eight weeks and then started feeling stronger again.

Me and my Daisy

This time, however, my 1 Mississippi...2 Mississippi...got to 90! Aparently the radiotherapy is slightly different this time but it still didn't hurt.  The only real difference is the red mark appeared after the first session and the tired washed out feeling got me at the end of week two. By the end of the third week i was really lagging and i could feel my body getting run down. I lost my voice, my hair and skin got greasy, i struggled to walk 100 meters and i got awful night sweats. The pets start acting weird as well. Daisy, my dog, won't leave my side and sleeps up by my head and the cats sleep on top of me too! It's so uncanny how sensitive animals are. 

The day of the last session i was getting concerned because the lump wasn't shrinking. It wasn't waking me up at night anymore but it just didn't feel like it was shrinking. The nurse said i had another two weeks of cooking and because of tissue swelling i probably wouldn't notice a difference untill a months time when i went for my follow-up appointment. As for the washed out feeling, i would peak in 10 days and start feeling better. So counting today, i've got five more days till i peak and although i feel rough i know the radiotherapy is the reason and i'll soon be back on my feet again. As for my extra boob, i'd say we've shrunk from a B cup to an A so the zapping appears to be working. The most annoying of all though is today i've had to take pain relief! I've done so well for the past 3 months but the discomfort around my shrinking lump isn't worth suffering in silence for.

13,000 miles to say goodbye...

Since the prognosis in January I’ve had three very special visitors all come from New Zealand to spend time with me and say goodbye! Well ha!! I was the one who ended up putting them back on the plane at the end of their visits and saying goodbye.

Sticky dots!

It started with my baby sister in January. She got on the first plane they could give her the minute I was told, as if I was going to pop my clogs right there and then. I was still feeling weak and tired at that stage because the Chemotherapy had knocked the wind out of my sails and we were all pretty convinced that I was going to die. I was going through the ‘matter-of-fact’ mode treating my death like going on a holiday and blocking out all emotion because I did not want to be surrounded by depressed people and she helped me with that.

Year’s back we joked with each other and mum about who was going to get what of mum's possessions when she died. It sounds terrible but it was done in good humour. Anyway to solve the problem we joked about putting colour coded sticky dots on the items we wanted to claim and whatever didn’t have a dot could go to my brother. He doesn’t have the same sense of humour as us which made this even funnier. Years later this is something we still laugh about, especially when it comes to a very old blue covered cookbook Mum had when she was first married. So, the day after Sarah arrives there she was in my lounge with her sticky dots! We laughed like crazy about where she was going to put these sticky dots. However some of the places would require me to be an organ donor. For example, she’s blind as a bat and I have 20/20 vision so my eyeballs were top of her list and another dot had something to do with fissures, but that’s a whole other story and not something she would want discussed on my blog!

The whole two weeks she was here, we just blobbed about in our p.j's while I slowly got my strength back. We joked about music to play at my funeral and decided that the pall bearers should carry me down the aisle to the Black Eyed Peas, Boom Boom Boom and have a strut to their step. Just imagining that gave us all the giggles. Some people would cringe at our laughing fits but I think making the situation light-hearted helps it to be bearable.

Then came the goodbye. I’m renown for not crying but even I had a tear in my eye. No amount of humour can brighten up the situation of having to say goodbye to someone you love, knowing it’ll be the last time you see them.

The Lighthouse!

So then came my baby brother. He had never flown so we were all worried about where he was going to end up but he got here safely, buzzing with excitement about the flight and finally coming to England to see us. However, he’s a whole other kettle of fish and we’re like chalk and cheese. We couldn’t joke about death, funerals or anything like that with him because to him it’s not a laughing matter but strangely he brought me strength. Without a lie, within a couple of days of him arriving I had this feeling of being protected and could actually feel myself getting better. It was then that funeral arrangements and all the depressing planning surrounding my death stopped. For the first time I felt hope.

He also was only here for two weeks but my health began to improve rapidly. We even managed to get the train to London and do one of those sightseeing tours on an open-top bus. It was bloody freezing and even started snowing at one stage but it was such a good day and so great to spend time bonding with my baby bro. It took a good week to get over my big day out in London but it was so worth it. During that week at one of my healings, Kimberly told me I was a ‘lighthouse’ to Robert. I shrugged it off and thought she just meant how he would look for me in crowds at London like a lost little boy, then one night Rob went out and got lost! I had given him a map and he had walked the route to town a couple of times but this particular night it snowed completely throwing him out of whack and unlike New Zealand all the houses look the same. He didn’t want to phone me because I wasn’t feeling well so he ended up calling mum who then ended up calling me anyway. It turned out he was lost literally at the bottom of my road so I traipsed out in my bright pink dressing gown and ugg boots and stood at the entrance to my cul-de-sac. There he was, wet through and blue! It’s a wonder he hadn’t frozen to death walking round in circles in the freezing cold and snow. He looked up and saw me standing there with a street light behind me and said I looked like a ‘lighthouse’...Spooky aye!

Saying goodbye to Rob was easier. I had begun to feel more positive about my outcome at that stage and his two weeks were more like a tourist holiday for him as well which took the doom and gloom out of it.

Laugh till it hurts!

Finally came my bestest lil’ buddy Karen. I knew this was going to be a scream even before she turned up because she and I laugh at anything. We’ve been best friends for 22 years and some of my funniest memories have been with her.

Years ago when we were younger we dared each other that whoever died first, thinking in our 90’s, the other would have to wear a bright green hat to the funeral. So when I first found out the cancer had spread I told her to go get a hat! She then became seriously ill herself and told me to get one. Luckily there isn’t an actual green hat because the air miles it would’ve clocked up over the last 18 months going between New Zealand and England would have left it in tatters. Fortunately she is now on the mend, I'm feeling more positive about my outcome so the hat can go back in it's box until we're in our 90's.

Karen was here for the whole 'May' thing.  When she booked her ticket i think it was with the intention of being here when i died so she could help Mum and Joe. Well...that plan backfired ha ha because I'm still here, so we spent three months laughing and shopping instead. Karen has become New Zealands very own walking, talking Jane Norman mannequin. Because both our bodies were recuperating from our various illnesses, there was no pubbing and clubbing till the small hours in the morning but we still managed to laugh the whole time she was here and that's what she brings me...ridiculous laughter till my sides hurt.

This photo was taken in some random farmers rape seed field. We'd seen it on our way to bingo and decided it would make a great photo if we were wearing her Dad's pub t-shirts.  There was no gate at the entrance so it wasn't really like trespassing but we had our wits about us anyway and wanted to take the picture as quick as we could. Another plan that backfired! The bloody camera kept sliding of the bonnet of the car, fell from the branch of a tree and generally was not working with us so we came up with the brilliant idea of holding it. In the midst of all this i could hear shotguns in the background that seemed to be getting closer and Karen thought there might be snakes in the field so we got the nervous giggles and we couldn't get the timing right. 5-4-3-2-1 flash! After six attempts, this is it.

Without travel insurance my bucket list was halved so while Karen was here we did all the other stuff. Racing car driving...BBC Radio 1 Big Weekend...Ladies Day at Ascot...Hot air balloon ride...Bingo...we even had our tea leaves read!...you name it, we did it and before we knew it her three months were up and it was yet again time to say goodbye to someone.  But this wasn't a goodbye, this was a "see you later"

Karen returned to New Zealand and put the wine on ice ready for my return. So fingers crossed, angels on my side, I'll get this terminal tag lifted soon, be able to get travel insurance, win the lotto and go and stay with my bestest lil' buddy.

Kimberley's notes from Heaven

Have you ever heard of Quartz Crystal Healing Bowls? No? Well you have now and the first time i came across them i had know idea i was going to be needing their healing abilities.

Back in New Zealand i was taught and attuned to Level 4 Reiki but because i returned to England, i had a different circle of friends and such a busy lifestyle i stopped practicing. Then back in 2005 i decided it was time for a change and signed up for an evening class at college in Holistic Massage Therapy. I wanted to get back to the healing and holistic way of things to balance my life out again. You know the old phrase...all work and no play! Well, one night i was sitting in the back of a massage class, absolutely shattered from burning the candle at both ends, when i saw a notice on the back wall requesting practice models for a local Reiki class. I jumped at the chance because i had found myself 'craving' a Reiki healing for months and this was just the sign i needed so i rang the number the next day. This is when i met Kimberley Solari.

For those of you that have never heard of Reiki it is best described as heavenly. It works by the Reiki practitioner channeling the universal energy through your body, balancing mind, body and soul back into harmony. A lot of people will think 'what a load of shit' and to be honest i WAS one of those people but my response now is be open minded and don't knock it till you've tried it.

After talking on the phone i couldn't wait to meet Kimberley. She was a local woman who ran a Reiki Therapy and Training centre in Berkshire. I couldn't wait to get on the couch a feel that healing energy flow through my body and re-energize me. I got there on one of her Reiki 1 training nights, opened the door and gasped. The 'feeling' in her healing room was like nothing i had ever felt before. Flowing chiffon and candles helped emanate the tranquility of the room but as i stood there taking it all in that's when i noticed the huge bowls on shelves all around the room. Thinking they were just part of the decor i didn't pay them much attention until i heard the sound. Each note played was like music to my ears and i couldn't wait to get off the couch to find out where it was coming from. The sound resonated around the room and through every cell in my body and was more of a feeling than a sound...a flowing sonic wave. From that moment i was hooked on the bowls.

A quick explanation of the bowls is OH-MY-GOD!! Seriously though, they're not like your average salad bowl. They range in sizes and sound depending if they are frosted or clear. Each bowl plays a different note corresponding to each Chakra or organ system of the body and each tone awakens cellular memories and heals on different levels. For a closer look into the bowls and to listen to a recorded version have a look at Kimberleys website at http://www.reiki-berkshire.co.uk/

Anyway, back to my story. I tagged on to Kimberley's class and went back for a few weeks to learn more about these fascinating bowls. At that time i also helped Kimberley with one of her patients once or twice for the experience to work with Kimberley because she was such a fantastic teacher. I would perform the Reiki and Kimberley would play the bowls. This particular woman, Amanda, had been battling cancer and had 9 inoperable tumors of various sizes in her lungs and was given less than two months to live. Unfortunately at the same time, my mother had come over from New Zealand and got very ill with Meningococcal Meningitis so taking care of her became my priority and i lost touch with Kymberley until October last year.

All through my battle with cancer, every night i would ask the angels for healing energy to rid my body of cancer so that i may live a long, healthy happy life. Visualizing that universal light flowing through my body but last year when it spread to my chest i decided it was time to bring in the 'big guns'...Kimberley and her bowls! I rang and made an appointment but didn't tell her anything about the cancer. My body soaked up the energy like a dry old sponge would water. I could have stayed in that room for hours because i felt so safe. After my treatment Kimberley gave me her feedback to what she found and she found the cancer. I was so pleased because although i fully believed in her there is always a little sceptic thought deep down inside that needs convincing. I was even more astonished to learn that Amanda was still alive, doing well and writing a book! On top of that Kimberley had started working a lot with cancer patients and having fantastic results and most of which have turned to her as a last resort. So from then on i started going once a week.

Now in the past four months i have stopped taking Morphine and Codeine, which i was taking regularly for pain throughout the day; all but one of my subcutaneous tumors have disappeared, which i had about 6 of various sizes; and the constant aching i had in my side from the tumors in my Adrenal Glands has stopped! Although Melanoma can't be monitored by blood markers my last blood results show that all my organs are fine and that I'm a little anaemic!!! Nothing an 8oz steak won't fix. My Oncology team are amazed but sceptical which is understandable, they work with facts, figures and statistics but even they say 'what ever you're doing, keep doing it!' I'm sure they're going to scan me soon to see whats going on on the inside but the fact that all these little things are improving is evidence enough for me. Dr Alice did say to me back in April that young people tend to absorb the symptoms of the disease and then deteriorate rapidly. Well even if that is the case Kimberley and her bowls, the Reiki and my own determination all amount to a better way of life and a better way of dealing with it rather than sitting and waiting for May.

Two reasons for my survival...

Friends and family...I can honestly say they are the key to my sanity!

It goes without saying that Joe is at the top of my list but right by his side is my Mum. She keeps telling me it’s our journey. This of course gives her the right to come to all my appointments in case she misses something, take over my housework to make herself feel useful and generally try to be my protector, but I don’t mind she’s like a best friend really. We’ve laughed and cried from day one. The day before my prognosis in January we were sitting watching Die Hard and she randomly asked “I wonder what they’ll do if the chemo hasn’t worked?” I was so engrossed in the movie and exhausted from thinking about that same scenario myself that I just replied “they’ll probably say yippee-kiy-yay mother fucker, shake my hand and show us the door”. Realising the dry tone I’d said it in, we both creased up laughing till we had tears in our eyes. It’s not hard to see the funny side of something when you’ve got a sick sense of humour. So guess what? As lovely as Dr Emma was, it was just like that. There’s nothing else we can do...goodbye. In the car on the way home Mum was really upset and I was just frozen so I said...”yippee-kiy-yay mother fucker” and we both burst out laughing. It works you know! Laughter truly is the best medicine.

On that note comes everyone else. I have the most fantastic friends and family and through Facebook it has become their journey too. Up until 2 years ago I didn’t know how to use Facebook and to be honest I wasn’t interested. It seemed a bit too public for me with the open squabbles and gossip but with such a large group of caring family and friends it was costing me a fortune texting everyone with each little update. So one afternoon while I was recuperating from the groin resection surgery and had started Radiotherapy I signed up and found I had all my family and friends in one place. I started with an email that went out to everyone and then one day I just put my results up on my status. It wasn’t morbid or depressing, just the facts and everyone got the same information at the same time. I also figured the more people that knew meant more people to send positive thoughts and prayers in my direction. Each time I post something on my wall now I get comments filled with love and positive energy which lift me each time and I get to share the laughter with them too. They get to see that it’s not taboo to laugh about different aspects of it and this makes it so much easier for people to deal with.

This month has been The Race for Life. It’s held annually all over Britain in all the various towns and is a fantastic fun way to raise awareness and money for Cancer Research. It's women only and they can walk, jog or run the 5k. This year they're trying to raise 60 million pounds to help towards Cancer Research in the U.K. The atmosphere is amazing and next year i have every intention of joining them in this fantastic fundraiser. These pictures are of friends and family of mine that have each done the race in honour of myself and other loved ones. When I first saw these pictures on Facebook it put a lump in my throat and i could have cried my eyes out at how caring and thoughtful the people surrounding me are. Their support has helped me no end and I’d like to thank them all.

What comes after May?

June of course! Then July, August, September and so on...That’s how I deal with things now. I look forward but I live each day as it comes. I’ve heard recently that quite a few cancer sufferers don’t regret the experience because it makes them ‘wake up’ to what’s around them. I can’t say I agree. I was never one for taking life for granted anyway. To me it’s a bloody inconvenience because it restricts the things I want to do. One thing I have realised though is that you’ve got to get out there and do it! Don’t wait for someday when this...or someday when that...just get out there and do it!! I’m not saying go into debt but why wait for that rainy day?

It was during all the palliative care appointments that I decided to stop planning my death. Conversations about where I wanted to die at home or hospital, what was going to happen to Joe and what type of music to play at my own funeral was consuming every minute of the day. I still tried to be light hearted but even when I tried not to think about it, death was always there. I didn’t want to plan for the end because it was like admitting defeat so I decided to live with the cancer. I pace myself and listen to my body but I’m squeezing as much as I can into every week.

This month with great thanks to The Willow Foundation, Joe and I had a track day experience. I’m a bit of a Penelope Pitstop at heart and have always wanted to drive really fast and not worry about speed cameras or other idiots on the road. 100mph in a Porsche overtaking a Ferrari on a disused runway, well that was just what the doctor ordered! There’s nothing like the rush of adrenaline as you fly past a brake sign at 100mph. As for Joe, he loved it. This is a kid that screamed “this isn’t a bloody kid’s ride!” on the Hex at Alton Towers. He was buzzing and absolutely loved it.

Then there was Ladies Day at Ascot. Mind you that come at a cost because with my prognosis in January I sent all my dresses and hats to the charity shop because I wasn’t going to need them where I was going. So I had to buy a new dress, hat and shoes! That’ll teach me for jumping the gun! Can’t say I objected that much though, I’m a woman after all. I did keep my favourite red evening gown though because I couldn’t decide whether I wanted to go to heaven in my best dress or have my mum tuck me in for the last time in my p.j’s. The latter was the winner. I picked the horses that names all had meanings to do with my life. Like Rite of Passage, Invincible Soul and Principle Role and I won on every race bar one. It was another sign of good things to come.

Now this week as an early birthday gift, my ‘bestest little buddy’ Karen took me on a hot air balloon ride. We flew at 4000ft over the beautiful British countryside on a gorgeous summer evening. Perfect! The balloon was a huge Union Jack which was so appropriate because the English football team made it through to the next level in the world cup. That was my ‘stop and smell the flowers’ moment. The views were breathtaking. It made me more determined to not go anywhere because there is still too much beautiful countryside and places to see.

So now what’s next? My 41st birthday. You’ve heard the phrase “I never thought I’d see the day”, well I never and yet here it is. My friends and family are taking me to TGI Fridays. Apparently when it’s your birthday they make you stand on a chair while the restaurant diners sing happy birthday. I am going to stand tall because I’m here!!

13th...unlucky for some, but not me because I’m 13 days into borrowed time.

January this year I was told the Chemo hadn’t worked, the cancer had spread aggressively during treatment and I had ‘months’ to live. For some reason the actual time span of ‘months’ hadn’t registered until I asked if I could take my son to Las Vegas for his birthday in May. Dr Emma’s eyes welled up and she told me May was too late! I was either going to be too unwell or dead by then! May!! That was only 4 months away! That couldn’t be right! They’d made a mistake! Maybe I moved during the P.E.T scan and the image was grainy. Hang on, I know, its buttons! I must have had buttons on my clothes when they scanned me. Four months!! What do you do when you’ve only got four months to live!

My bucket list consisted of places to see and food to eat. I wanted to drink wine in Italy and stuff my face with pasta, see blossom trees in Japan and eat sushi, ribs at a rodeo in Texas and hot chocolate by a fireplace in Aspen. But even that had been taken away from me because now I wasn’t allowed to fly! Apparently the combination of chemotherapy and melanoma put me at high risk of blood clots not to mention the difficulty I would have getting travel insurance. If they covered the cancer it would cost me a fortune and if they didn’t and something happened they would somehow link it to the cancer and it would cost me a fortune. So that put pay to the travel part of my bucket list. Did I mention I don’t like being told what I can and can’t do?

As it turned out I went into ‘tie up loose ends’ mode. I made a list on my iphone and starting checking them off one by one. In a weird way it was like getting ready for moving house or going on a holiday but instead of packing my suitcase and remembering my passport it was organising things so that Joe and Mum didn’t have to. Finishing things that I’d started. I had cross stitches that were unfinished, Joes baby album hadn’t been updated since he was seven (he’s now 15), my wardrobe needed sorting of all the clothes that ‘one day I’ll fit back into’ because one day wasn’t coming. I just wanted to clear out everything that I wasn’t using because this would save mum the painful job when I was gone. I started writing a journal for Joe with little snip-its to help him through life and listing the things that were in my keepsake box so that he would know what they were and the story behind them.

On top of those seemingly menial tasks were the serious depressing ones. A couple of days after I’d seen Dr Emma at The Churchill Hospital in Oxford, I went and saw one of the nurses at the Charles Clore Unit at Newbury Hospital. I was introduced to the Charles Clore Unit when the cancer first came back in 2008. I felt like I needed moral support and in a way it was therapeutic to be surrounded by others that had cancer. Talking about it openly without getting puppy dog eyes was great but when they started dying one by one it made it all too realistic and I stopped going. I had a gut feeling I hadn’t seen the end of my battle with cancer but I felt it wasn’t going to kill me and I was going to beat it. I was trying so hard to stay positive and was so torn between what I felt and what I was being told. Maybe the guys that had died also felt strongly about beating it, but having them dying was shaking my belief and I wasn't feeling so positive anymore.

So here I was, back at the Charles Clore but this time I was one of the ones that were going to die. That was when the palliative care ball started to roll! My nurse helped me organise appointments with a palliative care doctor, district nurses, Macmillan nurses...the list went on. I didn’t realise there were so many people I needed to see. It was still all a bit surreal though because deep down I still couldn’t believe I was going to die.