Hello - Shelley here!

Hello friends - I won't stay long on this but just wanted to write in this blog myself. Needless to say I am improving on a number of fronts - my energy, appetite, interest in life and enthusiasm to engage. An odd thing is that I have to ask folk to speak quietly when they come into the house. Although it is improving, I find a certain level of noise is quite disconcerting.

A great joy was to be able to talk with Brian and Barbara in England on the Skype programme today and to talk with my sisters Angela and Janette by phone in the evening. This goes along with a few conversations with folk who do not necessarily have the blog or who are checking in. We are still hoping folk will use the blog and e-mail to communicate as well as the phone. We are so lucky to have all this technology to keep us linked.

We are having a day of rain and humidity - the beautiful garden is appreciative.

Thank you to all for your continued care.

Healing Time

It was a busy morning with a visit from the V.O.N. at 9:00 and the Paliative Doc and nurse at 10:45. I'm Shelley's scribe at the moment who is asking me to say to you, "Right now I'm improving and needing to spend time trying to get my health back. The Doctors have said that I may be able to take a trip to England when I get stronger. So friends, I need to take rain checks on visits over the next while so that I can focus on getting well, but I do look forward to the time when I can once again put out the welcome mat.
It is wonderful to be home!"

With Gratitude

I'm home!!!!!!!!

A Set-Back

Last night I was called at 12:30 am. Shelley was experiencing a racing heart and high blood pressure. She had a long night of taking "vitals" every 15 minutes, meds to care for her heart, EKG's etc. It appears that her (until now) non-symptomatic Wolf White Parkinson's Disease was triggered. That has something to do with electrical currents of the heart. All seems to be okay today but now Beta Blockers have been added to her regime of meds. Unfortunately, this has meant another day in the hospital. She is still having difficulty managing the nausea but everyone is determined to help her get home tomorrow even if extra measures need to be put in place to have her nausea managed from here in the ways they are in the hospital. Eg. If a butterfly needs to be put in through which nausea meds can be administered, that can happen.

Kevin (my son) is mowing our lawn and I'm looking for things appetizing to take back to Shelley as she can no longer face the hospital's offering. So I'm off to raid the fridge!

Until tomorrow!

A Better Day

Shelley had a fairly good day today. Her nausea seems to have abated. If she has a good night tonight, she will be sleeping in her own bed by tomorrow this time. (By the way, whatever time the blog indicates I have posted this is not accurate - ie. it is now 11:05 pm). Knowing that we don't have an abundance of energy to host people who might want to come to Halifax to visit Shelley, and there seem to be a fair number of you, a very good friend has forwarded to us a list of B$B's in the area(see below) that we now pass on to you. At this point in her journey, Shelley is slowly walking the hospital halls a couple times a day, and just beginning to be able to read for short periods of time. Her energy and concentration have been quite depleted throughout the week. We are hoping that, as her body is able to take in more food, she will experience an increase in strength and energy.

Halifax B& Bs (3 star or better—all with private bath—except where noted)

Caribou Lodge

6 Armada Drive B3M 1R7

445-5013

4 rms $100-$115

Commons Inn

5780 West Street B3K 1H8

484-3466

41 hotel units $70-$150

www.commonsinn.ca

Fresh Start Bed and Breakfast

2720 Gottingen B3K 3C7

453-6616

8 rooms (2 with private bath)

$90-$125

(Note: Not 3 star but included because of location)

Garden South Park Inn

1263 South Park St. B3J 2K8

492-8577

23 rooms $109-$169

www.gardeninn.ns.ca

Halifax Waverley Inn

1266 Barrington, B3J 1Y9

423-9346

34 rooms $125-$239

Julie’s Walk Bed and Breakfast

17 Julie’s Walk B3M 2Z8

429-5162

3 luxury rooms $115-$189

www.julieswalk.com

Pepperberry Bed and Breakfast

2688 Joseph Howe Drive B3L 4E4

479-1700

5 rooms $140-$250

www.pepperberryinn.com

Virginia Kinfolks

1722 Robie B3H 3E8

800-668-7829

4 suites $100-$175

Welcome Inn Halifax Bed and Breakfast

1984 Connaught Avenue, B3H 4E1

446-6500

3 rooms$105-$175

www.welcomeinnhalifax.com

Surgeon's Visit

We saw Dr. Mulinari this morning who wants to keep Shelley at least one more day. Although she's getting antsy to come home, he's not keen and letting her go until she is doing better with the nausea.

We learned a couple of things this morning. 1.) The stent only has a life span of three months. Dr. M. has rescheduled her for a "replacement stent" at that time. 2.) The chemo will not shrink the tumor but will hopefully prevent it from growing as fast as it would like to. 3.) Dr. M. will phone her oncologist tomorrow to ask if he (Dr. Doreen) will see her sooner than the 13th. Although as Dr. M. says, "I really have no say in what happens but they are usually very good when I make a request."

I am so grateful for this man's "presence" to Shelley/us! He sat on her bedside to talk with her, connected, listened and stayed until he was sure all our questions were answered. Usually the docs who come to see the other patients "stand and talk down to them."

My heart is feeling lighter today because I envision Shelley home soon. I am rearranging our wonderfully large and open "living room"into a bed-sitting-room and will tape all your cards on the walls to remind her of so much love and energy surrounding her!

Stent

With gratitude that Shelley is on the other side of the procedure! She got back to her room at 1:15.

After two hours of trying, Dr. M. was only able to put a very small stent in the duct. It may or may not be sufficient. We will know in a week's time. If the stent doesn't work, she will quickly be admitted through emergency to have a drain inserted. Because of today's extra probing, she will not be having a good day but should be much better by tomorrow.

I came home just to give you the update and I'm now on my way back to the hospital expecting to be there until late tonight.

Thanks for continuing to hold her/us!

Found: One Oncologist!

We finally have a date to confirm that oncologists actually do exist! Shell's appointment is on Sept. 13 - three weeks from today. She has had a fairly good day albeit with ongoing waves of nausea that required (like yesterday) intervenous meds every six hours. That may settle if the Stent procedure (10:30 am tomorrow) is successful. As it takes her a long time to recover from anesthetic, she will be bringing in her "visitors" welcome mat on Friday but will put it back out at the door come Saturday.

With hopes that we will be able to share good news with you by tomorrow afternoon! Today Shelley commented to one of her visitors, "it takes a lot of community to hold courage!" For you, our community, we hold deep gratitude. When our courage wanes, we feel your prayers and energy coming our way and are continuously strengthened and hope-filled.

A Moving Experience!

Today was a moving experience for Shelley! Hallelujah! Her system has been in major distress for a number of days creating lots nausea and pain but relief for her is in the wind - or perhaps I should have said that relief has come with more than the 'wind.' Can you tell I'm a little past weary tonight? Palliative care has been a gift in the mysteries of sorting out dysfunctional systems. Praise be!

Dr. Robert Horton - one of the 5 palliative team doctors was in to see her this morning. We both felt very good about our connection with him. Folk who work in this area seem to have very special spirits!

We are still waiting on 'oncology.' Many in the medical system are now advocating (harassing the department?) on Shelley's behalf so we might hear something by tomorrow.

Other good news of the day is that Shell's options for meals have moved from "would you like green or red jello? to the more bountiful "full liquid diet." We are learning to be grateful for small mercies.

I print all emails that come in while Shell is in hospital and deliver them to her the next day - so your messages are getting through to her. The emails, cards and 'short' visits continue to lift her spirits. My thanks to all of you for "being there!"

A Good Day

Shelley had a fairly good day today! Although still on a clear liquid diet, she is now disconnected from her I.V. and her pain is being managed quite well. She will be staying in the hospital until after the second surgical attempt scheduled for Friday. When we asked Dr. Mulinari this morning why he should have any different results on Friday than yesterday he responded, "we had a hard time finding the "doorway" to the duct but now that we can enter the duct without further prodding and we know the map better, chances of success are greater." We continue to be hopeful.

We had a meeting with paliative care this morning and both are feeling relieved that Shelley now has that resource in place. It means that she will have access to someone 24 hours a day whenever/if ever she is in distress. We are also hoping that she will also see an oncologist while in hospital. One of the blessings of her being admitted is that she has quicker access to resources that seem to take a long time when on the "outside."

A delight in Shelley's day was a call to England to wish her brother a happy 74th birthday today. We joined in chorus to sing "Happy Birthday" to Bryan across the pond!

Shell had numerous visits today and says to let you know that she welcomes lots of visitors and appreciates "short" visits.

Hospital Stay

Just to let you know that Shelley was resting fairly comfortably when I left the hospital at 10:15. She "sent me home" so that I can be "fresh" :-) when I return to nurse duty in the morning.

The resident who saw her at 6:00 said they would be keeping her for the week until Dr. Mulinari makes a second attempt at the Stent. He also promised to make a referral to Paliative Care for us which means access to that resource will be speeded up for which we are grateful.

Although it is a scary time, I think Shelley is grateful to be where she can be monitored more closely until the bruising of the day has subsided. She slept most of the day and evening and hopefully will have a full night of sleep as well.

A blessing of the day is that her day-time nurse is a young woman who was part of my youth group when I was in Stewiacke. I hadn't seen or heard from Mila since those days although out of the blue three years ago she emailed me to tell me how significant that time was for her. Isn't life full of mystery! I'm sure Shelley is getting a little extra T.L.C. because of our earlier connection.

Problems With Stent

Dear Friends - The procedure for the Stent did not go well this morning. Dr. Mulinari tried several times to pass "a wire" through the duct and around the tumor. He also had one of his colleagues make an attempt. Unfortunately, the duct was very constricted by the tumor and the procedure did not work. Because the duct is now irritated and will create MORE pain for her, she is being admitted - at least for the night - so that they can monitor the pain medication she will need. When the duct has had time to recover from this morning's assault, Dr. Mulinari wants to try the procedure again, if not this Friday then on Monday. If the procedure doesn't work the second time, he will need to put a drain through her abdomen to the liver - which would be uncomfortable and unpleasant.

I've come home to pack an overnight bag for her.....Gwen - I will take your prayer shawl to her which I know will bring her warmth and comfort in the sterile hospital environment.

My heart is heavy with this news. As always, we ask and thank you for your prayers and thoughts.

Diane

"Keeping going"

We were away for the weekend at a friend’s cottage; a treat to be able to step off the planet for while – no phone, e-mails and we even avoided the TV. It is odd though, we were both commenting on our way home how good it felt to be heading “home”. At this time of change and unfamiliarity there is something comfortable about being surrounded by the familiar and predictable.

On Friday we saw someone at the clinic and, from that conversation; we think we are getting closer to an appointment with an oncologist. Hopefully, then proceeding with the chemo. Much as I am dreading the treatments, I want to get on with things so we have a sense of what it is we are actually dealing with. How will I do with the treatment? Will we be able to fit in some “quality time” during the treatments? Can the tumors be shrunk? Can this aggressive cancer be held back for a time?

Every day there something coming into the house that brings a smile or a lift of some kind. A good friend of mine, who also has cancer, sent me a note saying “if you are going through hell, keep going” – and we are. We are “keeping going” as we welcome friends for tea, keep up with the grand children, chase down weeds in the garden and especially in our .being with each other. We are slightly addicted to the web puzzles and understand there are a few of you who are also having difficulty tearing yourselves away from them!

Waiting

Yesterday we called about getting an appointment with the oncologist to discuss the chemotherapy and apparently the procedure is that the doctors, when they are free, come into the office and triage the referrals - i.e. the more serious go to the top of the pile. You will understand that this creates a distinct sense of ambivalence - do I really want to go to the top of the pile?

So when will the chemo begin? I assumed there were lists and that when a space opens up my name will eventually be put on the list. Not so, my name gets on the list within one to two weeks after seeing the oncologist.

Something that to me seems infinitely simple such as making appointments, is in fact, far more multi layered.

Learning to wait without pulling out the telephone cord or simply screaming at the next person who calls "why are you not the oncologist" is the challenge for today!

At some point I will likely rampage but in the mean time we have had some really significant times with friends.

In case you are wondering!

In case you are wondering we are doing very well. The time away is always precious and centers us. Saturday morning we wandered through the market and one of the things that took our eye was a phrase "The direction of the wind we cannot change, but we can adjust our sails". So we are adjusting our sails to scoop up all the energy, care, thoughts and prayers sent our way in the cards and conversations.

We are open to calls, spontaneous visits and invitations with the proviso that we may have to beg off because I am tired or we are not up to it.

Stent

On Friday we got a call to say the appointment to have the stent put in is 7:30 a.m Monday August 20th. It is a procedure that takes about an hour but by the time they do preparation etc, I'll not get out much before noon. Still no news on the chemotherapy regime.

We are just back from two days in Annapolis Royal. We stayed at the Bread and Roses Inn which is quite charming. During our time there, Gwen (Diane's sister from Ontario) Dale (her husband) and Christie (their grand daughter) joined us for supper and a wonderful walk on the boardwalk.

Our time away nurtured us and gave us time to talk and to continue cherishing each other.

A friend of ours gave us a link to a terrific way to spend our time when we want something mindless to do - jigsaw puzzles on the web - you might want to give it a try! http://www.jigzone.com/puzzles/daily-jigsaw It helps us in the many times when we are "waiting".

Beginning to integrate our new reality.

Hello folk - we want first to thank you for the words of support and affection that have been coming our way - the e-mails , food and cards are a reminder of the wider circle of our friends that we have known over the years.

Today has been one of trying to integrate the information we received from the surgeon yesterday. Last night was a terrible night for Shelley - likely a migraine caused her to have her head in the toilet bowl for several hours. Besides a rather tender tummy, she is in very little stress today. Our doctor has been very helpful with sorting out the pain medication.

One of the things the surgeon told us was to '"get your affairs in order". This is a code phrase to sort out my documents and all those things that I have held onto lo these many years. We had begun this sorting process some while back but, of course, now it has much more urgency attached to it. There is something both absolutely wretched and yet at the same time very healing to look at those things that bring back precious memories of times and people in my life. The blue bags are filling up and we are setting aside stuff for a yard sale one day. There is also a box of treasures for the things we are not ready to put aside.

It is good to see the sun shining. I hope it shines where you are. We are off for the weekend.

Meeting with Surgeon

As we thought surgery is not an option. I will see the oncologist in 2-3 weeks to begin chemo treatments - to increase quality of life. The general statistics suggest 6 - 9 months but then, they are just statistics. The good news is that I can eat anything I like!!!

Next week I will have a stent put in to prevent jaundice from occurring.

The surgeon was a gentle, caring soul and I felt held by him and know he will take good care of me.

We will take some days away to absorb this next round of information.

Thank you so much for the cards, e-mails etc.

Your continued support is very much appreciated.

Communication

Hi folks

We are overwhelmed with the number of pieces of communication that has come our way over the past two weeks. We are deeply touched by the concern and care expressed.

In order to keep those who would like to be updated on our journey we have put together this "blog" as a means of simplifying communication. When we have new information to share we will post it.

We will not be reading responses to the blog. If you want to be in touch with us you can still use e-mail.

Shelley and Diane

Naturopth

On Friday I went to see a naturopath, Cheryl Lycette. It was very good news to hear that I can return to my former diet. This opens up lots of possibilities such as eating out and with friends.

The surgeon is Dr. Molanari who is part of the liver transplant team here in Halifax. We understand he is excellent.

Days are going well given the slings and arrows.

Appointment

July 31, 2007

Dear Friends and Family

We finally have some news to share. Shelley will see a surgeon on August 8th at 3:30 p.m. We are told that his specialty is pancreatic cancer. He will likely determine the next step – possibly biopsy.

Your powerful prayers and positive energy are what will sustain us over the next while. We are very grateful for the words of encouragement and support – they are very meaningful to us and provide a sense of a network that is surrounding and holding us.

Our life is strangely surreal. Often we are “waiting” for a call from the doctor. Diane is moving towards compassionate leave from Bedford. We find ourselves at non-sense movies, long walks, visits to the beach and will try to spend over nights away when that is possible.

We will continue to let you know how life is unfolding for us.

Thanks

Shelley and Diane.

1st Communication

July 30th, 2007:

Hello folk – this is a group letter from Shelley and Diane that contains some hard news about Shelley’s health. Some six weeks ago she began to have some tummy trouble. About a month ago she saw a doctor and the hope was that it was some form of indigestion. There were dates set for an ultrasound and a barium swallow. Because the symptoms increased we decided to go forward with an ultra sound at a private clinic and that took place on Tuesday 23. That night we heard that there was indication of something on the pancreas and possibly something on the ovaries. On Wednesday, Shelley had a CT scan and it verified that there is indeed something in both places – likely a primary cancer in the pancreas and in an ovary with also something showing in the liver.

The next step is for us to meet with a medical team and we are hoping to talk with our GP about that on Monday. They will decide whether or not it is operable, if she needs a biopsy or chemo or what. We are now in the hands of the medical profession. We also believe strongly that we are being held by something bigger than us that is surrounding us and that we will be provided the strength and courage we will need. Your support, prayers, thoughts will be crucial to us.

We are holding onto each other and we are taking every hour one at a time.

We have put together a contact list and we will use it to communicate with folk so that (a) we do not have to repeat the story over and over (b) to give us some distance from our emotions (c) so that you, our friends and family, can know how we are doing.

Presently, Shelley is on a very limited diet which seems to help with her level of stomach distress. Thank you for giving us space over next few days while we absorb our new reality.

Shelley and Diane.