Post Number 42 - Rest in Peace My Love

Today is a very sad day.  Because tonight, I said goodbye to the love of my life. Mark was more than a husband to me.  He was my work colleague, my best friend, my secret lover, my husband and the father of my amazing son.  He leaves this world a better place for his contribution.  Many of his colleagues looked up to him and often asked his advice.  Many people had the privilege of meeting him and although he never knew it, he often left a lasting impression.  He was a quiet man, yet was as opinionated as me, just not as vocal about it, only to me.

I don't know why he chose today to leave - perhaps he did not have a choice.  Perhaps he didn't want to be a burden.  This morning while in his room I made all the final preparations to bring him home.  Hospital bed, linen, removalist and storage to make room for all the equipment, nursing staff and support staff to help me to care for Mark at home.  I was all ready for him to be home by Friday afternoon.  Sebastian and I went out for dinner, almost to celebrate that all would be well and we wouldn't need to make constant trips back and forth to Daw House and the man we loved so much would be home where he belonged.  But it was not to be...

At 6pm while we sat at our favourite café awaiting our order, I received a phone call from Daw House.  I had only left there an hour ago, so thought this quite strange.  I was advised that Mark's condition had seriously changed and his pulse was racing and his breathing was laboured.  They had administered some medications to settle him down, but thought it was best I was informed.  While deeply concerned about the news, I didn't panic.  In fact, I felt quite calm.  I contacted my neighbours, or should I now call them my family, and asked yet again if they could rescue me and of course, they came in my time of need. 

Sebastian and I thoroughly enjoyed our dinner as well as our tiramisu (tiramisuka as Seb calls it) and just as we walked back to the car, my friend arrived to take Sebastian home, put him to bed and wait for me to get home, for as long as I needed. 

As I walked into Mark's room I could hear his laboured breathing.  I instantly held his face and kissed his forehead and checked him over.  I noticed his fingers were turning blue so I asked if he could be given oxygen.  But his breathing never improved.  I dimmed the lights and played some music, held his hand and rested my head on his shoulder.  I knew deep down this was it. 

Unable to relax, I grabbed his mobile phone and started going through the hundreds of emails in his Inbox.  Emails that had been received back when he first entered the hospital, nearly seven weeks ago. I lost count of how many mailing lists I unsubscribed him from and while I deleted hundreds of emails, I did leave the ones that I felt he would suggest are important.  It was like I knew he would pass, but then again, never giving up hope completely. 

At 10.15pm he stopped breathing and so did I.  I looked at him and then he took a big gasp of air.  I watched him and held him tight and he did it again.  I rang the nurse and we removed the oxygen as it was having little effect.  Less than ten minutes later, he took his last breath. 

So now he is at peace and I can officially start grieving, although I have been grieving for weeks now.  I have cried so much and watched the colour drain from his face, yet it still doesn't feel real.  Everything is so silent now, like the world just stopped spinning.  It's nearly 2am and I have little chance of getting to sleep.  Knowing I have to tell Sebastian in five hours that his father has passed, more unbearable than I can even express, even though we have talked about it several times and cried a river together.  I guess we will cry another one again and again for a while.

Mark was such an amazing man and not many really got to know him as well as I did.  Even from his hospital bed he made sure I had the gift of a piece of jewellery for my birthday.  He had mentioned it to me months before and I dismissed it as I didn't want an item to remember him by.  But I guess he knew deep down all along and with the help of our amazing friends (again) I was given a beautiful pendant, engraved with our three names.

Mark was a beautiful man and I was so very blessed to have him in my life, because I have now experienced true love and I am so grateful of such a special gift.  Many people go through life never really experiencing it.  I had been married before and had many failed relationships but our relationship was different. It was built on respect for ourselves and each other.  We did not have to agree on everything, but we always listened to each other.  Mark was a great listener and I will honour him by trying harder to be a better listener to others.  Because I myself now really understand the value in having someone who will just listen.  Not judge, not offer solutions, not give me advice, just listen.  It's a rare quality, and Mark, I will try to be better at that, for you.

I will honour your life with as much grace and integrity as I can, and know that you touched many people in positive ways and that together we were unstoppable.  So now Sebastian lives on to be the boy you taught him to be and I promise to guide him, listen to him and speak of you often.  He will learn everything about you, so he too can be as special a man as you and learn to love a woman in a way that will make you proud. 

I will love you forever and miss you every day, for the rest of my life.  Goodbye my darling, may your next life be even more special than this one, if that is at all possible.

Post Number 41 - Every day is a Marathon

Every day, every hour, every minute is filled with things to do.  My daily routine sometimes feels like a daily "grind".  Getting out of bed is my first major challenge as I know all too well, what my day entails. Often my sleep is not deep or is incomplete and it would be far easier to pull the covers over my head and pretend my life is not what it is.  But then Sebastian gets up and sometimes comes into my bed for a cuddle and Else cries and cries as she wants to be let out, so out of bed I crawl.

After the usual preparing breakfast, school lunch and packing bags, we head to school.  Before leaving the school grounds I ring my local café for my daily coffee order which they have ready and waiting for me on my way through to the hospice.

Once at the hospice, I gather Mark's breakfast of porridge and poached eggs and add all the ingredients to maximise the nutrition (probiotic plain yoghurt, fresh berries, supplement powders, 100% juice not made from concentrate and no added sugars, added fibre and highly nutritious seeds).  Mark is usually sleeping when I arrive and his head is often hard pressed on his shoulder and in an awkward looking position.  I then have the honour of inflicting pain on the man I love, to massage and loosen the muscles in his neck, enough to get his head up and straight, so that I can feed him his breakfast.  It's agonising for me and for him, but it has to be done.  I massage in magnesium oil and warm the muscles with heat packs.  Nurses tried using muscle relaxant drugs and pain medication, but nothing took the edge off the pain as much as the natural approach of heat and massage.

After breakfast it's time to give him his wash in bed, clean his face, shave and attend to any bed sores or dry skin.  We now lift him into a special supportive chair every day and most days he stays in the chair until the evening.  I wheel him out on to the veranda, make him a cup of herbal tea, massage his hands or do a little physio or play his favourite music and just hold his hand.  The hours pass quickly and before I can say "Herbal Tea?" it's already 11am!

I usually leave around 11.30am to allow him to have a little sleep in the chair before lunch arrives.  I then tend to other duties such as grocery shopping, study or general house keeping duties such as paying bills and completing the paperwork for our tax and GST reports.  Before I know it, it's 2.30pm and I rush to finish whatever I am doing to be able to get to the school to pick up Sebastian.  Together we go back to the hospital so I can give Mark his DCA and prepare Mark's dinner, including boosting his hospital soup with homemade bone broth and adding probiotics and other supplements into his dessert.  From there Sebastian and I head home, cook dinner and enjoy what is left of our evening.

Up until today, I would usually put Sebastian to bed and collapse on the lounge, becoming a true-blue couch potato and watching mindless TV.   Zoning out to everything.  But this doesn't work.  When I go to bed and all is quiet and no matter how tired I am, no matter if I read or not, I can't sleep. There is no point trying to drown out what is happening.  It IS happening. 

Today I spoke at length with the Hospice Chaplin.  I don't have much time for Chaplin's I'm afraid, but this guy is different.  He speaks my language and seems to really understand me-which is rare. He listens and seems to understand and agree with my way of thinking.  We talked for hours and he witnessed my frustrations with doctors and other staff.  For once I felt heard and understood, supported and unafraid to be me.  It was better than any counselling session I have ever been to (not that I have been to many because they generally don't understand me and want to tell me what to do).

Our Schnauzer "Else" doing her bit!

Last week was another test of my strength when one problem after another presented itself.  First Mark was put on a diet of pureed food (baby food basically) because he had failed to chew up and swallow a steak that was overcooked, tough and inedible.  As I was not there to speak on Mark's behalf, the decision was made. The mush he was then served up was not pleasant and I lost all control of the food choices for Mark.  The quantity of food was also greatly reduced, ironic when there was a concern of "weight loss" which was addressed by giving him less food!  After finally winning that exhausting battle over several days and getting his food menu reinstated, I came home one evening to a trashed house.  A thunderstorm sending my dog and the neighbours Golden Retriever into a quivering mess.  In their panic to get out of harm's way, the doggy door was broken, our new shelving in our entryway was buckled and painted doors where scratched to pieces.  I took a deep breath, calmed the dogs, put on music and left the house again to go to the hospital.  Two nights later, crashed-out on the couch and about to go to bed, I heard an enormous crash and smash of glass.  I was terrified, but I had to go toward the noise as it came from the area of the house where Sebastian was sleeping.  The shower screen in our bathroom had smashed and the glass was cracking and falling to the tiled floor.  There was glass everywhere.  I was shaking with fear, although I could not see any explanation glass explosion.  I rang my neighbours and within minutes they came to my aid.  Together we cleaned up the glass and removed the frame that had been holding the glass, so that Sebastian could safely walk to the toilet in the morning and I could still have a shower.

During the clean-up process I closed the Sebastian's bedroom door, so as to dull the noise of the vacuum cleaner.  In the process I jammed my thumb in the door frame.  I felt so defeated, yet I also felt a surge of anger.  What did I DO to deserve this?  What more can the Universe throw at me to try and break me?  I wanted to cry at the pain and scream at the ridiculousness of this situation.  But I took a step back and looked at what was happening in front of me.  It was 10 o'clock at night, and my friends where here, cleaning up my mess and making me feel safe.  What was there really to cry or scream about? I'm ok, I'm cared for and I'm loved.  Isn't that what we all really want in life?  When you take a step back from all the "stuff", what is it we really seek?

Today was a breakthrough day for me and I feel much lighter and happier.  Maybe Mark's time on this earth is over and maybe he has fulfilled his journey.  I accept that may be the case and maybe our time together is coming to an end.  Maybe all that I am doing with supplementing his food and giving him DCA is not going to change the final outcome.  But I KNOW in my HEART, this is what I must do right NOW.  I don't fully understand the things I do, the things I say or the things I write, but I do know that I have always been True to Myself, whether that has offended people or not.  I don't lie, I don't sugar coat and I don't try to be or act how others feel I should.  You can love me or hate me, admire me or despise me, but don't ever feel sorry for me. I am living the life I was meant to live and I accept whatever outcomes present themselves.

The Chaplin asked me to write him a few words, a mantra or prayer if you will.  He believes strongly in sending loving words and positive affirmations to people in need, to help them with their journey.  I too believe in this, and I often allow myself to just sit and feel the love that others send to us.  I understand that not everyone can physically help or that many of Mark's friends find his situation too confronting and too difficult to face.  I understand and I don't feel anger.  But I can tell you that it doesn't take words to help someone who is facing his mortality.  Sometimes just being there, holding a hand and saying "I'm here" is more than enough and while you might feel sadness, I'm sure you will also feel good.  It's nice to see hundreds of people at a funeral, but for me, the time to say goodbye has already passed.  Maybe the time to say goodbye is while the person is still living and the funeral is to honour the life of the person.

Many people are taken too soon.  Young people and even children who still have so much living to do.  Often people are taken and family and friends don't have that opportunity to say goodbye.  I can't imagine how difficult that must be for their families and loved ones.  But we have lived with this disease since Oct 2012 and we have LIVED every day since.  Our last holiday in Kangaroo Island may not have been perfect, but the photos and memories are priceless.  Sebastian and I have cried a river and we are both at peace with whatever the future holds.  My mantra for the Chaplin and for myself are as follows and you may choose to send them to me too or maybe you won't.  Either way, I will not judge;

May I stay connected
May I remain true to myself
May I be kind to myself
May I allow myself to feel the love from others
May I feel peace in the life I have been given

Post Number 40 - Daw House Hospice

It's been two long weeks since "that rehab meeting" and things did not progress as we had imagined they would.  Mark was indeed transferred to rehab the following day and they commenced work that afternoon.  After college I visited him in his new room and spoke with staff.  They were very friendly and seemed quite accommodating, so I felt he was in good hands.  But that soon changed...

Day One of rehab and Mark was met with a gruelling day.  He was lifted out of bed for breakfast at 7.30am, then back to bed, then lifted out again for shower, then back to bed, then lifted out for Rehab treatment, then back to bed, then lifted out for lunch in the dining room, then back to bed, then lifted out for afternoon treatment, then back to bed, then lifted out for dinner in the dining room, then back to bed!  Considering he had only been out of bed around four times in 15 days, this new regime nearly killed him - literally.  In the middle of the night, after just one full day, his brain began to bleed again and he had an absent seizure and any last bit of strength and movement that he had on his left side all but disappeared.  He was now paralysed on the left side of his body. This also included his neck and he was now no longer able to support his head, which now flopped over to whatever side gravity pushed it to.  I was contacted the following morning and told he was to be transferred back to the ward.  In complete shock and as a reflex action, I contacted palliative care and asked if he could be transferred into the Daw House Hospice until I could make arrangements for him to come home.  I had had enough-he was coming home with me!

When he was finally settled in to yet another set of new surroundings, he was quite understandably confused and disorientated.  He did not understand why he had been moved out of rehab and was wanting to return for his next session.  When doctors asked him what he would like to do, he responded with "I want to be able to get up and move around a bit".  The doctor looked at him confused and then at me and responded, "I think we need to aim for something a little more realistic".  I disagree.  It's Mark's life and if he wants to have a goal of standing up, then that is his choice.  No one has the right to say, sorry Mark, but you are going to die, so standing up is not an option!

He has been at the Hospice now for 12 days and he has the best room in the house, with a door that opens to a veranda/garden courtyard area.  The windows can be opened and I have made the room as homely as possible.  His room has a fridge, so I can load it up with lots of healthy food and drink while enjoying quality time with him.  Sebastian has become quite comfortable there too and regularly washes our dishes when we come in with Sunday morning pancakes or evening meals.  He knows how to use the video games and loves playing on the veranda or watching TV in Dad's room.  It's a very different environment, one that is mostly about caring and respecting family and patients in their last days.  I cried every day when I saw how broken he looked.  He was so medically well when he left the ward and now he looks so broken, so weak and so very tired.  Family where contacted and they came up to say their goodbyes.  A difficult time for all, to say the least.  The pain and grief overwhelming for everyone, including me. I felt I had to accept that this was it, nothing more I could do to try to save his life - or is there?

I still quietly hope and pray that there is still something I can do.  I give him his supplements, nutritionally boost his hospital food and as of Saturday night, I began giving him DCA again. I figured we had nothing to lose, so why not.  I had already had his dexamethasone reduced after a CT scan confirmed the brain had indeed bled again but the tumour size had not increased.  This gave me the hope that there was still a chance as it had now been four weeks since he had last had DCA and with all the blood, one would have expected his tumour to grow out of control, and yet it had not.

Last night I visited Mark to give him his second dose of DCA as well as his dinner and I was surprised to see how bright and alert he was.  He had been sitting in a supportive chair all day and was moving his right arm and leg to give himself some exercise.  This was a far cry from the man I had been watching slowly slip away.  We had a lovely evening together, thanks to the help of my Mum, who came to my aid in my time of desperate need.  She stayed with us over the weekend, to help look after Sebastian so that I could do some much needed study and spend evenings with Mark.  I know it's a long-shot, a real long-shot, but I also know that the blood in his brain will take weeks and weeks to go away.  So what if many of the symptoms are from the blood and not the tumour?  I don't know the answer-nobody does.  But I have nothing to lose and absolutely everything to gain, so I dig deeper than ever before and find the strength to move forward.  But my own health is being compromised, so I must stay on top of that also.  Not that easy to do when I spend every waking minute looking after either Mark or Sebastian.  No time for tears or feeling sorry for myself-there is work to be done. I have been given this life for a reason, so I will embrace it and find peace within it, no matter how difficult that may be at times.

I mull over all that has happened.  Every symptom, every seizure, every bleed.  The bleed (haemorrhage) in his brain could be caused by two possible scenarios.   1) The tumour has grown and the disease has progressed.  This is the obvious scenario and the line the medical profession will always take, as this is brain cancer.  It does not reverse or go in to remission.  2) The tumour has begun to break down and through this process, it bleeds.  I needed to stop giving him the DCA in fear that cells would continue to break down and cause more bleeding.  With Mark now stable and a CT scan confirming the tumour is stable and there is additional blood, we were given the "ok" to reduce the dexamethasone dose, which will give his body a chance to heal as this drug tends to inhibit wound healing, but is excellent in reducing inflammation. 

I don't know if this is the right thing to do, but it feels right and makes logical sense to me.  The dose I am giving is minuscule in comparison to what he was having before, so hopefully it will be a gentle enough approach to not cause any more bleeding.  I could just let him go, let him slip away, but every time I decide to do that, something gives me a reason not to.  Small signs from a power greater than I.  A feeling, deep in the pit of my stomach, a discussion with a friend, information from my text books or lectures, just a deep voice that says, "not yet".