The Equipment

We sent back the equipment today with the exception of the trapeze bar.  I do think that it is something that we will purchase.  Seems silly to rent at a fee of about $60 per month when we can purchase the one we have in the home for $300 – and likely our insurance coverage will pay a portion since my husband’s mobility issue is chronic.  The one we have here is set up and totally disinfected – so I think we go with what we have.

One thing that struck me about the last five months is how obsessed we have become about disinfecting things.  I remember early on talking about my husband’s prognosis with his doctor and she stated there were several things to be very careful about.  She commented that oftentimes it is not the cancer that kills the patient but rather something preventable – like infection or a blood clot.

With respect to preventing infection – the germ became our enemy.  As a family we became hyper-vigilant about sanitizing surfaces using cleaners with a disinfectant in them, ensuring that people who visited, or even we ourselves, regularly hand sanitized.  We have hand sanitizers at every entrance of our home, in the bathrooms, as well the communal areas of our home.  When my husband was actively in chemotherapy I was very direct about asking people to hand sanitize.  I also asked people who were not well to avoid visiting until they were better, our own children included.  No time for hurt feelings even though I suspect there may have been some.  In the end we wanted to avoid introducing any more problems into our world than we already had.  To this day when he is out in areas where there are a lot of people, my husband will still wear a surgical mask to avoid germs and in some instances, gloves.

At our first visit for treatment in the hospital’s Chemo Suite – before my husband even sat down I disinfected the area – the chair, table, arm rests, anything he might touch.  The attending nurse came over and said that it was unnecessary since everything is thoroughly disinfected between patients, as well as bleached by the night crew.  Regardless, we continued to do the same routine each and every time we went.  Interestingly, two nights ago we watched The Agenda on TVO which had a segment on about hospitals in Ontario and how they are not achieving the cleanliness standards they should be (Episode – Next to Godliness – December 16, 2014).  No doubt – since the vast number of people who walk through the door are sick.  I believe anyone who is immune compromised should wear a mask and use hand sanitizer frequently – you just can’t be too careful.

I opted to use a smaller syringe and load my own blood thinner rather than the monster needle used.  Imagine 90 days of having that jabbed in your belly!

I opted for a smaller syringe and to draw up the prescribed dosage rather than use the preloaded monster needle. Imagine 90 days of having that jabbed in your belly!

I did some research on clots after our GP had made her comment and was shocked to find that a large number of people do pass away as a result of a blood clot, even while they are hospitalized – and this is not just limited to cancer patients.  When my sister-in-law underwent emergency surgery and was put into an induced coma this is one thing that her son checked on very early in the process – to make sure that the blood thinner (aka Fragmin®) was administered right away. It was and she did just fine in this regard.  Unfortunately for my husband in early September my husband did develop a blood clot – the mother of all clots, since it spread from his ankle to his groin.  Once he developed it there was not much that could be done other than deal with it.  So thus we commenced the Fragmin® injection and continue with this injection to the present time.  Every day in the belly.  I have to say he’s getting pretty tender there, but again, he just deals with it.  Could the clot have been avoided? Who knows?  When he was first diagnosed with cancer, our GP had recommended as much gentle activity and exercise as my husband could manage while undergoing chemo, but the reality was he just felt too awful to do much of anything.  He was nauseous and his back hurt.  His back was, and continues to be, problematic and painful and consequently contributes his inertia when he feels under the weather.

There it is –  I am full circle to how this article started out – yup, I think we keep the trapeze.

The CCAC Support

This is the type of trapeze bar we have over the bed.  It provides assistance to shimmy into a comfortable position quite effectively.

This is the type of trapeze bar we have over the bed. It provides assistance and leverage for my husband to shimmy into a comfortable position quite effectively.

We are in a bit of a limbo with my husband’s care.  Since his picc line was removed we don’t need the visiting nurse at present.  Also due to the fact that we are doing our own investigations with respect to diet – particularly the alkaline diet, we are not using the services of the nutritionist provided by CCAC.  Sooooo what this means is that CCAC has closed our file.  The only issue with them closing our file is that we have loaner equipment in place in the house which we are no longer covered for since they have closed our file.  Yes they know he is still Stage 4, and that there may be future treatments and needs, but if no active services are being provided then the file closes.  Ironically I consider the provision of the loaner equipment as an active supportive service, but this is not how CCAC sees it..  Consequently the equipment goes and I have arranged for Shopper’s Home Health Care to come tomorrow and retrieve the remaining pieces of loaner equipment.  Problem is, I think that the removal of one of the pieces in particular is causing my husband some consternation.  His back, specifically his T6, 11 and 12 are pooched and so it makes it hard for him to shift his position once he is lying down.

Although we have our own electric bed for his comfort we requested a trapeze bar for over the bed.  This piece of equipment is quite wonderful.  My husband can shift an inch or two up or down or sideways without the significant effort that is involved without this support.  He tends to rely heavily on the bar to get into a sitting position to get out of bed, and even uses it to ease himself into a reclining position.  Although he is game to try and do without it, I think tomorrow when they come for the gear I will keep this one and continue to rent it on our own – if they rent them privately.  Just seems like such an unnecessary source of stress or discomfort to put him under if a few bucks a month will make it go away.  We earn money to spend it, not horde for some other time.  I think we may actually be in that “rainy day” scenario referred to in the saying “save it for a rainy day.”   I’d say I will see what he has to say when he gets up in the morning, but really I’m not likely to, I think I will just make the decision to keep it for a little bit longer.