Targeting Pain Relief

This week's blog is co-written by Michelle and Richard. 

It's been a longer week than normal for me.  I've spent most of the time sleeping in my bed upstairs and struggling to manage my various pains - in my back, in my neck, all over really.  Once it starts to gain hold, it's really hard to get back on top of it.  We have tried different drugs and treatments, and finally we think we have a solution in place to solve the pain issue.  One thing about pain meds is that they also make you sleepy, and also create other side effects and problems as outlined in my previous blog post, Pain in the @#$% !

This week has also saw progress in other ways - I now have a hospital bed on the main floor to make things a little easier for me, as well as a shower bench, a walker and a wheelchair (just in case I will need it).  I have a nurse coming in daily and she provides much needed care for me and support for Michelle.  She has been with me during these days of sorting out my pain and other symptoms and so it is very helpful to have this continuity of care.

In addition, my care has been streamlined.  My pain meds are now managed with a pain pump and my meds are cut down to just the essential things to give me comfort and care.  This has been very helpful as I've had a bit of nausea, so now we are by-passing that and the drugs get right where they need to be and when.  This takes a big burden off of us as we had a large number of pills and different timing to take them, so this is all much easier now.  Less running up and down the stairs for Michelle.  We also have our Dr. come to our home as well as other essential services, again making things easier and able to stay Home Sweet Home.

Though things have declined for me this week healthwise, there continues to be hope as other things get more manageable - such as my pain.  I had to cancel a number of visits this week with family and friends which was very hard for me to do.  Hopefully we can get these re booked over the coming weeks.

I'd also like to thank all of you who are dropping off goodies for our family - I've had a number of butter tart deliveries - how did you all know they are my favourite!   We really appreciate all of your efforts - life is so busy for all and that you took this time to bring us some sweetness is overwhelming.  

Sugar seems to give pain relief too!  As Mary Poppins would say " just a spoonful of sugar, helps the medicine go down" and it really does!

Richard & Michelle

Journey vs. Battle

When I started my cancer blog over a year ago now, I struggled with what terminology I would use to discuss and share my own personal experiences along the way. Was it a cancer journey or a cancer battle? Was I fighting and battling cancer or was I dealing with a disease that would change my life. How would we handle it? How would we navigate what was yet to come?

Before starting my blog I skimmed some other cancer blogs and found that most were referring to their journey as a 'battle' or 'fight' against cancer. They included a lot of war terminology that seemed harsh and inappropriate to me at the time but now that I have been on this journey and have experienced all that cancer brings to my life and my family's life, it really is an accurate metaphor for the journey. I had purposely chosen to use the word 'journey' instead because I preferred to use non violent terms of reference and wanted to remain optimistic and positive throughout the posts but make no mistake this is a battle! This is the fight of my life, so I thought for this blog, I'd try using the battle analogy - maybe it reflects a little how I am feeling today!

Mission Possible?

Right from the start of this journey/battle/fight we were given terrible odds of winning (or surviving really). When you are told that you have three months to a year to live at your first appointment with your oncologist, your heart sinks, you feel hopeless and finding the will to 'fight' on doesn't really enter the picture at that particular moment in time. Surprisingly after the reality and scope of the situation finally does sink in, you quickly realize all that you have worth 'fighting' for, you regroup or pivot, you plan your 'strategies of attack' and your formulate the 'ongoing battle plan' to 'fight' back against this worthy enemy. 

Using Every Tool Available in my Arsenal

From the beginning of my cancer diagnosis, my  team has used every treatment option available to 'battle' my cancer. I have gone through radiation and three different chemotherapy treatments and now two clinical trials. Although my cancer did 'retreat' back a few times during these treatments, it ultimately fought back and moved on to new battlegrounds in my body. As Michelle likes to point out and remind me, we may have lost these battles but they did provide me/us with additional time and I am still here today fighting on, twenty one months later, still able to talk about the fight and still able to battle on. It's not over yet!

Collateral Damage

I have experienced some side effects as a result of my treatment regimens that have included an ongoing compromised immune system, various side effects with various levels of discomfort, pain and intensity.  My body weight continues to fluctuate and has once again begun to decrease due to an ongoing lack of appetite and some difficulty swallowing. Increased pain and soreness in various regions of my  body and some sleepless nights are the new norm for me I guess. 

One piece of collateral damage for cancer patients that doesn't get talked about much is the emotional side of cancer and the toll that cancer takes on the patient, caregivers and family. Your emotional quality of life and that of your family suffers.  You are constantly fighting off negative emotions, moments of despair and melancholy. You are scheduling your life between appointments, treatments and recovery days. Your hopes and dreams for the future are pushed to the here and now. You see others that are moving forward with their lives and planning for the future, exploring fun and exciting retirement options and you just can't help but feel a little jealous and envious of them. We should be doing this too! Your children's lives are also impacted by the 'battle'. Although they try to move forward and continue on as normal as possible, it's not normal and will never be normal again. Cancer is not going away. The worry and concerns are always there. It is hard to focus on your own new exciting life journey when they see the struggles and worries in their parents.  The lingering cloud of what is to come is always just a thought away.

Army of Support

Every 'war' needs a strong army to 'battle'. I can honestly say that I feel that I have a strong army of support with me, every step of the way. I am so thankful for the 'army of support' that we have received along the way. This blog has allowed me to share my journey and in turn learn about the personal 'battles' that many of you are facing or have faced yourself. We have come to realize that you can not fight this 'battle' alone and that it takes a community of supporters to help along the way. We are so grateful to have you by our side and for your words of encouragement, support and prayers. 

Fighting the Good Fight

We will, as a family, continue to 'fight' the good 'fight' for as long and as hard as possible. It has not been easy. This is a battle of wills and I can be very stubborn if I have to be!

Whatever I/we choose to call it, it is the fight of my life. I am just a stubborn as cancer can be. 

"We will never surrender!" ~ Winston Churchill

Thanks for supporting me along the way.  

Richard