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