Tuesday, 3 March 2015

I made the best decision for me at the time.

Ever since I read , on Sunday afternoon, of the tragic passing of Jess Ainscough  , the Wellness Warrior, I have felt overwhelmed. Cancer is a bitch.

Overwhelmed more by the CONTROVERSY and debate, the judgement,the misguided and factually incorrect comments. I didn't know Jess personally and while I've read her website and knew about her choices , I did not follow them. Amongst other things she advocated a healthy lifestyle and I applaud that.

I am sorry for their loss.

Twelve months ago today, my life was shattered once again with a malignant cancer diagnosis - a much more scary one. Soft tissue sarcoma - Malignant Peripheral Nerve Sheath Tumour. MPNST.

I wondered should I weigh in with my own thoughts.
Dare I voice an opinion.
Sadly, many people with even less knowledge or experience have. Yet, there is nothing mentioned about what finally ended Jess Ainscough’s life.



I feel qualified having faced cancer twice including a rare sarcoma 12 months ago. Jess Ainscough had Epithelioid sarcoma , mine was a different type - sometimes initially with a very similar 'pathological' presentation. 

My husband also had a different malignant sarcoma too 5yrs ago.A dear blogging friend died from a horrible sarcoma too barely 8 months from diagnosis , only 2 years ago. Many knew this special lady. Based on her own research she tried Gerson therapy. Her options for more surgery, radiation and chemo were limited. We chatted about it (Gerson and other treatments) a few times. She was very informed and I respected it.

Mostly, I will refer my opinion to my own experience .Out of respect for Jess Ainscough I'm not discussing her Wellness business, or those who followed her life and story. It is a delicate issue.

I digress, twelve months ago today my life was shattered once again with a malignant cancer diagnosis - a much more scary one. Soft tissue sarcoma - Malignant Peripheral Nerve Sheath Tumour. MPNST.

Sarcomas have such a poor prognosis being a rare kind of cancer. About 1 out of 100 cases of adult cancers is soft tissue sarcoma. There is so little research and treatment options.


There are 50+ different types of sarcoma, they can be grouped into two main kinds: soft tissue sarcoma and bone sarcoma, (Osteosarcomas - Ewings included). Osteosarcomas being rarer.

My sarcoma is genetic and no amount of healthy living, juicing or coffee enemas would either prevent or cure it. Plain and simple. Ingrained into my DNA, into my genes , a fault in my stars.

Sarcoma knows no borders; ethnicity, gender, or economic status.

Sarcomas are different from the much more common carcinomas / cancers. They happen in a different kind of tissue growing in the connective tissues -- cells that connect or support other kinds of tissue in your body. They spread to lungs, brain and other organs.
More common in the muscles, tendons, cartilage, nerves, fat, and blood vessels of your arms and legs, and less so bones , sarcomas can happen anywhere - even in uterus, on genitals and within the abdominal cavity. If it is in the limbs, wide surgical amputation is recommended to ensure complete removal of cancer cells.

Sarcomas have limited treatment options, often by having surgery to remove the tumour there are debilitating side effects. I have at least two Facebook friends, with the same genetic MPNST sarcoma in their leg as I did. Both had a leg amputated , including half their pelvis and sacrum ;both have complications but still live a 'full' life , just not one they would have imagined or chosen.

Others in the group have faced amputation and radical surgery and still died; painfully. It is quite tough for doctors to come up with any suitable treatments in many cases. In the US patients are subject to approvals by insurance companies, limited by money and admission to various trials to extend life. At whatever cost or succumb.

I have complications from surgery nothing I can't cope with, and I have my leg. Though the preferred wide surgical margin was not possible because it was with < 1mm (actually 0 .8mm of my femur) margin. 10mm is the minimum recommended.

The Radiation oncologist asked my surgical oncologist could I return to surgery for a better margin ...
No , not without potentially and unnecessarily awful complications.Amputation was not an option offered.

Even my very esteemed surgeon and radiation oncologist did not agree entirely about radiation. The choice was ultimately mine. It's a balancing act - do more harm or wait and see.

A week after radiation.

I know there is nothing I wouldn't try (using my own critical thinking and beliefs) to extend my life. 
Yet, I can barely imagine having my leg amputated. I would, within reason, try every other option first. I haven't and I hope I never will face such a difficult and life changing decision.

Why didn't Jess Ainscough amputate ? 
Only Jess knows.


I have issue with one of the debates - I can't believe people suggesting and speculating that her vanity and treatment choices caused her 
"preventable death" or "unavoidable death"

Well, I know in many cases (based on my participation a world wide sarcoma support group of 2000+) maybe it would have made no difference. The unpredictability of sarcomas and the wide spectrum of how it affects a person creates uncertainty with treatment options. Yes, some people might get a few more years but at what cost. It is still their choice.

Even the Sarcoma Alliance a worldwide based group that advocates and provides information includes complimentary and alternative therapies. 

Some chemotherapy drugs came from plants or animals originally, such as from the Pacific yew tree, trabectedin from sea squirts, and doxorubicin from a bacterium.
I had both  Paclitaxel and Doxorubicin (Adriamycin) as my main Chemotherapy drugs with Breast Cancer. 

Adriamycin is also used in MPNST sarcomas. My bad, I can't have it for this , if I need it though in the future.

Her mother, Sharyn's passing with Breast Cancer too - even early diagnosis and aggressive treatment sometimes makes a SCRAP of difference.
Eminently treatable ?
I don't always believe that !

Each person's reaction to a cancer drug is different.

I can honesty say I still doubt my decisions , that I didn't had radiation for Breast Cancer (the Oncologists said it wasn't necessary) , that if even if I wanted to I can't have chemo for the sarcoma and also because I had it with Breast cancer - the complications potentially to my heart could be fatal.

So strict are they with the dosages, least they kill you with the treatment. Another (real) friend nearly died during her first chemo, it weakened her immune system so much so. She spent 2 wks in isolation in hospital and away from her children - she told me she thought she was going to die THERE without goodbyes or a chance to have a good death.

We both cried a river of tears while she described the near death experience , as we sat and talked over coffee in a cafe - not a care who was watching and they were . Happily, she is doing well now after two and half yrs.

I would always have chosen cancer drugs because it gives me hope for the future. I made the best decision for me at the time.

Maybe Sharyn Ainscough did too ! Chemo has a 10% chance of a fatal outcome.

The stats say 20 - 30% of women diagnosed with Breast cancer will die no matter what stage at diagnosis.* The survival rate with terminal diagnosis has improved with treatment to extend life but they still die.


Truth - maybe not in the first few years but they don't mention the ones who die after 5 -10 yrs. Some zealous , healthy, exercising clean living juicers live and it seems just as many as those who do nothing 'healthy' at all live too. Note: I am not advocating living unhealthily.

I have dozens of Facebook friends diagnosed with early breast Cancer , who DID all the treatment regimes, mastectomy , chemo and radiation and they still died or are terminal .

One real life friend is undergoing more aggressive chemo after in spread to her hips, other bones and now liver. Terminal and dying in just over 3yrs (under 50)

Another , dear friend with early Breast cancer over 10 yrs ago has just been given a terminal diagnosis after breast cancer metastasized to her lungs. Out of nowhere in 10 years.

Cancer is SH*T and it doesn't follow any rules. Medical intervention is sometimes worst than the natural progression of the disease - especially with sarcoma.

While, I don't disagree either with some of the debate surrounding Jess Ainscough's influence as the Wellness Warrior and promoting the Gerson therapy - it's just so very complex. 

How can we speculate whether her life and death were unnecessarily awful ? It was her journey.

* It is estimated that 20-30% of all breast cancer cases will become metastatic. [O'Shaughnessy, J. "Extending Survival with Chemotherapy in MBC" The Oncologist 2005:10]

 

Comments (35)

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I think it's tragic that Jess died so young. What I also think is tragic is that she was sucked into unproven therapies. Her choice, of course, but much more learned medical minds than mine have speculated that she may well be alive today if she had had the recommended treatment. The same goes for her mother. 20-30% of BC patients still die, as you say, but than means that 70-80% will live. I also have always found it hard to stomach the "thriving with cancer" line she used so often- even including the months of being bedridden and bleeding from tumors under her arm and so on. I followed her blog hoping she would seek real treatment before too late and hoping she'd tell all her followers to get real help if they needed it- but it wasn't to be. It's a terrible situation.
1 reply · active 523 weeks ago
Unfortunately we still have so much to learn about cancer and its treatment.

I wholeheartedly agree with your statement that cancer is S**T!
1 reply · active 523 weeks ago
You are most certainly qualified to speak from your own harrowing experience Trish, yet you do so with the utmost of respect for other people's choices. I think it is terribly sad that a 30 year old woman has died and sadder still for her father to have lost a wife and daughter within such a short space of time. If I face cancer I would like to think I'd have your open-minded attitude to treatment, listen to experts, listen to your own inner voice, your own heart. Cancer is complex and no-one has the answers - we can only be prepared to listen to all opinions.
1 reply · active 523 weeks ago
So many sad, sad stories. Yes I hope Jess's family is staying well away from the internet controversy. The only thing it seems everyone can agree on is that cancer is a bitch. X
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1 reply · active 523 weeks ago
I am a follower of Jess, and I found it completely horrendous the stuff that was put into print about her and her choices. None of us knows what we would do in the same circumstances, until we've been there, and as you say, often the treatment is a worse path than the disease. You've been there Trish and you obviously know more about it than most. Unfortunately in my business (ICU nurse) I mostly see the folks whose conventional treatments aren't going so well. I have no idea what I would do.
1 reply · active 523 weeks ago
Thank you for sharing your experience lovely. I can only imagine what you have been through and are still fighting through. Cancer is a bitch indeed. I feel so angry every time I hear of another person I am connected to that has been diagnosed or lost someone.

With regards to Jess I think the key point being made that I do support is the issue of how she promoted herself as well and thriving and based it on her natural approach. I do think when you are making money off of people and putting your story out in a book etc you have a responsibility to be honest (so reveal that no you are not thriving at all and it is a battle- which is something I think most of us would have expected anyway) and to be careful about what you encourage for others.

It is all a tragedy and as said I do hope her father is staying away from the online discussions and focusing on his own grief and healing.

Love to you.
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1 reply · active 523 weeks ago
Just finished two cycles of brutal chemo for my sarcoma .My oncologist has called a halt to it as the risks were outweighing any benefits it was having . Weight dropped from 60 kilos to 51 kilos in 6 weeks and I didnt have the strength to fight . I cried with relief at not having to start the next cycle .I am now going on to clinical trials with radiation being kept for another time. Once my options with conventional medicine are exhausted I will certainly look in to other options .I am lucky to be treated by a sarcoma team but wish we had some of the options available to us like medical Marijuana to help with chemo side effects . I find the Usa sites on sarcoma people are more knowledgeable than I am about treatment options. Not sure why Sarcoma is so rare when there are so many of us with different forms of it. Ultimately we all have the right to decide when and what treatment we have but we need to be more informed. Best of luck with your treatment x
1 reply · active 523 weeks ago
I read about Jess on Sunday. It was the first I'd heard of her. You are so right people should remain respectfully silent about her choices especially when they aren't qualified or know the entire story. My friend was diagnosed with ovarian cancer and she told me when she was in having chemo the nurses said to her," Why are you here? You should be out enjoying the rest of the time you have?" So that's the other side of the coin I guess. My friend probably gained another 12 months on the time she had left. It was what she wanted to do. No one else has a right to interfere.
Frankly, I think you are one of the bravest people I've had the privilege to meet online Trish. You've made excellent points here and if anyone has a right to comment at all it's you. Personally, if it happened to me I'd be gung ho about any drug I could get my hands on. But that's me. And if it really happened I might think differently. I don't think anyone knows until they're actually there. Stay well darling girl x
1 reply · active 523 weeks ago
Oh Trish - it makes me so sad that you have faced cancer twice! How bloody terrifying it must be! Look how knowledgeable you are about all the terminology and treatments. It has become your world without your choice! So many friends made, and so many lost. I followed Jess on Instagram. I admit - I never knew she followed Gersen Therapy and I knew nothing of this therapy. I just saw a young girl who was passionate about healthy living and nutrition. I was aware of the book she wrote 'make peace with your plate'. I knew there was cancer in her past but not what kind or its current status. SO....I was shocked when i heard she had passed away and even more saddened over all the debates I've been seeing on the web and in social media. No-one has a right to judge her choices because no-one but her and those very close to her know what her choices actually were!! I feel so sad for her father and her partner (who she was due to marry this year). Cancer is a bitch for sure. Wishing you healthy and well days ahead Trish. Min xo
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1 reply · active 523 weeks ago
Trish, thank you for sharing and for being the voice of reason. I think it's really hard to rationalise and judge what's right and wrong when faced with a cancer diagnosis. Cancer is a total bitch and an unpredictable one at that. At the end of the day, I think each patient has to make the call and decide what's right for them, and make the choice that's going to bring them the best quality of life, however long that may be. I don't think anyone can make such a choice until it happens to them. Hell, I had radiation so high I spent 3 days in isolation and still had a high reading on a Geiger counter. I remember the doctor warning me of the dangers of being so radioactive. Apparently I could die from the radiation, but so be it, I was damned if I was going to let cancer get to me first. Would I get my radioactive on again? You betcha! I'll do whatever it takes to keep cancer at bay. It's my body, I want to live in it for as long as possible and how I'm going to do that will be my choice. I think anyone who stares cancer in the face and tries to kick it to the curb, (however they choose to do it,) deserves respect and empathy whether they win their battle or not.
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1 reply · active 523 weeks ago
I didn't know of Jess until her death and it's a really sad story. I think the tough bit is that a young woman made decisions that possible led to her to live with pain and suffering and then to die an early death. That was her choice, and one she made with all the knowledge she could gain. I respect the choice she made, because treatment is also no spring picnic. But I still think it is such a waste of what might have been.
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1 reply · active 523 weeks ago
Thankyou for sharing your common sense and your knowledge. I followed Jess and I purchased her book which is a very good read. I took on board what resonated with me and what didn't I just let slide. You are so right... we can only do what we think is best at the time and that's the only thing Jess was guilty of. I was hospitalised 3 times out of my 4 rounds of chemo for breast cancer. My white blood cell count became non existant and had temps of 38+. I was scared out of my wits each time. By the time chemo had finished with me I weighed only 39 kilos and was exhausted on every level of my being. After each round I'd say no more, I'm not having that toxic shit again. But of course I did. Would I do it again if I had too? Hopefully I never have to make that decision because I really don't know if I would. May we all have faith in ourselves to trust that we can only do what we think is best at the time and be okay with that in the long run. Much respect to you Trish. Xx
1 reply · active 523 weeks ago
Hey Trish, I sort of followed Jess on social media but had no idea she was near death this past year. I have had many friends and family who have fought against cancer. Most have sought traditional medical treatment and used alternative therapies eg. Chinese medicine, juices, vitamins as a way to support their immune systems throughout the course of their disease. On one hand I can see why people are so upset about Jess's choices in treatment, on the other hand, Jess was an adult and it was her choice to choose the therapy she saw best for her. Yes, it is a waste as Jess was so young and I probably would have chosen a different medical treatment if it happened to me but terminal cancer is bitch, and a waste no matter how old you are. Again you astound me with your strength and outlook on life, and respect for others going through similar cancer treatments as yourself. Stay strong Trish xx
1 reply · active 523 weeks ago
Oh man. This is confronting ...
As you know we're on this sarcoma journey with Chelsea right now and you've been such a great help for us.
But seeing it all in the written word is hard.
I don't think there is a right nor wrong ... just personal choice. I know that can be hard for family and friends and those "left behind", but when it comes right down to it, the journey is theirs to take.
I may of course change my tune in a year or two as we continue holding Chelsea's hand on her journey ...
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1 reply · active 523 weeks ago
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Ever-changing Mum · 523 weeks ago

Thank you so much for sharing your story. Cancer has touched my family too many times to mention - while there have been some victories, sadly too often it has not been the case. It's a horrible horrible disease that I wouldn't wish upon my worst enemy. While I think it is an individual's choice as to how they wish to fight cancer, you seem to have much strength and a positive outlook which I think goes a long way towards winning the battle in conjunction with modern medicine and treatments. Wishing you health and happiness x
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Having lost so many family members to cancer,this is so sad to read. We can only do what we feel is the best at that time.
I know you chose what was best for you.

Sending love
I didn't read about Jess, but I had no idea how serious yours was. Sorry Trish. I mean I knew it wasn't good, but I had no idea. Thank you for sharing your story. I'm so grateful God has brought you through this, and pray he continues to do so. xx
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Absolutely agree with you on some many levels here Trish. I remember when my sister passed away after a 15 month battle with tongue cancer I went through a lot of the stages of grief, and there were times I recall (embarrassingly now) thinking how I wished she'd fought harder, that she wasn't trying hard enough to beat it, that she should get up and go for a walk or do something....and then I realised that I had no right to judge her and how she managed what she was going through as, although I was sitting right beside her for a lot of that time I no real knowledge of what she was going through!
I don't believe anyone has the right to make comment or judgement on how people with any illness chose to manage it.
Take care and all the very best for everything that you and your family are facing...
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Cancer is a bitch. But, I'm also deeply deeply impressed by the research and results gained by the passionate and dedicated medical researchers. To know that people can survive mesothelioma, the cancer my father died of 20 years ago. Back then there wasn't really much hope, but now there is. My friend's mother is in remission after a whole lot of chemo. I also think it's wonderful that there is a big wellness drive, because the more fronts we can fight cancer on the better.
Any way you look at it, Trish, it's a total bitch. It's unfair that you have to face this shit and unfair that Jess lost the battle. If ever we start to get complacent about health and cancer, your story should serve as a reminder to keep fighting. Keep researching, keep fighting to know the cause and the cure. x
I don't even know what to say after reading this. I feel honoured somehow, that without even knowing you personally, you shared your story with me. I've had so many friends and family members with cancer. Some beat the bastard, others fought as hard as they could but as one them mentioned, "didn't have a big enough stick to beat it with". No matter what anyone tells you, you fight. You fight with everything you have. Whatever approach you chose to go with to fight the bastard, you fight as hard as you can. Sending you much light and strength x

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