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

Post Number 35 - Sebastian and Me

Many people often ask me "How is Sebastian coping with everything?" and seeing as though I haven't written much about him, I thought I would take the time now to tell you a little more.  Sebastian is in his first year at school (Reception) and he has taken to the change extremely well, despite finding out about his father just two weeks in!

He makes friends easily and is a good student.  He proudly shows his reading level to be at 5 and his school gives him all the support he needs to thrive.  He has so much going on in a week with sport, Japanese, maths, computer room, singing, music,show & tell (with specific topics) and library, that his school life is never boring.

There has however, been moments of uncertainty which of course, he has felt.  He never says much, but I feel him cling to me, not in the physical sense, but always wanting to spend time with me.  I managed this by doing special projects with him such as a huge mural painting where we both drew pictures and then painted. It took several weeks to complete and now hangs proudly in our kitchen.  We also do daily gratitude at dinner time where we all express what we are grateful for each day before we tuck in to our paleo dinner.

The most important thing is to ensure we keep the lines of communication open and that he feels that he can talk to us about anything at any time.  Never have we shushed him or told him to be quiet.  We always try to listen to everything he says and make him feel that he has been heard.  We find this to be the most effective way, although sometimes we all need a little peace and quiet, so we might say "alright, well that all sounds wonderful, but let's eat our dinner now and then we can do something special together before bed" or something like that.

I have watched Sebastian's relationship with his father deteriorate quite considerably, almost to a point where he almost ignores or seems to forget that Mark is in the room.  This hurts me greatly as his bond with his father used to be very strong.  I first noticed this when he told me that I was his favourite parent.  This shocked me as I am usually the task master and Mark would always be the one who would do the fun stuff with him.  I remember being jealous about this a while ago, but now I am the one having special moments with him and playing in the land of Skylanders. 

A few weeks ago, a very strong migraine completely crippled me.  I had to lay down and rest and while I tried to get someone to pick up Sebastian from school, it just didn't work out.  Feeling a little better after the rest, I went to school.  As Sebastian came running out of his classroom, I felt the colour leave from my face and my body grow weak.  I grabbed him quickly by the hand and pushed my way through the crowds of doting parents and headed for a bench next to a garden area where I threw up.  Sebastian was horrified that his rock-solid mother had fallen ill.  I sent him to fetch a glass of water and some tissues and he ran to get help.  Later that evening, we had a big talk about being sick and how even Mummies fall ill too sometimes.

Another way Sebastian copes with everything, is by feeling like he also is a contributor in the household.  He has daily jobs to complete and he helps out with other things as they arise.  Each morning he makes his bed, turns off his heater and opens his curtains.  Recently, he has started making our bed as well, unassisted and without being asked.  He is so proud of himself and we always tell him how grateful we are of the extra effort he puts in.  He also helps me with the dishwasher and clearing the table after meals.  He dresses himself and packs his own schoolbag.

He has grown up so much over the past six months and we couldn't be prouder of the boy he has become. There is still much re-bonding that needs to occur between him and his father, but that will come in time.

As for me, some days are still a struggle.  While Mark has made some huge leaps and bounds in his condition, this week has been particularly tough. Mark has been feeling quite tired for the last four days and tends to withdraw.  When he is feeling down, I also go down with him and some days I have just wanted to walk away.  I get short, snappy and grumpy and just down on the whole world.  Just yesterday I scratched and dented my car in a significant way.  I felt so angry about everything.

Waiting to be served at the supermarket, I looked into the trolley of a lovely middle class looking women with a lovely dressed kindy aged child.  The child was crawling dangerously on the seat of the trolley, the trolley overflowing with groceries.  I couldn't help but notice the massive box of Corn Flakes, the large box of ice-cream cones and the equally massive box of small packets of chips that was teetering on the top of the trolley.  I looked down at my trolley full of vegetables and other organic specialty products and just wanted to scream.  Why?  Why is it when we have been eating healthy and nutritious food for the past three years, are we having to deal with this?  WHY!!!! I wanted to scream at the lovely lady and to everyone in the entire supermarket...DON'T YOU KNOW WHAT YOU ARE FEEDING YOUR FAMILIES???  Throwing my bags into the car, I backed the car out, only stopping at the sound of the thud of hitting the car park pillar.  Furious at myself, I burst in to tears.  It's just not fair, we are doing all the right things, why is he sick, why is he so tired, why why why?

So yesterday I had a little "self-pitty" party and today is a new day.  After crying away all the anger, I feel somewhat better.  Certainly the paleo lifestyle is agreeing with me and I feel lighter on my feet and just an overall feeling of wellbeing.  But everyday is still hard work and last week I committed to two subjects at college which are due to start very soon.  At the time, Mark was feeling well, happy and relatively mobile and even quite self-sufficient, so it seemed safe to make this commitment. But now I wonder if I have made the right decision, but if I don't study, I feel I WILL go completely mad.  I need to get out and socialise with people.  Everyone I know seems to have their own problems, issues or busyness.  People often say, "What can I do?" or "Yes, lets catch up" and then I never hear from them again.  I don't blame them or get angry as I do understand, but I have to do what is right for me and what makes me happy.  Going to college makes me happy.  Meeting likeminded people, makes me happy.  Forgetting about my difficult life for a few hours, makes me happy. So I guess my decision stays and we see what happens over the coming weeks. 

Maybe all we need is a carbohydrate rich lunch! Some chips, bread, rice and pasta and all will be well again! ;-)

Post Number 34 - From Hoplessness to HOPE!

There has been so much development in the last three weeks and I am pleased, relieved and proud to say that we now have three practitioners who are all working together to cure my husband.  Yes you read correctly, "cure".  However, we are talking about a disease that does not have a cure, cannot be surgically removed and cannot be cured or reversed by the modern practices of radiotherapy or chemotherapy, so how can this happen? Can it even happen? Modern medicine would say NO, but I say, Why Not?

It's a giant, complex puzzle, but with the right practitioners on board, we believed anything possible and certainly worth investigating every option.  The Chinese doctors have been working their magic and after two and a half weeks of modifying and testing the homeopathic detox remedy, Mark's kidneys finally starting working properly and heavy metals began appear in his urine.  They also worked on toning his body and increasing his energy levels as well as ensuring his body was ready to accept any kind of medicine to treat the tumour.

Another doctor we have been seeing is a holistic GP in the Adelaide Hills.  He has been ordering all kinds of blood tests to further pinpoint exactly what is going on within Mark's body and making any corrections necessary with IV infusions, specific supplements and diet.  Through his investigations he found a gene mutation which explains the thickness of his blood, which had shown up on a live blood analysis, and also explains the meridian blockage.  The effects of this mutation can easily be managed by high doses of folic acid, which should also help with his fatigue.

The third practitioner is a Naturopath who has treated brain tumour patients in the past.  He provided us with information on a compound called dichloroacetate (DCA) which has been studied overseas with great success and there are clinical trials currently underway in Australia, but of course we didn't have any time to waste, so we began treatment immediately, under his guidance.
http://www.abc.net.au/news/2014-10-27/cancer-drug-trial-to-start-in-canberra/5842910

Within 24 hours of Mark taking the DCA we noticed an improvement.  One good day followed another and another and each day his mobility improved slightly and he started feeling stronger.  Not even a week later, he was walking down the street at Stirling, when the previous week, the walk out to his office and back to the house again meant complete exhaustion for the rest of the evening.  The changes have been nothing short of a miracle and it couldn't have come soon enough.

Life had become so challenging and I had been struggling with the mental and physical stress of caring for him and for Sebastian.  Endless trips to practitioners and to and from school had taken its toll on me and weekly I would experience migraines, which I had been free of for years.  Each night I would collapse with exhaustion after constantly being on the go from 7am to 9pm.  I was only days away from calling palliative care and seeking some sort of live-in nurse or daily help.  While the Carer Support was helping, I was and still am struggling with other people in the house.  Last week I was privileged to receive the use of a gardener for three hours.  I felt so lucky to have access to this at no charge and set him to work with a list of tasks to complete.  However, days later, when I finally had the time to look over what he had done, I found that he had not completed what I had asked and in fact, has now created an even bigger workload for me, as he has raked up all the existing mulch and left me with nothing but dirt in a large, inaccessible part of our garden.

Similarly, carers have thrown away some of my expensive ingredients, put things away in places which are now a mystery and not followed instructions, leaving more work for me to do upon my return.  Exhausting is the only word I can use to describe the last three weeks.  In-between all of this, I needed to finish two final assessments for College and failing to do this would mean failure of the subject.  Again the migraines came, but with appointments starting to ease, I made the time and completed the work, albeit not at the standard I would have liked, but hopefully good enough to pass.

Last week saw Mark turn 38 years young and I felt compelled to create some sort of memorable celebration for him.  I contacted a select few of his closest friends and asked if they would join him to commemorate his birthday.  Our kind and generous neighbours allowed us to use their "man shed" which is fully equipped with pool table, dart board, lounges and beer fridge and the afternoon was a great success.  Clearly Mark's energy levels were at their peak as he made his way up the hill to the shed, then down and up again several times within the two hours to use the toilet in the main house.  Surprisingly, he made it through the afternoon and did not even seem to feel the effects of such a huge day the following morning.


I feel I want to scream from the rooftops "He's Healed, He's Cured!" but I must remain calm and realistic.  It is still very early days and even if the tumour regresses (which we feel it has), this does not necessarily mean it will be cured or gone completely or even forever.  But, what is important, is that we continue to look at Mark's health in a holistic way.  While DCA may be making a huge impact, it is most likely due to the initial work done by the Chinese doctors, the supplementation and constant watch on his condition by the holistic GP as well as the change in diet toward a low carb, low sugar and higher protein (paleo fits this the best).  As for me, some days are easier to manage than others.  Some days I turn into a screaming banshee if someone demands just one more thing from me or rolls their eyes at the food I have prepared or gives a big sigh when I say "it's time for bed", but I am doing the best I can with the resources that I have.  Seeing Mark improve every day and seeing him try to help me, gives me strength and helps me to push on.  The love we have for each other keeps us going and keep us trying to achieve all we can each and every day.  It may seem an impossible task at times, but looking back at how far we have come in such a short time, gives us hope that there will be a future worth looking forward to, but for now, we take it one-day-at-a-time.

Post Number 33 - Putting Puzzle Pieces Together

The last two weeks have been challenging and confronting to say the least.  Once home from Kangaroo Island, I contacted Mark's family in Mt Gambier and in response, his sister flew to Adelaide to stay with us, to help me to care for Mark and get Sebastian to and from school.  Over the next two weeks I rang as many support agencies and alternative practitioners as I could, desperate to get help.

Our trip to Sydney had already been booked weeks prior, but each day, Mark grew weaker and his mobility became more and more impaired.  Determined to get him there one last time, I contacted the airline to ask for wheelchair support only to be told that this was already booked out for the flight over. I rang both airports and rang the airline several times, hoping that someone would have a solution.  I tried calling the wonderful people who we stay with, but their phone line was out of order due to recent storms. I continually hit brick walls and when Mark said he didn't have the strength to have a shower (sitting on a chair), it was time to pull the plug and stay home.

As I watched the light of my husband's soul, slowly dim and flicker, I grieved and wondered if it was time to accept that I could not do more and that I should call for palliative care support.  I looked over all my notes and scribbles and decided I would make a few more phone calls.  With doors slamming, I was almost ready to admit defeat....but then, one by one, I started receiving phone calls of cancelled appointment slots with doctors with long waiting lists.

At times I admit, I did push Mark to get to these appointments and he showed aggression for the first time in his life.  I grew scared, felt that it was too late, the man I love was gone and he was now a different man and only a shell of who he once was.

Carer support finally started to filter through and I could confidently send Mark's sister home with the knowledge that professional help had now arrived.  We hugged at the airport, with the shared knowledge that there may now be little hope, but still I was determined to ensure I had researched and reviewed every last treatment option.

Monday brought one last appointment with two Chinese Doctors.  This was one of the original doctors I had spoken with back in February, but we had chosen the Sydney doctor instead due to his history of success with brain tumours.  I had no expectations and I felt that it was unlikely to hold much hope for us.  The day before was Mother's Day.  I purchased my own flowers and booked a table at the local café for lunch for us, my Mum and her partner.  Just getting there was a struggle as Mark's mobility had further deteriorated and he was now using aids to walk even short distances.  The mood was sombre and while we ate an ok meal, it was a far cry from the healthy, full flavoured Indian dishes I had been preparing at home.

So we attended the appointment, armed with a long list of failed treatments, supplements and tests as well as a urine sample.  Within minutes, these amazing doctors reviewed the paperwork and assessed Mark by feeling his pulse.  Immediately they started producing some answers and more importantly, some solutions. 

1. Brain and Kidneys are directly related and Mark's Meridian or pathway was completely blocked.  So much so, that no herbs, supplements, nutrition or chemo would ever reach the desired location.  This needed to be unblocked immediately.

2. His blood/body is full of heavy metal toxins due to his kidneys not filtering correctly (despite blood tests and heavy metal tests not representing this). This was determined by the urine sample showing zero signs of heavy metals.  Our kidneys have the most important job of filtration and passing the toxins through the urine.  There should always be something in the urine if the kidneys are functioning correctly. Kidney support + heavy metal detox required urgently.

Bruising from cupping

Within 15 minutes the "cupping" treatment began.  I sat there amazed and in awe as these experienced practitioners practiced their traditional methods.  They showed the congealed blood which had been blocking his meridian, provided me with the tools for daily testing of his urine, a homeopathic remedy for the detoxification and a special Chinese tea to break up the phlegm that was on his chest (even though he did not have any obvious signs of congestion) . I was also given strict instructions to photograph the test tube each morning and email it through so that it could be further evaluated and treatments adjusted if necessary. 

We drove home somewhat elated that we finally had some answers and a treatment plan with doctors who not only were not only incredibly skilled, but who wanted a daily update of his condition.  By the time we arrived home, some half an hour later, Mark seemed different.  Not physically, but his internal light was shining again!  Conversation was different.  My husband was back! The man I love was back from the brink! 

That night he had the one drop of detox remedy and went to bed but by 2.30am, he was in great pain.  His knees and ankles feeling as if sharp needles were jabbing him.  Standard pain killers, massage and homeopathic creams failed to bring any relief.  By 5am I started to dose, exhausted.  At 7am, Mark decided he would not wake me, but attempt to go to the toilet unassisted.  Big mistake.

In my dosed state, I felt him get up and listened as he went to the toilet.  In the knowledge that he needed to produce a sample for me to test, he stood while doing this.  Before long, his tired, weak and painful legs gave out and slowly he slid to the floor.  Still dosing, I waited to hear for him come out of the toilet, but he did not.  I soon discovered him crumpled on the floor, wrapped around the toilet bowl, unable to get up.  In desperation I squeezed in the door and foolishly tried to lift him.  Nothing worked and I needed to get help, so I rang for an ambulance.  I gave him pillows and reassured him, sent Sebastian to the neighbours and waited for help.  Everything seemed to take for ever but eventually we had him up and out and wrapped warmly in the lounge room. I cooked him a warm solid breakfast, found some stronger pain relief and put him back to bed to get some sleep while I dosed on the couch nursing my strained back. 

That was yesterday.  Today is a new day.  The sun is shining brightly and both Mark and I have had a full night's sleep.  That in itself is a miracle as we have not experienced this in weeks.  Mark's spirit is shining as bright as the sunshine outside and while his body is still physically weak, there are signs that his body is starting to improve and he is no longer in pain.  The improvements are subtle, but they are there.  It's Wednesday today, two days after seeing the Chinese doctors.  All the different practitioners we have seen have provided small pieces of insight to Mark's condition and everything is starting to fit together, like a big jigsaw puzzle.  My hope has been rekindled and I think I will leave the palliative care phone call for another day!