Felicitations!

It's my blog's birthday! I've been sharing my words, my inner most thoughts, my fears , my musings for a whole year. So if you've got this far thank you very much. I've appreciated every comment and words of encouragement along the way , of which there have been many.  I muse with going bigger, starting a facebook blog but not sure if I can handle the criticism / keyboard warriors I may encounter along the way. 

I will include last year's opening post at the end of this one but oddly there's a number of similarities but also huge differences in what I wrote then. I wrote of new normals, of taking a day at a time and then watching as they merged into weeks . I wrote of fear of cancer returning....well,that one came true! 

Currently I'm trying to, I suppose, ascertain a new set of normals. Not really sure what normal is anymore but would like there to be a sense of normality in my life , a sense of control in what I do. 

I don't think normal is having cups of peppermint tea & chatting in coffee shops everyday ( however nice that is to catch up with friends) , I don't think normal is just working mornings, I don't think normal is sending emails about my late husband to bloody pension companies yet these are all things that have became standard in the past few weeks. I don't think it's  normal being 4 not 5. I don't think it's normal having to budget on a very tight budget ...because no one seems to think it's a matter of urgency or even just plain mannerly to respond to my emails! So I continue to search for my new normal.

Yesterday I stepped in to Peter Mac for the first time since 13th February . When I was there then I had a husband , who was very poorly, we had a had a bad weekend. We had not been listened to by a new doctor on the Friday, he caused me much distress. We went back to see him that Monday and I told him exactly what I thought, what I wanted and he concurred that would happen. Two days later Scott was so ill he needed admitted to Palliative Care , something that Peter Mac doesn't offer. So I don't have the association of Scott dying there, like I do every time I go past / near ONJ. I really 

wasn't sure how my reaction to going back in to Peter Mac would be. I had things to return; 

nutritional cartons, dressing packs, home care notes. " just call in when you're passing! " . They've been on my very long mental to do list. ( it includes things like sell a motorbike, email bloody 

pension companies again!). My friend kindly drove me there, kindly kept on chatting whilst I sat sobbing as we approached the part of the city our hospitals were in. Scott and I had been backwards and forwards at these hospitals for over 5 years. It's a very familiar part of town for us. So when I walked in yesterday I was totally overwhelmed . Overwhelmed by the reason I was there. Returning 

things because my husband died. Overwhelmed with not being there with him. Overwhelmed by everyone else being there for a purpose . There is such a sense of quiet camaraderie when you are in waiting rooms , you're all there for the same reason, whether as the patient or the companion. 

There is no amount of preparation, of anticipation that helps you become a better widow. It's not my natural role...I was much better at being a wife. When you think you can't possibly cry more tears but yes you actually can. I would never have thought it was as difficult to get a response out of blooming pension companies ( I'm dealing with 6 different companies...all equally inconsiderate when it comes to dealing with a grief stricken yet still strong minded woman) . I am concerned over those women who may not be so strong / financially astute. What becomes of them? 

Onwards, just onwards for now. Days still being taken one at a time but quickly merge into weeks (11 of them) . Please love your loved ones. Live life because you can and laugh...or at least smile. There is much kindness in our lives for which we are grateful. 

Last year's blog :

Ah, yes! My blog! Not many mutterings have been made on it. A constant on my mental 'to do' list but to be fair it's a very long list. Anyway, let's start again, let's write a blog, let's mutter away to a hearts content.An opportunity to chatter away to myself and whoever may eventually read this.

Looking Forward : 
How do you allow yourself to look forward again, to anticipate a future , to think freely and without worry ? How do you learn to do that again once a cancer diagnosis takes that joy of planning ahead away , not once but twice. How indeed.

I've always been a plan a -header , always a count down-er,  a relish-er of the the challenge of a plan, the delicious anticipation of a list to be written and then joyfully ticked off or maybe even scored out.
Life suddenly changes when cancer enters your household , it takes priority, it supersedes even the most set in stone plans. It has to be dealt with .

You deal with it. You take one slow day at a time, slowly. You get through each day , realise that one week has passed , then another , then a month or so and then here we are one whole year post diganosis of cancer part 2. I am learning to dare to look ahead , to plan some events in the future ( though not too far ahead...that would be flighty!)

However, that sense of taking every day as it comes, alonst came crashing down again last weekend. We had a scare, we thought another lesion had grown , that stomach clenching grip of fear returned , that utter terror that cancer was back, that acknowledgement that behind the smile, behind the happy persona lies a constant fear . It resides inside me , usually kept bubbling under the surface but on occasion like at the weekend when 'hello' out it pops. As it happens ( thankfully, so thankfully) it was not another lesion , it has been checked at hospital and reassurances given . I'm left with a sense of ' well, it's okay ...for now' and 'let's not get too carried away with this planning ahead business.'

However, life is for living and loving and laughing. It's for looking forward , whether that's to tomorrow or to next month or to next year. It's for making the most of each day. Here's to making each day count. 

A day for mothers

It's Mothering Sunday in Australia tomorrow. This mother will be having her first Mother's Day as a single parent ...one child is away , one child will be working ( after I have delivered them to work...blooming trains are off again this weekend) and the other child will no doubt have a long lie. This mother will be no doubt awake early, feed the dog, walk the dog...bask in the dog's love for her ...its reciprocal, he's my favourite child. ( the other children know and accept this ...he is also their favourite sibling!)

This mother is discovering daily that it's not easy being a lone parent. We've had some fairly hefty family stuff in the last couple of weeks and I really could have done with a husband to talk to , to share with , to be reassured that it will all be okay. That's not an option now...I still tell him , he just doesn't reply.

This mother used to go to bed knowing that there was a father to wait up / collect wayward children and could sleep easier ( although always having an ear open even whilst sleeping to know they were back safely.)This has been difficult for me to get used to. This is when I feel the weight of single parenthood the most...well that and a much reduced income! Please switch the lights off and unplug the telly at night as I've just had a huge electricity bill, which prior to Scott's death would just have been paid without a thought. April the 25th was the first time in over 25 years that we did not have a full time wage coming in. I now think of money values in terms of weeks groceries...my youngest daughter spent a week's grocery money on a pair of strappy shoes on Wednesday! ( her wages which she's worked hard for so up to her how she spends them)

So this mother has a new found respect ( which I always did have ) for those mums and dads who have to parent on their own. Who have to take the role of both mother and father , who have to say no, I can't afford it when maybe once they said what the heck. Who for all sorts of reasons, choice, circumstance, find themselves doing it on their own.

Have a lovely day tomorrow . Be spoiled. Be loved. Be proud of your achievement as a parent.

#mothersdayinmay

Nine

Back in September 2016 , I received an invitation to attend an afternoon tea at our Palliative Care Team 's office. I recoiled at the invitation as I did not identify myself as a Carer...even the government  didn't recognise me as one until 5 weeks before Scott died and that was on appeal and a lot of vociferous complaining by our hospital social worker.

At that afternoon tea...only attended as a last minute decision and really swayed by the picture of the scones with jam and cream on the invite ( yes, I really am that shallow) I suddenly found myself in the company of only one other 'wife' ( who is so lovely and we have kept in touch) the rest were all recently bereaved and were all widowed. I was wearing a red gilet and red shoes and carrying as always my red Cath Kidston bag and wondering if I was wearing too much red? Seems this was not so as the lady I sat next to was dressed , most fabulously , from top to toe in red . This lady said the words to me which have burned in my mind since, " I've been a widow for 9 weeks" . I was so utterly horrified at her words. With the realisation that I would one day be saying those same words. Those words filled me with fear , with horror, with a sense of unknowing what was ahead. I started to sob , I spent a lot of that afternoon sobbing. I really felt justified when I later found out we should not all have been in that mix together. It was an administrative error. It was wrong. However , good did come out of it, a bereavement group was set up from this event and whilst I haven't  been , I did receive an invitation....along with my condolence card from them.

Today, I can say , with tears, with horror that I too, have been a widow for 9 weeks. I have not had a husband by my side for 9 whole weeks, for 63 whole days , for 2 months and 2 days. Neither Scott nor I liked the word widow. He would get very upset at the thought of me being one but hey...I get very upset at actually being one. Neither of us liked me being known as his carer. I was simply just his wife, someone who loved him so much that I would have done anything for him at anytime of day or night. Going from being that person who was constantly alert to pain , to distress, to difficulty breathing, eating, talking. To being the person administering medications , to monitoring their effects , their side effects. To being the keeper of the diary inside my head, knowing what, where , when 

...and how we were going to get there. To being the writer of the journal. To being the person who would sit quietly , just happy to 'be with' . To being so focused on 'caring ' for Scott , as in caring and loving him .

Being a widow of 9 weeks means you no longer have to physically do any of these things. The challenge of having been so focused on one person for so long and then not having that person there is so difficult. The adjustment to a life of  not having a husband with you is so hard. The ache of physically just missing their presence at your side, never being held again by them. Told and the telling of I love you's , which were said so very, very often. The busyness and the focus of a day consumed with making sure needs were met has just suddenly gone and as a widow of 9 weeks standing I am finding the lack of focus difficult to adjust to. There is just a vastness where  that focus used to be , an empty space....within me and around me. 

We still hoot with laughter, we constantly look through photos ( because that's all we have now, no more chances to do our 'selfie of the day ' , we started this in January when Scott's health was 

declining.) , we still eat and I still cook for 5 ....I'm not really sure of portion size for 4 yet! We still smile and remember dad moments, we had so many. We still go about our everyday motions of work / university/ school and there is a constant sense of movement within our house as we are in and out doing these things. Walking dog , feeding dog, loving dog. He is less forlorn than he was but  currently feeling sorry for himself with an ear infection and only putting up with ear drops for the treat he gets afterwards. Yet , above and beyond all these things we do , because we have to do them , we just all ache with missing . With missing my husband, my best friend , my children's father, my dog's daddy. We just miss him, the person he was, the laughter he created, the love he showed. It's a whole Scott sized space in our lives now. An awareness of this is where he should be but he isn't. 

There is still horror in the mailbox ( there actually is...snails who eat letters and a cockroach on a letter the other week!) yesterday's mail left me so distressed and upset. Then , this morning I check and see if my email regarding this has been responded too and it hasn't and this causes distress to me....absolutely not to them. Some person, in the UK ...just doing their job , not feeling any sense of urgency or even downright manners in a need to reply. In the same mail, letters from our old hospital 

asking Scott for a donation, asking me twice and then even asking the previous owner, who hasn't lived here for 6 years , for a donation. If I hadn't been so distressed from opening the first  letter these ones might have been bearable. Again , I can appreciate that they  are just computer generated but still difficult to get mail like this. 

So, we continue on this new path of life, with its unknown twists and turns , bumps and hollows, corners and hills . A path not of our choosing. But a path we must make the most of ....because we can. 

 

Day 50

It's fifty days since Scott died. Fifty whole days . How can that even be such a big number already?

How can it have been a whole seven weeks and then onto the start of the next week without him here? 

There's still a newness to it all, a freshness, a gasp of horror when you check the mail box and realise mail is addressed to him ...as a fabulous customer the car showroom have given him a free photo shoot experience worth $750, then the next envelope contains a condolence card from the local health authority with thanks for donations made after his funeral. Then the final letter contains yet more bloody forms to be filled out by his superannuation company. Last week's mail contained a survey from the ambulance company about his recent trip to the palliative care ward. I realise they are most likely computer generated but still difficult to open and read and then react . 

As a sense of otherwise normality encompasses our home, kids in, kids out, dog fed, dog walked, dinners cooked ( though still cooking for 5 ) , washings on, washings out, washings back in again , grass grows, grass cut, grass grows again.  There's an odd sense of disbelief . A sense that Scott could just walk back in ( and before anyone rings the psychiatrist, I know he won't) and that all would be well...and  there would certainly be enough food there to feed him! 

I've started back at work , this is my third week. I just work in the mornings. I only have to be nice to the general public for a few hours each day. I had my first experience of annoyed customers on Tuesday and was slightly distressed by it all. On reflection , I realised that luckily I'm just normally surrounded by kindness and this ( apart from horrid bank harridan) was unusual. I've spent the past 5 months in the company of a caring profession who one would hope tend not to shout at their customers down the phone! 

Easter was our first one without him. I found it hard. I find everyday a bit hard though. However friends seemed to unwittingly rally round me and I was either visited, went visiting or was taken out
for lunch. These groups of friends are not in contact with each other so it felt all encompassing to be wrapped in friendship for the whole weekend. 

It's fifty days since I've spoken and had a response. I'm still speaking....just not getting replied to! 

It's fifty days since I've hugged and held my husband in my arms , If you  still can then please hold them and tell them you love them , because you can.

It's fifty days since my life changed,since my children's lives changed.

Fifty. 

April Showers

Today is Wednesday 5th April 2017. In 2012 it was Maundy Thursday. 

Today, I was at work. Then, I was at work. 

Today, I'm remembering. Then, I had just been told by Scott that he did indeed have cancer and our world turned upside down, in an instant. I drove home, almost blinded by tears. I still remember that journey and having to turn round 14 roundabouts, pulling into the driveway, stepping up to the back porch and seeing the kids in the family room watching the TV, in their pyjamas, first week of the school holidays. Coming in and having to gather them and tell them , for the first time, Dad's got cancer. Fiona asked ' Will he die?' , I replied I didn't know. Because at that point we just didn't. 

We took a train into the city , we sat and watched comedy at Fed Square ( it was Melbourne Comedy Festival time) and it was hot and sunny. And I journalled afterwards that they smiled and laughed and that I was glad they did.

We had been referred to the private rooms of the head of Maxillary Facial team at the Royal Melbourne ( later referred to as Rude Doctor! ) ...and to be fair he's an excellent surgeon just lacking inter-personal skills. I was writing everything down at that appointment and he had the audacity to tell me to stop writing! Writing everything down has been a very useful tool for me in the past 5 years. You are bombarded with so much information that I don't think can always be retained as you are in such shock. I kept writing! 

We drove home, with a bloody large spider on the outside of my car window, which much have came from the tree we were parked under....me in terror just about sitting on Scott's knee...knowing it's outside and I'm inside was no comfort! We knew we had to tell his parents and he couldn't , so I did. I had to email people and let them know....and so began the group email that was used to keep people up to date, here and at home in UK. The emotionally draining effort of keeping people informed made slightly easier by just having to write it once. 

We didn't sleep well that night. I still don't sleep well. I think that was the start. We got up early on Good Friday morning and drove to the beach . We don't live near a beach...I wish! We sat on the boardwalk and watched the tide go in and go out as it always does. We both cried. We drove back into the city and were stopped by a giant Easter Bunny collecting money for the Sick Kids hospital as is done every Good Friday. Our new to us consultant Dr Rude, called to ask how Scott was as this large white bunny was at the car window! 

On the Saturday , I journaled that  we went grocery shopping ...as we still needed food and laundry needed washed. I prayed that I would 'one day being able to look back and say we beat this. Amen.'

On Easter Sunday , we went to Brighton Beach and we rolled our hard boiled eggs down the hill . We ate soup from flasks and eggy sandwiches and fruit. Our children played in the sea and sand. Fiona collected pretty shells. Scott ate chocolate eggs. I have a photo on my desk of the two of us that day, hugging, smiling but with the probable  sadness in our eyes hidden by sunglasses. It's one of the last 

photos of his full smile before surgery. Thick hair before having to have it buzz cut for surgery.

We came home and he slept for hours. I wrote ' Please God, give him strength to get through this with You by his side and me ...the support act' 

And so began our foray into a world , so foreign before which very quickly became our norm. 

Five weeks ago Scott passed away so peacefully and so gently. He was at peace with going. He had written so beautifully and eloquently to us, his family. He wrote "Let me say that the love I feel for you all right now is massive when compared to the realisation that my life will soon be at an end. That basically means my life is of little importance when compared to everything else; but my love for you cannot be overcome. My love will alway be there, unending, insurmountable" 

Five weeks have come and gone , we get through each day in our own unique way. Some days are easier than others, some days are utterly awful. Each and every day reinforces what we have lost. An amazing man, a most gorgeous husband and best friend and just the best dad to our children. People 

continue to say odd words..."it must have been a blessing to see him go"... Well actually no that's not 

how I perceive it. I walked out of the bank last week in such distress at the way I was spoken to by a gorgon of a bank employee, screeching at me  " that you do need probate!". It seems that I am with the only bank in Australia that requires probate to have access funds made out to a deceased persons estate. I won't be with that bank for much longer and was appalled at how I was spoken to. My solicitor , is also horrified and is resolving the problem for me in a much calmer manner.

Turning into a new month that Scott has never been part of has been hard. Time just ticks on regardless. Turning into a month that meant a lot to us both , to a date that for the last 5 years we have recognised and acknowledged as a massive part of our lives. Whilst I would never have chosen our cancer  journey  I am still grateful for what it taught me, what it showed me, who we have met along the way and for the almost 5 years extra we did have after that first diagnosis.

#highfive

March-ing on

How can it be the last day of March already? How can more than 4 weeks have gone since Scott passed away? How can a month so normally filled with birthday joy ; at both the start of the month and at the end have become a month filled with such different anniversaries?

A month that started off so hot and up until last few days continued in that vane, with desperate longing for cooler weather and jumpers and socks ...careful what you wish for Mhags ....fingers are cold typing this first thing this morning, enveloped in a jumper and a blanket!

A month of sadness but also insurmountable amounts of kindness and love and hope. Of messages, emails and cards with the kindest of words written in them. Of flowers and more flowers and I will never buy a lily ever again.

A month of meeting new people, of being in unfamiliar places but through kindness these places became familiar.

A month of trying to find the way to say what's happened. I was told, whilst still in hospital, I would develop a stock phrase , a way of letting people know that Scott had died...a month on and I'm still working on that one. It doesn't sound right when I say it. People get flustered . I kindly tell them it's okay whilst thinking it's not really.  Sometimes I say it first , so it's said . Yesterday I was asked 'how's your husband darl?' In the post office. I just wanted stamps. I just wanted to post a letter. I'd already had this conversation last week with her colleague , who had told me she was going to cry. I'd assumed she would now know. She didn't. I then had to tell her. It threw me.

Scott's Death Certificate arrived in the post this week ( it's a very different system here) I wasn't expecting it so soon. Had thought it would be mid April.  However, it comes in an envelope in an envelope with a request to read the back first. This advises you that the Death Certificate is enclosed
and that you may want to have a family member, a friend or your doctor with you.  Even though I
know Scott has gone...I was there! Even though we've had 2 funerals to celebrate his life . Even though we have had his ashes returned home to us . It was still difficult to read that certificate . The piece of paper that proves a point.

The mountainous pile of paperwork on my desk could now be tackled. It was all waiting on that one piece of paper. The stamps bought 2 weeks ago from the lady who wanted to cry. Envelopes addressed and stamped and air mail stickered. My poor solicitor ( is there such a thing?) yesterday had to certify 36 pieces of documentation that prove who I am, our children are, that we were married  and that Scott has died....and a random one that I can drive! He very kindly did this with no charge.

The kindness of people who have cooked us food. My freezer has never been so full of plastic tubs. Filled with tasty , home cooked meals , made with love and kindness and thoughtfulness.

My mantlepiece has been filled with cards filled with kind words and love . We have appreciated
each one.

We have donated our toys and games to our Palliative Care  ward. Walking back through those doors last week was so very, very hard. Holding those nurses in my arms and whispering thank you so much for looking after Scott was so very, very hard. Returning to a place that had been so familiar and as 'home' for our last 2 weeks together was so difficult. Returning there whilst knowing why you had left. Yet, going back was the right thing for us to do regardless of how difficult . I know how proud Scott would be of his family doing this.

We have donated money to our exact choice of location . To help in research for Head and Neck cancer. I am so pleased that we have been allowed to specify where it went. I've had lovely emails from our oncologist. He does this day in day out. He faces real people, real families . He tells them honestly yet kindly that they don't have long. He told us months ago , October, when I said we were trying to make the most of the time we had left, " you're not trying....you are doing it."

I read my journals. I read back to where we were told we didn't have terribly long left ( January 11th)
and I've written 'we must make the most of the time we have left' I read this now and just sob. There is a finality to death that you don't actually realise until it's happened. You don't get another chance. You don't get to say the things you should have said. Should have found out. It's too late .

We did live, we did love and we certainly laughed. We still live, we still love and we still certainly laugh but we now also miss... a husband , a father. The most amazing man.

Copability

'How are you coping?' asked someone last week.

Well apart from not answering that rather silly question I thought I would address the situation of coping. Almost 5 years ago on the 5th April 2012 our family was given the most devastating news that Scott had been diagnosed with cancer and that evening we found out it wasn't just any old cancer, it was staged as T4, as bad as it gets with a few malignant lymph nodes thrown in too. We had now entered our new world of hospitals. Of scans. Of appointments. Of fear. Of surgery. Of recovery. Of honesty. Of readjusting constantly to a new sense of normality with each stage . Of trying constantly to offset other people's reactions as we could ( and still can) only cope with our own. Three years later we celebrated our three years with a fabulous day at the beach with our dog , who was still a big pup, we laughed as he ran into the sea chasing seagulls and then realised he had to swim! We hugged tightly as we watched the sun set on the red sandstone cliffs making them glow.  We were emotional as we spoke of our love for each other, for our children. One week later Scott woke me up to tell me he'd found a new lesion in his mouth. We both looked into each other's eyes and just knew what this meant. Neither of us slept, we lay holding hands and hugged all night. We saw our team at Royal Melbourne the next day. It was a hot, busy clinic, there were no seats and we waited an hour to be seen. Diagnosis confirmed quickly that yes it was cancer again , different place but still T4, the worst staging and with lymph node involvement.

We were quickly thrown back into the familiarity of hospital. We had to attend early morning MDT meetings ( Multi Disciplinary Team) when over 40 specialists and  their teams  crowded around us , poked and prodded , took photographs, hummed and hawed. At this meeting one of the most senior doctors ( and I still give him an angry stare if I see him) told us bluntly that if surgery wasn't feasible we were looking at 6 months left. We were both utterly shattered. I was visibly upset and he told me to pull myself together and that my husband needed me to be a rock. If I had had a rock....anyway, I drew myself out of my distress and told him in no uncertain terms that I was more than entitled to be
upset and that I have and always will be at my husband's side. He conceded this and left the room.
Leaving 2 distraught people whilst the MDT went and discussed our case. After the longest ever half
hour wait a junior doctor bounced in and said surgery is booked in for 2 weeks later. We should never have been told what he told us prior to the team meeting.

By this time we have told our children once again that dad has cancer, that dad needs surgery again , that dad will have a tracheostomy tube to allow him to breathe, that dad will have to relearn to walk as they've taken part of his hip to make a new jaw. That dad will have to relearn how to swallow,  to talk, to eventually eat and drink and that every latte and easy to eat vanilla slice posted on Facebook was posted as an achievement, not just a ' oh we are out gallivanting in a coffee shop again.' That dad, once again, would need his hair shaved pre op and that he was adamant that it was never getting cutting again until it was the same length as Ruaraidh's. ( not knowing that 15 months later it would come out in handfuls following chemotherapy). Just that dad and all of us were going through all of this all over again.

Following any initial cancer diagnosis comes an underlying element if fear. I don't think that
ever goes. Every lump, bump, pain is treated with suspicion then relief when it's just a big pluke, for one
whole year I was grateful for every single day I got to spend with my husband, my best friend and my love. It felt like every day was an extra day. A day to be grateful for. Life really is for living.
A year later we had had a routine MRI , a procedure we had had to push for, for oncological monitoring. We had not been given results. I had to chase them up. A new to us doctor called me to arrange an appoinment and I knew then that something was wrong. She tried to reassure me it was routine but I just knew. We celebrated our son's 21st birthday with a weekend away in the country, watching kangaroos bounce past our porch, out and about in the Victorian countryside we both loved and with our son off mountain biking through frozen trails.

We were told abruptly by a junior doctor who did not know , he was reading the results of the screen , we were given reassurances that it might be 'nothing '  but I think when a radiologist reports that it looks like a large , invasive tumour that's what it's likely to be. And there it was . What we had feared
the most was actually happening. Cancer number three. We knew it was likely to be inoperable . We
had to come in the next morning to another MDT meeting. Rude doctor and I nodding
acknowledgment to each other. Waving hello to our familiar team as they walked past the room . ( there are other patients there too for similar reasons) each one looking incredulous or saddened that we were back.
We had to fit in scans and biopsies. Scott had a large white dressing covering his face after one biopsy. We were not telling the kids until we knew for definite and spent the journey home making up  wild and wilder reasons for dad having a blooming great white pad on his face...we came in , somehow speaking to Fiona and getting past her before she saw...Scott stood at the kitchen door mouthing WTF to me and then went and pulled dressing off then we dropped Isla off at her
Debutante Ball rehearsal , went for pizza and nobody was any the wiser!

He danced with his youngest daughter at her ball, me with a breaking heart that he
would never dance with her at her wedding. We set sail to Tasmania, stayed in our beautiful cottage
by the sea with its pink gate to the beach and waited on a phone call confirming what we knew in our
hearts.  That call came as we stood looking out at the calmest of seas then we told our children. We
stood hugging, sobbing then laughing as Haggis realised that nobody was looking and went round and scarfed all the bowls of crisps and snacks we had left unattended.

We had an amazing week on an amazing island and it was just the  perfect place for us to be. We headed home the following Wednesday via Royal Melbourne Hospital. We literally came straight off the ferry to there. Left kids and dog at car and were very kindly and gently told that it was now terminal cancer. The word incurable cancer was later  used and we both shuddered at this term. We were quickly introduced to our new way of life . We had to tell our children that this time it didn't get
better. There was no recovery period. No rehab program was going to make this better. Surgery was not an option, the tumour  was too invasive and too near brain and eye and did not have a good mortality rate and anyway...we can't remove all the cancer. We were told, when I asked , we had about a year. I thought that was a very optimistic year and that I reckoned we had about 9 months. I
was almost right, we had the most amazing 8 months together in which we loved and laughed and
lived every single day.


Knowing that you don't get a happy ending , saying it often enough actually does not prepare you. Being aware that this was happening allows you to plan somethings , like what song you would like at your funeral. It does not make it any bit easier. It does not make me lucky. Watching someone die and watching your children watch their dad die is so very, very hard.

Other people's emotions on their loss of Scott are not ones I can deal with. It is right that they are sad, feeling the need to share with us in great detail is really not necessary. Asking how I'm coping isn't really necessary just now. I'm still managing to brush my teeth, put matching clothes on and my children are still being fed and the dog is walked and of course fed. Haggis whilst very sad and subdued is still getting his priorities  in the right order....food, ice blocks and tennis balls.

The morning we picked him up from his sleepover at Dusty's ( our very kind neighbours have been looking after him) he ran straight to our bedroom looking for his daddy. I made him porridge on the morning of Scott's funeral. Up until 3 weeks before  he passed away Scott was still eating and drinking and shared his porridge with Haggis, always leaving him a bit. I would always send Haggis through to tell his daddy it was porridge time  ( in a loud voice so Scott heard !) and he would run through to our room , let his dad know and then positioned himself under the table. For the first week after coming home he lay under the table waiting on his dad coming through.

I've not decided if it's worse when someone doesn't know what to say or someone just speaks anyway!  The following have been said by real life human beings.
 "
Oh, so young!; Condolences  but it was inevitable ; Oh it's your birthday soon, how difficult ( well no, it's my birthday and I will  still celebrate  my birthday!) , ....Ooooh where was the cancer?, how ARE you coping ,  only the good die young;  Have you been left financially well provided for?  Will
you move back to Kilmarnock?"  Someone even wrote  to me that his funeral was bloody awful. Not
sure how that's meant to offer comfort. Other people have written blow by blow accounts of their grief, of their upset.

Most people offer beautiful words of kindness and love , some offer practical help, some just turn up and are here for us. Lots of you have offered your help by donating to our Go Fund me page , I will be closing this at the end of this week . We are all truly grateful for every dollar raised, all three thousand , two hundred and four of them. I've been in touch with the ward manager at ONJ and we will be going in this week. We've bought a selection  of games and toys for all ages and we hope that other families will know the same , amazing time together that we did. I have been  in touch with our lovely oncologist and told him that  over $3000 will be coming for his amazing research into Head and Neck cancer, again with our wish as a family that someone is spared the pain and heartache that we are going through .

So , to end by answering the question 'how are you coping?' I'm doing it my way. We are doing it our way as a family together. With Scott still a very real part of us. I will remain optimistic. I will still look for positive things in each day. I write them down daily. They are always there in amongst the sadness I truly do feel. I shall ignore the silly comments and concentrate on the kind and supportive ones. I shall at the every least brush my teeth each day. I am beyond grateful to have known the love of  Scott. To see him in his children.  To be a better person for having experienced what we have the past 5 years.

I will continue to write and will continue to laugh  and smile with fondness  and chase a dog who's eating my crocs ( shoes of comfort , not style! ) I will look to the stars  and watch sun rises and sunsets . I will just be me doing my best to keep on going with my husband in my heart instead of at my side.

Fourteen Days

Fourteen days, two weeks, one fortnight...that's how long I've been without my husband. It's truly awful.

When you are given a terminal diagnosis you are given pamphlets, booklets, leaflets that all in a round about way 'prepare you for death' ...with titles like ' emotions and cancer ' , ' preparing to lose a loved one' , 'dealing with dying' . They are quite upsetting to read. There is a stark reality that this will happen to you.

When you are given a terminal diagnosis , people around you ( near and far) don't really know what to say. Sometimes they say lovely , kind things other times they say rather insensitive things...I was told more than once that I was lucky to have this time , knowing my husband would die rather than dying suddenly. It is not lucky to watch your husband and to watch your children watch their father deteriorate, be ill through chemotherapy, be in such distress through radiotherapy.

It's not helpful to be asked ' ooooh have you heard of this treatment or that treatment? ' ' it really works...it is miraculous '  we would just sigh, look at each other and explain that Scott's cancer was now actually incurable ...there was no cure. It was a terminal diagnosis.

It is not helpful when people have said ' I never actually believed it would happen....I didn't think he would die' . Really? We always knew. Scott knew...he was mentally prepared. He was accepting. He was not scared. ( That's been another question ...'ooooh was he scared?' )

So for us who did know, who had accepted  it there were funeral services to be considered. Scott put a lot of thought into his music choices. I have been playing them for 8 months to make them more familiar , to be less confronting. On the day we were told he had days to live ( prior to becoming whirling dervishes of silver wedding party planners) he said ....I don't know if I want them  anymore...so he was told he'd better make up his mind and quickly!  His original choices stayed .

We had always intended there be 2 services, one here in Melbourne and one at home in Kilmarnock in our home church. Where we were married , where our children were baptised , where we worshipped. When we were home for our brief farewell trip I wept in church as I knew the next time would be for his funeral service. It was important for us that his family and friends also had an opportunity to mourn...in a celebratory way!

So although I read the booklets, the pamphlets, had thorough preparatory discussions with oncologists, social workers , nurses, Scott himself, it seems that it does not actually prepare you for the overwhelmingly sense of loss and emptiness that I feel. In the last two  weeks we have met two  very special women, one being our Funeral Director. She has given us as much time with Scott as we wanted. She said it was okay to stick his ' I'd rather be riding my Suzuki' sticker on his coffin. ( he bought this for me 6 months ago for this very purpose) , she has laughed with us and has shed tears at his funeral at the same time we did. Her kindness and generosity of time has meant that there was
familiarity with the space we would be saying farewell to Scott. We were allowed to play his
favourite music loudly on Monday night ...I'm sure wherever he is he'd have heard it...we were even allowed to see Isla's dance moves to certain songs...seems her and her dad would play their music loud on the way home from late night parties! They had their own moves!
She kindly phoned me on the morning of the funeral ,' how was I ? ' ...'okay.'..not really okay and ended up in tears saying that I did not know how to do today. Did I want to come back in again?...yes I did and back I went to see how everything was set up . To see the coffin, now closed , with his boots and hat and photo and beautiful flowers on top. And a collage of photos in a big frame , each one a beautiful memory. Our memory jar ...still to be filled with our guests memories of Scott.
And in all in her kind words and actions she allowed me and my children the opportunity to farewell my husband / their beloved dad in the way the that he wanted, that we wanted.

Our other remarkable woman was our celebrant who led Scott's service. She too is kind and funny and generous of time . She too made a difficult task a bit easier. She used her words to link everything but most importantly she used my words and Scott's words. Scott wrote the most beautiful letter to the children and myself the week before he died. It is stunning and will be read at both services. Our
celebrant, too, had an emotional moment reading it out.
She gave me a wink after reading out the poem 'The Winged Skye ' and managed to say the Gaelic phrase 'Eilean Mor Sgiathach'...well enough ...no one else there would have known  anyway! Thank you to a friend's daughter for providing the correct pronunciation!
She too made a difficult situation easier for us.

It was very odd coming home to a houseful of people already  there! Strange walking into your home and everyone was there already. A friend had kindly gone ahead to open up and take everything out of the fridge...all ready just to be plated up...even the cream was in the piping bag for meringues...it was just too blooming hot to put anything out before hand. Friends had travelled interstate  to be with us.They shared their time with us and I shared my cakes with them. It was good to spend that extra time with our friends who came back to our home.

For now , it is one day at a time. We are encouraged by continuing messages of support , stunned by donations to  our Go Fund Me account. I know that Scott would be so humbled by people's generosity and we know that all money raised will be put to good use and provide for others going through a similar situation as we did.


I am often asked if I will be returning to Scotland to live. The answer to that is no. For now Australia is home. Our children are educated and work here . Our life is here. Our new life without Scott by our sides is here. This is where he wanted us to be . Even with day after day of interminable heat I am
always hopeful that cooler days are ahead.

Thank you for continued love and kindess and if you manage  to go to Scott's service in Kilmarnock enjoy an empire biscuit or snowball...his favourites!  Please write a message in the book that will be passed around so we know who was there. Sing the hymns  with gusto because you can. Scott couldn't sing after his surgeries , he would still give it a try but it just didn't work..so do it for him!

Please make the most of everyday and do look for silver linings...they are there , just sometimes hidden from plain view. Life really is for living!

The bit in between

I had literally just pressed the share my blog button almost 2 weeks ago when Scott had the first episode of decline . I could not believe the timing, he wanted me to update the blog but I didn't.

It's now Wednesday the 8th March 2017 another relentlessly hot day in Melbourne. It's been almost a whole week without him in our lives , the loss is sorely felt but in amongst sadness we smile and we laugh, we share memories ...near and distant. His presence is still felt so greatly in all we do.

On the 20th January I asked our lovely, kind but honest oncologist how may Scott die. We knew at this time we didn't have very long left. His tumour continuing to grow with a rapidity that was frightening. We had three options. Death by sleeping peacefully . Death by haemorrhage from tumour . Death by pulmonary embolism, common in people with cancer. We absorbed this new knowledge, asked if we could fly to Tasmania and were told yes we could.  We went to Tasmania with a purpose and enjoyed a few days in a stunning, beautiful and peaceful setting. Managing only a few hours out and about each day and the rest spent resting. 

Returning to Melbourne we were aware that tumour had grown again and was now encroaching his line of  vision and this was when it was thought time to try the radiotherapy. For some reason Scott took a reaction and this accelerated his decline in health and necessitated our stay in the palliative care ward, our home for the next 2 weeks.  It only accelerated what would have happened anyway and we had to take the chance...it could quite easily have worked the other way. Scott also had a chronic,serious infection, a low immune system and a rapidly , growing tumour which was now reaching for his airway. So death by airway obstruction became our fourth option. We were told ( gently) he had days to live.

So live we did. I've already shared that we celebarated our anniversary, a birthday, made music, had dog cuddles , laughed, talked, sat quietly, cried together. He wrote a letter to us which will be read out at his funerals ( why have one when you can have two?) it is beautiful and he shares his love for all of us in his words. 

On Thursday 23rd February, right after I'd pressed the send button, Scott had a massive haemorrhage from his tumour. It was the most horrific moment of my life. Not the blood but the thought that this was 'it' , this is how he would die. I caught sight of the horror in my own eyes in the mirror. However for some reason it wasn't his time yet, two hours later we were playing Trivial Pursuit in the lounge. ( I know. I won!)  He said that night as we had our penultimate evening stroll around the ward "I stared death in the face today ...and I won" on the Friday he played guitar, he enjoyed his surprise visit from Haggis ( Haggis who refused to get on the train home ...and had to be picked up by our friend!) .

However, at 3am he started haemorrhaging again...not quite as horrifying this time with the experience of one already. Again, not quite his time to go but with yet another severe headache ( as a result of radiotherapy) he was made comfortable and allowed to sleep. A lesser man may have slipped away but not Scott. We had all said farewells, we thought this was almost time. On Sunday morning 

at 10am, Scott sat bolt upright and said "hello" looking round at us all....with us staring at him in 

amazement muttering "hi!". We had, what I can only describe as a blessed day, a bonus day with Scott up and showered and up to sit and chatting . As evening approached he started developing signs of Terminal Irritabity or Terminal Agitation. No one had told me about this, it gets a tiny mention in the ' preparing for death' pamphlets we are given. It was the most awful time for me and thankfully Scott would not have had much awareness of it. I won't go into details here but I was thankful when he was finally settled and comfortable. Up until a certain point he was still reacting to his beloved music, had an awareness that we were with him and  was able to tell us he loved us. 

Tuesday 28th February into 1st March we knew he didn't have long. Our beds had been pushed together since the Saturday night so we were all able to be close to him. He was not left alone. On Wednesday night he simply passed away, peacefully and quietly. Leaving us with the utmost sorrow but with the utmost joy that we had had him in our lives. Whilst we cry we also still laugh heartily as he would have expected us to do. Whilst we mourn him, we look forward to carrying him with us in our hearts for always. He lives on in our actions, in our children ...in their children in times ahead. He 

has touched many peoples lives whether in friendship, in work, in a kind deed, through my writing this blog. 

We as a family have been touched by kindnesses shown. We are single handedly keeping our local florist in business. Our friends have visited, called, sent messages and we are grateful to each one of them . Your kindness surrounds our family with love.

We will be starting a go fund me to raise money for both Peter Mac and ONJ. We want the money to be shared and used for research into Head and Neck Cancer at Peter Mac and to be 

used to purchase games and toys for the Palliative Care Ward at ONJ . Being there allowed us such precious family time and we hope that by buying some new games ( it was Trivial Pursuit or nothing!) other families may know the special time we had. These will done in Scott's memory.

Please donate if you can but also please don't feel any pressure! 

What I would ask is that you make the most of ever day and remember that life is for  living and laughing and most certainly for loving.

Live , Laugh, Love

Good morning, it's Thursday  23rd February 2017, the sun is shining , I have stunning views of the mountain ranges , The Dandenongs, The Yarra Ranges and the national parks in between. There is much green to seen. I watch the sun rise above them each morning and watch the sun set reflected on them each night. We watch the sparkle of night time  fall  each evening as the distant city lights up and the house and street lights come on.

We have a huge vista of  floor to ceiling glass windows on our 8th floor ward and can literally see for miles. Close by we have the train station and we can stand on our balcony and wave goodbye to our children as they go home. There is a lulling background noise of traffic. Close by we have the noises of a ward, the comings and goings, the buzzer that sounds when someone that shouldn't tries to get out of bed. We now mutter ' get back to bed! ' , the gentle knock on the door as a nurse or doctor comes in. There is such a gentleness about them all. The mutterings of the airflow bed as it fills and moves air around to allow Scott to sleep well and protect his pressure areas. The buzz of the aircon which keeps the room at blooming freezing...we now have a heater!

We have been here a week, we have a familiarity with staff, with other visitors, we have progressed from nodding to chatting. We have generosity, we have kindness, we have a peaceful place to be, we have amazing children ( they have amazing parents ...it's in their genes) , we have choirs of ladies of a certain age graciously singing Happy Birthday after their concert in the foyer. We have places to go when we want to leave our room. We have the gift of a very cosy and welcome blanket knitted by someone generous of their time.  We have experienced nurses mentoring new graduate nurses in their first weeks since qualifying, we share their joy , one did her first solo drug round last night. I remember those scary, early days ...one day a student, the next with ward keys in your pocket.

I am rather routine led , I like things to follow in a certain order. I call it being organised! I go for a shower, doing the walk of shame along distant corridors, with my pyjamas on and my bed hair ( has to be seen to be believed) all over the place. I was singing the other morning and unbeknownst to me
was heard...the oncology registrar asking on the ward round...was that you ? Yes! I come back ,
fresher, cleaner, fully clothed , hair washed and dried . I pack up my bed back into a chair. I use the ward  laundry every second day....to maintain a supply of fresh breeks! Usually the pain doctor ( our lovely , lovely doctor who we had sadly farewelled 3 weeks ago at Peter Mac is based here and we have been unusually allowed to have her be in charge of Scott's pain control. This is unusual as it would normally be oncology team only. We are so grateful for this as Scott's pain needs are quite complex due to the location and spread of tumour. She is such a lovely person, she has strived to make Scott as pain free as possible. She always has a chat with us and shares our sense of humour.
We then have a visit from our oncology team who come around each day. They chat with us both and I have chatted at length on my own. They never make you feel you are taking up too much time. They are lovely ( in that gentle yet honest oncology way) Scott's comfort is their priority. They too have a sense of humour and are more than happy to look at our party photographs and share in our delight. They are special people and I'm glad that people choose to make oncology their speciality.
They see people ; patients and carers at their absolute most vulnerable.


Then it's a mix and match of nurses in and out, other health professionals, the nipping in and out to check if my laundry is dry! Yesterday a nurse came into our room triumphantly holding a thing with black straps aloft saying "look what I found!" .... I looked on in horror as I thought I must have dropped my bra whilst walking from laundry! It was a bag to hold Scott's second syringe driver in!

The kids come in , often at various times as they have other things on , work, school,dog looking after. We all have our evening meal together, sitting at the table, laughing, sharing , loving. They saw their mother absolutely thrash them at Trivial Pursuit ....they were generous of my victory! Being quiet around a snoozing dad is nothing new, hugging a dad hello and goodbye is nothing new. Discussing funerals and choosing music has an urgency now rather than the lightly broached subject it was before. Knowing we don't have forever isn't new but again now has an urgency around it. I
would much rather my children never had to know this pain but we take each day as it comes and make the absolute most of it. Squeeze it dry of moments to be cherished.



The kids go home, there's a dog to be loved back home. He has been getting very well looked after and probably indulged by our kind neighbours, they send us videos of Haggis. We face timed him last night. He looks gorgeous. Scott and I promenade around the ward at least twice, we go out on the balcony and watch the night sparkle, we go to bed and hope for another day ahead.


So still we live to our fullest, we love so truly and we laugh with each other. And we all have clean breeks!

We are grateful to all who posted memories ( some shockers! ) you can keep them coming please.
I have read every single one out to Scott!

Hospice-tality

It's Friday the 17th February and we are once again in a hospital bed, in a ward full of lovely nurses and kind doctors. A room with a view of the distant hills , a balcony to sit at and have just been visited by a flock of corellas ( parroty birds) but as soon as they saw my phone coming out they flew off ...squawking and mocking.

A kitchen with a toasted sandwich maker and a fridge for my packed lunch, a room full of jigsaws and books ( I think I have a fear of jigsaws, I really don't like them) , a spa bathroom with candles and bubbles. Little nooks with comfy chairs to sit in. There are sparkly fairy lights in the corridor which are lit at night and on the big balcony of the lounge. There is much, much kindness and gentleness and then that double edged sword of honesty.

Scott's condition has deteriorated , his tumour has grown and grown , his radiotherapy made things much worse and exacerbated a probably already declining health. We gave it a go, we stopped half way through and things just got steadily worse as this week has continued. We were admitted to the Penthouse Suite of Olivia Newton John ( ONJ) Centre of Cancer and Wellness. It seems we are doing the cancer part of the deal. We are in the palliative care ward or for us UK types the hospice ward.

We have been told this morning, very beautifully and very gently that we really don't have very much time left . I would like to ask that if you have something kind, something funny , something stupid or even crazy , something loving can you please share it with us. Why wait until someone's no longer here before you wax lyrical about them.

I have been lucky to have Scott as my husband, we've been together for over 28 years , we have laughed and laughed, shared many a knowing look, we finish sentences , we go to say the same thing at the same time, we have made three fabulous children who share our sense of humour, we've known sadness , we've endured time apart, we have adventured to the other side of the world, he's put up with my ( occasional ) moods....I've put up with his musical tastes. I've loved him for just forever and have always said I love him forever and a day. I've seen him at his lowest and have watched him , twice, relearn how to speak, to eat and to drink after  major surgeries. He is my best friend , my true love, my confidante, my everything.

He is a much loved dad and adored dog daddy. He is a late night drinker of tea with Fiona. They watch River City together  ( sad but true) . In healthier times was a mountain biker with Ruaraidh and they both mooch around the garage doing man things. I do not go in the garage as spiders live in the garage. He is a dad taxi for his youngest daughter...Isla the socialite. Long past me going to bed , Scott would wait up until time to pick her up. We have laughed, we have cried but we have always loved as family. I shall say this only once as it pains me but I think he is Haggis' favourite human. Haggis loves us all but I think he loves Scott the most.

He is a wearer of RM Williams boots...a very expensive , investment buy . Bought for his birthday as an indulgement , with a newly given terminal diagnosis he bought the boots with a lifetime
guarantee! They are polished and conditioned and lavished with much care and attention.


He is a motor cyclist. I have said all along do not leave me with that bloody motorbike....he is leaving me with that bloody motorbike. We thought we had a bit more time than we do. He has enjoyed biking around Victorian countryside .

He is a guitarist....with a penchant for collecting guitars ( soon to be known as bloody guitars!) and has enjoyed making effects pedals for them in his workshop. I've enjoyed listening to him play guitar for so many years ( just not the loud noisy stuff!)

He makes a mean spag Bol....that is it! But it's a good one!

He is a mountain climber and has walked many a Scottish mountain in all weathers...usually with his friend Mark. It's to snow at the weekend ...great...lets go up a craggy ravine! It's lashing with rain...nah! No worries.



He is a proud Scottish man but equally proud to now being an Australian. Taking our citizenship last year was an achievement that he was very proud of.

He was an adored youngest son. He loved his mum and dad very much and really missed them when we moved here . He is and adored and probably indulged little brother. He is an uncle and a cousin and a nephew.

He is lots of things to lots of people and I would love to share your thoughts and memories now whilst he can still hear them.

#heartisbreaking
#onj
#xanadu
#lovelaughlive

World Cancer Day

It's Saturday 4th February ....apparently World Cancer Day. Who knew? For us everyday is Cancer Day, for us everyday is living with the emotional, financial, psychological & physical effects of cancer. It's a bugger! It's horrid! It's nasty! It's scary! It's devastating! It's bloody inconvenient! It's detestable! At the moment , our own particular cancer is being rather aggressive and growing very quickly, a bit too quickly for us. And , I think , even surprising our consultants too, with it's stealth.

Not content with it's contained space within Scott's face it's decided to grow up around his eye and is now in his line of vision ...a kind of ' here I am!' . We had a saved up for, trick up our sleeves of radiotherapy. Held in reserve. In case of emergency break here. For use later. A last hurrah!

On Tuesday ( whilst I was having my minor mini meltdown) we had 5 appointments at Peter Mac, one after the other after the other . There were tears, snots, smiles, laughs, hugs , more tears, much honesty, more tears but I think we ended on a smile. First appointment was with our nutritionist...did you have a nice holiday ?  I asked. How did you know I was on holiday ? she countered ...er ..you're all tanned ....and your colleague told us you were on holiday  last week! Not really stalking, just being polite! Scott is eating and drinking okay so not really a terrible important part of our day (though we do know that nutrition is very important in cancer care , just not our most pressing issue)

Then it was time to see Ben, our lovely oncologist, who always walks out to the waiting room to greet us, who is always gentle in his manner and kind in his ways but brutally honest in his words....but done in a nice, kind, gentle manner! He looked shocked at the visible increase in size of Scott's tumour.....and mentioned the ' in emergency , break glass' time might be now rather than later.
We also discussed our Advanced Care Directive...not for the faint hearted or emotionally unstable. I spoke with my high pitched crying voice ( the one which freezes when it has something important to say) ...he now patiently waits and Scott pushes the tissues nearer me. We have a familiar routine. I'm glad he never rolls his eyes and says in an out loud voice, bloody hell , here she goes again! He
answers my question gently and honestly.


Then it was time to go to see our Pain Specialist doctor. She has been amazing. She is also very kind and gentle and determined that Scott shall not be in pain and if he is that we can quickly solve it. She has repeatedly called us at home and whilst we were in Tasmania to check how Scott is. When Scott was in hospital recently , she resolved a mini pain crisis for him and then came back and sat with me for 30 minutes, chatting , comforting, laughing whilst Scott, now pain free, slept. She , personally, has made such a difference to our lives. She is an amazing doctor and wonderful , kind human being.
Sadly for us this was our last appoinement with her as she is moving on to be kind and compassionate with other patients. This was the huggy part of our day. I left with tears in my eyes and left her with tears in hers.

Then , it was time to go and meet with another lovely person , our Radiation Oncologist. We've known him almost 5 years now and he is such a gentle, kind and clever man . However, when your
oncologist puts his head in his hands when he sees your husband's face, that's never a good sign. We were there to discuss radiotherapy as a further down the line topic. His words were "I don't think I actually have anything positive I can say to you both." Sob! However, after a discussion, another look at scans, a consultation with another senior oncologist we are breaking the glass now and Scott will start , what is known as 'Quad Shot' radiotherapy this coming week. We are hopeful that it will shrink the growth of tumour around Scott's eye and stop it further encroaching on his vision. That is all it will do. It won't cure cancer, it won't make it all better...it will just , if we are lucky , reduce swelling.

Finally, it was time to traipse around to our Head and Neck Cancer team social worker for a catch up. I have counselling sessions with her. I cry, she says it's okay to cry, I cry again, we laugh. She offers wise words, ( sometimes  I take no heed of them but sometimes they make sense) , I cry some more, I speak in my high pitched voice, I bemoan the fact I'm an unattractive crier and then I feel better after having chatted. She has , wonderfully, liaised with Centrelink, a government agency , and spoken to people I wouldn't have been given access to and finally our application for a carers allowance has
been agreed and backdated  after it was declined as apparently Scott wasn't terminally ill enough.

We had to return back to Peter Mac on Wednesday afternoon, which at that point had been our only appointment free day. We are now attending appointments in the basement level where radiotherapy lives.
Scott had to have another CT scan and be fitted for his face mask. This mask is screwed into the table and Scott is fixed there as his treatment is carried out. He found this much more difficult than it was first time round ( Scott had 6 weeks of daily, aggressive radiotherapy in 2012) as he has had further surgery and reconstruction of his mouth since then and this tumour is pushing his mouth from the inside. He has a little breathing tube in his mouth. He is very brave...each patient has their own , individually made mask. Some people  keep them as a memento.

Yesterday , our Radiation  oncologist called me to tell me he's found , on the CT scans , a fairly large malignant area on the opposite side ...did we give permission for it to be zapped as well. Sigh! Yes, of course. So we were feeling rather deflated last night.

So , on World Cancer Day, I give my thanks to everybody involved in our care, from the volunteers who run the library, to the research scientists, to the Pet Therapists, to the oncologists, to the nurses, to the admin staff, to the cleaning staff and every single one of you in between..
You make a difference to us.

Check out your lumps and bumps.
If it's not right...it might actually be not right, so get it checked out.

Love like you've never loved before. Roar like a bull with laughter. Live like it's worth living for.

( and to my lovely friend who asked where skinny Mhaggie had gone...I ate her! )

#worldcancerday

.

Streeeeetched

It's Tuesday the 31st January, it's early o'clock and sun isn't quite up yet but we are.  The air outside is fresh after a very hot and humid day yesterday. We've had some blessed overnight rain that seems to have cleared the air again. Today is a new day full of its own challenges and confronting discussions. We have a very full on half day at Peter Mac where decisions and choices will be discussed , lots of talking and lots of listening to be done and as always I write it all down in my journal.

On Sunday morning ( Saturday evening UK time) Scott's much loved mum and my children's much adored gran quietly slipped away. She is missed ((as we physically miss all our family / friends being so far away) everyday but is now at peace after the last few years of living with ever declining dementia. I am grateful that we got to spend time with her each day when we visited in July. There was still a spark of recognition for 'her boy!' and delight in a strawberry tart. The last few months have been spent happily and content in a nursing home in Ayr , with pleasant garden views and caring staff. We are grateful to both of Scott's sisters for their constancy in her life.

Then along came Monday with a BAM! Scott's problem that he was admitted to hospital the other week returning , Fiona with the problem that she needed emergency surgery for last May had flared up . Ruaraidh at work, Isla at work. Me , with a headless chicken running around inside my head , trying to juggle everything emotionally and physically, running round to pay Isla's physio appointment that I now couldn't go to . Being verbally abused by some local idiot and his embarrassed looking dog...he would have ranted at anyone who was passing so I didn't take it personally...just felt like having a good old rant back at him! Packing hospital bags.

Peter Mac were called, apparently we had an appointment that afternoon ( I got the appointment  letter in post later) so we would go in for that and see what followed. We actually met one of our

medical team in the lift so had a quick consultation with her and she would follow us up after our appointment. So that was 3 hours spent at Peter Mac meanwhile my daughter had to go to our local
A&E department and send me text updates about what was happening....which initially wasn't much.

We got an uber ( usually a good experience) cab...driver literally did not know right from left. Now, I sometimes have to think which is which but I am not being paid to drive people around the city! I got dropped off ( after what seemed like an eternity of rush hour traffic and an eternity of driver humming) at our local hospital A&E department. I went in to reception , where it smelled of vomit, stood in line behind someone apprehended by police and was then given my sticky VISITOR pass and allowed through....just in time as , like last time, Fiona went ever so slightly unconscious. This is horrid to see and more horrid as she came round and the first word she said was an expletive! I didn't know whether to be delighted she was breathing again or wash her mouth out with the anti bacterial hand spray on the wall behind me.

We were then admitted to a ward for emergency surgery tomorrow. (Ironically , she is in the lovely Olivia Newton John cancer centre as a surgical boarder whilst Scott was in a sugical bed as an
oncology boarder the other week) she has a room with a beautiful view out to the Dandenong Hills ,
was starving as she had been fasted 'just in case' and sore. So she will be having surgery this morning and I will be at Peter Mac with Scott and not with her and feeling very torn between the two. I was reminded of the 1976 toy Stretch Armstrong , who could be pulled and pulled and apparently could be stretched much more than his actual size. I'm hoping I have the emotional and mental stretch for all of this,

School is back tomorrow, buttons need sewn on a dress...that's if I can thread the needle...I also need to try and fit an optometrist visit in sometime, forms need printed and signed....in the olden days ( like 2 years ago) you were physically given the forms now we have to doing them ourselves and return them. This is Isla's last year at school. Hurrah! No more school fees, no more school shoes (ever, ever, ever!) , no more knee high white socks ( after November...I'm getting ahead of myself with the excitement!) however there will be eisteddfod and swimming carnivals and athletics carnivals and school formal all to be organised as she is a house captain which brings with it not just golden braid on her blazer but a whole load of responsibility and organising....I'm hoping there is time for studying as well. Year 12 is as big as it gets out here. Lots of responsibilty, lots of high expectations....just lots of lots off really. We've had a set of dodgy hips thrown in for good measure
and waiting on referral appointments for those.

Sigh!
Sigh!

So life is pretty stressy at the moment, it will hopefully settle down once Fiona is home and I don't need to be in two places at once. Scott's appointments are a constant and we are grateful that he is well looked after. One of our lovely doctors even called us when we were in Tasmania to check he was okay.

So , maybe after today is over and done with I can get back to onwards...and just onwards. Enough drama for the week thankyou!

That Friday Feeling

It's Friday 20th January 2017. This is our 14th day in hospital this month! Our year isn't even 3 weeks old and we've spent 2 weeks of it in hospital. We are optimistic that we will be back home by mid afternoon today and hoping that we don't have to return until the 31st January, our next scheduled appointment.

We woke on Sunday morning to a mini medical emergency that needed dealt with quickly. Without repeating the ins and outs of a communication nightmare we then had to go to our local A&E ( Peter Mac does not have an emergency department thanks to the wisdom of the Victorian Government. Huge big all singing , all dancing showcase hospital and no place for people with  cancer to go out of hours if they have a medical problem.) Our local hospital does not have access to our Peter Mac notes and whilst I am very capable of giving a very detailed history and report not everyone will. This was as frustrating for us on Sunday as it was for the Acute Emergency Consultant we dealt with.

We were admitted to our local hospital's surgical ward as an oncology boarder as there were no beds available at their oncology unit or at Peter Mac. We have become accustomed to delicous meals three times a day interspersed with tasty snacks three times a day. This was not the case in local hospital and rather disappointing for Scott. However we quickly became institutionalised to the ward goings on and the nurses were very lovely and doing their absolute best. The best thing about local hospital? The train station is directly opposite and within 20 minutes I was door to door. Ward to home. Home to ward.

On Tuesday we got word that a bed was available at Peter Mac and we would be transferred over...we had packed our things in such a hurry of the anticipation of going and then were told it wouldn't be for another 3 hours! So then had to keep dipping in and out of bags! At 4pm we were picked up by Mr Grumpy and his much quieter pal! We were driven to Peter Mac in a Patient Transport Ambulance and I got to ride shotgun and had a much better view than Scott. A sense of homecoming and familiarity ( although a different ward than normal) . The freedom to wander around , use pantry , make cups of tea , peel oranges! Scott was then moved out of their assessment unit and given the biggest side room we have ever seen. It seemed like an upgrade to the Excelsior Suite...it turns out it was the bariatric room. There are two on that ward and are for very overweight patients. The toilet was HUGE and we were scared Scott might fall down it as he is super skinny now!

We have been well attended to by nurses, doctors, food is excellent and plentiful. The first thing Scott did was order his meals! If we are going to spend time in hospital this is the one we would rather be in! I've read 3 books in past 6 days , I take the early morning commuter train I ironically used to
catch for work  and then jump on a tram and join Scott at 7.45am. Our day is interspersed with doctors rounds, IVs going up, IVs coming down, eating 6 times a day, watching life go past 6 floors down ...( slightly bemoaning our third floor view of city when I see the sixth floor view and thinking of that firework display!) . We've had some very thorough discussions with our consultants , a few snots and tears along the way....Scott now just pushes the box of tissues towards me. My voice freezes...the words are there but don't come out and then come out in a strangulated high pitch tone! Sigh! My face crumples and I'm aware that I am such an unattractive crier. You would think after almost 5 years of being a professional crier I'd have it down to a fine art but no....every confronting moment is a new one and fresh tears fall.

Anyway...onwards and just onwards at the moment. There is still life to be lived, love to feel and lots of smiling to do.

About time

It's Thursday 12th January 2017. I am typing this as Anthony the Handyman repairs the damage to house and  garage caused by our freak storm 2 weeks ago. It's a hot summers day but most days are hot summer days  just of varying degrees of heat. It's still school holidays until the end of the month though kids are all still working so are in and out at various times. Scott and I have been backwards and forwards at continual medical appointments this week , today being our only appointment free day this week.

We spent 8 days in a side room on the third floor at Peter Mac hospital, overlooking the city ...the other side of the ward looks on to Royal Melbourne Hospital so we certainly had the better view this time. I spent 8 days wrapped in a cardigan with a blanket over my ankles ( channeling my inner granny) as the room was so cool with the aircon behind my seat. Meanwhile , outside, Melbourne  melted ever so slightly.  I would arrive on the ward just after 7.30am and was kindly picked up at 7pm by my friend...who would then listen to my tales of woe on the way home. I was asked on Friday why I spent all day here...I felt I had to justify myself and primarily I said because I actully quite like my husband and we quite like spending time with each other. Other reasons included being there on time for doctors coming round, usually just after 8am , being there to peel Scott's oranges and of course the free air conditioning unit blasting cold air on my ankles.

We both quickly became institutionalised to hospital routine, most of which revolves around food and mealtimes ( though I think that is generally how I live anyway!) Breakfast to start the day followed by morning tea and then it was lunch which was quickly followed by afternoon tea and then tea and then supper! However ....just to keep us on our toes, sometimes afternoon tea was later than normal which meant you were still groaningly full of food at teatime which would in turn mean supper could be a struggle! Meals are ordered through a bedside laptop . We had access to a pantry for tea making facilities and orange  peeling purposes. A tiny little space where I often met other patients partners and chit chat would follow. I was asked by one lady with an accent who had problems with my accent, "what's he in for?" ....er, that would be cancer. Then she started getting quieter and quieter in a Les Dawson fashion talking about her husband's liver cancer until I couldn't hear / nor understand her. So I took my orange segments, a cup of tea and left her to her cup of milo!

Scott snoozed, I read, Scott snoozed, I may have snoozed, Scott snoozed, I wrote emails, Scott snoozed....well Scott did a lot of snoozing and I did a lot of just sitting quietly. Yet each day, Scott got a bit brighter, a bit better , this was encouraging to see as he had been very unwell when he was admitted. Nurses popped in and out, doctors popped in and out, our children popped in and out , nutritionists and speech pathologist popped in and out. Food was constantly arriving. The ward cleaner popped in and out...I learned when to lift my feet off the floor at the right time and would have a wee chat with her each day.

Scott was discharged on Saturday morning ...Peter Mac threw us out on the hottest day of the week! Goodbye frozen ankles, farewell cardigans, no more oranges to peel as Woolworths ( supermarket) hadn't quite got my online delivery right...3kg oranges ordered , one wee sad and lonely orange  delivered, 5 bananas ordered...4 yellow and one almost speckled black one delivered....the worst of
all though was a Cadbury Double Decker ( an imported treat) which looked like the delivery driver had kept it in his back pocket for safety! Squashed beyond recognition! Anyway ...email sent, refund given and a free delivery code too!

We had an appointment with our lovely, kind, gentle yet brutally honest oncologist yesterday
afternoon. He had been on leave whilst Scott was ill. So after I brought him up to date with our last 2 weeks, he brought us up to date with last Friday's CT report. It did not make joyful reading. It was as we expected but still shocking to be told. The tumour has continued to grow sizeably. The chemotherapy, which was always a palliative measure never curative, had not worked and had just succeeded in making Scott very unwell. Along with our oncologicist's advice , our children's agreement we have made the decision to stop actively taking treatment. Any further treatment would just result in Scott suffering from horrific side effects for very little if any gain. Nobody thinks that's  an option.

So , we , as our little family of five, huddled in together last night .What was always inevitable is still inevitable. I feel reality is constantly tapping me on the shoulder, whispering in my ear. But we shall absolutely be living and loving and laughing together and making the absolute most of the time we have together.

#pants