LWC Day 13 - Better Days

I hope I don't make you guys dizzy with my ever changing emotions! I have a feeling this will be a wild ride!!

Today was a better day.  Last night I re-read some of my posts from the last week or so.  I saw a theme of me longing, nearly begging, for Callum to once again tell me things would be OK.  Then I remembered a couple of things that happened when he was in the hospital.

I think it was either sometime on Saturday or maybe Sunday - hard for me to exactly remember when it happened.  I was alone with him in his room, holding his hand.  He asked me if he missed doing anything.  I don't remember if he said much more than that, but I do believe he was asking if there was anything else he needed to do before he died.  Lovingly, I let him know that everything was looked after and we would be fine.

The other thing happened late Saturday night.  It was about 11 pm. Vanessa had stayed late that evening and was just getting ready to leave.  We were standing on either side of Callum's bed, saying good night. Each of us held his nearest hand in our hand, and the tears started rolling down our faces and the quiet sobs started.  Callum squeezed our hands and said "It will be all right.  It will be all right.".

I reflected on these two events over the past day. I finally realized that Callum had already told us things would be OK.  And just as he had to trust me when I said everything was looked after for us, I need to trust him, and those near to his last words, that I/we will be OK.

After this reflection I felt a burden was lifted. I realized that I wasn't disrespecting Callum and his memory by having happy moments and looking towards the future.  In fact, it was more disrespectful to NOT find some joy and happiness, and make future plans.  His wishes always were that I wouldn't be sad he was gone (well, I can't make that wish come true) and that I continue with my life, take the time to do something I love, start a business, go back to school - whatever I wanted to do.  He wanted to be sure I was looked after and wouldn't have to work at a job I didn't like, and that I could enjoy some travel. He wanted me to return to golf. And of course, he wanted to be sure family remained all important. That we treasure the moments we have together and always love one another. Those wishes I can make come true.

It is in that spirit and awakening that I started this day with a coffee, a ciabatta bun with Bygarski Honey (the best honey ever!), surfing the net, answering emails, then spending time with Vanessa and Stuart while Cade played in his pool, enjoying supper with them, and booking my winter vacation to Ixtapa.  Later, as I watched the computer screensaver of random family pictures, I had a tear or two, but was then able to smile and start to remember the joy we shared.  It felt good to smile.

Does this mean I have no pain?  Not at all. Does this mean I don't miss Callum?  Not at all - I still think of him nearly every minute.  I would give  up my "new life" to have him back - in a heartbeat.  I would give up a lot more than that if it would mean he would come back to us.  But it won't happen.  Nothing can bring him back.  I now can only gain strength through his spirit and his memory.  I trust him, and that when he said it will be all right, it really will be OK.

It is still sinking in that I won't see or hear him again. Thank goodness for pictures and memories - they will help him live on forever in our hearts and minds.

I know there will be a lot of pain to come in the future. Holidays, special days, when Cade looks for his Grandad.  But it is so important for all of us to live, and enjoy a joyful and satisfying life.

That is what he wanted for all of us.

Some days there won't be a song in your heart.  Sing anyway.  ~Emory Austin


TTFN
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

Easter - new beginnings

Happy Easter! 

We are enjoying Easter in Medicine Hat this year. As time goes by and families grow we have had to be flexible and creative. This year our family Easter meal was a brunch. Our nephew Chris and his family graciously offered their home for the family get together. We brought some wifesaver brunch casserole and Erika brought some fruit. Along with toast and juice we were well fed! The weather is beautiful - blue sky, sunshine and warm enough to not need socks! I love it! The deer in the picture was just outside Vanessa's patio door this morning. Maybe not unusual in the country, but a real treat in the middle of the city!

It has been a good news week. We met with Dr Ahmad and had some preliminary results from the CT scan - nothing of interest showing, it has basically stayed the same. Callum's blood work was very good, with the exception of those nasty liver enzymes. Two pretty much stayed the same and one was up again. Callum also still has some of the numbness and tingling in his hands and feet. So, no Oxaliplatin for at least 4 weeks. Dr. Ahmad still wants to go ahead with the 5-FU (Fluororacil) chemo and he increased the dose a bit while there is no Oxaliplatin. The neat part of it is that the 5 FU is that it can be pumped through the IV in about 20 minutes. This means that Callum is at the hospital for only about 1 hour on chemo day. The side effects have been minimal again so that has been really nice. We are hoping there is no more increase in the liver enzymes. While Callum will say he is nearly ready for a break from chemo he really wants to keep on with it as long so he can to be sure to keep those cancer cells at bay! 

"Learn to enjoy every minute of your life. Be happy now. Don’t wait for something outside of yourself to make you happy in the future. Think how really precious is the time you have to spend, whether it’s at work or with your family." Earl Nightingale