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". 

Post Number 39 - Guardian Angels

How do I even start to explain how I am feeling tonight?  Emotionally exhausted, physically barely able to function and quite lost for words?  I have not slept in days, the stress and pressure of trying to get Mark accepted into Rehab leaving me wondering, "Was it really worth it?"  My body physically aches and is locked up in places it has never locked up before.  I am in pain, both physically and emotionally.

Last Friday the chief of Rehab visited Mark, and in my absence, asked him if he wanted to go home.  Of course, anyone who has been in hospital for over two weeks aches for home, so of course he said "Yes".  Was that all that was spoken at his bedside? I will never know.  Was it clearly explained to Mark that going home now would mean being "bed bound" and he would basically be sent home to die as he will never recover? I don't know and Mark can't remember the conversation, which makes me wonder if there even was one.  All he remembers is some doctor asking if he wanted to go home.

I was furious to say the least and I soon tracked down this person and asked the meaning of question.  I was advised that Mark's condition had deteriorated further and that rehab would be a waste of time and resources for a person who is unlikely to make any progress. Keeping my despair under control, the hospital social worker quickly jumped in and said, "Let's have another meeting to discuss where we go from here" and the arrangements were made for Monday at noon...TODAY!

So I had the whole weekend to wait and stew over this meeting, knowing that yet again, Mark would be left in his hospital bed without any exercise, movement or even sitting up in a chair.  Physio had promised two sessions per day in the hospital ward and that indeed happened on ONE day, then one session the next, then nothing.  The hospital ward is not the place to try to rehabilitate someone and resources are stretched way too thin.  It's an impossible task.

Thankfully Sebastian was looking forward to a wonderful weekend with one of my many Guardian Angels and after seeing his Dad on Saturday morning, he happily went off for his weekend adventure, leaving me at home to try to catch up on hours and hours of study.  Another one of my Guardian Angels also came to the rescue to help me to give Mark some physio therapy over the weekend.  If the professionals were not going to do it, then me and my Angels would.  So on both days, Mark had three sessions of exercises in bed plus two times of sitting up on the side of the bed, supporting his body and practicing sitting up straight.

After spending as many hours as I could studying, with only an apple for lunch, I decided to have an early dinner.  As luck had it, I had some left overs in the fridge.  While heating it up I had the idea to have dinner with Mark as I knew that he would be having his dinner delivered about now.  With no need for a baby sitter, I packed up my dinner and some special treats and headed for the hospital.  Together Mark and I ate our dinners and chatted, then put on a movie through his "Telstra Bedside Movie on Demand" system.  It was a lovely evening and having the ability to close the door of his private room and just be together was priceless.

The following morning, I decided to make pancakes and also bring them in to the hospital.  Sunday morning pancakes is a tradition in our household and it seemed pointless to make pancakes for one, so I grabbed the picnic basket, and loaded it up with freshly made paleo pancakes, coconut yoghurt and fresh berries - the taste of home.  Mark's eyes lit up and together we enjoyed our pancakes and another special moment together, as well as a shave and some more physio work.  Once satisfied that I had completely worn him out, I headed home to cram in more study before Sebastian would return home that afternoon. 

I have lost count of how many nights I have gone without sleep.  Even sleeping tablets, which I have never taken in my life, are having little effect.  Mark's fate was now in my hands.  At Noon today, I was to state our case as to why Mark deserved to go to rehab.  Another Guardian Angel was at my side today.  She supported me, held my hand and gave me strength as I sat at the head of the table and gave my speech-the speech I had been rehearsing for days and nights.  My hands shook and my voice began quivering, but then I found my inner strength and I stated the facts about what had occurred over the past 15 days.  The entire time I spoke, every person in the room (around 8 or 9) had their eyes firmly planted on me and my speech, all except the head of rehab, who bowed his head the entire time, until it was his time to speak.  It was most nerve racking and as he spoke, he stated his case as to why Mark should go home.  I held my breath and held my Angel's hand, thinking, "This is it, he is going to refuse him".  I did my best to keep all emotions in check and stick to factual information, again adding more information into the discussion.  Eventually, after a one hour meeting and input from others in the room (Palliative Care, Physio, Social Worker), the Chief of Rehab, reluctantly accepted him and began making arrangements for a bed for him in the Rehab ward. 

Everyone left the room with the exception of my friend, the social worker and the Pal Care Worker, and when the door finally closed, I burst in to tears.  I was congratulated on my hard work and dedication to Mark, but it did not feel like a win to me.  I had to fight too hard and there is now so much pressure for Mark to show some improvements.  Parting words from Rehab where, "it is unlikely that we will see any improvements at all.  If so, we would have already seen some improvements by now.  No I don't feel victorious, just exhausted.  I went to give Mark the good news, took one look at him and as he smiled at me (something he doesn't do much these days), I sobbed and sobbed and hugged him so tight.  "You're in" is all I could get out, "You're in".  I held his face in my hands and looked him in the eyes as tears streamed down his face.  "I hope there happy tears?" I asked.  "Yes" he replied "Thank you so much".  We hugged and I sobbed some more, before pulling myself together and turning into a sergeant major.

Time for your workout, and off we went, exercising in bed and sitting up on the side of the bed, in full knowledge that it would be unlikely now that he would receive any more physio while on the ward.  Picking up Sebastian after school, we called in to the hospital for one more physio session before heading home and giving Sebastian some quality time with his Mum.

I have been commended for my dedication and been told I am an inspiration and while I am truly touched by these comments, I also feel a little confused.  Mark is "the one".  He is my true love, my soul mate, my world.  Yes I have Sebastian of course and he is the other part of my world, but we are a trio.  Our love for each other is infinity.  I can't imagine doing anything else but fight for the rights of the man that changed everything for me.  No other person on this earth understands me like he does.  He loved me at my worst and admires me at my best.  I constantly say and do things that offend or upset people, but never with the intention of hurting anyone.  I would do anything for anyone that I care about, but I am often misunderstood.  My mother shares the same fate, always giving herself to others, but often misunderstood because of bad delivery.  So I guess it's genetic.

So now we wait for Mark to be transferred which, I am told, will take a day or two.  Tomorrow is College for me, but first I must see the Osteopath to unlock the muscles in my shoulder.  I cannot give Mark much physio tomorrow, nor will I be able to spend as much time with him as I normally do, as I feel I am failing my Pharmacology subject and missing just one lecture would surely seal that fail.  One day at a time is all I can do, just one day at a time, one foot in front of the other.

Post Number 38 - The Long Road to Rehab

A week has passed since my last post and still Mark has not transferred to Rehabilitation. A blood clot was found in his left leg-not surprising since he has had very little physio and nurses would not get him out of bed without the aid of a lifter. Compression stockings had only been put on days before. 

The clot brought with it the risk of complications.  If the clot were to move to the upper part of his body, it could lodge in his heart, lungs or brain.  As he had already coughed up some mucus containing blood, doctors were quite concerned.  It was decided that the bleed in the brain was only small and that some blood thinning medication would be the best solution to prevent further clots.  So late Friday evening, the first blood thinning medication was administered via a needle.  This continued twice daily over the course of the weekend.

As the weekend progressed, Marks condition deteriorated even further and seizures now became a daily occurrence.  Nurses who were pressured for time and over-worked, simply didn't understand that rolling Mark over would cause him massive discomfort, cause the blood to rush to his head and consequently cause a seizure.  It seemed I was talking to a blank wall when I repeatedly asked them not to lower his head lower than his feet.  They ignored me and gave Mark pain medication as they believed he should not be in pain, even though they were the ones who had caused the pain and the seizure.

Monday morning I visited the hospital in my usual routine of taking Sebastian to school, grabbing coffees and seeing Mark.  He drank his coffee and I slowly lowered his head in preparation for the nurses to clean him with their hot wet towels.  I begged them not to lower his head any further and roll him so far over.  But it didn't matter.  As soon as they started to move him the seizure came, only this time his eyes glazed over and stayed that way.  I talked to him and held his hand, waiting for him to come back, but as the minutes passed, I became more and more concerned that he was not going to return.  It was nearly ten minutes before his eyes showed signs of life and I held myself together and took a deep breath.  I spoke with the doctors and explained how his symptoms had been exacerbated over the weekend and that I believed the blood thinner was the main cause.  I also believe the coffee may have contributed.  I demanded that the blood filter be installed to stop the clot from moving to his upper body, as per the discussion last week, and that it needed to be done as a matter of urgency as he had been left, yet again, to wait until "business hours" for anything to be arranged.

Later that day, Mark was transported to the Flinders Hospital and the blood filter was successfully installed and blood thinning medication ceased. But still no word on transferring to Rehab so I started asking questions.  One source told me there were no beds while another source later that day, told me that Mark was not medically stable to go to rehab.  On top of this, I had discussed with one of the doctors, the use of codine plus paracetamol (Codral Cold Flu tablets) to assist in reducing the mucus that was now causing pressure in Mark's head.  Nurses had again started giving him Panadol as he was complaining of headache but when I came in at 9am, I could easily see and hear that he was full of mucus and phlegm again.  Doctors agreed that I could supply this medication and it would be given to him at lunchtime.  Satisfied that everything was in hand, Mark had been cleaned in bed without having a seizure, I felt it was safe for me to attend College.  In my break at 1pm however, I discovered that the medication had NOT been given and when I asked the nurse to administer it, she told me that "I did not have the right to demand he have medication and that Mark had to ask for it himself, which he had not done".  Another nurse that same morning had stated to me that "Mark always has a headache just before he has a seizure", as if she knew my husband better than I did. 
All these things started to swim around in my head while I sat in my Pharmacology lecture, unable to concentrate on the various types of antibiotics and how they work in the body.  My blood boiled at nurse’s ignorance and careless attitude.  By the time I picked up Sebastian from school, I had to tell him that we were having problems at the hospital and that I needed him to be patient while I spoke, very sternly, to medical staff, especially when I then learned that there was no hope for Mark to go to rehab this week.  It had been 11 days since Mark had been admitted into the Repat hospital.  11 days surrounded by geriatric men, who were either bed bound or had dementia and who were totally or mostly deaf.  11 days with very little physio or activity.  11 days without a shower.  11 days of waiting for someone to give him a chance.  As you can imagine, if you know me at all, I lost the plot!

Needless to say, Sebastian witnessed how to fight for someone's rights.  How to be stern, angry, yet not yell or be abusive.  At least, I hope that is how I came across.  I stated the facts, stated my dissatisfaction and threatened to discharge Mark and take him home.  Within ten minutes of the conversation, I was offered a private room for Mark, daily efforts to get him out of bed, extra physio and a shower in the morning, so I guess the message came across loud and clear.

This morning (Wednesday), I visited him and he looked very unwell and tired.  But then I learned that he had already been out of bed, showered, sat in the chair, had breakfast and was put back into bed again to rest - all this before 9am!  The man was exhausted.  I told him how proud I was of his efforts and that I understood how hard that was for him to do.  He fights on, as do I, however the pain in his head may change his opinion of doing it again tomorrow, but we will see.  Mark has always been the quiet achiever, while my presence is usually felt.  But we are both fighters in our own ways and we continue to fight each day, each hour, each medical system, until we feel it’s best to stop, which will always be his call.  It's not the cancer we are fighting, it's the chance to "give Mark the opportunity to try to rehabilitate, the chance to get better, rather than just riding him off as a terminal patient with a wife who can't accept that her husband is dying." Maybe he won't get better and I accept that this may happen, but while he is willing to push himself, I'm happy to advocate for him, no matter who I rub up the wrong way.  While I still see there is a chance, I'm going to push.

Post Number 37 - Have we Lost the Fight

It's been several weeks now since reducing Mark's DCA.  We stopped the Melatonin altogether as it was making him so very tired all the time and we decided it was impacting his quality of life too much. Improvements did come.  They may have been subtle improvements, but they were there.  He became stronger on his feet and I no longer walked behind him with a walker whenever he walked to the toilet.  But he did still need quite a lot of help and improvements were slow in coming.

This last week he had been complaining of pressure in his head and sometimes some sharper pain.  He also suffered a sore throat and seemed to be coming down with a cold.  Not surprising as we are in the middle of winter and have a son who attends school.  That said, none of us have really suffered with any major colds or flu's and have maintained a healthy environment throughout the colder months.  The pressure in Mark's head seemed to subside with simply a Panadol and a Cold & Flu tablet to reduce some mucus and all seemed to be well.  One Cold & Flu tablet at night also seemed to keep him comfortable and relatively pain and pressure free. 

Last Thursday we had our first appointment at the Repat Hospital to meet one of the Palliative Care Doctors.  This was simply the "get to know you" appointment to have Mark "in the system".  The doctor was wonderful, very supportive of everything we have been doing and very understanding.  Once home, I drove up the driveway in my usual manner so that Mark could enter the house via the back three steps and the ramp into the laundry.

I unloaded the car first and returned to help Mark out of the car.  He began shuffling along but after only a short distance, I could feel he was getting weaker.  I called out to his brother who was visiting from Mt Gambier to help, but even with the two of us holding him, his body just went limp and we simply could not hold him up.  Slowly we eased him onto the ground where he sat resting on his knees, the asphalt driveway cutting into his skin through the soft tracksuit pants which was his daily attire. I ran inside the house to grab my usual aids to get him up again as I had become somewhat of an expert by now on getting him back on his feet.

But this time was different.  His body was heavy and limp and there was no way we could lift him up.  I immediately rang my neighbours for help, who arrived within minutes.  Their strong young arms lifting him into the walker and then into the wheelchair and then pulling the wheelchair up the steps, we got him into the house.

Shortly after, the District Nurse arrived to give Mark a shower.  This would be the first time someone else would do this task, as he had not been keen for anyone to do this but me.  But finally he agreed to allow the nurse who had been visiting us for the past two weeks to help so that I could have a much needed break.

With Mark sitting on the toilet, I grabbed her and pulled her into the bedroom where I burst into tears as the adrenaline surging through my body subsided and the shock set in.  She hugged and comforted me and assured me she could handle things from here.  I explained that he was too weak to have a shower, so together we brought him into the bedroom so she could sponge bath him.

While she attended to his bathing, I spent most of the time on the phone to support workers, making arrangements for additional support.  But within hours Mark's condition deteriorated and he could not settle when having a laydown and stronger pain medication was not working.  It was time to call for more professional help and I called the "Advanced Care Paramedics" who specialise in Palliative Care cases.  They can administer pain medication and do not insist on transporting to hospital such as regular ambulance workers do.  By this stage, tensions had grown with Mark's family members who had come to visit.  Their opinions on what was best for Mark, not matching Mark's wishes, nor mine.  The tension and stress continued to grow as they felt helpless as I ran around making food for Mark to eat and making numerous phone calls.  Eventually the bubble burst and while Mark lay in the bedroom, tired and in pain, we argued and argued in the room next door.  The arguing progressed to Mark's bedside where he expressed his wishes to stay at home where he was receiving the best care.  He was happy at home.  Thankfully the paramedic arrived and sensing the tension in the room, he expressed that Palliative Care always respects the wishes of the patient and not the family members.  Mark was very capable of expressing himself and he made his wishes very clear.

After assessing Mark further, the paramedic advised I speak with our Palliative Care Co-ordinator.  With her on speaker phone, the paramedic and I made the decision to have him transported to hospital as there was concern of a bleed in the brain.  Mark had tried to get out of bed and couldn't and I knew that I would not be able to care for him at home if he was not mobile enough to get to the toilet, at least not with the current set of equipment in the house.

So off to Flinders Hospital he went while I paced up and down trying to work out what to do next.  I rang the Naturopath and close friends and our Palliative Care worker came and comforted me as all the trauma of the morning flowed out.  We spoke at length and she also spoke separately with Mark's family before seeing herself out.  Eventually I pulled myself together and picked up Sebastian from school, who was now happily playing at OSHC (out of school hours care).  I took my amazing boy to dinner and explained all that had happened.  But looking into his eyes, I could no longer hold back tears and again the flood-gates opened.  Sebastian simply put his arm around me, rubbed my back, as I had done to him so many times in his life and said "it’s ok Mummy".  We hugged and hugged and he gave me his strength and we enjoyed our lovely dinner together.

The following day confirmed that Mark indeed had a bleed in the brain, most commonly called a stroke and this was the cause of his pain and the sudden increase in symptoms.  We were then advised that he would transfer to the Repat Hospital, a small hospital at the end of my street, who have specialised rehabilitation areas as well as hospice and palliative care.  I was happy for this transfer as I felt he would receive better care and that I could access the hospital faster and easier.

But I was soon to realise that one hospital is much the same as the next, no matter the size.  Medications were incorrectly given and without my constant intervention, I feared the worst.  As it was now the weekend, physiotherapists were not available, nor were the main treating doctors, coordinators, rehab nurses and social workers.   So on Saturday, I decided I would get him on his feet myself.  I arranged for Sebastian to have a playdate and a sleepover, which he was totally thrilled about and I set my sights on the hospital.  To my pleasant surprise, I found Mark out of bed and sitting in a chair.  This was going to be easy I thought.  We sipped our coffees and chatted and then we began.  I turned the chair so he was facing his bed and he could grab on to the rails and helped him up.  He stood strong.  After about 20 seconds, I guided him back into the chair, gave him a rest and we went again, only this time I asked him to lift one leg up and then the other, just gently, just to see if he could.  He did it, no problem and no complaint.  I felt this was enough for one day and it was all that we needed to show that there was still a chance for mobility.

I walked out of the room for a minute to chat to a nurse and when I returned, I found Mark dosing in the chair.  Thinking that I had probably exhausted the poor man, I felt we should probably pop him back in bed and let him rest.  I asked the nurse for assistance and turned the chair so that it was better positioned.  Together we began to stand him up, but before his bottom fully left the chair, his body went stiff and started sliding off the chair, then it went completely limp. The nurse and I slowly let him slide to the floor, ensuring he did not hit anything on the way.  Nurses stood and looked on.  I looked up and said "could we please get some medical assistance....he is having a seizure".  With that, they all snapped to attention and ran off seeking assistance and equipment, with just the one nurse staying with me.  Mark's eyes were glazed over and non-responsive and I pointed this out to the nurse so as to have a witness.  Doctors came running within minutes, but by this time the seizure was over and Mark's eyes returned to normal and he was responsive again. 

But now he lay on the cold hard floor, unable to get up.  A lifting machine was brought in and he was put back in to bed while I sat in a private room with a doctor and explained what had happened and the history of the past 6 months.  She was lovely, very understanding and wanting to help.  But she was only a temporary doctor who was new to this hospital.  I was told that I would be involved in a meeting with doctors, nurses, palliative care, rehab and physio workers and we could work out a plan together, but this would have to wait until Monday as they do not work on weekends.  So we waited and waited and I double checked every medication they gave him and questioned the amount of pain medication that he was given and the amount of dexamethasone he was given.  Mistakes were made and not by me. 

So now it's Wednesday and still no meeting has taken place, physio has been minimal and Mark has not been on his feet since Saturday.  Yesterday I sat by his bedside until the doctors came and I was happy to finally meet a doctor who is willing to take responsibility for Mark and who agrees that he needs to get back on his feet, not stay bedridden in a ward full of elderly men.  He assured me that he would refer him to the rehabilitation ward where they were better equipped to handle Mark's needs.  Content that there was nothing more I could do and that things were heading in the right direction, I gave Mark a shave and cleaned him up and headed in to the city to attend College.

I parked the car and checked the time-I didn't need to rush, so I decided to do some meditation.  I sat comfortably, and using my phone, I started a 10 minute guided mediation to give me some inner strength.  I felt totally relaxed and at peace and a strange thing happened.  My heart literally heated up.  It didn't beat differently and I didn't feel hot or cold anywhere else in my body, only my heart.  I felt the warmth of all the people who are willing us to keep going, who are sending their love, who are praying for us and wishing Mark some recovery.  I sat there, eyes closed, heart hot, smiling and at peace, the odd tear running down my face.  When I arrived at College, I sat down with the feeling that I was where I was supposed to be and that everything would be alright.

My new morning routine is getting up early and having Sebastian at school by 8.30am so I can be at the hospital by 9am, ready to meet doctors and ready with questions that needed answers.  Today I wanted to know why he had not yet been relocated and when that might occur.  Doctor assured me that he would be relocating and that rehab was the best place for him, but later that morning, when I started asking more questions of nursing staff and asking why the physio was only seeing other patients, I learned that the rehab nurse had seen him yesterday and she made the decision that he was not a suitable candidate for rehab (terminal illness, seizures, high risk, not going to recover etc).  Devastated, I walked up the hallway in tears.  The doctor who had now finished his round saw me and pulled me aside.  He comforted me and assured me that he was going to push hard to get him in rehab.  We chatted at length and I told him that I had asked Mark a few days ago if he wanted to go on.  I said to Mark "do you want to keep going and fight this, or do you want to let go?" I told him that if he wanted to let go that I would support him in his decision and not push him further.  He said "No.....Push me.  I want to go on".  I quoted him to the doctor.  I understand that he will never make a full recovery, but I strongly believe there is still a chance for some mobility.  But the blood in his brain will take weeks to disperse and until this is gone, he will continue to have symptoms, but that doesn't mean they will be permanent. There is still hope and as Mark is still willing, I must keep pushing on.

Post Number 36 - Palliative Care

Obviously it has been several weeks since my last blog and there are several reasons for this.  Things are not going well...at all.  I have been feeling every single emotion there is, every day, over and over.  I have felt angry, hurt, lonely, upset, frustrated, let-down, hopeless, grief-stricken....need I go on?

Mark's MRI scan was done in early July and we waited around for the scan to be copied onto a CD so that we could look at it ourselves and also allow our Naturopath to see what is going on inside his brain.  Mark made the marathon walk up and down corridors to get to the MRI clinic at the Flinders Hospital with the aid of a walker and several rest stops along the way.  This would be impossible now.

Once home, with Mark tugged up in bed for his morning rest, I reviewed the scan and compared it to the one done in April.  I was horrified with what I saw.  The pictures were lit up like a Christmas tree with much larger highlights than ever before.  Although we hadn't received the official results, it seemed pretty obvious to me that Mark's decline or increase in symptoms was indeed tumour growth.

Days later we met with our favourite Oncologist to receive the report.  Although we knew what she was going to say, we were still taken aback by the sadness she displayed and the apologies for not arranging Palliative Care sooner.  I explained that we were still trying to fight the cancer with the DCA (Dichloroacetic Acid) and other treatments, but she just smiled and again apologised and said she would organise the palliative care team as a matter of urgency.

So, it seems we are on our own now with little support from the medical profession, as they seem to be bound to treat cancer with the standard treatments of surgery, chemotherapy and radiotherapy, regardless of what successful treatments are being done overseas and regardless of the trial currently underway in Australia with DCA.  The message seemed quite loud and clear, go home, make him comfortable and prepare for the end and how you would like that to happen.

Angry and frustrated, I turned to our Naturopath and showed him the scans.  He told us stories of other patients who had been told similar things, but who had turned things around and that inflammation displays very similar to tumour growth, has the same symptoms and that it is not always that easy to identify one from the other.  Of course, he stated that it could indeed be tumour growth, but that we were using the best options and needed to step things up and keep going and not give up.

So, as you can imagine, if you know me at all, we stepped things up, increased the DCA, introduced melatonin and introduced weekly hyperbaric treatments to help break down the tumour and keep the inflammation at bay.  But as the weeks went by, Mark's condition continued to worsen.  He became weaker and weaker, and more and more tired, to the point where he would have several daytime rests/sleeps that would last several hours.  In fact, the only reason he would get up at all would be to eat!  Just getting to the toilet or to the kitchen was becoming extremely difficult, slow and energy draining.  Several times he has fallen, simply because his legs did not have the strength to hold his body up and I would walk behind him with the walker to catch him if he wobbled.

I became more and more tired, frustrated and angry as I drowned in this responsibility to keep him going.  It would be easier to just let him die.  Roll in the hospital bed and let him toilet, bathe and eat in bed, have nurses care for him and let him drift off.  But I can't.  Not when he still has the will to live.

Through the Palliative Care system, we met with a team of professionals including co-ordinators, nurses, occupational therapists and physiotherapists.  Equipment such as a walking stick, a walker, foldable ramp, wheelchair and bed-stick where brought in to assist with daily life and it meant I could return all the items borrowed from my elderly Mum.  Handrails have been measured and we await installation.  Many hours have been spent speaking with these people, explaining our situation and the services that they can offer us.  There are nurses who make regular visits, volunteers who can sit with Mark while I go out and other services that we can use when the need arises.  It's really a wonderful system and if we were preparing for death, very suitable.  But we are not and they are all aware and very supportive of whatever choices or therapies we wish to pursue.

My semester at college started last week and with Mark's physical abilities at an all-time low, I did not know what to do.  It is not easy to hand this responsibility over to a stranger or paid worker. He does not need a nurse, does not need or want to sit and chat to anyone all day, just needs someone to be there when he walks anywhere, needs help to get in and out of bed and needs someone to prepare or heat up food for him.  The Carer Support service that I had previously used is still an option, but I would need to pay for this service and it is not cheap.  While I have only enrolled in one subject which requires attendance at college, it is still a 3 hour lecture, once a week.  Add on time to get into the city, park the car and get to the college, attend the lecture, get back to my car and drive like a crazy person up to Blackwood to pick up Sebastian from school, I am out of the house for over 5 hours!  Not knowing what else to do, I rang Mum and asked for her help.  She already had plans, but she changed them and came to my aid.  But it was a very stressful day for all concerned.  My instructions where not followed by either Mark or Mum, accidents happened and I arrived home stressed, furious and screaming like a women possessed.  This was not going to work!

As the dust settled a few days later, my head clearer, my blood pressure back to normal, I had an epiphany on how we might be able to reduce some of Mark's symptoms by changing his dosages.  I rang the Naturopath and told him my thoughts and he had been having the same thoughts also.  So last week we implemented the changes and now we wait and see.  The theory is this...if Mark's symptoms are from inflammation, the symptoms should be reversible if the inflammation is lowered.  If the inflammation is from tumour growth, nothing will change and his condition will continue to worsen.  However, if the inflammation is from tumour breakdown, his condition should improve.  Slowing down the tumour break-down by lowering the DCA and melatonin, in theory his body should not need to create so much inflammation to take away dead tumour cells.  The hyperbaric treatments also help to reduce inflammation, so by increasing the amount of these treatments from one to three a week should also help. 

So now we wait.  It's only been three days and I watch his every move and every mood to find an improvement in his condition.  It's too early to call, but there is a glimmer.  It's all I have but I have to hang on to it, otherwise attending college will not be possible and we will have to admit defeat.  But I see a glimmer, so let's hold on to that and get through another day!

If you want to learn more about how DCA works with cancer cells, this link gives a brief description; http://practicalbio.blogspot.com.au/2011/05/dca-cure-for-cancer.html