1,842 days down.......

2017, 1,842 days - that's over 5 years now (woohoo), well what do we say to that?
For me it's no longer relief, I feel very fortunate to be able to travel through life with minimal reference to the events of late 2011 and 2012. Those events haven't just gone away, they are no longer that "prominent elephant" sitting in the corner of the room.
Since I last posted back in 2014 - 3 years ago, a lot has changed at home.
Kathryn and Hayley live away from home, so the house is a bit quieter!
Kathryn works in the prison service (she got sick of the police taking forever to recruit her) and she will shortly start a new role as a 'provisional psychologist' in the prison service with an aim to get her masters in psychology.
Hayley lives in country Queensland and is teaching Prep and Year 1 children in a town 4 hours west of Townsville - she's loving it and fully involved in the local community as you need to be in such a town.
Kyle is at Uni. in his second year of study (Commerce and International business) and working as a lifeguard at the same centre as the girls have done previously. He has also applied to work at the Commonwealth Games which will be held on the Gold Coast in April next year.
Liz is undertaking a Masters degree in education and maintaining her usual prolific workload along with triathlon training. She has also endured over 30 years with me, including 27 years of married life  - lucky girl.
For me, I've started cycling in a group, enthused by Liz's reports of the joys of cycling. Of course, once I started, Liz concentrated on her triathlon training so I never see her anyway! Last July I left work when my role was made redundant - ho hum - it's been a year now of applying, refining my CV and Linkedin profiles with little work success. Not a problem, just sometimes frustrating!!

Family dinner - the five of us, plus my brother Paul and nephew Will, who recently visited from the UK.

So that is where Hairy is at today, five years after undergoing treatment and getting the big R word.
You may recall this wonderful post from Hayley back in July 2012.
http://hairymel.blogspot.com.au/2012_07_01_archive.html

Keep well

2014 730 days down!

Dear all, Hairy here!
I wrote the post below and made minor updates since it hadn't been posted. However I've just had a week of tests and such like so thought I'd further update you all.
I saw Tony 17th July, he was happy with my bloods and etc and then I had a further venesection (blood taking) session.  In my chats to Tony I always mention aches and pains in order to let him decide on what is required from a testing perspective. So I mentioned an ache in my abdomen on the right hand side.  Well the outcome of that was to send me for a PET/CT scan.  This is reasonably unusual for him - he tries to minimise how many scans I receive, however it's been two years since my last scan.  So a week of scans, waiting, (worrying) and then back to visit Tony on Monday 28th.  The upshot was clear scans but with "hot" tonsils. Now the scans can't distinguish between some reactions, and both Liz and I had been slightly under the weather on our return from holiday on 13th July.  So an extra visit to the ENT specialist and he was happy that all is well and the hotspots were from the cold remnants. I still have a slight ache in my abdomen!  I'll add some pics from our Red centre holiday July 3rd-13th.....

Garden of Eden in Kings Canyon

a local

Jim Jim falls

Ancient rock art

Sunset over the billabong

Sunset and champers at Uluru

Written June 2014 with updates
Hi folks,  guess who?.  I've been out of your lives for a year +, and thankfully it has been an uneventful year.
So what's the update then? Well on 3rd July it was two years since that magic word "remission" entered our lives, dear Hayley wrote a fantastic blog entry about that day. http://hairymel.blogspot.com.au/2012_07_01_archive.html
We were on holiday then so I'd thought I'd prepare this a little bit earlier, but of course I didn't get to post it!!

Since the last blog update my health has been pretty good, for which I am always thankful.  I have had a couple of illnesses and minor issues which have been or are being resolved.  I got shingles which was treated quickly and was essentially a non event.  What it did do was highlight that I had elevated iron in my blood, so I've been having blood taken initially fortnightly then monthly which is bringing my iron levels down.  This should be the end of the process (hopefully complete in July) and is likely due to iron build up from the transfusions I received back in 2012.  I've also had some painful sinus problems which having now seen a specialist is clearing up, and will hopefully be gone in the next month or so (woo hoo to that!).  I see Tony in late July for the usual check up, but all has been good in my (more frequent) visits due to the iron level issues.

In the last year I have of course been back at work, and life is essentially back to normal.  We have made the point of booking up some holidays and were lucky enough to get back to the UK and Europe in December / January - during Aussie school summer holidays.

Our trip started in December with a few days in London, then a trip to Berlin for a week (our holiday!).  Berlin is a fantastic city, with old history, 20th century history and of course the cold war history - quite fascinating.  Of course with it being Christmas time we were able to visit quite a few Christmas markets and sample the Gluwein and heisse schockolade mit rom!! On our return to the UK it was a round of visiting, catching up and being entertained.  Catch ups with friends from work, swimming, Scouts, long term mates and so forth.  Then we went to my god-daughter Jacky Evans wedding to Robert Tidbury. Interestingly Jacky was the third of our three bridesmaids to get married in 2013. (Previously Liz's sister Gillian and her cousin Emily had tied the knot in 2013).  A great day thoroughly enjoyed.
Christmas was spent chilling with Gillian and Marshall down in Salisbury with Gillian and Marshall having a great party in the local village hall to celebrate their wedding. We got to meet so many family plus friends from way back.
The next few weeks were back to London for New Year, up to my sisters near Newcastle with more rellies and then all the way back south to my brothers - I thought this was a holiday!!  We had a great time and enjoyed every minute.
We've had a few, and are going to have more, short breaks back here in Aus. often for sporting events like the Mooloolaba, Gold Coast and Noosa triathlons, plus "us time" since the kids are off doing their own thing!  Liz and I are off for our first trip to the "Red Centre" early in July. A tour from Alice Springs to Darwin over 9 days - we're looking forward to that!
On the kids front they have been busy as usual, Kathryn taking an honours year at University of Queensland, plus being successful in her application to join the Queensland Police Service - well done KT. (She's been doing real work also!).
Hayley is busy in year 3 of her degree and has been selected for a special stream to undertake teaching practices in disadvantaged schools which should help her in obtaining a job post graduation.  She is also busy organising a mega  trip to Nepal, India and Sri Lanka at the end of the year, I'll worry about that later!!
Kyle has been enjoying a gap year since graduating from High school late last year. He's been working as a lifeguard and at Maccas whilst organising a big Gap year trip.  He left Australia this week to travel to California USA to work at Camp America as Mountain Bike leader. This is 9 weeks of leading kids in MTB activities whilst they are at camp. Following that the rough plan is to travel through the States to New York and then onto London to work (and travel) leaving Europe from Paris early in December. Wow what a trip for an 18 year old!!

Well I think that is enough of an update.  I'm really glad I'm not having to update you all more (if you know what I mean!).  Be good, keep well,

Winter Warmer - first beer in England!

Gillian and Marshalls party

Walkies

Northern Drinkies 1

Northern Drinkies 2

Mooloolaba - Team Mellon Girls

Bye Kyle - have fun

June update and some thoughts...

Well here we are, I've left you alone for a while and we've all gotten on with life.  Let's get the health update out of the way - I saw Tony on Friday and he was happy with all of my bloodworks, general health and that my lymph nodes were fine.  As he said, in general I would know if I'd fallen out of remission.  So that is good news.  Yippee.

I had also collected Kathryn from the airport that morning, she has now returned from the USA with her brand new degree in hand.  She is back with us at home (a culture shock I'm sure), looking for work and the next stage in life for her.  Liz and I did a quick one week visit to the USA during May in order to be present at Kathryn's graduation - you can't miss something like that!  We crammed a lot in to 7 days. Graduation, help KT pack up, drove from California PA to Washington DC for a couple of days, drove to New York city for three days and then the big flight home leaving Kathryn in NYC with her besties.  Hayley recently successfully completed her first Practical teaching placement - she did very well and seems a natural.  Kyle is in his last year at school and has recently finished some exams.  He also qualified for Triathlon age group sprint world championships, to be held in London in September.  So he is going to be busy with school, training (if he can shake the illness he has had for a while) and the Worlds.

Comment on MCL
It's been an interesting few months on the medical side of things. When we started this journey we resolved to do everything possible at that time - hence the heavy chemo and the auto stem cell transplant, our thoughts being that new treatments are being developed all the time.  Recently we've seen very promising drugs being put through testing and being given special status in order to allow them to quickly progress to approval - in the USA!  Australian approvals apparently tend to hang off of European approvals more so than the USA.  So once approved, we here in Australia need to hope that the Aussie approval process is equally adaptive.  You may ask why? the main thing about the new drugs under test is that they have reduced side effects and are less toxic - a movement in the right direction.  I do know of people who are in tests for these new drugs and it does sound promising - but as usual not necessarily a panacea!!

"The cancer to have"
Recently our former Queensland Premier was diagnosed with Non-Hodgkins Lymphoma - blood cancer if you prefer.  Of course the press were into this big time and as usual were using their limited knowledge of the subject matter.  A facebook friend wrote about the article and the way it was presented.  Please have a read and hopefully increase your awareness of the impact that these illnesses can have.

"Today we learned that our ex Queensland Premier Anna Bligh has been diagnosed with Non Hodgkins Lymphoma, to the reporter who stated if you were to get any cancer this is the cancer to get....this remark angered me to the point I had steam coming out of my ears....what a load of B S no cancer is good be it blood cancer or a solid cancer. Yes some Lymphomas can be cured but many of us have been doing battle for many years with numerous relapses. To that reporter come live in the life of a NHL cancer patient going through chemo and a bone marrow transplant. Because Anna Bligh is a high profile woman she will get all the attention....but think of the quiet fighters out here doing battle on a daily basis not knowing what the future holds for them. I am sorry she has cancer I hate CANCER but this is not an easy cancer to beat. We need to educate the public. I don't usually get on my soap box but I have friends who have Hodgkins and that is supposed to be easier to beat than Non Hodgkins and they are fighting for their life ~~~ Cancer is Cancer no matter what flavour~~~~~"

Thanks for reading.

January update

10/1/12

Happy New Year folks!
Well December came and went and I didn't update you - you can take that as no news is good news! We all hope that you've had a great Christmas and New Year - we certainly did!

I'll update you on my health quickly - day 157 post transplant - woop woop! Everything is good (even the mindset!) - I had a review early December and then once again today.  Bloods are all clean and my counts are approaching normality - platelets being lowest which were at 140 (up from 130 in Dec) with the norm at 150.  So this is all very encouraging and a relief to us all. 

I do say to people "I'm in remission and long may it last" because that is where we are in terms of the impact this disease has on us all - unfortunately it's remission not cure - however it appears that successful treatment is moving more towards a potential for the 'c'.  So recently I have been lucky that to some degree I haven't even been thinking about the illness - this really helps the mindset.  In a couple of weeks I'm having my port removed (from my chest) - this is done under local and is something of a farewell to an old friend, which was dependable throughout all of the former treatments.

Mellon doings
Liz had a milestone birthday in November with a party with many friends.  She enjoyed it once we were at the party!

We've had a lovely trip to New Zealand, returning home on New Years Eve.  We toured through the North island on a pre-planned tour which showed us a lot of the top spots that must be seen. Relaxing, informative, beautiful and sometimes exciting.  I won't bore you all with the details but an idea is as follows:-
Bay of Islands - beautiful, swim with dolphins, very wet bike ride, drinkies!!

Auckland - the city and Segway tours.

Coromandel Peninsula - beautiful, dodgy Garmin navigation, great walks, changeable weather (well it was NZ!)

Waitomo - CAVING!! (yay!) - glow worms, blackwater rafting, fantastic streamway.

Rotorua - smelly hot springs, mud baths, geysers, cultural presentation and Hangi meal, Liz and Kyle rafting the Kaituna river and the highest commercially rafted waterfall in the world - 7m Tutea Falls.

Taupo - a short float plane ride, low oil pressure, another float plane another ride!!!! Nice accommodation, water out of the light fittings! another nice accommodation!!  Beautiful, big storm.

 

Huka Falls above

Napier - Christmas day - pressies, beautiful dinner - chilling & drinkies!

Wellington - the windy city, literally! Te Papa museum, catching up with long time friends Karen & Paul - brilliant and a lovely dinner with drinkies.  (the only photo is below courtesy of Karen - thanks mate - notice you avoided getting your piccie taken!)
                              
Christchurch - home from home with Lesley & Barry, catching up with Lesley's Mum and Dad - smashing people.  Great walks, sad city centre and surrounds, interesting container Mall, "old-time" chats.

1600 kilometres!  1000 miles in old money.

Hayley flew from NZ to Fiji with "the Girls" and had a great week sunning themselves and chilling.
Kyle is currently in Sydney competing tomorrow in a triathlon, he'd like to qualify for the world championships in England in September -watch out blighty!
Kathryn is in Arizona on training camp with the Cal U team.

Liz and I are on holiday next week also (chilling out!) and we are planning a USA trip in May for Kathryn's graduation.
Some piccies of New Zealand above - I'll update you in about 6 months so that I don't bore you all with more holiday chats!!

October update

Hi friends.
A short update for you all.  It's the 29th October and I've just started my 5th week back at work. It's been an interesting time, with a number of colleagues (and friends) leaving the company following a round of redundancies.  For me it has also meant a change of role, which will bring me some new challenges.  I've been working in my old role for the last few weeks and I'm just starting to pick up the new role this week - it'll keep me busy I'm sure.
Health wise all appears good.  I had a review with Tony on the 9th and he was happy with my bloods and how I felt.  Platelets were a little low compared to normal, however they were at a level that was to be expected.  I am feeling remarkably well, so I am extremely pleased with that.  I'm due to see Tony again early in December & I'll update again after that.
The main legacy that this illness has left with me is mostly mental.  Whenever there is an ache or pain there is a tendency to think the worst, especially if the symptom occurs at a lymph node location.  I've been told the first year is the worst for this!!!  To be fair, having read of the trials and tribulations of other patients, I think I have got off pretty lightly with only very slight chemo. side effects.
We are able to get out and about more now.  Liz and I visited Melbourne just over a week ago, a bit of tourism plus Liz did the round the bay 210km bike ride on the Sunday - well done to her.  We're sorting out a holiday to the north island of New Zealand later in the year. We chose to stay close since we didn't know how well I would be holding up.
Well I think that is all that I can tell you, we hope that you all stay fit and well and I'll update you in about 6 weeks.
ps Hairy has got a smattering of hair, very downy and just as grey!!

Alan

After the Stem cell transplant

Hi there,
I'm well. As you know I am now recovering after having had the stem cell transplant (SCT) (my own stem cells).

A few days after the transplant as expected my blood count went through the floor and I was seriously neutropenic - at high risk of infection.  Then it was for me to dodge infection until I was no longer neutropenic (Thursday 16th - day 9 post transplant).  Luckily I did very well and missed out on any infections!  The following day, Friday, they let me come home - with strict instructions to stay indoors.  I've been home now 12 days, initially I was a little under the weather but ok.  I was experiencing an upset stomach and nausea. However a chat with the support nurses led me to continue using the anti-nausea tablets regardless of 'apparent need' ie. even if feeling good.  This has kept me well and I am now feeling good in myself.  This treatment was certainly the hashest I have received, they told me that, but you tend to say to yourself "I did ok on the others!" - WRONG!!
Having left hospital the next steps are to again let my bloods recover to a 'normal' level, gain some fitness and muscle - I've lost 13 kilos in weight since November & based on BMI am not 'overweight' (Kyle disputes that!) Ha Ha.  I will also head back to work and hopefully a very long and healthy remission.  Of course, all this treatment has meant that my nice new hair has once again been flushed down the drain!! Ha Ha.

Our family are all well, thankfully.
Kathryn returned to Pittsburgh from London (Olympic city!!!) on 19th, it's her last year at California Uni. of Pennsylvania studying psychology.
Hayley is at Queensland University of Technology (QUT) studying primary education year 1. 
Kyle is in year 11, so the big year next year!! 
Liz is, as usual, very busy at work and we are trying to arrange a holiday, constrained somewhat by my weakened health and Kyles requirements for Triathlon training!!  We have been severely limited since November in that I've had to be in striking distance of hospitals in case of infection.
Anyway I'm hoping to be 'back to normal' blood count wise in the next few weeks or so.  I see Tony again in October, having seen him today.

Thanks for following the blog, it's been great to know that friends have 'got my back'.  I really think the blog has been a great vehicle to keep me sane and everyone informed, I know many have found it informative and even entertaining!!   Some haven't liked it for their own personal reasons, and I've been able to keep them separately informed.  So from now on Hairy's journey is to stay in remission and I'll just be updating after the 3 monthly reviews starting in mid October.  Hopefully there won't be much to say!

Thanks to you all for being there - below are some piccies of my wonderful support crew - the first photo was a professional photo taken before I lost my hair, and in those first hectic days of discovery!  The constant in this journey has been my beautiful wife Liz and of course the demon threesome.

 Kathryn - trying to parcel herself up for the journey to Australia

 Hayley in her element, volunteering at the nursery in South Africa

 Kyle showing off his (plastic) abs at school athletics carnival

PS I reckon I'll be getting back to some whitewater paddling by November - yippee!!
A fun video here!!  https://vimeo.com/33521087


Alan

Taking the Stem Cell transplant path.

Back in July, Hayley wrote about next steps - she said -

"The next few weeks will see Mum, Dad, Tony and possibly some other oncologists for further opinion to decide if a stem cell transplant will be completed. The transplant involves one more batch of chemotherapy to completely wipe the immune system, before injecting the previously harvested stem cells, to trick the bone marrow into forgetting the disease. The process takes around three weeks, of which most will be spent in hospital, due to the risk that comes with having no white blood cells! For now, no decision has been made, but much research and medical advice will determine what the next step will involve."

Well that period of time led to some tooing & froing between, home, the hospital, the internet and other resources in order to make a decision.  In between times I even found some time to go to work!!  (Work have been brilliant throughout all of this illness ).
Well the upshot was that we decided to proceed with the stem cell transplant.  Our view was that whilst the disease is down, give it another good kicking!! plus I've fared relatively well throughout the prior 8 rounds, so hit it whilst I am capable!!  Our readings also indicated that transplant now, may prolong remission. Of course however there is a risk to the transplant which must be considered!!

So the process is (started July 30th)
Week 1 - Into hospital on Tuesday, received chemo on every day that week from Wednesday.
Week 2 - A nasty nasty line was put into my neck (vascath), plus a big chemotherapy day on Monday.  Then I received the previously harvested stem cells (see Feb.) on the Tuesday.
Rest of week 2 cells to drop to zero.  Alan feels generally sickly but fares relatively well.
Cells are currently down at zero (August 12th) & will be down for around another 8 days - HIGH infection risk.  I have to watch any potential infection sites, like a small spot on my leg or any skin break.
Week 3 & 4 time to wait for cells to recover. Maintaining my platelet and red cell levels.

As soon as cells hit required level, I can go home to fully recover.

So that's where we, Team Mellon, are today.  Thanks for reading the blog again, take care and have fun.

Alan