A diner to remember
So to have close caring friends is the greatest gift one can have in this life. Last night after dinner at their house, some close friends mentioned they are not coming back to our home, as they got flees last time they visited , they had to bomb the car and they felt digusted by what they saw. I was silent and sad, of course I know the truth of their comments, I have had countless similar discussions with ellie over the years. I have come home and the house was really bad this time.
Ellie says she loves and cares for the children, but these are just her words, the advantage for me having cancer and having treatment in germany is that responsibilty for the house falls onto ellie. somehow she still blames me for this or that, but all the garbage in the house is 100% hers. she has had 10 months now to fix the house since the school principle came over.
Without any prompting our friends said point blank they will call in DOCS, the department of youth and community services. My beautiful , kind friends, have some hope ellie will respond to their threats, I feel hopeless that she will not change. After all, all the counselling sessions, then I have made all the threats before, for the last 10 years. its the real reason why I got my cancer and its why I dread coming home. so many voilent fights over rubbish. ok my indulgent lifestyle, my escapism and the extra 60 kilograms was my way of coping being married to the worlds best hoarder. how lucky am I, are the kids. she has no awareness of her illness. I just don't give up and am faithful, but to see hope in this situation takes effort. but I can see a clean home, my imagination is powerful, possibly delusional. maybe some delusion or allusion is necessary in this life!
Ellie does not see the harm being done to the children, what they are missing out on. Noone comes to the home, she wants to hide her illness, she cuts off friends, she has become a recluse in many ways, her illness dominates her life. so I am supposed to flying back to germany in two weeks and my wonderful beautiful children are living in shit and I really am unsure what to do.
Calling DOCS, having the children removed from her custody, which would happen the second they walk into the home. So I am caught, as I see that despite my wifes haording she is a loving caring mother except for her chaos and mental dysfunction in regard to hoarding. the children are fed, they are dressed, they get to school, melanie got confirmed. they to the doctors when needed. her care is a net positive, but the hoarding is challenging.
I really dont know what to do! I feel trapped, I cannot take my energy away from my own battle for survival, which I am barely holding my own on. the latest recurrence 2, proof of how vulnerable that is. the energy and time I have is still devouted largely to healing and curing, especially given how dysfunctional ellie has become.
the cars ignition is broken, the lights in the kitchen and up stairs don't work. At times when I am overwhelmed, like I feel now, I always say GOD HELP US ? I am sure he will. My illness has not helped my wifes condition, its made it far worse. that said we still have boxes of rubbish from pyrmont 4 homes ago, that have not been opened for 10 years. so much useless rubbish.
maybe ellie needs to hit rock bottom, maybe loosing the custody of the children, for a temporary time, will motivate her to clean the family home, but I doubt it. she says she loves me, but still cannot give me a home to live and heal in. I recently put my suitcases down, full of wonderful german medicines, onto of rubbish and boxes. luckily today I am going to my neighbour a doctor who offered to help me if I ever needed it, well I hope to have the infusions today from germany today on his balcony looking at the bay. where their is a will they is a way.
I am thinking of my favourite song, look for the silver lining! out of these challenges will come something better I pray. Personally I would rather be dealing with my cancer and than hoarding. not that I have a choice. I have made a deliberate choice to leave the children with ellie, I take ownership of that, I discussed the kids mental wellbeing with a few counsellors, its clear they have enough trauma with my cancer treatments, for them to loose their mother due to her hoarding is just to heart breaking. but thats a possibility. If I had seen any sign of improvement in ellie and the home I would be overjoyed. but the kids warned me on the way home, the home is bad. nowonder they wanted too stay in germany with me.
now the option I have treatments in sydney that could really help, well in some senses that is negative, as here my life is surrounded by ellies chaos, my little apartment in germany is so peaceful.
its early, I will exercise, meditate and find peace. Its a wonderful skill, I commend it to all who have challenges, I get the best ideas and inspiration after meditating.
its early, I will exercise, meditate and find peace. Its a wonderful skill, I commend it to all who have challenges, I get the best ideas and inspiration after meditating.
how do I help my kids, my wife and try and stay alive. life always dishes up incredible challenges, in them our greatest opportunities. it does take some courage and wisdom to make the right choices. If you are reading pray for us, we need it today. Off to church to the school community 10am and then other friends for lunch.
Another nice co-incidence
I was running on the beach, doing HIT, sprints and some pushups with the dogs. I saw a lady and some kids. she was training also. she to started sprinting along a similar path. we started talking, she was a world champion water skiier, I was a cancer dad. we did some sprints together, it was good for my heart, the pounding. I love that comletely excerted feeling. I know I am alive when that heart pounds. she said not bad for someone with cancer. i took that as a compliment.
she was in the word championships at 19 and 21 and then had a family and life, she won them 20 years later and overcame a challenging marriage and other obstactles. simply she had a passion and a dream and she achieved greatness. I wish some of her spirit could rub off on my wife, or my spirit. this lady, her name is leane, we have a mutual friend whose son is one of my sons best friends. alas ellie will not let this nice kid in the house anymore as she is to embarrassed.
well leane and I talked a little bit between runs, I wanted to record the ideas briefly. she is writing her story, her auto biography. we reflected on inspiration and dreams, I had the idea that its easier for cancer patients to identify with sporting success than it is treatment success. I had the idea to turn cancer into a sport. would you like a game of cancer, a game of tennis or golf. I like golf because its got different clubs. the clubs remind me of treatments. of course we have different courses, you can have a coach. the mental aspects of sports success and treatment success we touched on, its clear focus and visualisation are key.
we discussed how important early on it is to nuture the surviving instinct, which is my greatest complaint of conservative patient forums, where do the status quo rules. just like an upcoming world champion needs a super caring coach to give that person the best chance of achieving their sporting potential, and hopefully gold.
maybe someday soon, all cancer patients will have a healing coach, whose main goal is to keep hope and joy alive, while we live in a society and medical system determine to squash hope, joy and faith like a bug under a big boot. this is a job I could do easily, and well I think. but I have to live, I have to find a way through this dam challenging curse and my wife hoarding as well.
so to me, an olypmic gold medal is what I give myself every morning, I wake and breathe and say thank you God another breathe , another day. will we make our world a better place today, will we smile and spread a little kindness and joy. well I will, and I hope you do as well.
As I type this , I am aware of my breathing, I look around the home and see garbage. I see opportunities in life challenges, I thank my god for these challenges. No matter what the future brings I have the utmost faith in life, another day will dawn, bringing its challenges personally and for humanity. My kids know that mum and dad love them, that we have our challenges each of us. they have learnt that its whats in your heart that counts, not whats in your house. so we are certainly not superficial in that sense. ironically mums hoarding has taught the kids and our friends the importance of being loving and caring and genuine. the best lessons in life, somewhere down the list comes cleaning your room, but smiling well thats on the top of the list. my kids smile alot, I have done my job, they are joyful wonderous creatures, no matter what my fate they will prevail, and in them I will never fail.
another dear ladies husband has passed on CSN, the stakes are clear to me in my management of this illness leaves no room for mistakes. whats inconveable to my conservative friends who are waiting for death, well its my delusional hope that I am cured and that I fight so hard. It kind of reflect poorly on them, I see posts like"am I doing enough", I did not answer on the forum, but here the answer is simple. yes what you have done is enough, what you do today to pursue health and healing well that may be more involved. whatever you do has to be guided byy your inner compass. if you are not living joyfully, well thats something to fix.
so as I finish my blog, I look around the lounge room, I can see a clean and orderly room, I have faith and thank god for my challenges and our dearest friends. Of to church in a few hours, it cannot hurt to ask for help at church. the trayhurn need plenty of miracles. and we all know god does not grant miracles unless you ask nicely, well I will be doing that today.
I know so many friends, each of them fighting their cancer and or their challenges so bravely, if you see anything inspiring in my blog, think of my inspirational friends who have the courage of lions.
Suggestions for an aussie friend, they might be for you one day, excuse the french
i dont know if I should stay here and do p2x7 targeted chemo and liver spot rfa ? as these are options for free and not that ineffective, well I am considering them. as soon as I am finished I can come to duderstadt. I need to get an answer from borodie asap about the sydney trial.the idea of using targetted chemo, in conjunction with targettd aggressive immunotherapies, thats exciting.
so I have all the hallwang supportive infusions here.
I am thinking of a couple of insulin potentiated chemos, first on thursday so very low dose systemic chemo alongside HT with greg in tassy on friday. I could get my onc to write s script to do this is tassy. still plenty of balls in the air and I have a headache.
for me the clear strategy is to have immunotherapies, lined up directly post targeted chemo. I still have not fixed the visa issue up yet.
how is your liver going ? can you do nesslehuts big chemo job on the liver, I still thought that was your best bet, you know debulk, debulk , debulk ?
the limitations and benefits of our white cells, well you have seen my story, use it, apply the lessons to your clinical management. no one will care for you , the way you will.
all my love and care pete. just dont fuck around and delay, this illness is a relentless bitch, push your biology between healing and treatment as aggressively as you can, if therapies aint getting results, ditch them and and keep on trying.
if your interested, I will get you into professor morris, the hipec guru here. he may play a place on your curative path! if germany does not get you there.
my concern for you, is that the immunotherapies, may not get you all the way, that you may deplete your immune system like me. its likely as I had less disease going in. when you immune system stops controlling well you are in trouble, as I am.
so the story is , get the best out of germany, and australia. I have opened a surgical pathway, for me, and also possibly for you and others. I think aussie surgoens like having exceptionally health cancer patients with minimal disease. we give them a chance to shine, show off their skill, we likely keep their stats up as well. they don't need to be operating on chemo ravaged, completely lifeless corpses. the 1-2% hipec mortality risk has to be dependent on
getting the vogels is a really good strategy, do you have shrinkage, is it effective, what number are you up to 3 or 4 or 5. the more the better, doing vogel in tandem with vaccine essential. doing hallwang style infusions post vogl essential also. vogl is still chemo to your liver.
more thoughts my dear friend................
we will be the smartest patients on the planet, we already are, noone really knows but you,
my tip just play hard, but try and have some fun along the way. so still took to long getting to germany, have you got a strategy for getting rid of your disease ? for deblking, I have the impression you are in limbo and that vogl is doing all the heavy lifting. he maybe be enough.
I want to do my targetted and systemic chemos and then be on a plane on the 17th for duderstadt, and then have a post gamma delta vogl 1st. july so really getting all the sydney therapies in this window is essential. 2 weeks and counting for me.
did you get you port out yet ? did hallwang take ownership ? did they offer a credit, get the hospital stuff done in duderstadt, or gottingham, doc N can organise it. they did a good job on me.