Kathryn's Cancer Blog
Not quite what I expected!
It has been 3 months since my last rad/chemo treatment. December passed pretty much in a haze of pain. I kept waiting and praying for the light at the end of the tunnel. My skin slowly healed over, my diarrhea wasn’t quite the excruciating experience it had been and I realized that I had pretty much skated through previous treatment. I tried so hard to stay positive and strong, but the nausea and then picking up a flu bug had me really down. I developed a cough that wasn’t a constant thing but very occasional and not at all productive. I discussed my symptoms with my Rad/Onc at my checkup the first week of January. He suggested that I go to my family doctor and have the cough checked. I did and the family doctor prescribed antibiotics for a very mild form of pneumonia. Well no wonder I felt lousy I thought – there is a light at the end of that tunnel after all. 15 days later I am being admitted to hospital with an infection in my lungs and in my blood! I’m still trying to stay strong and positive but it is starting to get to me and wear me down! I had some pretty weepy moments. The IV antibiotics 4 times daily is starting to work – the cough is diminishing and the blood infection is not growing any new bugs. Do you sense the but that is coming? A very young and eager resident decides that he needs to examine my abdomen for something. I caution him that I have just finished 35 treatments of radiation and am very tender. His idea of taking it easy is something akin to psychic surgery – I let out a couple of ladylike screams and he backed off – but not after doing some damage I think. Now I have pain – lots and lots of pain. I tell them I think I need some strong anti-inflammatory drugs just from the way my belly is starting to bloat and of course they give me morphine??! Doesn’t work – they don’t get it – I am beside myself with pain and anger at them. Finally due to a medication screw up all I am able to have is an Advil and 1 mg of dilaudid. It works! Pain is controlled now. I am released from hospital 10 days later with not many answers, lots of questions, lots of resentment and lots of appointments. My first call is to my med/onc. He immediately orders a ct scan – did I mention I had 2 in the hospital? I go for it anyway. I go to the followup appointment and get no real answers. They see some inflammation, could be from the infection, could be new lymph node involvement, could be the cancer growing, can’t tell yet. Lets wait a couple of weeks to see if it settles down and then do a biopsy if needed. Oh and by the way the lymph nodes that the chemo/rad targeted had all shrunk and there was no sign of the tumour in the anus. Yaaaaaaaaay (sort of). So here I sit waiting for the infection to settle down, my right leg has so much edema that it is 3 times the size of the left leg, I am taking so much advil that the doc prescribed stomach medicine to protect it, I can hardly wait for meds every 4 hours and nobody seems to know what the hell is going on.
I feel so let down by my medical community. I felt as though I was totally on my own after treatment had finished. I had no information on how I should be feeling and at what bench marks I should be looking at for progress or a lack of. It took a hospital admission for me to get the cancer doctors involved in my care again. How can a general practitioner understand all the nuances of radiation and chemotherapy and how and when they can cause side effects? How is it that my cancer center can classify you as an active patient but no longer in treatment and therefore unless directly related to treatment any symptom of anything must be checked by the family doctor first.
I can honestly say that while I did not lose hope that I had been cured – I can tell you that I had some very dark moments. I felt like a total fraud at times – stay strong blah blah blah – all the while I am cursing the medical profession and our system here in Canada. When | had the energy I trolled every website I could find that would give me some indication of when I could expect to feel better. I have no answers. I know everyone is different, I know everyone reacts to treatment differently, but there must be some general guidelines to indicate that if you still feel like sh.. 3 months after treatment that there might be something going on that should be checked out. But I guess I am asking too much.
Thanks for the opportunity to rant. I do believe a positive attitude makes the world of difference and influences the outcome of treatment. Its just taken a back seat to disillusionment in the medical system at the moment.
The games we play are pretty sick sometime. If your not getting answers,keep asking, keep calling until someone listens.I really hope things calm down for you, It can take a long time.
Posted on Kathryn..I am so sorry to hear all you have been through. You are incredibly strong. I will keep you in my prayers that all your pain and other problems go away, esp the cancer.
Hugs,
Mari
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