Cancer/Life Update: Neuropathy and disability application woes

It’s been an interesting few weeks and I’m totally behind on writing because I’ve been sick, so I figured I’d scrawl out a quick and dirty update about how I’m doing.  I also just wanted to quickly note that, due to illness and my boyfriend’s visit, I won’t be doing a goal review post for March.  Everything’s been a bit on hold recently and I think there will be more value in evaluating my progress in April.

Chemotherapy fucking sucks.  There really isn’t any nice way of saying it.  Whenever people ask me how I’m doing, I cock my head to one side and say “eeeeeh.”  I’m surviving and I’m putting one foot in front of the other but, to be honest, chemo just gets worse the further into it you get and that’s hard to explain to folks who don’t have first hand experience.  You feel hopeful, because the number of treatments you have left keeps getting smaller, but you also know that you feel a helluva lot worse than you did when you first started and that you’ll feel even more shitty by the time you’re finished.

I’ve had 8 chemotherapy treatments so far.  If all goes well, I have 4 remaining.  I hope that I won’t need any further treatment after those 4 infusions are completed, but even if I finish there, recovery is not going to be quick or easy.  I’ve been thinking more and more about recovery and survivorship recently and I’m more than a little scared.  When I first started chemo, I knew nothing about long term side effects and I thought that, if all went according to plan, I would be back at work soon after finishing treatment.  The neuropathy in my hands and feet says otherwise.

I’ve said before that the neuropathy in my hands has been a bit better.  This is partially due to the fact that my dosage of Vinblastine (the drug that causes the neuropathy) was reduced by 20%, but it’s mostly behaviour modification.  Sometimes I wish I could show folks how my hands feel, but basically my fingers are numb and tingly, like they’re asleep all the time.  This doesn’t bother me when my hands are at rest, but when I touch something, I can feel the tingling.  My grip strength has been greatly reduced and these symptoms worsen the more I use my hands.  If I type too much or work too much doing anything with my hands, the numbness increases and I have pain in my hands, wrists and forearms.  I’ve had to stop knitting, colouring, doing any arts and crafts, and playing most video games.  I can’t really cut tougher foods like steak without help and eating with chopsticks has become difficult.  I’ve also limited myself to cooking very simple dishes, though fortunately my mum has stepped in to take over most of the major meal prep: chopping and peeling for any length of time is nigh impossible.

My feet have also been showing signs of neuropathy, but it’s mostly been showing up as stiffness, pain, and cramping. This has worsened a great deal over the past few weeks and has limited what I can do in terms of physical activity — even just walking seems to make the nerve pain flare up.  I’ve been having these issues to a much lesser degree for some time now, but I would only get random sharp pains and a bit of stiffness — these days it’s far more frequent and consistent.  The pain is difficult to treat because it isn’t consistent and doesn’t respond to basic pain killers, such as Tylenol.  Due to my behaviour modification, I’ve been able to avoid medical cannabis so far, but I think I may have to go in that direction soon.

I don’t have any moral issues with using medical cannabis, but I will have difficulties paying for it.  My short term EI illness disability ended in early February and I have been without income since then.  I do have some support from my parents, but my long term disability application is in bureaucratic limbo hell.  I had been on my company’s benefits plan for just short of 1 year prior to my hospitalization.  As such, it’s standard procedure for my benefits provider to conduct a huge investigation to determine whether my illness was a pre-existing condition.  In order to conduct the investigation, my benefits provider had to request my complete medical history from the provincial government and my family doctor.  The records recently came in from the provincial government, but my family doctor’s office has completely dropped the ball on sending my records to the insurance company and there is a ridiculous dispute going on between the two about the cost of forwarding my records.

Given that I will likely be away from the office for substantially longer than I had previously imagined, the idea that I might not have any income for the majority of that time is extraordinarily stressful.  I have bills that need to be paid, medications that need to be purchased and a life that needs to be maintained.  Waiting around for someone to investigate whether or not you’re trying to scam them by claiming you have cancer is insulting and heartbreaking and not being able to support myself financially makes me feel like I have even less control over my life right now than I actually do.

I’m hoping that all this will be resolved soon, but something tells me that the long term disability application is going to continue to be a huge thorn in my side for quite some time.  I wish I could find more information about how to approach my claims specialist, but I really have no idea whether I should be verbally stomping on her neck or if I should try to be nice so she doesn’t stall my claim even further.  I don’t really want to get a lawyer involved.  If anyone has any experience with this sort of thing, please feel free to contact me privately — I’m interested in hearing your story.

I have a PET scan scheduled for tomorrow, which I hope will give us all a better idea of how my treatment is progressing.  I should have the results by the end of next week and will update when I can.

 

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