Eve of 1 month Anniversary/Mourner's Bill of Rights (Alan D. Wolfelt, Ph.D)

As I have travelled around the last few days I have talked with many different people, with many different things said to me about Callum's passing.  Sometimes it is hard to know WHAT I should be feeling at this point. Sometimes I think I should be more sad, sometimes I think I shouldn't think about Callum so much, sometimes I think I am moving ahead way to fast. It has been just a month. 

The good news is that I will grieve in whatever way I decide to. I will feel what I feel, and do what I do. Some of it will make sense to other people, and some of it won't. But it will make sense to me - and that is all that really matters.

It is so hard to believe that it was a month ago that I spent the last night with Callum.  Throughout the night I held his hand as often as I could. It was more difficult as for some reason he wanted it across his stomach. 

That night I wrote in my blog that we were close to losing him, and that it may be the last night we spent together. Even though I seemed to know what was happening, it still seems surreal at times.  Those memories still occupy a great deal of my mind. I see him squeezing Cade's hand and smiling. I remember when he held Vanessa's and my hands and said it was going to be all right. I remember how Jamie lovingly held his hand for hours. I remember listening to his breathing slow down, and when the nurse listened to his heart and said "he's gone".  He was finally at peace and pain free.  And we are left heartbroken, with the task of carrying on our lives without him.  I am still not sure I know how to do that. 

I was reminded many times today that it is only a month, and that I have been quite busy, so it will take time to move from the memories of sharing the last days and moments of Callum's life to having the good and fun memories come more freely. It is a process. At times, a very painful process. I have added to the end of this post an article called "The Mourner's Bill of Rights".  It is quite helpful for anyone who is mourning - whether for Callum or anyone else.  Please check it out below.

Thursday, Aug. 11 is the one month anniversary. So, to try to continue to honour and respect Callum, and to gather happy memories,  in honour of Callum, please take a drink of your favourite beverage. His would of course, be scotch, but anything from wine, to juice to milk will do! Think of ways he touched your life, and make your own toast to Callum and his life.  If you have a chance to be with other people, share your stories and have a laugh or two!

I have made this into a bit of a treasure hunt for me. I am hoping to have people from all over the world do this.

Please send me an email to let me know your beverage of choice and share your story or toast with me, if you like. I will let you know Fri or Sat what “the stats” were.

I am sure tomorrow will have its share of tears. But I am hoping that each of us can share a thought or story, and have a smile, maybe even a laugh. 

Please check out the article below!!

The Mourner's Bill of Rights

by Alan D. Wolfelt, Ph.D.

Though you should reach out to others as you do the work of mourning, you should not feel obligated to accept the unhelpful responses you may receive from some people. You are the one who is grieving, and as such, you have certain "rights" no one should try to take away from you.

The following list is intended both to empower you to heal and to decide how others can and cannot help. This is not to discourage you from reaching out to others for help, but rather to assist you in distinguishing useful responses from hurtful ones.

1. You have the right to experience your own unique grief.

No one else will grieve in exactly the same way you do. So, when you turn to others for help, don't allow them to tell what you should or should not be feeling.

2. You have the right to talk about your grief.

Talking about your grief will help you heal. Seek out others who will allow you to talk as much as you want, as often as you want, about your grief. If at times you don't feel like talking, you also have the right to be silent.

3. You have the right to feel a multitude of emotions.

Confusion, disorientation, fear, guilt and relief are just a few of the emotions you might feel as part of your grief journey. Others may try to tell you that feeling angry, for example, is wrong. Don't take these judgmental responses to heart. Instead, find listeners who will accept your feelings without condition.

4. You have the right to be tolerant of your physical and emotional limits.

Your feelings of loss and sadness will probably leave you feeling fatigued. Respect what your body and mind are telling you. Get daily rest. Eat balanced meals. And don't allow others to push you into doing things you don't feel ready to do.

5. You have the right to experience "griefbursts."

Sometimes, out of nowhere, a powerful surge of grief may overcome you. This can be frightening, but is normal and natural. Find someone who understands and will let you talk it out.

6. You have the right to make use of ritual.

The funeral ritual does more than acknowledge the death of someone loved. It helps provide you with the support of caring people. More importantly, the funeral is a way for you to mourn. If others tell you the funeral or other healing rituals such as these are silly or unnecessary, don't listen.

7. You have the right to embrace your spirituality.

If faith is a part of your life, express it in ways that seem appropriate to you. Allow yourself to be around people who understand and support your religious beliefs. If you feel angry at God, find someone to talk with who won't be critical of your feelings of hurt and abandonment.

8. You have the right to search for meaning.

You may find yourself asking, "Why did he or she die? Why this way? Why now?" Some of your questions may have answers, but some may not. And watch out for the clichéd responses some people may give you. Comments like, "It was God's will" or "Think of what you have to be thankful for" are not helpful and you do not have to accept them.

9. You have the right to treasure your memories.

Memories are one of the best legacies that exist after the death of someone loved. You will always remember. Instead of ignoring your memories, find others with whom you can share them.

10. You have the right to move toward your grief and heal.

Reconciling your grief will not happen quickly. Remember, grief is a process, not an event. Be patient and tolerant with yourself and avoid people who are impatient and intolerant with you. Neither you nor those around you must forget that the death of someone loved changes your life forever.

Copyright 2007, Center for Loss and Life Transition

LWC Day 9 - R and R at the lake

I am sitting at the Siesta Cafe in Wasagaming - otherwise known as Clear Lake, Manitoba. We used to come here every summer for the Tamarack Golf Tournament. It seemed like the perfect place to get some rest and relaxation after the memorial services for Callum.  We had some thunderstorms and rain early this morning, but it has turned into a great day.

It has been a bit of a tough day.  One thing about not being busy is that you have time to think.  When you have time to think you start to see reality.  While I know and feel that it is real that Callum has passed away, it hurts so much to realize I will never, ever see or hear him again. I am so thankful for pictures and videos - it helps to keep the memories alive.

I had  some really tough moments last night. I was begging to have him back. I would have done anything to turn back the clock and have him here.  Where is Marty McFly and the time machine??!!

It just hurts so much. Grieving is so necessary but so, so hard.  I want to be tough, but I don't know if I can do it.  This new reality sucks right now.  I know it will get better, I know I will enjoy life again - in fact, I have many enjoyable moments now.  But the hurt never leaves.

I am enjoying sitting at the cafe using the wifi. Being outside is wonderful!  I am looking forward to bakery cinnamon buns for breakfast tomorrow. And maybe the driving range.......I am looking forward to trying to golf again......

The future is bright, but it will be lonely and tough for a while.....

Death leaves a heartache no one can heal, love leaves a memory no one can steal.  ~From a headstone in Ireland

TTFN
Lorna

Pain, Pain, Go Away

I can't believe how much pain a body can produce. The pain in Callum's knee has been excruciating for him. He needs to be fairly sedated to keep him comfortable.

I don't understand how this can happen to such a great person. And someone who has already endured so much. Why does he need this pain? Why does he have to risk bleeding?  I am feeling, more than ever, that we have been once again robbed. Not only will we have to say good bye forever, he is not able to communicate and enjoy his family and friends these past few days. So moments taken from us. And at his expense. Thank goodness there are lots of drugs to make him comfortable. It helps to seem have some peace.

We know with each passing minute we are getting closer to losing him. Tears are starting to flow more freely. We have shared many stories with family and friends. He does smile when he hears something he likes. At least we can give him that. He did smile and have a few words throughout the day. But he is weaker and things are progressing.

The nightmare hasn't ended. And it won't. This is no bad dream. It is our reality, as surreal as it is.  I may be spending the last night with the man I chose to spend my life with. And what a life he gave me.

Thank you Callum. I love you.  And always will.

Love Forever, Lorna

The Fine Art of Giving and Receiving

There is a dance that often happens when people have a crisis, especially a health crisis, chronic disease and/or end of life issues. Family and friends want to help but don't know how. Patients/caregivers don't want to intrude on others and ask for help. So what happens?

We end up with Givers and Receivers. It is a dance of needs, wants and offers. A dance that often sees Givers waltzing while Receivers tango. It is so hard to get the rhythm in sync!   We are often left with families struggling to keep a handle on the ever changing needs of dealing with new and ongoing care issues.  The Givers often say "Just call me anytime."  "Let me know what you need" "I'm here for you".  "You know you just have to ask." The Receivers spend most of the day making decisions on medication, organizing appointments, scheduling visitors, looking for cues from the patient to say whether to call an ambulance, the doctor, nurse, or just wait until tomorrow and see how it goes. Receiver/caregivers need to figure out what their loved one can eat that day, are they well enough to go out, or have a conversation. Receivers can often have trouble keeping track of the days of the week or the time of day. There is seldom time or energy to figure out what they need, who might be able to help, find a phone number, and then remember to call.

It's not that most Givers are insincere. Sure, there are some people who make offers of help but really don't mean it.  But I believe most Givers really do want to help. What they are looking for is direction from the Receiver. And most times the Receiver just manages to get through the day. There is nothing left over to figure out what their current need is, let alone anticipate a future need. And the out of sync dance continues.

I have been trying to find a way to get this dance in sync.  Recently I very quickly found I needed help. It was time to become a Receiver on a more full time basis.  One thing I did was start an online community on Lotsa Helping Hands website. It helps to organize needs on a daily, weekly or monthly basis. There is space to organize emergency contacts, health information, and it is easy to send information in one broadcast email. With this set up, people can SEE what help is needed and sign up for it.

Something else that helps is if a Giver makes a specific offer ie. "I can do your gardening, does Wednesday work for you?".  A Receiver will seldom ask for something.  Maybe they will ask some family and very close friends. But it is unusual. If you love cleaning, offer to come and clean.  It is very important to not be too general. Even the question "What can I do to help" can be too overwhelming - another "demand" the person/caregiver has to deal with.

It can be equally difficult for Givers to know how to help. Recently the LIVESTRONG Facebook page asked people what helped them when they or a family member was going through treatment. I have made a list that includes many of these ideas, plus some of my own.  I will continue to look for suggestions and post them when I can.  I recently read on another blog that what the caregiver needed was a maid who can cook - that pretty much sums it up!!

Please keep in mind who your Receiver is. These suggestions won't be for everyone. Personalities are different, treatment affects everyone different, some people have more financial resources than others, some have more family and friends to help than others do.

So....here it is! A list of suggested ways to help, some specific suggestions for people who live out of town, and some suggested visiting etiquette. I hope it helps both Givers and Receivers. Feel free to send me other suggestions to add to the list.

GIVERS

Things to do/send to friends who are ill and their caregivers:

Ø    Wear the LIVESTRONG yellow bracelet for them.

Ø    Talk to them normally, in a positive way.

Ø    Stay strong for those you love. Life is short...tell them how you feel and what they mean to you. You may not have another opportunity. Real friends are forever.

Ø    Prepare meals for the family because they'll lack the time to do it themselves

Ø     Lawn care

Ø    Support the caregivers nearby so they don't run themselves down and abandon their own lives.

Ø    Monthly themed care package. Something for the whole family to enjoy, if possible.

Ø    A good book

Ø    A special blanket

Ø    Homemade cookies

Ø    Funny cards to make them smile.

Ø    Crafts

Ø    Remember pets each month

Ø    Movie night box, including a DVD, popcorn and candy.

Ø    Funny videos

Ø    Hire a housekeeper for them

Ø    Arrange meal deliveries

Ø    Send or take reading material. Tailor this to the person, sometimes there is too much fatigue and “chemo brain” for long novels. 

Ø    Send or take crossword puzzle books

Ø    Send a special card

Ø    Send a special poem, verse or short stories

Ø    Gift Cards: i.e. Gas cards, restaurant gift cards, online shopping, massage, music (iTunes), Starbucks, Tim Hortons, food/grocery delivery

Ø    Set up a 3ring binder w takeout menus

Ø    Send a card each week, with some kind of inspiring quote or a funny saying

Ø    Care packages,

Ø    Money,

Ø     Paying for a nice camera or a set of family portraits,

Ø    Visit, - bring coffee/drinks/snack

Ø    Provide gardening services,

Ø    Joke gifts or other funny items that will lighten the mood,

Ø    Be a non-judgmental ear for them so they can talk or vent without having one more person tell them what they HAVE to do or that all their personal/health care decisions have been wrong

Ø    Text a joke a day

Ø    Ask what food they can keep down and provides comfort and send a goodie basket of that food, some other tokens of comfort like a stuffed animal, a t-shirt, and a photo.

Ø    CD's of guided imagery,

Ø    Cozy cotton pajamas,

Ø    Funny cards,

Ø    Stamps/small easy craft projects...

Ø    A lot of local grocery stores have delivery directly to your kitchen table, usually a 5.00 fee, the services usually can be ordered online and paid for with a credit or debit card :)

Ø    Unexpected care packages are great!

Ø    Send flowers,

Additional Things To Do or Send If You Are Not Near:

Ø    Send a joke by email,

Ø    Send pictures by email, snail mail, or on Facebook

Ø    Use Skype to visit.

Ø    Use FB and all the other technology out there to share pictures and funny video of kids, family or pets to entertain and lighten the mood.

Ø    Be a "virtual" shoulder to cry on by email, SKYPE, phone, text.

Ø    Send a note by snail mail. . Seeing your words of hope on paper will give them something to look at when they are feeling down If you send it in a funny card or a card with messages if strength even better.

Ø    Send reading material,

Ø    Send them a magazine subscription

VISITING ETIQUETTE

Ø    Keep visits short. Leave before the person is tired.

Ø    Ask how they are feeling and let them lead the conversation if they want to talk about their health and issues related to that.

Ø    Bring your own refreshments, and maybe a treat to be shared.

Ø    Be respectful of other visitors. When someone arrives when you are visiting, it might be a cue to finish your visit.

Ø    Remember that just because someone LOOKS and ACTS like they are fine, they are still sick INSIDE.  Don’t be fooled that they are BETTER!

Ø    If you are staying for a few hours, when someone else comes, it is good time to go for a walk, go shopping, go have a nap etc.  It is overwhelming for the person who is ill to have too many people around.

Ø     Give time for family (and family give time to other family) to have individual time to visit. This is especially important in end of life care. The person who is dying usually needs time to visit individually with family members.

Ø    If there are many out of town family/friends who want to visit with each other, arrange that visit somewhere besides the sick person’s place. Too many conversations can be overwhelming.

Ø    Remember the caregiver has many of the same needs as the person who is sick.

Ø    Keep in mind that there are numerous other demands on the sick person and caregiver: doctor visits, home care, nursing visits, blood tests, treatments, medication schedules, insurance forms, updating friends and family, etc. While it might seem that they are “at home all day”, it can be full of activities that are quite tiring.

Ø    If the family has set up a way to schedule visits, use that system as much as possible.

RECEIVERS

Ø    Set up an email group to keep friends and family up to date with things

Ø    Start a blog to share your thoughts, feelings, and share information.

Ø    Make a “Wish List” of things that might help – Amazon has a place to do this where people can check and send/do something they know can help. Keep it up to date.

Ø    Another method of communication between you and those interested in how are you doing is using a website like Caring Bridge, an excellent, compassionate network site. Here's your link: http://www.caringbridge.org/.

Ø    The website www.lotsahelpinghands.com is a great website for scheduling and organizing help like meal drop off, visits, transportation, household needs etc.

Ø    Be thankful for all that is done for you! 

 “Dancing is just a conversation between two people.  Talk to me.”

Hope Floats (1998) – Justin Matisse (Harry Connick Jr.) 


TTFN
Lorna

Pride and Humility

For a long time I have marvelled at how often we have two opposite feelings at the same time. The first time I remember dealing with this close up was when I worked at the women's shelter in Brandon. When working with the children in shelter I used a book called "Double-dip Feelngs".  It talked about different times children have to go through opposite feelings at the same time: happy to move to a new house and get your own room, but sad to leave all their friends; excited to start school but afraid of leaving mom; etc.

Going through a cancer journey leads to dealing with contradictions like this all the time.  From the toxic effects of chemotherapy in order to treat the disease, but wishing for healthy days, to wanting test results quickly - but knowing that it is usually bad news if you hear too quickly.

I have recently experienced something similar, although the opposite feelings come from different experiences.

Pride: a feeling of pleasure and satisfaction thatyou get when you, or someone connected with you, haveachieved something special (MacMillan Dictionary).
 I have felt an extreme amount of pride in our children in the last month. They are very different children with very different personalities, and therefore, different accomplishments. However, we are equally proud of them.

Vanessa is now a full fledged Chartered Accountant. She has been relentlessly dedicated in the pursuit of this goal, and she achieved it in May.  She also was the successful candidate to join the finance department at the City of Medicine Hat.  Her goal has been to find employment which gave her a balance of family life, work life, and financial stability. And I believe she has found it. We are so proud of her hard work and dedication to family.

Jamie's first love has always been golf. He has been a top notch amateur golfer and last fall set a goal to win the Victoria Day Tournament in Medicine Hat. He practiced and practiced and it paid off with a win! Up to this time Jamie had won 2 of the 3 major golf tournaments in Medicine Hat, and he wanted to win this one for his Dad. It was thrilling for us to watch him birdie the playoff hole for the win. We are so proud of his hard work and dedication to his goal, and his family.

Humility - a way of behaving that shows that shows you do not think you are better or more important than other people.

I am not sure I truly like that definition of humility, but I think you will get what I am trying to say.  We have been through this cancer journey for nearly 6 years. We have had many ups and downs, good days, bad days, unexpected trials and successes.  We have had help from many people over this time, but last week was the first time that I just couldn't do everything that needed to be done. Even as I write this, I have a dishwasher full of clean dishes, a sink full of dirty ones, counters that need wiped, etc. I will get to it later today.  This has happened before, but not really much since I have not been working and doing these things at the same time.  I have been humbled, and will actively seek out more help. I didn't understand the advice of making things as easy as possible so you have the energy for the good times and fun stuff.  I now have a better idea what that means. We are so lucky to have so many people here to help us. I am getting less hesitant about taking people up on their offers!

If anyone reading this is in a similar situation, I have found an on line resource to help coordinate the help from people. It looks quite neat and I have started using it. Check out https://www.lotsahelpinghands.com/create/  and see what you think!

If you would like to help us out, please copy and paste this link in your browser:
https://www.lotsahelpinghands.com/c/643145/ 


You will need to sign up and register in order to help, but there is no cost and no risk.
"Giving is the secret of a healthy life. Not necessarily money, but whatever a person has of encouragement, sympathy and understanding." John D. Rockefeller

TTFN

A LIVESTRONG Day Event | LIVESTRONG Day 2010 | LIVESTRONG.org

Remember to Wear Yellow on October 2!!!

A LIVESTRONG Day Event | LIVESTRONG Day 2010 | LIVESTRONG.org

"Tough Dude"

August 1, 2010

As you can see, it is Aug. 1st, and I am starting to write this blog, even though it will be over a week before I publish it.  This past week has brought a few changes to our lives, but there are still so many unanswered questions we can't really talk to anyone about it. For now we will find the answers and then develop the plan to share it with our loyal supporters.

I must apologize to you in advance. This is going to be emotional, most likely more emotional than anything I have written so far.  I get to write each part it as it happens - you will read it all at once. Please take your time, maybe you don't need to read it all at once.


July 31, 2010

We finally got some details from D. , Dr H's nurse, on the CT/MRI from June 28. The CT shows some increase in size and number of lung nodules - and the measurements of a couple have changed quite a bit. There is some irregular thickening of the bladder wall at the rear right, which could be cancer (although not likely metastatic?) or could be a build up of stones. Callum may get a referral to a urologist to find out exactly what it is. The spleen is still enlarged with some tiny low density lesions - could be cancer or cysts, they are too tiny to tell.  There is some free fluid in the abdomen (not sure what that means). Kidney, pancreas and liver seem to be fine, and no lymph node involvement. In the areas of this CT scan (mostly ribs) there were no destructive bone lesions showing.
The MRI was good - there was a small increase in the size of the tumour at the back, but it wasn't really a significant increase.

We didn't tell anyone about these earlier as we wanted to talk to the Dr about what this all meant. You will find out more at the end of this blog!

You will remember that Callum started radiation therapy on his femur last week. The pain in his leg has been getting worse.  When he started the treatments we still hadn't heard if  Dr K (radiation oncologist) had received the x-ray films and what he saw in them.  Finally, Thursday morning he called me and let me know the news. The middle of the bone at the site of tumour was eaten away - destroyed.  There are a few things in the x-ray not clear, but it certainly described destructive lesions in other parts of the leg (thigh and shin) and pelvis - there are definitely changes in the bone that by the look of it goes with some cancer process. He emphasized that these are images only, and not confirmation that it is cancer. But there is a high probability it is cancer.  He said that the funny thing is that the destruction is happening from the inside out. I have no idea what that means, what you do about it, or if it even matters!

He said that his goal is to help control pain and provide comfort care. He can radiate other areas as they become painful, but only for a while. He can't radiate the whole leg because it would destroy the bone marrow, which is already impacted by chemo treatment, and would likely kill him. They also want to keep the side effects to a minimum - quality of life is important.

He also said that the inside bone is very fragile - he can't weight bear on that leg anymore as he is at an extreme risk of breaking the leg - not a complication we need. And he confirmed in this phone call, that he does not foresee Callum ever weight bearing on that leg again.  I was punched in the stomach again. We kind of knew that there would always be trouble with that leg, but we thought that he might, even for a little while, be able to walk on it again. ouch. ouch ouch.

It had been recommended to me that we look into bisphosphonates - they help with bone problems in patients with metastatic breast, lung or prostrate cancer.  I asked Dr. K - he said they haven't any conclusive studies on the effectiveness for colon cancer (which I knew), so that they likely weren't covered (which I knew) and since he was leaving on holidays I could ask Dr H (medical oncologist) about them. They might help, he said.

He did make a referral for a bone scan, but it sounds like that might be a wait. Dr. K said not to worry about it as it would only be a baseline and wouldn't likely change the treatment plan anyway.

So.....comfort care, no more walking on that leg....high probability that the multiple lesions are cancer....and when I asked about life expectancy....he refused to say - would only tell me that he already way past his expected time.

As if that wasn't enough.

Wed we got a call from a social worker who wanted to meet us after Thursday's treatment.  We thought it was likely the regular old check in since he was having radiation again. Boy, were we wrong! She wanted to tell us about the Palliative Care Team, and other services available to us. Palliative care, wow! I was pretty blind sided by those words, and I think Callum was too.  From reading other people's stories, I know palliative care doesn't mean imminent death, but it sure brought that reality a lot closer to home that it had been! And when she asked whether Callum wanted his own wheelchair I thought he might lose it. He was really good - very respectful. But I think both of us were dumbfounded. We hadn't yet had the telephone call from the Dr - so this possibility was new to us!  The other thing about Palliative Care is that is often, I think most usually, is offered when treatment is no longer happening. We don't know if that is the case this time....or ....................

Now, some good things came of this.  She is sending in an application for Callum to have all his drugs (well, the ones on the formulary, anyway) covered through the palliative care program.  She had Callum sign a form for us to get a disability parking placard.

And the scary part....she referred us to the palliative care team.  The Dr is well versed on pain meds. The team is good. John is the coordinator for Callum. Ikes. I have tried for the past few days to wrap my head around it. I keep thinking I am being a drama queen - that I am making things worse than they really are. And then I realize that we have an appointment with the Palliative Care coordinator and nurse on Aug 4th. They are coming to our house. To meet with us. To see what needs Callum has.  I see the value in this, and know this team will be a valued treasure to us.  But we didn't realize we were at the point that we need this help.  I guess we will find out for sure on Wed.

So, the big question for us is why the referral now? We didn't really think to ask that question last week. We will ask this week coming up. We are both unsure what the message is? Did the referral happen because Callum's mobility is limited and they want to help keep him as independent as possible? Is it because of the pain. Or our worst fear - is it because the disease is progressing so much that we must now accept the inevitability of death. Wow.....can't believe that is what it is. Don't they know Callum? Don't they know he is a fighter? Don't they know he has overcome so many things that this is just one more bump to him? Or.....is it time to say he is done getting over bumps....?

We have an appointment with the neurosurgeon on Aug 5th. to review the MRI results. We are all curious about what he will say, as in April he said that if there was any increase in the size of the tumour he would do surgery. But we are not sure what will happen if the disease isn't stable. And it isn't.....yet. Maybe the FOLFIRI will get it tamed down.

We meet with Dr. H on Aug 9th. I am sure it will be a very interesting visit. He has been so very positive and supportive through this it means a lot to us. We know that if there is anything we can try he will do it. But we also know that if he now says this is the end of treatment, then we likely have few options, if any. A sad thing to think about.

Signing off for now......


Tuesday, Aug. 3

I finally called the social worker at the cancer centre. The one we saw last week (S.) is on holidays (seems to be our luck this summer!),  so I spoke with her covering SW (R.).  He said that often they make the referral to the Palliative Care Team (hmmm, I think I will call them the PCT) so that we are aware of all the services available to us, can take advantage of what we need now, and know ahead of time of ones that we will need later.  He was very reassuring, and said that S. is new at the cancer centre and had worked with palliative care at the hospital, and on the ward that Callum was on in January.  He said she knows all the hoops and how long wait lists can be so is being proactive to get the ball rolling for us. We had a chat about how Callum is doing and some challenges there is in getting him to not bear weight on his leg. I will still remind him now and then, and let the medical professionals explain it to him again. I just don't want him to break it, I just don't know if he is strong enough to withstand a break and whatever comes with that.

Anyway, it was a huge emotional release to have that question answered. I had really got myself wound up about it. I did not feel well all day.  Callum asked me to keep positive, but I bounce between wondering what reality is and staying positive. I will always support him, regardless of the situation. I just don't want to contribute to false hope.

Enough for today. I am physically and emotionally exhausted. And the PCT will be here at 9 am tomorrow.  Stay tuned....

Signing off.....

Thursday, Aug 5

Well, it has been a weird couple of days. Wednesday we met with the Palliative Care Coordinator. She introduced us to the Palliative Care program here. It was certainly a scary experience - it usually means something when the Palliative Care steps in! The good part is that the program covers the cost of all of Callum's drugs, providing they are in the formulary.  The only hitch is sometimes with antibiotics - they will only cover if you start with the cheapest and only go to the next one if the first doesn't work. Usually with cancer patients they will start with one of the most potent - and costly - antibiotic because they need soemthing that works really fast and is very effective.  One thing that is strange to me is that the program also covers Boost, Ensure and some protein supplements. It was still a strange visit. Palliative Care is about symptom management and comfort. We will be looking at having railings put in the shower, and a shower chair, for Callum to shower without having to put weight on his leg.  J. , the coordinator, talked about accepting help and having a list of things for people to do. She mentioned that people want to help, but don't always know how.  She also talked about a personal health directive, and left the form for Callum to fill out. There is going to be so much more for us to learn, and so many more hard decisions! This is the part that frightened me the most!  There will be referrals to Occupational Therapy and the Palliative Care Nurse.  Maybe home care, too. Whatever we need, we will have a one stop number to call and they will get us what we need! Pretty cool! Except for the reason we have this real cool program....

Thursday we had a visit with Dr F, the neurosurgeon. It was an interesting visit as well. There are so many hard things to this now. We knew it was coming, but it is so hard. The decision we made today was to wait and see what the next MRI shows as tumour growth - it will be sometime the end of Sept or so. The June MRI shows some slight growth, but with the disease progressing, we have to think about the risks and benefits of brain surgery. He said he will do it when the symptoms and problems get worse, if Callum wants it. But he also talked about the alternative - don't do surgery, and possibly have a less painful death than treating it and letting the problems with other cancer sites get worse.  I just can't see Callum quit fighting! But one never knows what will be the twists and turns in this journey, and I hate seeing him in pain, so I want him to be as pain free as possible. Crappy disease! I hate this!! It is horrible!! I just can't believe that our life is going to change that much in the coming months. But I guess it is.....that is reality. And many, many people have done this before. And so will we. So much to think about. So much to consider. It makes my head spin.  It has been a helluva week, that is for sure.
Tomorrow one of the nurses comes to meet with us. It will be interesting to see what she says. I thought I would be ready for this....but I sure am not!

time to sign off.....

Aug 8

Well, we met with the Palliative Care RN and the occupational therapist on Friday. They are both nice ladies.  We will be getting some rails in the shower and a shower chair to help Callum shower safely. The plan is for the RN to come visit once a week, even if it is a quick visit. She will do a quick check on how he is doing and make sure we have no issues. Part of their job is to prepare us for this part of the journey. It was really hard hearing things like "have the papers on the fridge in case home care comes and find him unconscious - it happens.".   Now, I have thought about a lot of things, and some of those not nice things, but I never had that picture of Callum being that sick, and being unresponsive. I know it sounds weird, and I am sure it was in my mind, but not in that level of detail. I don't know what I was expecting would happen, but I hadn't thought about having to use a drug store that is close by and has long hours so we have a good chance of getting any prescription we needed on short notice. Do all of you have your personal health directive? Might be good to get one when it isn't in the middle of a crisis. We are thankful we did that a few years ago.  Tomorrow we see Dr. H - we are not sure if he will be recommending to stop treatment, or to continue for a little while to see if the change in chemo has helped slow the disease progression again.  I am sure we will have a few anxious moments tomorrow morning. Dr H has always been able to reassure us, and has been honest about quality of life issues, so we feel confident that he will give us good guidance.

Well, time for tea and bed.....

TTFN


August 10, 2010

Well, this post will be a little more upbeat than the previous  - we had a good visit with Dr. H - who is so good at being realistic, but encouraging us to stay positive.  I have so much respect for him and how he handles the tough stuff. It was Dr. H who took me for "the walk" and "the talk" about whether to continue with the supportive breathing machine when Callum was in hospital in January. He pulls no punches, but also doesn't make mountains out of mole hills.

Anyway, his plan is to continue with the FOLFIRI chemo treatment every 2 weeks. He seems confident that we can get the disease stable again and will book a follow up CT scan for end of Sept. Keep your fingers crossed!!  He said the issue with the bladder may be stones or even some issues from the radiation and/or surgery in 2005/06.  The post-treatment issues are something that everyone is seeing more often now that there are such good drugs to extend life. He will make a referral to a urologist and then he can talk with Callum about it and we'll go from there.

Dr. H called Callum a "tough dude" - even without the muscles of Schwarzenegger. He is so impressed with Callum, I guess with us. So positive and practical.  Did you ever think that would describe us? Makes me giggle. But how else should you deal with this? Too little time to waste it being negative.

Callum has noticed a change in the pain level, but it still is quite painful. We are hoping that in another few days he will start to notice a bigger change and more relief - he was told it could be a week - 14 days to feel less pain. He is fatigued by the radiation but we hope it soon passes. He has a bone scan on Aug 17 - it will be used as a baseline scan, not diagnostic. There will likely be no change in treatment but when compared to future scans  it can give an idea of any progression from now.  We got a copy of the summary notes from the July 22 visit - he indicated the thinning bone in femur and shin bones looks like osteoporosis or osteopenia.  It was the lesions in the femur (the one that is treated, and confirmed cancer by biopsy) and the one in the pelvis that he referred to as cancer.

Dr. H reassured us that the Palliative Home Care referral was just to help us and said to not read a lot into it. He said that with the amount of pain Callum was having they likely thought it would be good for us to get connected with them. I am more comfortable with this now, although I admit I was freaked out last week. In some ways it is good that this happened...I can better prepare for the next time. And unfortunately, and sadly, there will be a next time.  We did have the shower chair and saskpole put up today. We will have to check into the handrail in the shower, and a removable shower head.  Too bad he isn't a pelican, he would be fine on one foot!

So, I am feeling a lot more upbeat this week.  I do feel like I have been through a hurricane, though! We had a nice quiet weekend and few medical visits this week. A great visit with friends from the Hat on Sunday was a nice surprise! We really are lucky to have gather such a garden of friends along the miles we have moved.

Time for me to sign off....thanks for letting me get this out of my system as it happened.  Hopefully you have not been traumatized!

"A good friend is a connection to life - a tie to the past, a road to the future, the key to sanity in a totally insane world."  ~Lois Wyse



TTFN
Lorna