Changing Oncologists

For the last 5 months and 12 treatments , I have been followed by Dr Assela ,( now I am unsure if it is acceptable here to write his name, In canada they are public servants and as such maybe its different here then in other places, if its a problem i have no issues with mods asking me to edit it )

He seems to be  a good oncologist , he is the one , at the tumor boards, that convinced to others to do chemo first. From the beggining i found him to be somewhat timid, and not a very engaging bed side manner. I have read often about how important the relationship between cancer patient and oncologist is , because he will be my  , doctor for life, as one nurse said.

So I told my family doctor , and his response was very helpful..but a tad confusing

no one likes their oncologist... try to picture him as the techie, the nerd on your team.

And..yes, i could see how that fits. I see him for a total of 15 to 20 minutes every 3 weeks , at this time.... and he was right, the tumor is shrinking ...so we know the chemo is working to kill the cancer cells.

So i in a way, reluctently agreed that his part in my fighting/medical team, did not require a strong connection... like it does with the nurses , support staff and volunteers at the royal victoria oncology day center.

Until...yesterday.

For about 6 weeks , I was having intense headaches, that were non stop for about 60 hours. Friday night till monday morning. I did mention it to my oncologist but he blew me off. I then mentioned it to the nurses... each week getting more desperate for relief. The throbbing and intense tightning around my skull is frightenly excessive. The nurses offered all sorts of combination over the counter pain medication cocktails. Some worked better then others , but none gave me enough relief to sleep or have any sort of quality of life turning those hours. As well, my mental health status was getting worse and at the beggining of this path, it was on my goal list......Come out of treatment with as little impact to my mental health as possible (I am bipolar/depression/ptsd ). Going into treatment , I was very balanced, but knew that the chemo might force me to stop taking my meds and around christmas time, i stopped taking them regularly , due to them making my side effects worse, because they aggravate the stomach/kidneys etc. Ice packs, are the only consistent, immediate pain relief..

So this week, before treatment, I told myself , i was not leaving until I got some kind of heavy pain killer drug , to just knock me out for those hours. My husband is home during the weekend to take care of me. I was not seeing the doctor this week  so i intended to meet with my pivot nurse to see what we can do.

There are three treatment rooms.. 1 very busy... 1 a little quiter.. and one very quiet///they are called , Treatment room, Hotel and Condo.

I was in the Condo this week.. it only has 5 treatment chairs, and 2 nurses. it is the quietest of all three. So when the nurse was on the phone with Dr asselah  , i could hear her side of the convo. Though Kim, my nurse, was not saying much, i could see that she was not satisfied with his response.

He said , he is to busy to come and that i should go to the emergency room...

Emergency room... hmmm... is he serious??

Canadian emergency rooms are a death trap of virusus... and this is an oncology problem, obviously since the syptoms are every week, 48 hours after EVERY Taxol treatment. The other nurse in the Condo, Trish, said out loud...

This is not acceptable, this wont do, i cant have you leaving here with 10 on 10 headaches..

So she paged him again... here is a description of what i heard (she was not trying to be discreet either, she wanted me to hear and did not seem to mind that there were  other patients int he room )

Dr Asselah , this patient needs some help, is there anything we can do for her?.....

Ok.. so to make sure i understand.. you want to cancel the taxol? and she should go to emergency where they will do scans etc?

(She is looking at me and at that point i say that i refuse, to cancel the taxol, the lines were already set up and i had had the premeds )

So, let me get this clear doctor, you want me to makean appointement for her to see you friday?

This was an acceptable comprise, since the worst does not start till saturday morning.. but to be honest, at this point, i felt... let down. The first time on this path... that i lost trust in any memeber of the team. 

Thats when i decided to ask to change Oncologist. I never see my doctor, in the treatment rooms. There are about three other docs that are active in the room and anytime i needed to talk to a doctor during treatment, one of them would see me, but i could tell they were reluctant to do so , in a sense, i could understand why... they are all busy, i am not thier patient.

I was given the information to contact his superiors , but i was also told by my pivot nurse that i would have to , fess up, and tell Dr Asselah myself...

I said...

No I dont, in my current mental health position, something like that would trigger me and i owuld be in crisis. I will not personaly tell him, i could if you wish write a letter, but there is nothing that forces me to confront him with this.

Isabelle.. my pivot nurse.. is great. It was 4pm, and she managed to find me another doctor, and he has given me some perscriptions of Benilyn (its one of the pre meds they give me, and i always feel great on treatment day) and a high dose of advil (600mgs).

I have learned a lot in the last 5 months on , breastcancer.org , this helped me to stick to my guns and get whats best for me.

I also want to thank my sister Cathy.. she was a great in dealing with the staff, making phone calls and expressing her anger in a healthy way... had i done it, might have had adifferent out come. I cannot say it enough, support is a very import variable on this path....

every cancer patient should have a cathy!

Many nurses came by to see how i was doing... i could tell by their behavior that, this is not the first time a patient has an issue with this doctor.. and if patients are having issues.. i can just imagine what working with the man must be like. A complaint from a patient has a lot more impact then from staff.

I will update next week , and hopefully by feb 20th (my next doctors app) I will have a new oncologist...