'Just Months to Live'

Simon’s unique style of writing was no more evident than when he commenced writing his ‘blog’ on the 27th June 2008. This was ten days after receiving the news that he had stage 4 melanoma and had a maximum of 12 months to live. He had turned 28 on the 18th June.

Simon’s ability to remain calm, positive and witty throughout his ordeal is inspirational and has had a profound impact on people all over the world. We, Simon’s parents and sisters, have decided to publish his ‘blog’ together with other relevant documents and photos.
Michael, Philippa, Louise & Caroline Toomey

To purchase a copy of this book, please email pip2me@yahoo.com
All proceeds from the sale of this book will be donated to
The Cancer Society of New Zealand.
$25 (+ postage)

Michael and I were married just over six years before Simon was born. He was our long awaited first child, the first grand child on my side and the first male grand child on the Toomey side.

As a baby, Simon catnapped. He was happiest sitting in his bouncinette ……observing.

When he was three and a half years old, I took him to the local dental clinic. As we walked into a crowded waiting room, he looked up at a sign on the wall and said,
“Thank you for not smoking. That means you can’t smoke in here, doesn’t it?”
The people starred and I could see them thinking “Pushy Mother!”

I had a three and a half year old, a 21 month old and a month old baby….none of whom slept! Sure he was read to every night but this was more than that. He started looking through Time Magazines, and his comprehension was amazing.

At aged 6 years, he could sound out and spell words correctly. I remember him writing the word flabbergasted.
He was raised on music of the 1960s and he could recite the words to the Beatles song, 'Paperback Writer', around the same time.

He loved learning and his memory for trivia started at a very early age and lasted right to the very end of his life. He was a delightful child and an even better adult. When he became so sick, all I wanted to do was put a bandage on him……but there was no bandage big enough. I guess it is the potential of what he could have been that upsets me most. His attitude to his illness has inspired people around the world. What a legacy he has left!

God Bless You, Simon. It was a privilege to have been your mother. XXXXXXXXX

We had a beautiful funeral service for Simon on Friday 7th November, after a Rosary Vigil the evening before.

Simon had made some preparations for his funeral, including chosing his songs - U2 and Powder Finger - aswell as vetting his eulogies and chosing his pall bearers.

Approximately 600 people attended the service, showing just how loved and missed Simon is. The funeral was followed by a heartfelt St Bedes Haka before being taken to the Memorial Park Cemetary.

At the cemetary the day turned cold and wet - maybe this was Simon telling us to hurry up and get to the pub for the wake, which was another great celebration of Simon's life, held at an Irish Pub where memories and stories of Simon were told.

I have copies of the Order of Service, the Eulogies, the Homily and a poem that was read at the service, all of which were truly amazing, moving and thought provoking, aswelI as some photos of Simon -I am more than happy to email copies of these to anyone who would like, just leave a Private Note on this Blog with your email address.

Thank you to all of those who attended the services, and to those who couldn't be there thank you for all of the emails, flowers, cards and messages of support.

Eternal rest, grant to Simon oh Lord, and let perpetual light shine on him.
May he rest in peace.

Hi,

Some of Simon's fantastic friends in London have organised a celebration of Simon's life at the Southerner (where Simon's farewell was held before returning to NZ) on Friday night (7th November) at 7pm, followed by a send off down the Thames River.

I hope you have a great time remembering all the good times and give Simon the farewell he deserves.

Thanks to you all.

Simon lost the fight this afternoon.

He died peacefully and pain free at 2.45pm today (Tuesday, 4th November) at Nurse Maude Hospice with his family and friends around him. After a tough battle we are thankful that his pain is over and he can now rest in peace.

On behalf of my parents Philippa and Michael, and sister Caroline, I would like to thank all of you for the support you have given Simon over the past months. All of the comments and emails you have sent helped him stay strong and positive until the very end.

God bless Simon. May you rest in peace.

Two days ago, while my parents were at home catching up on sleep, the nurses advised me to call them and get them to come to the hospice within an hour or two as Simon was showing the signs that things were coming to an end. But in true Simon form he is still fighting on and isn't realdy to go yet.

He has been unconscious for the past few days, fighting infections and taking very short, shallow breaths. We have been talking to him and letting him know that it is ok to give up the fight and let go - he'll let us know when he's ready.

He is very peaceful and the staff at Nurse Maude are doing an amazing job caring for him.

Simon asked this morning if he could be taken to the Nurse Maude Hospice after a hard and painful night last night. It was a hard decision for him but he is still hoping to return home after the pain is once again under control.

He is still very confused and unclear in his thinking, but he smiles and makes sense of the messages and comments that come through each day. I read them all to him most mornings and even though he is unclear on most of his thoughts he can tell me exactly who each of the people are who have signed off messages and he nods and smiles as I read them to him. He is as overwhelmed as we are with all of the amazing, kind and thoughful messages.

Thank you once again for all of your support and prayers - and a special thank you to Simon's friends who have given up many days and nights to care for Simon over the last couple of weeks.

Louise

I am aware that people are checking in daily for updates on Simon. He is unable to update this himself but he is still battling on, 2 weeks after he was told to think in days rather than weeks or months and it doesn't look like he is going to give up too easily.
Simon was admitted to hospital again on Saturday and discharged this morning, now back at home after a pain increase due to an infection. The decision was made not to treat the infection as it would be 'futile', but to increase the medication to minimise the pain and discomfort. As a result of the increased medication Simon has become less coherent and wafts in and out of clarity.
I will keep you updated on any other major changes.

On behalf of Simon I would like to also thank Anna and the team at Sky in London for their wonderful fundraising efforts with the 'Simon Toomey Quiz and Auction' as a result of which $22,000.00 will be donated to the Cancer Society in Christchurch. An amazing effort.

Thank you all for your ongoing prayers and support.
Louise (Simon's sister)

Hi everybody

I was discharged from hospital a week ago now, at which point I was told to start thinking of my prognosis in terms of days, rather than weeks or months. This was easily the hardest thing I've heard about my situation, but on the plus side it now means that I have at least made it through the first prognosis and (I guess) can consider everything else a bonus.

I have had a mixed week at home. It's mostly been pretty incredible, as I have had a lot of visitors from all over the place coming around to spend time with me and generally make things a little easier. It's been pretty tiring though, hence the lack of updates.

I can definitely feel myself getting progressively weaker every day though and I've felt a lot of new pains all over my body in that short space of time. It's hard not to think that even if the latest prognosis isnt going to turn out 100% accurate that it won't be far off, and that there won't be too many more updates before the inevitable happens.

In the meantime, keep checking in; I have shown my sister how to update the blog, so either way it is probably the best way to keep yourself in the loop.

cheers

simon

Hi everybody.

I recently received a letter and a package from Mr Marcus Beaton and his Room 3 class at Murchison primary school. Marcus and his pupils sent me a fantastic collection of original poems and stories which I'd love to be able to share with you here - it's amazing how kids are the ones so often able to zero in on what's truly important at difficult times, and I've been reading them all regularly to draw strength from.

Marcus and three of his teaching colleagues are doing a fundraising bike-ride for childrens's oncology throughout NZ. Their team is called "On Task", and their account number for donations is 03 1702 0 22 22 00 00 (Donations / deposits can be made directly at any Westpac branch or online, under the account name "On Task.")

Any donation you can spare will be greatly appreciated by me, by Marcus and by room 3, and by all the recipients of the donations throughout New Zealand.

Thanks for your support, I will post a fuller update of my own situation later on today or tomorrow.

cheers

Simon

Hi again.

I am writing this message from home - I haven't been discharged yet but they have let me out on day leave over the weekend.

The pain I was experiencing last week was caused by a dropping off in my immune levels, as a direct result of the chemotherapy. As a result of this, the oncologists are probably going to pull the pin on chemo altogether. I probably overstated the good that chemo was doing me in my previous postings - although it had been successful at treating certain minor tumours it had never done any damage to the big one in my liver, which has always been the biggest cause for concern.

The doctors are still looking at trials in Australia, although they are warning me not to be too optimistic about these. The potential benefits of taking part in them are pretty remote and may not outweigh the risks associated with travel. Of slightly more promise is an organisation called the Malaghan Institute in Wellington which offers more treatments and trials that I may be eligible for, without the need for too much strenuous travel.

Overall though, it's hard not to think that a lot of my cause for hope has disappeared over the last few days, and that my time left is being measured in much smaller intervals. I'm still hoding out for a "Ken Shapiro" miracle, but my mind is definitely coming around to the reality of my situation in a way that I don't think it really has before.

I'm not sure how frequent the updates will be from here on. I appreciate that for a lot of people this is their main portal into my situation, so I will try and give a brief update every week or so as I'm able. In my current state of mind I don't know whether I will be able to write the longer philosophical entries that I used to, but I'll see how I go and if that changes at all.

A big thanks once more to everyone that got in touch while I was in hospital with their messages of support.

cheers

Simon

This is a quick note to let you all know that the lack of recent updates is because I was hospitalised on Monday night with bad pains in my side and back.

There have been a few developments since then, and while I wouldn't call any of them positive there is no immediate cause for concern. I will write more about it all when I am out of here and have more time (hopefully next week) but in the meantime thanks to everyone that's emailed me with messages of concern and support over the past few days.

cheers

Simon

You might have noticed that some idiot has commented on every single one of my blog entries with a link to his stupid website. Please ignore these (or better yet, track him down and abuse him). Unfortunately I can't work out how to delete them yet but hopefully I'll have it sorted soon.

In the meantime I have changed the blog settings so that I have to approve all comments before they are made public, this means that if you make a comment you may not see it on the blog for a day or two.

cheers

Simon

Yesterday was my fourth course of chemotherapy. There's nothing really to add; it seems to have made me more tired than any of the previous ones but that's nothing to be worried about.

Mum thinks that now that some of my minor tumours have shrunk, that the chemo will be able to concentrate completely on my liver, and that seems like a pretty good theory to me.

Have a good week

Simon

The French physician René Laennec was the first to describe melanoma as a disease entity. His report was initially presented during a lecture for the Faculté de Médecine de Paris in 1804 and then published as a bulletin in 1806

The first formal acknowledgment of advanced melanoma as untreatable came from Samuel Cooper in 1840. He stated that the only chance for benefit depends upon the early removal of the disease. More than one and a half centuries later this situation remains largely unchanged.

When you think of all the deadly diseases that have been wiped out completely in the past couple of centuries, along with all the advancements generally that have been made in medicine, science and technology in that time, it seems absurd that melanoma is still pretty much just as untreatable today as it was 150 years ago.

A cure has to be around the corner somewhere.

"A mixed bag" was how Dr Harris first described the results to me this afternoon, and I think I'm reasonably happy with that. To summarise quickly: the chemotherapy has been very effective at shrinking some of my tumours, notably the ones in my shoulder, abdomen and lungs. What it unfortunately hasn't done (so far) is to reduce the spread of the cancer in my liver, which is the main thing we were hoping for.

Having said that, we are only halfway through the course of treatment, and we can press on with it knowing that it's worked to an extent, that I haven't suffered bad side effects, and there's a chance I will have a further positive response as the treatment continues.

As I mentioned last time, chemotherapy will only show a marked difference in about 20% of people in my situation, so I'm pleased to be part of that minority, even if if wasn't quite as positive as it could have been.

I received dozens of messages of support over the past few days while I was away, thanks to everyone for those, as well as all the thoughts and the prayers.

cheers

Simon

This is just a quick message to mention all those people who have shown some real generosity to me and my family recently. I don't want to say too much because I know that people aren't doing these things for plaudits, but I would like to acknowledge everyone who has sent gifts and made us offers, both anonymously and otherwise, there's been a few of you and they have really made us all feel quite humble, and privileged to be able to take you up on your generosity.

This also extends to everyone who continues to send gifts of food, including the Phantom Cake Fairy (who has been outed, and is therefore no longer phantom nor fairy, and who's latest offering I have in front of me at the moment, and which is as excellent as ever.)

I am back in one piece from the roadtrip, next update will be on Tuesday, post scan results.

Simon

Tomorrow I will be having a CT scan of my chest and abdomen. I think it will be the sixth CT I have had so far this year, and it's also the most important one since I was first diagnosed. It willl let us know, amongst other things, whether the chemotherapy has been successful at the halfway point, in terms of slowing or shrinking the growth of the cancer.

I'm not sure if I've mentioned it before, but chemotherapy is actually largely ineffective against advanced melanoma. Only about 20% of patients will show a genunine, successful response to the treatment, so statistically things aren't that promising. But as I think I've said, I am not some hypothetical statistical average - if I were then I wouldn't be battling cancer at 28. And more importantly than that, I feel good in myself that the treatment is making me feel better, and the two tumours that I can physically feel both seem to be getting smaller (although that could be my imagination.)

Anyway, I won't get the results of that scan for a week or so, to enable a full report to be written. The timing has worked out quite well, as a friend of mine arrives from Australia tonight, and the two of us will be doing a bit of a roadtrip around the South Island starting on Wednesday, which will be a good way to pass the time and keep my mind off worst-case-scenarios.

Barring any setbacks, unexpected developments or changes of plans this also means that I probably won't update the blog for at least a week or so. In the meantime, anyone keen for a melanoma-journal fix might like to check out Becky Luker's blog at www.positive4cure.blogspot.com. Becky is an American who is fighting a similar fight to mine, and she emails me regularly with messages of support. She has an amazing attitude and her blog has a lot of interesting links for people wanting to learn more about our condition too.

Have a great week

Simon

Here's one that I meant to post a while ago but didnt get around to it:

"Sometimes the big questions are the easy ones to answer. It is the little questions that are always the most difficult. Like, do you get a buzz out of seeing a rainbow? Does the thought of not being able to take on a dozen long-necks leave an empty feeling in the pit of your stomach? Whilst none of us really like work, what would you give to be able to get into full time work again? Or maybe I should ask, are you able to work? Have you talked to a publisher about having your memoirs recorded for all time? Has anyone told you lately that you are an incredibly brave person?"

1) I wouldn't say that I get a buzz out of seeing a rainbow, exactly, but you certainly learn quite quickly to take genuine pleasure from the smaller things in life. Spending time with my family, seeing my niece smiling and getting to see her grow up - those sorts of things take on new meaning and importance when you start to think of them as gifts rather than things to be taken for granted.

2) I can still have a beer or two, which ultimately is another thing to be grateful for, and which I'm definitely not taking for granted :-)

3) I'd love to be able to get into work again. I think I've mentioned that I'll be looking to do some sort of volunteer work once things stabilise a little bit; unfortunately at the moment I can't commit to a great deal but hopefully once the chemo is out of the way I'll have a better chance to make use of the time I've currently got on my hands.

4) I haven't really thought about speaking to a publisher. If someone came asking it's something I might consider, especially if I end up beating this. Maybe someone will record these blog entries for all time, but at the moment my priority is on getting better rather than on any legacy I might want to leave.

5) People tell me I'm brave all the time. I don't know how true it is, but it's nice to hear.

cheers for the question mate, and apologies for the delay in answering it

simon

Here is a question that came through a couple of days ago:

"Hi Simon
I was wondering if you changed your diet at all since been diagnosed with cancer? If you did, what it was like before and what is like now?
Wishing all the best for you :) "

One of the first things I asked after I was diagnosed was whether I should make any changes to my diet or my lifestyle. My oncologists both in London and in NZ said pretty much the same thing - that while a good diet is a big factor in the prevention of cancer, there's no evidence that making any changes to things now would improve my prognosis. My doctor here actually went a bit further, and said that as I likely don't have a lot of time left I would be better off eating foods I enjoy, rather than trying to start a new lifestyle I hated on the minimal chance that it might make any difference.

I wasn't quite prepared to write off the role of diet so quickly, so I read a few articles on the subject, and I have consciously made a few minor changes as a result. I eat more fruits (especially grapes), vegetables, nuts and wholegrains because I like them and they're healthy, and because of various cancer-fighting properties that various sources say they may have. With the chemo tending to make me fatigued I am also conscious of eating to keep my energy levels up, and to generally give my body the strength it needs to carry on the fight.

Due to a number of reasons I'm also drinking less alcohol than I have at any point during my adult life, although several people have insisted that the curative properties of Guinness aren't to be sniffed at, so I've been trying to maintain a healthy flow of black pints through my body when I can as well :-)

cheers for the message.

PS I think I have a couple of older questions for the blog that have been lost amidst all the other messages I've received. I'll try and look for anything that I didn't get around to answering, but in the meantime feel free to send or re-send any more questions you might have.

thanks

Simon

1) Today was round three of chemo. There's nothing new to report so far, although it's worth pointing out that the atmosphere in the chemo ward is always the exact opposite of what it should be; given that it is full of people without long to live who are receiving an invasive course of treatment that isn't guaranteed to work. Everyone is always friendly and cracking jokes which makes the whole thing a lot easier on everyone; this is also due in a big way with the attitude of all the nurses in the day ward who do a fantastic job.

2) I am still miles behind on my emails, but thanks to everyone who keeps sending me messages of support. I still have hopes of replying to you all individually, but as I've said I am just getting so many messages backing up that some are bound to slip through. Please keep sending them, as I read and appreciate them all, and I'll do my best to send as many replies as I'm able to.

3) The Phantom Cake Fairy made another visit yesterday, leaving us an excellent caramel-walnut cake, thanks again to whoever you are...

Yesterday was an interesting day. I was due to meet with my oncologist before my third course of chemo next week. These meetings are normally pretty routine (checking white blood cell counts and other quite general things), but then he floored me a little bit by saying that the headaches I had last week could possibly be due to the cancer spreading to my brain, and he'd arranged a CT scan of my head to confirm or deny this.

So I got the scan, and then had to endure a nervous couple of hours waiting for a neuro-radiologist to look at the results. The good news is that it was clear, which means that my headaches were just headaches, and if the cancer is advancing then it hasn't reached my brain.

This is what passes for good news in my world these days. A year ago, good news might have meant that Rob and I had finished our month-end on time and on budget, and that the weather forecast was good for the weekend. Today, good news means that doctors can't see any signs of cancer in my brain. This probably isn't "good news" as much as "the absence of bad news", but as I think I've said before, I take victories wherever I can find them at the moment.

Next course of chemo is on Monday, and I am also due for a full body CT scan sometime in the next week or two. That scan will give us some real good or bad news, in terms of how effective the chemo has been at shrinking / slowing the tumours so far. I will keep you updated.

Simon

If you ever develop cancer, one good thing you can look forward to is that lots of people will feel compelled to give you food. Every good cook that you know will be dropping off yummy soups, pies, casseroles, lasagnas, biscuits and cakes, so you won't ever have to worry about what's for dinner or dessert (or lunch, as long as you don't mind leftovers.)

Most people will give you the food in person. But if you're lucky, you might come across a "Phantom Cake Fairy" like we have at home. The PCF is an excellent baker of both carrot and banana cakes, but he or she is extremely shy, and only leaves their wares at the gate, even when people are home.

Anyway, I just wanted to say a couple of thankyous - firstly to all those excellent people who have cooked meals for us and given us one less thing to worry about at home, and secondly to the Phantom Cake Fairy, who as well as a couple of first rate cakes has also given us an excellent topic of conversation as we indulge ourselves. If you want to send a message confirming your identity then we'd love to hear from you so we can thank you in person, but if not then please accept our thanks from out here in the blogosphere.

cheers

Simon

Here is the link to the story the Christchurch Press ran on me today (Mainland section, page D5 if you're in the neighbourhood.) I thought the article was quite good, although the headline certainly doesn't pull any punches:

http://www.stuff.co.nz/4674114a20475.html

Things have mostly been pretty good with me. I had a slightly rough week, laid up in bed for a couple of days with migraine headaches which we are pretty sure are the first real side effects from chemo. They have passed now though and I'm feeling pretty good. My next course of treatment is a week from Monday.

Hope everyone has a good weekend.

Simon

Here is another question that came through recently:

"You seem really positive in your thinking in that you imply that you are confident you will beat this - is this using the power of positive thinking, or do you think it is a bit of denial, given the prognosis and statistics? I think positive thinking is a hugely powerful thing and if you didn't have it your body would certainly give up along with your mind, so I hope these positive thoughts stay around."

I've said before that my overriding philosophy throughout all of this has been that it's ok to hope for and believe in the best, as long as I am prepared for the worst. I don't think I'm in denial, I've written several times about dying, and I realise that statistically my death is pretty much inevitable at some time in the next few months. But at the same time, I am not some hypothetical statistical average - if I were, I wouldn't be battling cancer at 28. I don't think that positive thinking is the answer to everything, but as long as you're doing it with the right attitude it has to be of some benefit.

Here is part of a message from Brendan Gregg in Australia that I thought summed up the position quite nicely:

"As I read your entries and answers I have to say I really believe that regardless the ultimate outcome of this rather dramatic journey for you, your hope and fight will make the outcome a positive one. I also believe that as random and nonsensical as the arrival of these situations are, then surely the same must potentially apply to their departure."

cheers for the messages

Simon

This message came through 2-3 weeks ago, and made me think a bit about the way I chose to answer the earlier question about regrets:

"OK buddy I have a doozy:

Our time on earth is finite….. Some believe that when we die we get
reincarnated; some think we head to heaven…..Those of us who have these
beliefs assume we exist to serve a purpose….. To be good and do good.

Whether your motivation is to prove your worth and enter heaven or
to come back as a pet labrador and not a battery hen…… I think we all
feel that we should not waste our opportunities in life.

So I sit at work, knowing I earn more in an hour than most the
world earn in months, I throw away rotten bananas when half the world
starves and I don’t drink tap water because it tastes bad……I have
desires and aspirations to try and make a difference and I do a bit…. I
give to charities…… I recycle, I feel sad when I see malnourished
children are on TV…… but mate I feel guilty that I don’t do more…… and
I’m wasting my opportunities to be better.

I’m interested to know that given your current experiences, how you
plan to live your life when you recover? What’s proved to be important
to you and what’s proved to have been shit?"

I said previously that I had no major regrets about the way I've lived my life and the decisions I've made. I think I can say that I've mostly been a good person who's done the right thing by others, and that seems to be being backed up by the tremendous support I continue to receive.

But maybe I should be taking a harsher view of myself. I was given a lot of talents which I could have put to much better uses than analysing plant charge-out rates, or posting accrual journals month after month. Lots of people had made a massive difference to the world by the time they were my age; and while it's probably stupid to compare myself to guys like Bill Gates or James Watson, I can look at friends of mine who have won scholarships to Yale and Columbia, who have learned languages, who have fallen into careers that they love, who have travelled more than I could probably ever hope to. And right now, if you asked me to name the single achievement that I was most proud of, I really think I'd struggle to come up with an answer I was happy with.
So maybe I do have more regrets than I realised, even if they're somewhat vague and along the lines of "Well I should have done SOMETHING".

So, assuming I beat this, what will I do to fix the situation? What changes will I make to my life after I hear the words "Simon, we don't know how you've done this, but your latest CT scan showed no traces of melanoma."

I have no idea.

The first thing I'll do will be to throw a massive party, and the second thing will be to jump on a plane back to Europe for a while. There will no doubt be a lot of doctors interested in my story, and obviously I would do whatever they needed me to in terms of research etc as well. Beyond that, I know that my life will be completely different, but I don't really know how. The main thing I will probably want to do is to use my story to help other melanoma victims, along the lines of what Ken Shapiro's done. But I'll want to do more than that too, I'll want to do somethng that's really worthwhile and not related to my condition. Whether that's clearing landmines in Somalia, or teaching in Cambodia, or speaking to schoolkids in Christchurch I can't say, but I don't think there's any way I can just stick to my previous plan of "pick a city, get a job, buy a house." There is far, far more to life than that, and if the cosmos gives me the ultimate second chance then I can say with certainty that I'll make the effort to repay that a million times over.

Incidentally, I have actually begun looking into some more worthwhile ways that I can spend my days now that the Olympics are over :-) I am looking at doing some sort of volunteer work around Christchurch, there seem to be a few good ideas on the volcan website (www.volcan.org.nz) but if anyone's got any other ideas then I'd appreciate hearing them too.

cheers

NB I received 2-3 other emails along the same lines as the above, I didn't think there was much point in reproducing them all, but sorry to anyone that missed seeing theirs in print, so to speak.

Sorry for the lack of recent updates, everything is ok, I've just been pretty tired after the stint in hospital and the second course of chemo so haven't really felt like writing anything. Other than that there's still been no real side-effects which is good.

I was contacted this week by a journalist at the Christchurch Press who wants to interview me for a story tying in with Daffodil Day next week, I am due to meet with her on Tuesday so I will let you know how that goes.

In the meantime, thanks for all the messsages and have a good weekend.

Simon

This is just to let you know that I was discharged from hospital today. Thanks to everyone for the continuing messages of support, I am so far behind replying to them all that I reckon I am going to have to get a PA shortly.

Hopefully I'll have a decent length entry done by the end of the week.

Cheers

Simon

I think I am going to stop posting updates when things go positively. The day after my last entry I woke up with new pain in both my knees and in my right shoulder. By Sunday night that pain had gotten so bad that I had to go back to A&E. I was admitted back into the oncology ward and I'm still here as of 9pm Monday night.

The pain is under control but they are still not 100% sure what the story is. X-Rays seemed to show that my knees look normal, which means that the pain there is likely "referred pain" (where you experience pain further along the nerves that where the pain is originating, if that makes sense.) The shoulder pain might be related to some new activity in that area though - I am due for a bone scan tomorrow (Tuesday) which should tell us what's what, although it sounds like I might end up needing some more radiotherapy on my shoulder before too long.

Second course of chemo was today too, seemed to go pretty well with no side effects as yet (*cue nervous glancing around and furious thumping on wooden computer desk*)

Sorry for not updating for a while, I've been working on a couple of longer entries and should have them up early next week. In the meantime I'll just give you a quick general update about treatment etc.

Today is Saturday, and I am almost at the end of my first of six three-weekly chemo cycles (next treatment is Monday morning.) Yesterday I met with my oncologist Dean Harris, and it went pretty well. He said the absence of side-effects should be taken as a good sign, as should the fact that I feel well in myself, that my appetite is normal and that I haven't lost any more weight. I might have mentioned before that Dr Harris is a very honest, straight shooting guy, which means that anything positive he says counts for quite a lot.

With the help of Mary Doolan in Melbourne (BIG thanks again by the way) I had tracked down details of a clinical trial for stage 3-4 melanoma patients that's going on over there, and I brought these with me as well. I was a little bit worried that there might have been something I'd missed that would automatically rule me ineligible, but after a quick run through it he said there's probably a reasonable chance that I will get accepted. The idea of a trial really appeals to me, as short of a Ken Shapiro miracle it is probably my only real hope. Even at worst, a trial I'm involved on could mean lives are saved down the line, and as you probably realise by now, I am quite big on the idea of making good things come out of bad.

So, the plan at the moment is to continue with the chemo, with a view to getting me on this trial or a similar one sometime in the near future.

cheers, and thanks for the continuing messages of support

Simon