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.