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Thursday, October 31, 2013

There's No Place Like Home

"The reports of my death have been greatly exaggerated." ~Mark Twain   
Les' intestines regained consciousness on Tuesday, October 29th. Mr. H the surgeon and his minions all gathered around Les' bed that afternoon while I was visiting. The blue curtain was pulled and junior surgeon proceeded to give a litany of medical terms to explain the process of the bowel awakening and the stoma beginning to work properly. 
   Mr. H examined Les' abdomen telling Les the NG tube could come out and Les could have coffee, tea, milkshakes and then Wednesday progress to "sloppy foods." Les' face lit up like Christmas. Mr. H followed this up with "the histology report is back and the team has met to discuss it. The margins on either side of the tumor we removed are clear...and we consider this a curative re-section." Then he stood up, straight turned towards me and continued, "Mr. Biggs can go home tomorrow and recuperate. After a few weeks he will need to meet with Dr. J (the oncologist) to set up six months of chemotherapy treatments. After the chemotherapy has finished it will be necessary to have a CT scan every six months. After five years you are cured and an annual rectal exam is all that will be required." 
   "To reiterate then are his lymph nodes clear of cancer?" I requested.
  Testily Mr. H. snapped, "no, I didn't say that. I said the margins around the tumor mass were clear and we consider this a curative re-section." He waited, the group of junior surgeons looking from Mr. H. to me expectantly. I glanced at Les who looked confused but barely shook his head, giving a signal not to go any further into it with the surgeon at this point. 
   The only reason additional cytotoxic therapy would be prescribed is because cancer was found in Les' lymph nodes. Why couldn't Mr. H. just come out and say this? Why dance around the news, hint at it, and wait to see if I would argue with him about it? I finished visiting with Les, and he was totally confused by the surgeon's pronouncement. "If it is a curative re-section, why do I need further treatment? Why?"
   That night I sat perseverating on the surgeon's words until my stress level overwhelmed me. Anxiety squeezed my chest until I couldn't catch my breath, as I thought about how hard Les and I had to fight to get this surgery done; how rudely we were treated by Mr. H. and how quickly he dismissed Les' statement that he wanted no cytotoxic therapies, cutting Les off mid-sentence with the declaration, "What you want is irrelevant. We will give you the gold star standard in cancer treatment...if you elect not to have chemo/radiotherapy first then I would recommend surgery not be done as it would not be in the patient's best interest. Treatment before hand will shrink the tumor sufficiently so that surgery can proceed successfully; otherwise we could end up leaving some cancer behind."
   We capitulated once, agreeing to five days of radiation therapy in order to ensure the surgeon proceeded with the surgery even though the treatment Les agreed to--as explained by the oncologist--did not shrink the tumor--it supposedly stopped the cancer from growing; we were told the treatment would be a good guarantee cancer would not return to the area. Now it seemed to me that we were right back to square one. How much harder would we have to fight this time--to proceed without allopathic cancer treatment in which we do not have any faith--in order to get Les' stoma reversed in six months time?
   I thought about Les signing the Permission for Treatment form at Mt. Vernon Cancer Centre. This paperwork indicated second line cancers were possible as a result of the radiotherapy and we understood this could be the case. The form he signed the morning of the first treatment said he understood this treatment may not cure his cancer. Again, the morning of the surgery at Watford General, Les had to sign a form indicating this surgery was not necessarily a cure for his cancer. 
   Having radiotherapy increased Les' chance of cancer recurring by one third. Ct scans every six months will up the chances of cancer recurring yet again.  Most people are not aware that they absorb three years worth of average x-rays every time they undergo a CT scan. For Les that would mean six years of standard x-ray absorption each year for five years!
 Having chemotherapy would drive the odds up even further, if Les survived it.This surgery and the terrible lack of care directly afterwards have taken a toll on my husband...
   I called our daughter in law Joanne is studying to be a nurse. I told her what Mr. H. said, crying as I spoke. "I cannot watch Les go through this Jo. I can't do it. Doctors keep telling us Les has to undergo these treatments to be cured but he signs paperwork prior to each one that says these treatments cause cancer and/or cannot be construed as a cure. My heart is broken. This has taken years off my life which I fought so hard against cancer to regain. Les is laying there in his hospital bed completely confused about the mixed message the surgeon gave him."
   Joanne was livid! "Why would Mr. H. not tell you if there is cancer in Les' nodes? The way he handled this is causing anticipatory stress for both of you which neither of you need. If he isn't an oncologist and cannot say, then Mr. H. has no business telling you and Les what treatments are required. Now it's my turn to write a letter..."
   I was back to sleeping two hours a night as I tossed and turned. I could not find the off button on my brain; I could not stop thinking about all we had gone through only to end up facing another stand off on top of it all. 
   The next morning Les texted me to call him immediately. His voice on the phone was filled with excitement. 
   "H. and his team came around this morning and he was feeling quite chatty. I knew you wanted to know about those glands so I remembered to ask Mr. H. if there was cancer in my nodes, was it?  Yeah, so I did that and he said yes. He checked on the computer, and returned shortly saying cancer was found in two of the twelve nodes he removed. He asked me why I was so resistant to chemotherapy and I told him we don't believe in poisoning our bodies as a means of a cure. We believe there are other ways to fight cancer--and Jaq you won't believe what H. said! He said 'If you have the chemotherapy it will offer you a 15-20% chance of a cure. Make an appointment with Dr. J and hear what he was to say. Afterwards the choice is up to you and if you don't want the treatment, I will reverse your stoma in six months.'"
   I broke down sobbing in relief. The battle between allopathic medicine and alternative treatment for Les is over. With joy in my heart Les told me he had been released to come home and Jojo was on her way to pick me up. 
   Last night I had to keep looking left towards Les' new recliner, to see him stretched out and resting comfortably. I still could not believe he was home! My daughter Sparky called as she has every day since this all began to check on me and "Da" as she calls Les. She joked about my developing 'Lovers neck.'
   Today the district nurses came aboard and changed Les' dressing which they will do each day until his surgical wounds heal properly. Someone from Watford General also called.
   "Hello, Mr. Biggs? Yes, I am calling to check on you and see how you are doing....yes, yes...splendid. I am also calling to apologize for the error on your discharge papers where it indicates you were deceased instead of discharged."
   I'm happy to report Les is alive--all discharge paperwork to the contrary--and doing much better now. He rests in his recliner, takes care of his stoma and urinary bag, rests some more, has fresh juices, peppermint tea and our lovely daughter in law Ozlem's delicious homemade Turkish vegetable soup (recipe to follow in a future post).
   While the simplest things knacker Les out, he can sleep now in peace, knowing he is safe in my care. After lunch today we walked up to the bridge at the lock and stood for five minutes watching fellow boaters pass below us,  reveling in freedom. This cancer journey is not over yet, but our future already looks brighter...thanks again to family and friends on two continents for your help, support, encouragement, prayers and love.    

34 comments:

Maffi said...

Jaq I am so glad to hear Les is home.

Dragontatoo said...

Yay! Yippee - Yahoo! Les is home! Love you both 1000 Swedish Fish!

Adam said...

Fantastic news that you're back on board, Les. Wishing you all the best for a speedy recuperation.

Dogsontour by Greygal said...

Hi both

I last saw Les up at Bugsworth Basin a few years back - before love re-entered his life! We didn't get to chat, just a quick wave and a smile as we shuffled round the moorings. I knew from his blog his original motivation to get out on the cut and I always loved the simple philosophy that went with and his obvious love of boating and the waterways. There's been a big, big chapter in his life since then with Jaq, and now another with the cancer, and as I'm sure everyone who's been following your story will agree, we're all delighted and relieved that you two are back where you belong, on board together. I hope we'll pass Valerie again in the future and Les will give me another smile and a wave. Welcome home.

Best wishes

Sarah aka Greygal

Jo (Boatwoman) said...

So pleased to see Les is taking things nice and easy. Such a wonderful sight and so pleased all is going well. Lots of TLC and cuddles are in order, but also remember to take things steady and that goes for the both of you. Lots of love from us both Jo & Keith xxxxxxx

Tom and Jan said...

This story has more twists and turns than a constipated snake. But it's great to read the latest ending was what you wanted. Keep going Les & Jaq, you can make it!

Ali and John (NB Triskaideka) said...

That's great news, tat, Les is out of hospital and back on board!

Ian and Irene Jameison said...

What a relieve for you to have Les back and well done for sticking to your guns. The surgeons and Oncologists only want to dish out the treatment that THEY think is best. They are not always correct so keep on with the alternative treatments. I'm convinced that your way is right way.

Also I'm so glad my photo of the Dragonfly helped you and yes I will look forward to hearing about the treatment.
Love to you both
Irene & Ian

Sarah said...

That's brought a tear to my eye. Well done both of you for standing up for what you believe to be right for you, undervsuch pressure and at such a difficult time. Every patient should have a Jaq.

Ken and Sheena said...

Great to see you back on the boat, Les!

Dave,Beryl Bradshaw said...

Fantastic
Now you can recover as you want to, with Jaq's help we have no doubt that you will get better all our Love Beryl & Dave Nb Sokai

Valari Jack said...

Les, the photo of you back home in the recliner is one of the nicest pictures I've seen in while. So glad for you and Jaq that you are back under her loving care.

We look forward to meeting you two one of these days.

Valari
nb "Stardust"

jercher said...

Wahoo!! It is so good to see you out of the hospital, Les!! What a wonderful picture! I am sorry that you have had such a battle!! Rest easy dear ones and enjoy - you must feel like you've escaped Dr. Frankenstein's lab!!
Love and blessings,
Bear & Jer

Colin said...

Really pleased - and relieved - to see you out of the hospital and back 'home'
Jaq, your stress levels must have plummeted now you have him back under your feet.
Les, listen to Jaq and take it easy, time to get your strength back.
Colin. nb The Black Pearl

KevinTOO said...

Welcome home Les, take it easy. We're sure that nursey Jaq has everthing under control :)
Kevin & Harry

Ian and Karen said...

Hooray! So glad to see Les back home. You will both feel so much better now you are together again.
Much love, I&K

Anonymous said...

Hi Jaq & Lês

Wishing you both all the Best from Brazil great to know your home onboard.

Im home in a couple of weeks and would love to meet you both.

Robert ( The Wind in the Willows )

Nev Wells said...

It's so good to read this, a new chapter that is now under your control. Rest and gain strength the pair of you.

Nev NB Percy

Anonymous said...

So good to hear you are home, Les, and even better to know you are in fact not deceased!

Love,

Sally and Joe

Carol said...

So good to see that you’re both back on board ready for the next chapter of beating that cancer. Les, please do as Jaq asks, take it easy and regain your strength. Now you’re both back together - you can do it! All our love to you both. Carol and George.

Jennie said...

It is so fantastic to see you back where you belong on nb Valerie, Les. Well done, Jaq, for moving the boat and filling with water the other day - no easy task. Enjoy some peace and quiet together and Jaq, take care of yourself as well as Les. Hope to meet you both one day. Jennie and Chris

Sue said...

Ah, now then, that is the bestest picture I have seen for a long while.. Welcome home Les, now you will get the best care that anyone could ever get.. Keep smiling xx

Del and Al said...

What a lovely picture Les, back where you belong. Lots of rest and TLC while you get your strength back. Take care both of you, sending you lots of love, Del & Al xxx

Neil Corbett said...

The picture brings the words 'pigs' and 's.... ' something else, to mind!! :-)
Les, don't do too much too soon however well you might feel, and Jaq, think of yourself as well! You must be exhausted.
Kath (nb Herbie)

Wozie nb Oakfield said...

Lovely jubbly, there's no place like home is there? Unlike hospitals, the menu and company will be first class, but most of all it will be much quieter!

Jacquie said...

OMG,I've lost a day !! Am I so glad that some part of the fight is over.
The relief to be home for you both must be heart warming. You'll have to get your nurses outfit out & on again Jaq !! You both rest up as much as you can now. Les I'm loving your chair, you must have revelled in that little walk along the canal. Can't wait to see you both, after you've had time out and alone, and calm and peace. xxx

Jaqueline Biggs said...

Wow! We are so touched indeed. Thank you everyone for your comments. Les is weak as a kitten, snoozing a lot in between spoonfuls of homemade soup, fresh juices, an occasional very short walk outside, and checks by the visiting nurses who come aboard daily to change his dressing. We are happy as two peas in a pod or as Kath on NB Herbie said: a pig in S***! Les says it is so good to just be home where it is warm, safe and filled with love. Of course, we feel that way about the canals in general...we are filled with gratitude to live on a boat and share the system with nearly all of you. We are also grateful for our family and friends all across the world. You are all--each of you--very good medicine indeed.
Love and hugs,
Les and JaqXX

Anonymous said...

Just caught up with the latest and think everything has been said by everyone....lovely pic...can see the joy to be home! Beets on their way, promise! xx

Jim & Karen Barron said...

Wow .. I hadn't read the last few updates and I'm blown away and appalled by what you two have gone through in the process of getting to this point. So good to be out of the hospital and home together. You must both be seriously exhausted and I know that Jaq's kill cancer regime is very demanding so although the fight isn't over it's moved to a more peaceful location filled with love.
Pullman Karen now in southern CA

Anonymous said...

So glad to hear Les is home safe and sound (ish) he will improve so quickly now and this whole debacle will hopefully become just a bad memory.

Keep on smiling.
Kath x
nb.bobcat

The Mechanic AKA. Mick Lomax said...

Hi Jaq and Les

Glad he's back home and on the mend. Didn't get a chance to call like I planned, but things got a bit busy here. Wasn't sure if he would be awake if I called to.

I'll have to pop down soon with Dave for a visit. Will try and bring Keith to if he's free.

Mick

Carol Ives said...

Dear Les and Jaq. I have been in deepest darkest Wales for a week with the grand naughties and off the internet radar. I have now caught up with your news and am thrilled Les is back where he belongs and getting lots of tlc. Sending lots of love and good vibes your way. Carol bvXxxxx

Anonymous said...

A picture tells a thousand words... that picture of you back home and in your chair is the best I've seen in many months. Jaq, remember that you need to rest. You've been through a lot, too.

Love to you both, Alistair

Lisa said...

Dear Both,
Truly wonderful to see you looking so relaxed on your chair. Catching up with this blog has been a hard read frankly leaving most of us readers simply wishing we could be nearer and help you both more. Keep taking the medicine Les, Jaq's medicine that is and I feel you will soon be back on top form. We are all behind you Jaq,
Lisa
NB What a Lark

NB Valerie & Steam Train by Les Biggs

NB Valerie & Steam Train by Les Biggs