Geoff Nyssen

Post Stem Cell Transplant No. 3 – Update 6

Hello my healing team,

I hope this update finds you well.

Straight up, I am feeling frustrated. Held back. Limited. Quarantined. Damaged. Sore. I often feel as though I can’t take a win and it takes its toll on me.

I started the month feeling good. Everything was under control and generally heading in the right direction.  I was set to take a trip with my bro to China.  I was content in my space.

Frustration 1 – I had a meeting with the Nutty Professor last week to get some results.  Dan’s cells are coming up slowly, rising from 72 to 75%. Ok. Good.  The cancer is creeping back, increasing from 0.6 to 0.9%.  Crap.  It’s a mixed report that delivers mixed feelings. I just cannot have this Stem Cell Transplant not work.  It not working means that I am two strikes down!!  Not only does that suck……it is a little scary too!!  We have to banish the cancer!!

Frustration 2 – At Easter, I strained my foot, aggravating a past injury. After hobbling around for a few months waiting for it to settle down, X-rays show I have broken a bone in my foot and now have suck up the pain and inconvenience to wear a moon boot for the next month. Arrgghhh.  Surgery will need to follow at some point but I need to wait for my Myeloma to sort itself out first. I can’t afford to divert my healing from my cancer.

Frustration 1 + 2 = 3 – i can’t go to China,  I cant run or ride, I hobble when I walk, I am often in pain, my cancer is coming back, my SCT hasn’t worked yet to combat the cancer, the cancer stops me from living a normal life in that I haven’t worked for a long time, I often cannot do and miss out on things I want to do and I sometimes struggle with motivation doing enough purposeful things to keep the demons in my head quiet.

AARRRGGGHHHHHHH

It all just gives me the shits………. oh and the side effects that I do have from the stem cell transplant effects my digestive tract so I literally have the shits!!  AAARRRGGHHH.  It is so frikkin frustrating.

So.  What to do?????

Gratitude – I am grateful to be alive. I have an amazing family. My friends are there for me.  I reflect and smile because of the great aspects of my life.

Purpose – I go to the pillars of happiness tool. I look at where I am now, identify things I can work towards that will make me (and my family) happy and I start walking in that direction.

F$&k you cancer – in spite of my cancer setbacks and my broken foot, I start (re) planning a trip to China.

Onwards and Upwards.

Take care

Geoff

Post Stem Cell Transplant No. 3 – Update 5

Hello my healing team,

It’s been a while my friends.  I have missed you!!  I hope this update finds you well.

You may remember from my last update that I find myself in a state of cancer limbo.  In January, I wrote how my Allo Stem Cell Transplant was incomplete with my immune system remaining as 45% mine, and 55% my brother Dan’s.  The challenge with this is that with these percentages, my immune system won’t fight cancer.  This is a real concern because the cancer is now coming back.  It was 0.1% and has recently increased to 0.6%.  Not a big increase, but it’s going in the wrong direction and scary all the same. This was further compounded by the news that the percentage of Dan’s cells started slipping. It went to 50% 😳.

What sucks about my cancer is that I rarely get good news about it.  My experience is that I go through gruelling treatment, I get a short period of good news that my cancer has been kicked, then it’s all tough news from there as I watch the cancer re-establish itself, growing like mould in a shower that never gets cleaned, or rather, cannot be cleaned. Mentally, it’s a tough gig. To manage, I look to the little wins for some reprieve. RecentIy, I have had a little win.

It seems that Dan’s cells have turned around and are now at 70%.  Wooo hooo!!  I sit here with my fingers crossed hoping that it will get to 100% and start attacking that wretched mouldy cancer.  For the first time in a while, I am excited!!  I will have another test in a few weeks time to hopefully see it continue to rise.

While there is a lot of effort behind the scenes, hope is what I hang onto. I hope my immune system becomes 100% Dan’s. I hope this new immune system attacks the cancer. I hope that my cancer goes into long term remission. I hope that a cure is found for myeloma (and all cancers).  ‘Hope’ better pull up its socks and step up soon!!

Take care

Geoff

 

Stem Cell Transplant No. 3 – Update 4

 Hello my healing team,

I hope this update finds you well!!

With the new year in our rear vision mirror, and my 44th birthday now in the bag, there has been some time for reflection. When I think back to January 2017, I was excited, but I was hugely daunted. Daunted by the huge program of treatment that I was going to have o endure, daunted by the horrible stats associated with that treatment, and daunted by the fact that my family had to endure this with me.  

In 2017, during my most vulnerable of times, I found that I was full of fear, scared that I might fail, with the worst case scenario being death. The fear seemed very real with the passing of a few good friends who also carried the burden of cancer at a young age.  Now in 2018, I realise that 2017 was about proving to myself that I could face my challenges, stare them down, endure and make it to 2018 and beyond.  Now that we are in 2018, this year is about ‘Being Better’. 

On Monday of last week, I received my latest test results. My cancer is at very low levels. Woo hoo!!  However, my Allo Stem Cell Transplant is still incomplete as my immune system remains as 45% mine, and 55% my brother Dan’s.  I need it to be 100% Dan’s, otherwise it would be considered a failed procedure. So today, I will receive another ‘top up’ of cells, hoping to push my immune system over the hump in the road, and onto that 100% target whereby it can then start attacking that fucking cancer!!  I need my immune system to realise that it is now 2018, and it’s time to Be Better.

By focusing on Being Better, it enables me to look at all aspects of my life.  I reflect on the ‘Pillars of Happiness’ in my life. Those including my relationships (esp. with Sarah and my kids), my work, my finances, family and friends, charity and giving, fun and fulfilment, and of course my well-being.  I draw a line under where I am now and I think about how I want to improve these aspects of my life through 2018. How can I Be Better. In some of my Pillars, I have big improvements to strive for, others only require slight tweaking, and yet others I realise that I have very little influence over.  

2017 taught me that with love and support, I can overcome some pretty big challenges. However, I learnt that once you have done the hard work, you stop, reflect, take a deep breath, then prepare for the next challenge. Prepare by striving to Be Better!! 

Take care

Geoff

Stem Cell Transplant No. 3 – Update 3

Hello my healing team,

I hope this update finds you well.

Things for me are going quite well. Whilst I experience fatigue that slows me down, I am starting to feel more normal with the effects of the transplant radiation and chemotherapy fading. I have now started doing ‘normal’ things like yoga and swimming to build up my strength, visiting wineries to build up my good gut bacteria, and attending the AFL grand final for mental dexterity and strength. Actually, I am still shocked that my beloved Tigers are 2017 premiers!!

I am extremely fortunate that I feel quite well as I seem to have dodged the nasty symptoms associated with my recent Allo Stem Cell Transplant. Those symptoms are caused by Graft Vs Host disease which occurs when my brothers (legend Dan’s) introduced immune system comes into my body, recognises my body as foreign and attacks my organs. My research suggested that a bit of this was to be expected and ok, and that it was an indication that the introduced immune system was active and ready to kill cancer. However, too much is not good as it can lead to death.

Whilst I have dodged nearly all symptoms, I am suffering from a bad case of pubic-hair-itis. Dan always had really curly hair. It now seems that as well as Dan’s immune system, I also have his tight curly hair. I have never had curly hair in the past. At guess I should be thankful that it didn’t turn into red curly hair (not that there is anything wrong with that – as they say red hair is back in vogue).

I am now four months post transplant and I still have not experienced symptoms. It seems the reason for this is that the Stem Cell Transplant has not fully engrafted. For months, Dan’s immune system (or bone marrow) sat at 55% with my old immune system remaining at 45%. Ideally I need to have Dan’s immune system at 100%. Annoyingly, in the last month my immune system is fighting back, with Dans slipping away, and we are now 50% – 50%. Its a little like the the sibling rivalry Dan and I experienced as kids with me having to beat Dan up when he got a little ahead of himself . Dan has had the last laugh though as I now cruise arund with an Afro.

With Dan’s immune system slipping back, it will struggle to attack the cancer and is an indicator that the Stem Cell Transplant is failing. Massive bummer. In my pursuit to live to 80, the last thing I need is a failed Allo Stem Cell Transplant. In an attempt to turn the tide, I am having a Donor Lymphocyte Infusion (i.e – more of Dans cells put in). The hope is that the top up will initiate the turn around to get Dan’s immune system to 100% so that Dan and I can collectively kick some cancer butt!!

Today, I sit here in hope, but also feeling a little conflicted. Whilst I hope that Dan’s immune system picks up, I am hoping equally as much that my hair doesn’t get any curlier. Wish me luck.

Take care

Geoff

Stem Cell Transplant No. 3 – Update 2

Hello my healing team,

I hope this update finds you well!!

All things considered, so far, my Allo Stem Cell Transplant (SCT) has gone really well. Aside from a few complaints, i feel good and have come through relatively unscathed. However, given my immune system is quite new, it is proving to be fragile. On a Monday, just a few weeks ago, I found myself explaining to my specialist, the Nutty Professor, that ‘I was back’ and that my immune system was bulletproof. Then on the Tuesday I checked into hospital having caught Influenza A!! Fear not…. I was out after a few days. A month later and I found myself incarcerated within those hospital walls again, this time with Influenza B. I guess I am only bulletproof most of the time.  Even super heroes take a day off!!

What I find hardest about being locked away (albeit for my own good) is the solitary confinement with several days spent occupying a room where my best conversation is the echo of my own voice off the walls around me!!  Whilst I do like the sound of my own voice, I now know that you can have too much of a good thing!!  I guess I now have more motivation to stay infection free and out of hospital.

With time to contemplate whilst incarcerated I did start thinking about the stories you would hear if only the hospital walls could talk.  For one such story, late one night I was moved into a room with a really nice view out of the window. Whilst I felt fortunate to have the view, ever curious, I asked the nurse a naive question…. “How is it that a room becomes available so late at night??”.  The reply was short…. “A space becomes available late at night when the previous occupant doesn’t walk out” 😳😬.  I wish I hadn’t asked!!  I started to feel that hospital was quite a grim place to be, but on reflection, so much more occurs that is not really considered.

Hospitals are a dynamic place. A few things that occurred to me whilst incarcerated include;

• there must be an express portal to heaven from hospital, and maybe one to hell also.
• With all of the babies born, there has to be a Stork landing pad!
• So many tissues would get used, many for sorrow, but lots to wipe away tears of joy also!!
• More people walk out of hospital in a better condition than when they were wheeled in!!
• A ridiculous amount of perfectly good food is unceremoniously damaged as it is cooked and served on a daily basis.
• Careers are forged for so many awesome people who research, treat, care, test, diagnose, support, clean, cook, assist, transport etc.
• A code grey announcement means someone is going troppo and security is needed ASAP.  This mainly happens in the Emergency Department.
• A MET Call announcement is a medical emergency!!  You don’t want that call in your room while you are occupying it!!
• Pain causes much anxiety and stress, but i have found that it can be improved significantly with morphine 😝
• Nurses are meant to take your ‘Obs’ (blood pressure, temp and blood oxygen level) every three hours. This is a welcome interaction during the day, not so much in the middle of the night.
• Nurses (and ambo’s) are the most underrated and wonderful people!!
• In considering hospitals, whilst death does occur, they are so much more about life and living.

As I sit hear today, I have spent the day in hospital having just had a heap of testing done to work out how effective my Stem Cell Transplant has been. When the results roll in I will learn whether my bone marrow is more Daniel or more Geoff.  I will also learn whether the new stem cells have been effective in smashing my cancer to oblivion. So whilst waiting for my results, I feel that a hospital is a place of HOPE.  A place where sustained hope, a whole lot of hard work and a good dose of luck will propel me to my 80s.

Take care

Geoff