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

What a Difference Two Weeks Makes!

Well thank goodness I had already prepared the 100th blog and only had a few minor changes and edits or most likely there would not have been a blog ready for last week's 100th edition. Let me explain further.

We have been planning a family vacation for some time now and last week was the week! We had booked one beautiful week at a cottage up in the Haliburton Highlands outside the town of Bancroft. We were all looking forward to it, time away from home, getting back to nature and hopefully some time to take our minds off our life circumstance and just relax and maybe get out on the lake. The weeks leading up to the vacation did not look promising as my aches and pains did not provide me with my comfort and we worried that I couldn't make the car ride and the fact that we would be two and half hours away from the larger hospitals. Michelle even asked if we should postpone or cancel but we make the decision to continue on (we could always turn back or come back home if needed), besides there was a small hospital in the town of Bancroft that we could get to. It would be all right, but I knew she was uncomfortable with the plan. We packed up the car (to the brim, I might add) and made our way. Josh and our dog Lily stayed home because he had to work and we knew Lily would add extra stress at the lake. Josh would be joining us later in the week. 

Michelle drove us all up to the cottage and we made it there in record time. I started to get chills and the shakes in the car ride up (thank goodness for Lily's blanket that we found in the back seat) , but it was a very hot day and we had the air conditioner on full tilt, especially so it would reach Jon and Sophie in the back seat.  We didn't think too much of it, because Michelle was also cold in the car, and thought perhaps it was the A/C.  When we arrived, I did what I could to help them unpack the car, but still felt chilled, so I went straight to bed. I kept saying how cold it was in the cottage, but that didn't make sense as Michelle and kids were hot, and did not find the cottage cold at all.  

I developed a high fever on the first night there, but it came down with tylenol and advil.  Michelle and the kids wanted to pack up and go home, if it wasn't for my stubbornness, I think that is what we would/should have done.  But to be honest, I downplayed it, and said we should try to stay. The fever did go down on Tuesday and we spent some lovely time during the day down by the water (although I did spend most of the day in bed too). I was feeling warm Tuesday night, my temp was just under the fever threshold of 38, but clearly something was not right and at 2 am, Michelle had the kids packing up and on standby ready to go.  She had already scoped out the nearest hospital, but again the temp came down hovering around normal, and I wanted to wait. Actually I was adamant that we wait. I did not want to ruin the family trip.  By Wednesday the fever had returned sitting at the threshold of 38 (it was heavily raining and wet), Michelle came into the room and quietly said, we can be packed up and ready to go in 5 mins - I need you home and in Newmarket. Bad things don't just go away, fevers just aren't a symptom to be ignored.  I finally agreed, and we packed up and came home. To be honest, I just wanted to crawl into my own bed.

After consulting with our medical team  we headed to the emergency department as we were getting quite concerned about what was happening. Princess Margaret Hospital was calling ahead to ensure they knew my medical history and that we were coming.  To make a long story short, after spending fourteen hours (that is not misprint, 14 hours - 13 of which were in a chair and crowded in a waiting room in the ER), I was finally admitted to the hospital.  For 1 hr of the wait, we had an exam room with a bed in it, and there was no way Michelle was going to let them kick us out of the room until I was admitted!  We were able to turn the lights down low and I was able to stretch out and have an ice pack, which helped a lot to make me more comfortable while we continued to wait.

They have done a series of tests during that fourteen hours and now that I've been in hospital as well as running a cocktail of antibiotics. The news that we were hoping not to have to hear (for quite a bit longer), were finally being spoken to us. The tumours were continuing to grow.   I would be moving on to palliative care focused on pain management rather than fighting the disease itself any further.

I am still in the hospital for a week now, trying to find the correct combination of painkillers to live as comfortable a life as possible and make sure the antibiotics are fighting the infection.  I want to be at home, and for a long as possible.

As devastating & disappointing as this news is for me and my family, we can still be proud of the battle we gave. Like so my people  before us and so many long after us, it is worthy to try and fight it, there are many medical advances, but cancer is an equally worthy opponent. 

We are now in the process of palliative care and with what this  means for me and us, as a family. In the weeks and hopefully months to come we will shift the focus of our blogs in this direction.

We hope you will join us!

Richard

Pain in the @#$% !

Well this second clinical trial treatment is certaining hitting me harder than the first or any other previous treatment really. Hopefully that is a sign that things are working and making a difference! I am tired, irritable and can't seem to get comfortable for any length of time. I am napping more than usual and just don't seem to have the same level of energy that I used to have. 

It has crossed my mind, that this may not be the new treatment at all that is causing this discomfort and irritability, but is an evolution and the progression of my symptoms with time. On the other hand, or glass half full perspective -  perhaps my new treatment is working and is fighting my cancer on the inside and this pain is the price to pay on the battlefield. I am hoping that it is the latter of course and all this discomfort will be worth it -- that it is making a difference and is actually shrinking my tumors. 

One of issues I am having this  this time around is back pain (and well something else we don't often talk about, constipation).  Dealing with the first issue - I don't know about you but next to ear aches, I find back pain  most frustrating as you can't really solve the issue. You can subdue it for awhile but it always seems to come back. It is not debilitating pain (at the moment at least) but a constant annoying pain that increases and decreases in intensity throughout the day (or the night for that matter). It is the type of pain that doesn't let you get very comfortable either sitting or lying down. The problem with taking pills to help with the pain, is other complications start to occur.  For example, one of the side effects of the codeine is it can cause - yes I am saying it in a blog - constipation. They sure do!  This is also a potential side effect of my immunotherapy medications. A double whammy. Yippee! Which brings us to my second symptom, a real pain in the @#$%! It seems that to try to solve one problem, you create another one!  Not really a great topic of discussion really but I promised to be honest in my blog and wanted to share some of the negative sides to having cancer, beyond the cancer itself.  I have never been the type of person to take numerous medications for my ailments, but my list of daily pills and supplementary pills is beginning to grow.

I am back to taking some meal replacement drinks to supplement my calorie intake. Despite being stubborn, reluctant and holding off for a long as I could, I had to admit defeat and return to using them to help provide me with my daily nutritional needs. This brings back memories of the beginning of my cancer journey when they were my primary source of nutrition. I hoped to not return there if possible.  

Overall I should not be complaining as I am sure that there are many other cancer patients out there that have it much worse than me in terms of side effects and pain and wish this was all the side effects that they had. I shouldn't complain really, in fact I need to come to the realization that it may get much worse as time goes on. We shall see. For right now while there is pain it seems bearable and manageable and I can live with this level of discomfort. 

100 Blogs!

Next week is a special week for My Personal Cancer Journey blog as we celebrate 100 blog posts. I can't really believe we have reached this milestone and I never expected to still be here writing this weekly blog for this long. An amazing milestone for sure.  Be sure to check out next week special blog post.

In the meantime, as the saying goes:  "no pain, no gain" right? Let's hope so. 

Richard