A Few Questions

Darwin · Posted: Wed May 21, 2008 9:46 am Post subject: A Few Questions

Hello Everyone

This is by way of an update and also a request for advice on several issues.

I have two questions.

My ex has bowel cancer with mets to liver and lungs. He and I went to see a surgeon yesterday as he has had very severe pain for about 7 weeks now and increasing the meds hasn't really made any difference.

The pal care team arranged for him to have a CT scan and then an ultrasound and we were told they showed NOTHING NEW Rolling Eyes

and that he needs to have an operation with a camera so the surgeon can see what might be causing the pain which is only severe when he stands but is less painful when he sits or lies down.

The surgeon showed us the x rays and then pointed out several spots on the liver and said that to resection they would have to remove 7/8 of the liver and they wouldn't do that. So first question...how much of the liver can a person live without? and why is he saying no way and the Oncologist is saying consider it? even though the cancer is in other organs

The scans also showed a thickened mass around the rectum and walls of the bowel and thread like lines throughout the tissue around the anus. The surgeon said it was probably cancer but when we asked when he could do the look see operation he said not for 2-3 weeks and then another week to get the results. That is FOUR weeks away!!! and my ex still wants to move from Darwin to Perth. He is asking me whether he should go to Perth and have the biopsy there or wait and have it here before leaving but I don't know what to say. The reading of the scans was so different from the pal care doctor and then the surgeon.

the surgeon was very blaise and said he was surprised my ex wasn't in pain constantly as he thought it would be there 100% of the time but they were seeing things in patients now that they hadn't seen before because previously my ex and people like him would have been dead by now.... Rolling Eyes

yes this is really what he said and actually repeated TWICE!

My ex is very weak but still mobile in very short bursts. He can drive but not walk about. he wants to drive the 4500 kilometres down to Perth but I don't think he will be able to cope with this mammouth task yet don't want to stop him doing what he wants to do. His friend would be a co driver but I am concerned about my ex driving with such a cocktail of strong medication in his system, concerned for him and other road users. I think one reason he wants to drive is that he is worried about flying because he really needs access to a toilet just for him and in a plane that's not possible.

I just can't understand why they are unable to get his pain under control. So many issues - my mind is like a tin of spaghetti and I can't help jumping from one issue to another - meanwhile I am packing up his house so I can send his things down to Perth. I think I'm going crazy Confused

Any thoughts or suggestions would be appreciated.
Bless you all!
D
_________________
Ex husband's diagnosis was January 2006, stage IV bowel cancer with mets to liver and lungs. Two years of continuous chemo, folfox then folfirri. On MAX chemo now. Has had radiation to pelvic area and radioactive SIRT spheres injected through the portal vein into the liver.

brainman · Posted: Wed May 21, 2008 4:39 pm Post subject: Re: A Few Questions

D, as an ex myself, I really admire what you are doing for your ex. I know for your story that it has never been an easy task.

I am not sure how much of the liver is needed to live. I do know that people have one lobe removed and still live but that is more like 50% and not 7/8th.

Pain management can be difficult and I am sorry that your ex's medical team has not found a solution. Unfortunately, most of the solutions that I can think of (like morphine) would change his life drastically... to the point of not being able to continue the life style that he is now living.

Dorothy, as always, you and your ex are in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

ksplat · Posted: Wed May 21, 2008 5:05 pm Post subject: Re: A Few Questions

Dear Dorothy

Thanks for the update on John, I am so sorry to hear that he is still suffering & enduring his pain for all of this time. I had told myself "no news is good news"! Sorry for that & I'm sorry you are experiencing such a dilemma & mixed emtions with John & his wishes at the mo.

You really are an inspiration in all that you do for your ex. I know nothing about this type of cancer & can't even "hazard a guess" as to the various opinions & advice you have received. John's current condition is serious & my prayers & thoughts continue to be with him & you-Dorothy.

As for John's wishes to move back to Perth. I cannot fathom his reasoning on the flight to Perth compared to the long, arduous & endless days of driving across the desert to Perth. Does he honestly think there will be a loo stop every hour or so? I don't bloody think so...I've driven widely in the NT & across to WA & ablutions are as "scarce as rocking horse poo" up there! Is he planning to attach a trailer with his own Port-a-loo? There is no way in this wide world he could drive that distance in his current condition (even if he has a co-driver) it would be way too taxing & what about the "what ifs?" There is little medical resources along the road to WA, what if John's condition required medical attention during this trip? I would strongly advise & urge you to convince him to fly (if you can't do it enlist the support of family & friends of John). Has he mentioned this journey to his medical team?

I continue to pray for you & John.

Cheers, Angie.
_________________
Brother diagnosed with GBMIV Feb 07
Treatment: Radiotherapy, Temodal, Gliadel Wafers, Dexamethasone, Keppra, Dilantin, Clexane
Went to our Heavenly Father after a 19mth battle,, 47 years young.
23 Sep 2008
http://cancerforums.net/viewtopic.php?p=19227

"Without Faith We Have Nothing"

Darwin · Posted: Wed May 21, 2008 9:04 pm Post subject: Re: A Few Questions

Thanks Jim and Angie

The view seems to be on one hand my goodness that's not a sensible idea to even attempt such a mammoth trip is such rugged and desolate countryside...... the other view is well let him do what he wants to do with the last months of his life and if he dies along the way he has died doing what he wanted to do.

He has driven this trip before and also from Adelaide to Darwin so he does know what the task involves. I can only say it is unwise and try to convince him to fly and if he insists then I will provide a back up plan for stops at regional hosiptals and the Royal Flying Doctor if needed.

I feel that getting him down to Perth will be better for his health care but at present we are waiting for news about that possible operation.

One thing this experince has taught me is that sometimes no matter how much you really want to be proactive and provide a plan/solution you just have to sit and let things unfold in their own time. Being an ex teacher always like to have a plan so this is a real learning curve for me.

My Mum's favourite verse in the bible was "Be still and know that I am God". I am trying.... I am trying....
Thanks for your concern and care my friends
Bless you
Dorothy
_________________
Ex husband's diagnosis was January 2006, stage IV bowel cancer with mets to liver and lungs. Two years of continuous chemo, folfox then folfirri. On MAX chemo now. Has had radiation to pelvic area and radioactive SIRT spheres injected through the portal vein into the liver.

REB · Posted: Thu May 22, 2008 3:26 pm Post subject: Re: A Few Questions

Back in October I came to terms with my own mortality. Before they removed my tumor, I was in really bad shape. They gave me a 50% chance of surviving the operation. With out the surgery they said I would have died a painful death in a couple of days. I wondered if I was going to wake up from the surgery.

I survived the operation, but I found out the tumor was cancer. At the time, I didn’t know the extent of it, but I thought my life was over and came to terms with it. Being a Christian, I don’t fear death, but I wasn’t ready to die. I have 2 kids that are counting on me.

I realized I didn’t want to die in a hospital bed. If I could choose, I would want to die by a mountain stream in some peaceful forest, or something like that.

Your Ex has had to face his own mortality. It sounds like he is saying to heck with it; “I am going to do what I want.” Good for him. That is kind of how I feel. Let him do what he wants. Let him enjoy what time he has.

I know it must be hard for you to watch this unfold, but let him face this in a manner in which he chooses, and be there for support when he needs it.

We all have a limited time on this Earth, and we must make the best of the time given to us.
_________________
10/01/07 - Removal of Stage III Colon Cancer Tumor and Temporary Colostomy
Started Chemotherapy 11-07-07 - FOLFOX regimen - 5-FU (5 Flurouracil) and leucovorin, oxaliplatin. Also Avastin
Last Chemo treatment 04-09-08, Colostomy Reversal 04-28-08 Age:41

DulcimerGal · Posted: Thu May 22, 2008 10:22 pm Post subject: Re: A Few Questions

Amen REB,

I agree with you. I have spent the last four months facing my own mortality, and my diagnosis is nothing like the one that Dorothy's ex has....

I also think you are an inspiration Dorothy for being there for him, and agree - let him live his life the best he can.

I watched my father die of Brain cancer, on morphine in the last few weeks, and he would have loved crossing the Outback......

As for me - it's kayaking on the Chesapeake bay, with a rosary in one hand and some Mary Oliver poetry in the other.....

and - oh yes - my dulcimer close by....

Our thoughts and prayers are with you both, I think your story is one of the most courageous and uplifting that I have read on this website.
Cheers
DulcimerGal
_________________
Rectal Cancer diagnosed Valentines Day 2008
Finished 6 weeks of radiation and chemo 4/23/08
Surgery to remove tumor - June 18th
6 months Chemo to follow

Darwin · Posted: Sat May 24, 2008 3:45 am Post subject: Re: A Few Questions

Thanks for you words or wisdom REB and the very very kind words from everyone else. The point is I willl ALWAYS support WHATEVER John wants to do 100% NO QUESTION. ...BUT.... I am concerned that given the very arduous terrain that he will find himsef in there may be problems. Whilst definitely not by a mountain stream, on a bush track in 49C degree heat with no help of any kind! What horrific images this conjures up in my head!!!! Kplat understands this as she has travelled it and so do I. It is VERY VERY difficult. Australia's outback is like nowhere else on this earth!!!!!!!! It is beautiful but unforgiving and unrelentless.
REB it is not and will never be me limiting John's choices. My goodness it is his life nto mine and I would NEVER presume to dictate or limit those choices BUT I am very concerned. Anyway we have invited his friend and friend's family to dinner tomorrow so will try to talk through the issues and find a way to make dreams come true.
Love to you all
Dorothy
Watch this space it will be like Micheal Palin I am sure:))
_________________
Ex husband's diagnosis was January 2006, stage IV bowel cancer with mets to liver and lungs. Two years of continuous chemo, folfox then folfirri. On MAX chemo now. Has had radiation to pelvic area and radioactive SIRT spheres injected through the portal vein into the liver.

Darwin · Posted: Sat May 24, 2008 3:48 am Post subject: Re: A Few Questions

DulcimerGal

He's taking his yakak too:)
_________________
Ex husband's diagnosis was January 2006, stage IV bowel cancer with mets to liver and lungs. Two years of continuous chemo, folfox then folfirri. On MAX chemo now. Has had radiation to pelvic area and radioactive SIRT spheres injected through the portal vein into the liver.

Darwin · Posted: Wed May 28, 2008 8:16 am Post subject: Re: A Few Questions

Hello Everyone

Thought you may like an update. We have a plan.... yippee! Hurray!

John will go in for day surgery on 4th June for a signoidoscopy (SP?) then plans to start the trip on 7th June. This Friday some friends who have flown up from Perth will help us pack the car and trailer.

We already have arranged an appointment with an Oncologist in Perth on 26th June so there is no delay in treatment.

I have developed a practical medical plan with the addresses etc of the regional clinics along the way and the evacuation points for the Royal Flying Doctor Service. Better to have it and not need it than not have it right! We have a GPS for easy of locating the clinics if needed and also a satellite telephone as regular mobiles don't work in some areas. I am exploring something called a Bperb (?) which is used in boating for locating people in distress so we hope all contingences have been covered. John has a special seat in the car plus neck and circular medical cushions. The doctors are taking care of the medications side of things. If anyone has any other suggestions of things that might be useful please let me know.

I will fly down to Perth (after I pack up the house here in Darwin) and begin to check out the other support services down there. Wow it will be a busy time but also joyful to see John happily looking forward to the trip Very Happy

. He wants to see Wolf Crater and fly over the Bungle Bungles. His pain is still not properly addressed so I hope this look and see operation will help with that.

On a not so happy note we found out two days ago that John's Mum has just beeen diagnosed with Lung Cancer which has mets to liver and her bones. She is 86 and has always been a heavy smoker. She goes to her home in Adelaide from hospital on Friday and the family have arranged a fulltime nurse.

Hugs to everyone
D
_________________
Ex husband's diagnosis was January 2006, stage IV bowel cancer with mets to liver and lungs. Two years of continuous chemo, folfox then folfirri. On MAX chemo now. Has had radiation to pelvic area and radioactive SIRT spheres injected through the portal vein into the liver.

pbj11 · Site Admin Joined: 12 May 2007 Posts: 1142

Darwin,

Goodness --- sounds like you have everything well in hand and that this trip will be quite the adventure.

The devices you are talking about are the following:
There are three types of distress radiobeacons compatible with the Cospas-Sarsat system:

* EPIRBs (Emergency Position-Indicating Radio Beacons) signal maritime distress,
* ELTs (Emergency Locator Transmitters) signal aircraft distress
* PLBs (Personal Locator Beacons) are for personal use and are intended to indicate a person in distress who is away from normal emergency services, e.g., 9-1-1.

Good luck -- you are incredible for so many reasons as I read your postings.

Godspeed,

PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

Darwin · Posted: Fri May 30, 2008 12:11 am Post subject: Re: A Few Questions

Thanks pbj11
That is most helpful. I'll keep you posted as to how things progress.
Best wishes from sunny Darwin (the place not me:)
_________________
Ex husband's diagnosis was January 2006, stage IV bowel cancer with mets to liver and lungs. Two years of continuous chemo, folfox then folfirri. On MAX chemo now. Has had radiation to pelvic area and radioactive SIRT spheres injected through the portal vein into the liver.

REB · Posted: Fri May 30, 2008 9:42 am Post subject: Re: A Few Questions

[quote="Darwin"]REB it is not and will never be me limiting John's choices. My goodness it is his life nto mine and I would NEVER presume to dictate or limit those choices BUT I am very concerned.[/quote]

I know you are not limiting him. You care greatly about him- I can tell. You being there for him is helping him.

When I thought I was going to die from this, I wanted it to be on my terms. I guess because I had no control over dying I at least wanted control over how I died. He might be feeling that. Have others on here felt that?

You are a great person for helping him through this. I know it must be hard for you to watch him like this. I am watching my mother slowly die from Alzheimer's. It is the hardest thing to do. Sometimes I have to make myself go see her because it is so hard to watch her go through this. Then I remind myself I am doing it for her, not me.
_________________
10/01/07 - Removal of Stage III Colon Cancer Tumor and Temporary Colostomy
Started Chemotherapy 11-07-07 - FOLFOX regimen - 5-FU (5 Flurouracil) and leucovorin, oxaliplatin. Also Avastin
Last Chemo treatment 04-09-08, Colostomy Reversal 04-28-08 Age:41

DulcimerGal · Posted: Tue Jun 03, 2008 8:26 pm Post subject: Re: A Few Questions

Dorothy,

you are probably busy packing and organizing - but I just wanted to say
ROCK ON to John - whatever a YAKAK is.......!!!
(going to research it now....)

I hope everything goes well, do keep posting as he does this incredible trip.

Luv
DulcimerGal
_________________
Rectal Cancer diagnosed Valentines Day 2008
Finished 6 weeks of radiation and chemo 4/23/08
Surgery to remove tumor - June 18th
6 months Chemo to follow

Darwin · Posted: Sun Jun 08, 2008 9:03 pm Post subject: Ooops

I just realised I put the update on the wrong thread - sorry about that! John has started is big trip and is really enjoying it!
_________________
Ex husband's diagnosis was January 2006, stage IV bowel cancer with mets to liver and lungs. Two years of continuous chemo, folfox then folfirri. On MAX chemo now. Has had radiation to pelvic area and radioactive SIRT spheres injected through the portal vein into the liver.

Darwin · Posted: Wed Jun 25, 2008 10:03 pm Post subject: Arrived safely

Hello Everyone
My ex arrived safely after his big trip and enjoyed it tremendously. He has now been in Perth for 6 days and is adjusting to the cold weather and wearing warmer clothes. I am so very glad he was able to do this as it has given him a more positive outlook. We have the first appointment with the new Oncolgist this afternoon and so hopefully he will suggest a range of options.
Thinking of you all
D
_________________
Ex husband's diagnosis was January 2006, stage IV bowel cancer with mets to liver and lungs. Two years of continuous chemo, folfox then folfirri. On MAX chemo now. Has had radiation to pelvic area and radioactive SIRT spheres injected through the portal vein into the liver.

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