Do you know someone who is caring for others?

Hi everyone,

Just thought I'd give you a bit more of an update before I sign off from this particular journey of our lives.

Steve has popped his head into the salon on a few days - he says making a bit of a nuisance of himself! but loving it.

I think those clients who saw him were pretty rapt!

He has some scans this week to check his status - and pending a good result - he hopes to creep back into more work and life.

Overall he is feeling like a new man!

Has energy and rosy cheeks which is a nice change.

Life seems even grander when you get to other side of a challenge - and that's what we're enjoying right now.

I've taken on a volunteer role and some work with an organisation TACSI (The Australian Centre for Social Innovation) who are trialing a unique approach to support those in caring situations.

They are in the midst of the project at the moment and are in fact looking for people who may be in a caring situation who could benefit from a chat with someone like myself (who has been in or are still in caring situations)

They have a group of Weavers (the name given to us in the role) who have a diverse background with the people they have cared for. Some have looked after parents with Dementia, children with a brain injury, people with cancer and MS.

The Weavers role could be to initially a have a chat however there is scope within the role to share ideas and ways to gain or extend support from their network of family and friends.

They are currently seeking real families who would benefit from such interaction (and they would be gaining so much more because they would incidentally be involved in the development of this new Weaver role -which they hope will expand in the future).

If you know of anyone in your network who would benefit and be likely to engage in this opportunity - let me know and someone from the organisation will contact you or them.

You can chat via this blog or call me direct on 0409 676 857,

Really appreciate

The best news

It's official - Steve is in remission!
The doctor confirmed his scans showed him clear of the disease!
It's hard to express the feeling...
We are grateful, happy, excited, overwhelmed all mixed into one!
He now has a period of rebuilding and getting strong as well as enjoying life feeling good!
Needless to say this path to wellness has been the work of all family, friends, colleagues, staff and clients.
Everyone's contribution no matter how big or small made the difference.
We couldn't have done it without you all...
There were times when it was a struggle but we had great support the whole way -
There were so many special moments through the 6 months that we will treasure forever.
For now we'll spend some special time with our family and new grandson - I think his birth has played an important role in things.
Steve has some follow up tests in a month and then 3 months -
But for now we will enjoy this moment with no more chemo or sickness,
Yeh!!!!
Thanks again for all your comments and contact throughout - it has really helped
TriciaXX

Good news

Steve got out of hospital last Wednesday and has spent the last week building up. His last blood results were good and he is feeling stronger and better each day (apart from a sore back from spending too long on those horrid hospital beds!).
We were happy he was out in time for the anticipated arrival of our grandson on the Wednesday but even more happy that the baby decided to wait until Steve improved his health over the week.
So...I'm happy to inform you that Steve and I ARE GRANDPARENTS!!!!
Sidney Hugo entered the world last night at 10.44 pm and it was great that Steve felt up to meeting him in hospital.
Papa Steve got the best present a parent could ever wish for!
So it's a big week...with Steve off to have scans on Friday...
It may well be the last of his treatment - fingers crossed - I'll keep you posted, XXX

Another tough Part B, but 6th cycle is over

Well the 6th cycle is over but not without its ups and downs.
Steve coped well during the week in hospital even though it was really draining.
He came home Mother's Day morning - a little later than expected, but feeling not too bad.
He was ecstatic he wasn't sick on the first 2 days as was normally the case, however he felt more fatigued than usual.
On the Wednesday he looked very pale and by that night it was evident another infection had set in - so it was straight back to hospital.
It was so important to get him onto antibiotics asap - and that they did - the doctors and nurses have been wonderful...
So I was trying to hold off writing this post until he had recovered from the infection but it looks like it will be a little while yet.
The last time he had the Part B treatment, the infection took until about the Wednesday to settle so hopefully by the middle to end of this week he may come home.
He is hoping to be out for the arrival of our grandson who is due on Wednesday - so we'll see...
I'll let you know when he is out of hospital and back on his way to good health,
warmest regards Tricia

5th cycle over!

Steve has just completed his 5th cycle...
He started out feeling pretty well after the Part A treatment - in fact he felt good enough to watch the crows game on the Saturday - but by early Sunday morning (about 2am) the side effects from the chemo really kicked in and he felt like crap!
For some reason this time felt really tough - probably because it was another on top of another...
Anyway that's history now because 5 days later he has picked up a lot - but he does wish he could just feel normal again...
This next week we'll be picking up his health even more so that he feels a lot stronger. So back on the shakes, good food, lots of fresh air and lots of laughs.
His next cycle will be Part B and so far this treatment has been very tough on him.
After that cycle he'll have more tests to determine if he needs the extra 2 cycles of treatment.
We are anticipating he will -because anything less will seem like a bonus!
Anyway, he's keeping busy - thanks Melissa for the jigsaw and the fun gadgets from the staff (I"m really enjoying them too)
Thank heavens also for the football season (and the TV show 'The Voice').
Thanks everyone for your calls, emails and visits on his good days,
Steve said thanks Enza - it's great to hear the staff at Blow are doing a great job,
Hope all is well for everyone,
He misses you all,
Tricia
PS I hope to bring some positive reports next cycle

Steve's surprise

It was Easter Monday that Steve received a big surprise.

The surprise had been in the making since the beginning of the year when Harold and Josie visited us at Maslins Beach. 

Aware that Steve would have no energy to do any outdoor gardening, they thought it would be a great idea to organise some sort of working bee to help him out.

They left that day with an idea which in time became a well crafted plan that included hairdressing industry, family and friends.

It became the most well hidden secret. Ongoing coordination by Harold and Josie over the months resulted in a 'master piece!'.

It was the landscape design and work of Cameron Polgreen Contractors who eventually transformed a piece of dirt into an amazing garden sanctuary.

A permanent memory of the love from his family, friends and colleagues now exists close to his heart.

A small gathering of family and those involved in the planning were there to witness the wonderful moment when Steve arrived at his ‘Garden of Wellbeing’ (aptly named by Harold).

It was an amazing effort by Harold, Josie, Shannon and all others involved to create another uplifting moment for Steve during this tough period of his life.

Steve was overwhelmed by it all – as you would imagine...

Lucky it was a ‘small affair’ on Easter Monday – unlike the full attendance of all contributors planned for the week prior but cancelled due to Steve’s health.

He would have been really ‘blown away!’ (not sure if that would have been too good for him at this point!)

So the last few days he’s found some energy to potter in his garden and enjoy the plants and beautiful weather.

Another ingredient I’m sure for healing and wellbeing.

His health has picked up a bit more now – just in time for round 5 on Monday.

Fingers crossed that he has a smooth run...

Once again thanks everyone for your ongoing communication, calls and emails - they truly do lighten his spirit...

Home in time for Easter

Well it was a long week in hospital for Steve but he is finally home.

Such a lot happened throughout that time - Steve went through a roller coaster of tests, bloods and procedures.

Bottom line his temperature was due to a bug his body got from the chemo but fortunately he responded well to the antibiotics.

His low blood levels as a consequence required lots of support – thank you all you blood donors!

We were a bit concerned he would miss the window of opportunity to catch his stem cells that was a procedure planned to take place at the QEH on Friday.

It wasn’t until the following Wednesday that his body was actually in the perfect state for the procedure so although a few days late, they successfully collected an abundance of stem cells that will be frozen for a rainy day.

So last night he came home and he had his best sleep for weeks!

Despite what feels to be a rocky road the doctor reassured us he is doing extremely well.

As per his usual form, Steve has tackled the challenges with strength, courage, humility and humour – and right now as I write this I can hear him chatting to someone on the phone with lots of laughter in between!

He’s really happy to be home in time to enjoy Easter with family.

By the way thanks everyone for your messages – we may not respond to them all but we are certainly receiving them with much appreciation,

Thanks again

Back in hospital

Well we went into the week quite optimistic after the good test results. Steve questioned the specialist whether it meant he would only need 6 cycles rather than 8 cycles but he said that was not necessarily the case.

I dare say he was disappointed with that news – it would have meant that after this next cycle he would only have 2 more – somehow this seemed more bearable.

He had a day of feeling down about the thought of more cycles but in his usual amazing manner made the adjustment and accepted he may be in for 4 more instead.

The week in hospital started well – he enjoyed visits from a few different faces and phone calls as well.

He commenced his treatment a day later this time as his doctor had planned for him to have his stem cell extracted after the treatment. The later start he said would be better.

For that procedure he will be required to have daily injections at home to prepare him for the stem cell procedure which is to take place this Friday.

He finished his treatment last Saturday and went home again happy. He was glad that during the first couple of days home he wasn’t vomiting but somehow he seemed even flatter and more fatigued than usual.

It was hard to tell at first – was it worse or was it always that bad during the first couple of days? On the Tuesday he went to have his usual blood taken and dressing changed but this was in fact a day earlier in his recovery than usual.

The trip into the hospital was difficult. You see anything more than a short trip to the bathroom and back was taxing on his body – so to North Adelaide and back was big.

The nurses took one look at him and predicted he would need some extra blood. He was very pale and low.

That afternoon they confirmed he would need to go in on Wednesday for a top up.

Around 5pm I noticed he looked paler and began to have the shakes.

I knew this was indicative of a temperature – but the reading was only 36.5.

Within about 30 minutes this had risen to 37.8 and a little while after to 38 degrees.

We knew from our last incident that anything over 38 he was to go straight to hospital.

So that’s what we did.
It seems the Part B of the HyperCVAD treatment is much more taxing on his body.

He wasn’t happy but knew it was best.

They put him straight on antibiotics and took more blood.

Yesterday they confirmed he does have an infection and today will hopefully be more specific with antibiotics.

It was hard watching him with his shakes and discomfort while his temperature spiked.

I can’t imagine how hard it was for him coping with not only the toxic effect from his chemo but the infection on top.

But you know even after he was very sick from the temperature, it didn’t take him long to smile. He seemed to be grateful for just feeling that bit better.

He is truly an amazing man.

Even the nurse on said he was special.

Not everyone goes through such a tough treatment with his ability to still find something to smile about.

But don’t get me wrong he is certainly feeling the difficulty of this very harsh regime.

As I write this, I can tell you he has just had a good night – he slept well and his temperature has dropped a little – hopefully all good signs that the infection is on its way out.

The doctor said he could still have his stem cell preparation on Friday so that’s good news.

For now they’ll keep him in hospital until he is well and truly over his infection because the intravenous approach works much more effectively.

Now we just have to find ways to relieve a little more of the boredom that sets in with long hospital stays.

I’ll keep you posted on when he is ‘free’ again,

Warmest regards and thanks for everyone’s wishes and thoughts,

Tricia

Good news

After the last cycle of chemo, Steve had his usual 3-4 days of being very unwell but picked up really well. As I mentioned before he didn’t need a blood transfusion and was feeling quite good. In fact Saturday he felt great. He had a great day out with his mates Harold, Robert and Stan and enjoyed visits from others.

His immune system held up really well and his mood and attitude great. I always know how well he feels by the level of cheek he gives - and I’m happy to tell you he was back in fine form!

Today he undertook scans to help the doctor determine the effectiveness of the treatment thus far. We were hoping for some good news and from the way he was feeling felt confident that something good was happening.

Well the doctor confirmed this. He said there was an excellent response to the treatment and many of the nodes were reduced to nearly normal.

While there is still a long way to go – it is great to know this leading into the next 3 cycles.

I’m sure this great result is not only from the treatment but from the quality mindset Steve has kept throughout and from all of your healing thoughts and prayers and ongoing contact.
Thanks also for those who have supplied good books, videos, games, jigsaws etc- they have all played an important part in this!

Thank you again ...

Home again

I’m happy to let you know that at this moment, Steve is home and doing well.

The week in hospital went relatively smooth. What we’ve discovered is that the road back to recovery - is a joint effort by everyone.

Steve is certainly doing his bit – especially in hospital – he’s been keeping the nurses on their toes to ensure all aspects of the treatment are administered correctly (after last cycle’s mishap!).

Good that he did this time too because his sharp eyes and ears picked up a couple of more potential mishaps – but all was good in the end.

This was the first time Steve didn’t need a blood transfusion because his levels after the week long chemo hit were still quite good.

It’s amazing how happy such things can make you! (Well I was anyway because it suggested to me that his body was holding up well)

After his usual Tuesday dressing change and blood test, his bloods were still good! Yeh...

Steve is really doing amazing...

Despite the first 2 or 3 days when he felt soooo sick (and was a couple of times) with reflux, nausea, fatigue – he still managed lots of smiles and good conversation in between.

Speaking of conversation – he seems to always say it’s me who loves the phone – but I’m not sure about that.

I must admit the timely calls he receives (the ones when he is looking for a chat to relieve boredom or get a pick me up) are fantastic.

On the way to Maslin’s today he got a call from a cousin who had him in stiches and quite often that quick touch base or funny email does wanders.

We’re also enjoying My Kitchen Rules – it’s more about the entertainment from contestants than the food I’m sure...

When Steve popped into the salon last time – he saw the big card with everyone’s comments,

He got very emotional but all good emotion.

It’s so nice he is getting to hear and see how much he is loved.

This is certainly a wonderful ingredient along the way to getting back to good health and wellness.

Thanks everyone again,

I’ll keep you posted

Round 3

We had an early start on Friday morning. We woke to the most beautiful sunrise and picturesque sea that reflected the silver pink sky. Steve felt really good and we were hoping his blood test results would reflect that. At 4pm we got the news that Steve's blood level's were 'grea't - meaning he is up to commencing his next round of chemo on Monday - on schedule.
It's amazing how happy and excited such news can make you...
For next week while he is in hospital he looks forward to texts and emails (connects him with the outside world!) so feel free to send them. If anyone did want to visit him, it's best to contact him or me before hand, because he's not always up to it.
Thanks for your messages
the green smoothie recipe Sandy, the 'cheep' joke Flacko, the funny and inspiring emails Gaynor, Maggie for your words free, Pat - love those Steve look a likes! Melissa, keep up the 'My Kutchen Rules' comments and Toni - Steve still laughs about your Harold and Freddie comment!
Hope to bring a good news update after next week,

Freedom

Hi all,

Happy to let you know that Steve has recovered well and after 5 days in hospital,  he's now out and very happy! It's amazing how you appreciate the simple things when they are taken away from you for a while. Being under artificial lights for that time - the thing he loved was the beautiful blue sky today, the gently breeze and the temperature!
Any way, he has a good few days now to really rebuild and hopefully he'll be ready for round 3 of chemo next week.
I'll keep you posted,

Ups and downs

Thanks everyone for your great emails, face book and blog comments. It’s amazing how uplifting they are to Steve’s spirit. Although he may not respond to them all – he hears, reads or views them.

After returning home after part B treatment in hospital, he started out quite well. He took delight in viewing the fantastic photos the salon staff had done to prepare for the Schwarzkopf competition. (You should see them soon as posters in the shop)

He’s so proud of each member of the staff – they are not only doing so well in the salon but their photographic shots are fantastic.

We headed for the beach as we usually do on the Wednesday after his pic line was redressed (the lines they use for his chemo) and blood tests were done.

We had a couple of beautiful days at the beach. His appetite was so good – it must have been the fresh air! He loves home cooked meals...

Although his appetite was good, unfortunately his cough (that he has had for a long while) resurfaced.

It ended up that the best way to deal with the cough and slight temperature was to get him back in hospital for antibiotics.

We’ve learned that the best thing to do during this process is to watch for any signs or symptoms that don't seem right and then act on them immediately. Not to wait – just get on to it, no matter what time of the day or night.

So at nearly midnight we landed back in hospital on Friday evening. They said it was good we did because he needed a bit of extra support.

While we know the treatment during the next 6 months is about getting him better - we also know it will cause his body to become very depleted - so we just have to make sure to take extra care during these times.

Steve’s attitude is fantastic – just focussing on what has to be done. Not that he doesn’t get annoyed when these ‘hiccups’ arrive - but he knows this is all part of it.

We are both learning how to go with what happens; the waves of ups and downs.

So... hopefully he will be out of hospital by Tuesday if his blood counts have improved.

I look forward to bringing a positive update soon,

Keep the messages coming – he receives them all and travels well on them for many moments in the day!

Back home after part B

Well I can’t say Steve was looking forward to going back to hospital,

After just feeling a glimpse of normality during the second week after part A – it was time to tackle part B of his vigorous chemo routine.

The day before it was to start, he had a second try with the support therapy - Mabthera (a highly recommended treatment that he unfortunately reacted to last time)   

This time however it was a success – a great start to the week,

The doctor said the part B should all go quite smooth with no major problems anticipated.

All started well – in fact like the first round, he was talkative and enjoying company (to help pass the time)

Steve was looking forward to Alfredo and Harold visiting on the Wednesday afternoon

But come Wednesday at about 3.30pm, just when we thought it was safe – Steve unfortunately had a bout of the sicks

We discovered that unfortunately the morning nurse had forgotten to give him his anti – nausea medication so he was not feeling the best...

Alfredo and Harold - expecting a nice afternoon out – got more than they bargained for!

However it didn’t take long to sort out the situation and by that evening he was feeling much better – so it was great that Alfredo could enjoy a visit after all...

The rest of the week went well and we’re now home.

He’s got the right anti nausea tabs for home use - so that part is sorted this time...

It’s mainly now the fatigue that starts out quite crippling then slowly improves as each day passes.

Steve is approaching this tough process with amazing spirit.

Many of your messages have indicated his good nature, determination, positive attitude and fun and loving approach

And you probably won’t be surprised to know that all of these have existed throughout each day.

He’s got a job to do and he’s going to do it well (are these words to a song??)

Just on songs, he’s been listening to plenty and he’s also taken up ‘words with friends’.

When SLB1956 is back on line we know his fatigue is on the improve!

Thank you all once again – keep the messages coming – he loves to hear them

PS I think the comments section works now!

31st January 2012

As you may already know, Steve has completed his first round of chemo (part A) and apart from an allergy to maxilon (the anti nausea tablet that was meant to make him feel better!) where he became very sick and disorientated, he has pulled up quite well.
The first week he experienced the fatigue he had heard much about. Basically stayed in bed with small spurts up and about.
This week, a great improvement - nearly back to normal - up and about and getting excited about the great work the staff did with the photo shoot on the weekend.
He's started giving me cheek - a good sign he's back!
Yesterday he went for an early morning 500m walk to the beach - when the air was cool and the birds were very vocal - he really enjoyed having the energy to move again.
This week its about rebuilding his strength so he is stronger for next week when he goes back to hospital for Part B of his chemo.
He says hi to everyone and has been really overwhelmed by the emails, cards and well wishes.
Each messages make him smile - he is very grateful for them - feel free to keep them coming.
We will spend the next couple of days away so he really switches off - I've noticed he finds that hard to do!
But he'll get better at it,