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.