Tuesday, 25 March 2014

Cancer is a bitch Chronicles - MPNST update.


Yesterday, I flew to Sydney to get another opinion from another professional about MPNST. Malignant Peripheral Nerve Sheath tumour.

What do they have in store for me today ? 

I wondered over and over.
The in/out bound flight was a bit unsettling, the weather was diabolical and you couldn't see anything for the clouds. No silver linings on the horizon.

Some Sydney areas had their heaviest daily rainfall total in over a year, recorded in just under an hour - experiencing significant flash flooding . I was fortunate I allowed extra time because I couldn't leave the train station for 45 mins. I was quite stressed about being on time. The rain was torrential*.

Optimism Index:
Mixed emotions, moderate anxiety with a chance of scattered bursts of sad.

Luckily, I had brought the black not pink umbrella and one that was easy to transport.

So I had to “go for it” and tough the rain. As I walked to the hospital, the rain seemed to get worse again, water seeping into my boots , juggling my bag and suitcase. There was little time to dance in the rain.



As it was, I had to wait an hour before I could see Senior Registrar. Then another lonely wait while they reviewed my scans etc and then finally I saw The Radiation Oncologist . After consultation with the Sarcoma team , a multi-disciplinary range of specialist doctors, committed to the fight cancer metes out - she agrees I do need radiotherapy to my thigh - to help prevent recurrence. Since further surgery to my thigh to obtain clean margins (2-5cm of normal tissue) is not viable - it would be catastrophic or result in extensive rehabilitation.

Dr S was confident the local Radiation Centre and Oncologist  (2hrs away) could prescribe and coordinate the course of my radiotherapy  treatment - a bit closer to home. She will support me on an ongoing basis and book me for PET scans as necessary. (As she has done my husband for 4 years).

The other areas of concern , the equivocal neck lesion and my 5mm lung nodules they can't decide a treatment plan for until scans show changes or growth or rule them out. The nodules are just too small (need to be 1cm=10mm) and the lesion is in a tricky location to biopsy. She felt to involve more doctors at this stage was impractical ? unnecessary. I am just not 100% sure.

I must pray hard relax and just accept things in the interim and try not to worry. I will have a PET scan in 3 months and a chest CT

So - I wait till next Tuesday to know what happens next. I have met the local Radiation Oncologist and he was a nice fellow. Getting my treatment plan going may take a few weeks.

I'm not terrified of the radiation only the logistics of being away from my family; the emotional and financial burden for 5-6 wks. I will most likely be away 4-5 days a week because driving 4-5hrs round trip each day plus appointment & waiting time- will be difficult and more physically demanding not to mention the vehicular fuel thirst.

I only know what radiation feels like from my husband. Vastly different than after they inject toxic chemicals into the body ; thankfully chemo was not recommended. That is one less huge worry.

The flight home was delayed 2 hrs due to the severe storms. It was a turbulent, unpleasant ride, in a too small plane (40 seats ?), at night - no wonder they gave free whine wine. I was never so glad to touch down at around 10pm.

*Put those figures into perspective,  rainfall rates in excess of five mm in 10 minutes can be enough for flash flooding...I saw the news later -cars floating down the street (not where I was).

I still love this song...it blew my mind with the rain and all.

Cause what if Your blessings come through raindrops
What if Your healing comes through tears?
What if a thousand sleepless nights
Are what it takes to know You're near?
What if trials of this life
Are Your mercies in disguise?


I am still praying for healing and will seek it out...as well as a pink umbrella. I just found out Daiso sells them.

 

 

Comments (40)

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what a day. hope you are bit less stressed today. all the best Trish wishing and hope you find healing xx
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1 reply · active 572 weeks ago
Trish we will all be here with you for any journey you need to take to get that healing happening ASAP!!!!! xx
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1 reply · active 572 weeks ago
Oh, my thoughts are with you. I've been through nothing like it but my parents stayed in Brisbane while my father had radiotherapy for 5 weeks one Christmas. I was always amazed at how fast the treatment was and the hospital staff we saw in Brisbane were fabulous. They scheduled him night appointments so my brother or I could drive them each night.

Hopefully once you have your treatment plan things will feel more manageable. xxx

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1 reply · active 572 weeks ago
So it's sort of a mixture of answers then isn't it - I feel for you having to spend so much time away from your family which you are going through so much. Wonder if any can be timed with school holidays so for a few weeks the boys can be where you are? UGH. Not having a treatment plan for neck lesion etc must be unnerving but like you say, there's not much you can do about it. Thinking of you and one foot after the other and LOTS of snuggles from your boys, all of them, xx
1 reply · active 572 weeks ago
All the travel, the logistics, it can be so hard to be away and on your own during these times, but the reality is, it just must be done. I hope that you can spend time with your boys during your treatment too.

Are there some organisations that will assist with the driving, even if just one day a week you could get a driver to take you to and from the treatment - remember to ask around and see if anyone feels like a day out!
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1 reply · active 572 weeks ago
Oh Trish, what a trip in such horrible conditions.I hope you can find a way to not be away from home for too long while undergoing treatment - good luck with the road ahead x
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1 reply · active 572 weeks ago
Trish - hugs to you and the journey ahead. So glad you have such a lovely friend (above). I hadn't even heard about the weather down there...
1 reply · active 572 weeks ago
A plan is good hey? Hope they get the ball rolling soon! Thinking of you often xx
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1 reply · active 572 weeks ago
Are there no radiation facilities closer to your home, and does the hospital have agreements with nearby hotels for you to stay at?
1 reply · active 572 weeks ago
DeepFriedFruit's avatar

DeepFriedFruit · 572 weeks ago

I love how you are talking us through your process. I'm not sure if it helps you at all ... but it definitely helps me to see what's involved and the enormity of it all. Thanks so much for sharing.
The rain seemed somewhat appropriate.
Lots of hope, prayers, positive thoughts and virtual hugs.
L
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1 reply · active 572 weeks ago
What a stressful day Trish :( Sorry to hear that you need radiation therapy. Although I am not in Sydney, I am in Wollongong and if you or your family need somewhere to sleep or stay during your treatment, even a few days holiday, you are welcome to stay with us. Huge hugs to you, you are inspiration!
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1 reply · active 572 weeks ago
Glad you got home safely, despite the rain. That song really seems like God's way of showing you that He is with you. All the best, Trish. Praying for you.
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1 reply · active 572 weeks ago
Goodness, what a big day.Sorry you didn't have company during those big waits. Praying for healing for you too.
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1 reply · active 572 weeks ago
I think there are many of us out here wishing the best for you. I can only imagine that that would create quite the energy buzz and get your wishes heard.
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You are so strong! I hope so much for you that this resolves and you can have some peace. Boy you have tenacity, Ive been reading through your blog and I am in awe. xxxx
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I hope the treatment is successful Trish. I'll be thinking of you.
I was thinking of you yesterday. You must have nerves of steel flying in a teeny plane in that weather. It's so hard not having all the answers, isn't it? When I was diagnosed, I equated knowledge with power. The waiting is the worst bit, isn't it? Still on the plus side, you did get some answers and you can start to take positive action with treatment. Sounds like you are in safe hands That's all good. If you want some company on your next Sydney side appointment, give me a shout xx
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Oh Trish what an unimaginable rollercoaster of a day for you! I'm sorry that radiation is the answer and that it means so much disruption to your live with geography and travelling, but I'm glad that it is there as an option and I hope it is an overwhelming success in smashing the MPNST. Keeping you in our prayers xx
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Lydia C. Lee · 572 weeks ago

Stay strong and I'm glad you have a treatment plan to work with. As for the rain, that would have been a hideous day to do all that (and fly). At least you have the cars floating down street footage to validate the crapiness of it all!
It's such a bull shit disease and to manage the costs living away from a treatment centre is so hard. This is just crap Trish xo
Oh Trish I am thinking of you. You are a very brave woman! xxx
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What an overwhelming, draining and exhausting day. Sending you lots of positive energy, good vibes and heart felt prayers xx
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I've heard it said that rain on a wedding day is a good omen for a happy and long marriage. Hopefully the same will apply for you in your time ahead
Fairy wishes and butterfly kisses to you lovely, I wish there was more I could say, or do. Sending so much love your way xx
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I love that song.
I've been thinking of you a lot lately Trish, wondering why. I have no answers sorry. But I've also been listening to 'The desert song' and there is one line that keeps coming to me 'I know I'm filled to be emptied again, the seed I've received I will sow." And I don't know that this is you being emptied, so much as it is you being filled, because you're not alone in this. The testimony that comes now during, but also at the end of this, is bringing so much glory to God. You are being faithful in this time and that kind of faith is honoured in bucket loads, and does a huge amount for the kingdom. You are a true woman of God my friend, and I feel so blessed to know you xxx
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