It Takes a Village

It takes a village

Prologue

In August I was diagnosed with brain cancer GBM multiforme wild type, the most aggressive brain cancer. It certainly made me look at life in a different way. My oncologist, when I asked him what to tell people, he said it’s a game changer and I need to let everybody know. This blog post is really about all the people that have been supporting me along this crazy adventure with brain cancer. I just finished reading a book called Ignore the Fear by a woman named Fiona Quinn who paddled up the West Coast of England from Land’s End to John O’Groats, and she said one of the most important things for her was her support team and that is the same for me. My support team is critical, so I wanted everybody to know who they all are – hello my village! – and at the same time I was thinking that everybody else looking on can understand how much people are giving up and sacrificing to support me.

Let’s start with my family:

My Rockstar husband Dave. Throughout this whole journey he’s been trying to work because we need the insurance and the income, I guess. So, between his meetings with his work colleagues, he makes me food, sorts my medications (which is quite a chore), takes me to the bathroom, and fits in any of my appointments that I need to go to. He’s definitely building up his muscles carrying me from place to place.

Dave and I have raised four amazing children who are now trying to raise their own families as well as take care of me, so let’s see what it is they contribute and how much they are sacrificing in order to support me.

I’ll start with the eldest born, Thomas. Thomas is also trying to maintain his career and work through all this, so he will come down and spend bring his computer with him and work remotely from the living room which is pretty amazing. When he comes, he brings his wonderful wife Kyla, and their beautiful son, Rex. Rex likes to read with me in the mornings, my pleasure of the day when they all come. They also make lovely keto food that we all enjoy!

Then we have Anna and Steve and my beautiful grandchildren, Sophie and Roland. They are also building their family but have managed to find time for Anna to come every Wednesday. I really appreciate that Steve is able to work from home so he can take care of the kids while Anna comes and takes care of me every Wednesday, and she does a great job. I give her list of tasks to do, and she always completes them. Things I’m not able to do any more like watering my plants and tidying up the rooms.

update

Then Daisy, who works for the Bellingham fire department. She recently got married to an amazing man, Mark and became stepmom to two wonderful children, Morgan and Merritt. Together they are working on building their dreams. They’re planning and building a tiny home on the property they bought in Whatcom County, so between building a tiny home and working, they come and spend time with me. They like to sit with me and talk to me and take me on walks.

Now my baby Jonathan and his girlfriend Kelly. Jonathan met Kelly through a shared passion of tabletop gaming, particularly Pathfinder. The poor woman got thrown into this crazy family just as I was diagnosed with the brain tumor, but she is amazing, and she has dealt with it really well. We laugh that every time she comes for dinner we’re always crying. She seems to take it in stride and deals with it with it well and we all love her. Jonny and Kelly come after work and college to sit with me and take me on walks Kelly is doing her degree at the UW, but she seems to be able to fit in that, her work, and being with me too and with Jonathan so that’s awesome.

Next in the cast of supporting people is my family in England, Scotland, Germany and Australia. They’re fabulous. They send me videos of sheep, lambs, and children, and keep me up to date with what’s going on in their lives. I always look forward to those videos and voice messages. Many of them are planning to come and visit so that will be a lot of fun too.

Last but not least in the cast of characters is my fabulous community of friends. They are so willing to do anything; they bring me breakfast muffins and soups, come sit with me and talk about podcasts and knitting, and tell me about their adventures which keeps me going. I like to live vicariously through the ski trips and whatever else they’re up to. I also get beautiful morning messages and random messages during the day with tales of encouragement and support which is absolutely fantastic. There is often something to ponder when they send me the messages and I really enjoyed that, it lifts my spirits. This goes equally for the friends that can be with me in person as well as the ones that can send me messages from afar. I appreciate them all!

Dave says this blog post is a stream of consciousness, but I want you to understand that I have an amazing support network that keeps my spirits lifted, and I truly appreciate everything they do for me. There’s no time for me to be miserable, and no reason, I’m very lucky. I have no reason to be miserable or sad or unhappy with all the love I feel from my tribe. I am one lucky woman.

Here is my daily routine:

I’m usually awake around 7 or 8 in the morning. Dave brings me tea and toast in bed, which is so amazing and lovely and just what I need when I wake up.

Dave often has work meetings, so I sit in bed and do my blog, read, meditate, and whatever else I’ve got going on.

After his meetings, Dave makes breakfast and we sit and eat together.

Next is the fun of getting dressed. Most times it goes well, and it always makes us giggle.

In the afternoon is when I do a lot of napping and visiting with people and going out for walks (recently  in the wheelchair) which I really enjoy.

I spend a lot of time looking out at the garden and watching the sparrows pop in and out of the nesting box. I’ve become proficient at spotting the hawk in our yard too.

The evenings are the hardest as I have to get Dave to take me to the bathroom 3-5 times in the night. It is quite the ordeal. I worry that he does not get good sleep.

In the morning we start it all over again. Throughout each day I’m constantly grateful for the support of my entire cast of characters. I hope this blog post gave some insight into what I’m doing from day to day.

Turn thatfrown 🙁 upside down.😏.. flipping the thinking.

One of many lessons that I have learned from my good friend Anne, is that it’s important to flip my thinking when I have negative thoughts. Honestly, recently not very easy at the moment but I try all the time as it’s much better for my health, my mental health, everybody should give a go! This idea is constantly backed up by the meditations that I do which teach us to be in the moment and accept the moment for what it is. However hard that moment might be. So my next blog post will outline the lengths that my community are going to in order to support me. They are living their own lives but making space and time for me too.

I am writing the next post almost like a play! As this is how it feels at times. So hopefully you all can understand the craziness that is my life right now but also the most beautiful I can imagine.

Update:

We are all anxiously awaiting a decision on the ablation surgery and next steps. Honestly it is pretty stressful for us all! However this week I have an MRI and a visit with the oncologist so hoping we will get some decisions!

On vulnerability

The big reason for my exploration is that I feel very vulnerable right now.

Why?.

  • Hard to walk
  • Hard to dress myself
  • Cant get up on my own at night
  • Cant make food
  • No driving
  • Cant use myleft arm.
  • Cant paddle

I am no expert on this but it keeps popping up for me so I thought I should explore it

Also I get asked a lot about how I am feeling and never quite know how to answer as that also feels vulnerable. So I say… fine, crap, okay, or I have felt better!

Sharing vulnerability deepens our relationships.

Tamara Leavitt has a meditation on vulnerability and suggests that next time when asked, that we sit with the question before responding. Breath and observe.

Embracing vulnerability deepens relationships. And improves our self awareness and understanding

Bringing us closer to our truth.

Brene brown, queen of vulnerability research says; “vulnerability is the birthplace of ❤️, joy, empathy, authenticity, and belonging. It is the path to a more deep and meaningful life”.

So next time I am asked how I am feeling I will sit with the question and decide how I want to answer with authenticity.

Interestingly, both Anna and daisy talked about this and posted on Instagram because on the one hand life right now is fantastic. Our family is close together supporting each other and there are so many great things going on. Mark and Daisy have great plans for their properties and plans for their future and my grandkids are thriving and wonderful but on the other handlife is pretty shitty that I’m so sick, so life is good and also life is not good and that’s the reality of our situation. We can’t change it so we have to navigate through as best we can. With grace, strength and courage. Together ❤️

My UK 🇬🇧 family get together ❤️
Phil, Tom, Debbie, Daniel, Tim, Katie, Simon
Love blossoms with Ben and Maria
Family help with walking
Help with paddling