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.