Although this a public forum, this site is an international online support group for prostate cancer patients and their families.
The medical community has their own channels for blowing off steam and dealing with the stresses of their job, and they'll say things that are never meant to leak out.
Its only fair that we have the same facilities for dealing with the stresses of being a patient.
I have been pretty honest venting my frustrations over the last couple of days. If you live in Vancouver or BC and are treated at BC Cancer or know MO's or other medical staff at BC Cancer, I expect you to not create more drama by pointing external people to this site.
A lot of my statements reflect my emotional state at a point in time and do not necessarily reflect my actual opinions of BC Cancer or my Medical Team, which is very high.
thanks
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skiingfiend
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I would guess (maybe wrongly) that any person tittle tattling cannot be going through the same anguish as most of us on this site and possibly should not be here. We have to work with our consultants and medics and while we rely on their expertise it still doesn't stop us being upset and questioning if we are doing the correct thing at times. Hope any feedback you may have received has not caused you too much additional unnecessary stress.
On a totally separate note I decided to adopt a slightly different approach at my last consultation. I had a few questions I wanted to press for specific answers on. I know consultants are under extreme time pressures for dealing with each of us patients and have a certain amount they feel they need to get through at any consultation. So this time I listened patiently noting all that was said. The consultant finished and was ready to rush off to the next appointment when I said "I have a few questions - do you have time to wait and answer them". The consultant suddenly stopped and was all ears. I couldn't have expected anything better. I went through my questions very quickly getting answers I would not have got without asking direct questions and then let the consultant go - about a minute later than they originally intended, with probably both of us feeling we had achieved a lot more from that particular consultation.
That approach obviously depends on how the consultation goes and whether we suddenly hear something unexpected which might change our thinking totally. Just mentioning it as something I found useful.
After initial diagnosis and consultations went two years on Xtandi with telephone consultation from specialist pharmacist until spinal cord compression radiation. Since seen consultant or deputy every two months while maintaining xtandi prescription. Whenever see deputy I normally pass some comment which results in them going to check with my oncologist that they are still on right track. I have now worked out that they leave me to continue monitoring myself until something starts to deteriorate and then they will step in.
I agree, I don't need to see him to hold my hand and I would be happy not seeing them for 2 years at a time if I was stable. But I specifically called them in advance and advised them I was coming in with severe and disabling chronic pain.
That relates to one of the questions I asked at my last consultation. "Who do I contact if my health suddenly deteriorates and what do I look out for. If it appears to be increased pain that comes and goes who do I contact for increased pain relief". I agree that often I thought my cancer was progressing rapidly only to be told the pain had nothing to do with the cancer. Hence when I suffered spinal compression (MSCC) I went to A&E on the basis of pain and wanting to rule out MSCC. I think now I have a better idea of what to be worried about. Hopefully your approach will make progress for you.
No one that I know forced these "Consultants" (English not American description) in choosing years of education/training and then for them to just sit down on the job (profession). We need your help, so damn it help us NOW. If you can't stand the heat get out of the fucking kitchen and get into a profession that best suits your conduct, like Politics.
We had a fresh dump yesterday and everything is wide open. I live an 11 minute drive from the parking lot of the local hill we have seasons passes, "Grouse Mountain - the peak of Vancouver". Its a tourist attraction and kid magnet but we only ski on weekdays so there's never any lineups. Whistler is an hour's drive down the road but I've given up on it since I really only want 2-3 hours a day and not the full resort experience.
We had planned to start skiing this week but not going to be able to go until I get this lower spine bone pain issue cleared up.
One day at a time, enjoy the fresh and exercise if you get a chance to get out.
things work a little differently for my situation. My clinicians read this group closely and , due to circumstances, know exactly whom I am. I find this group to be an alternative route to my oncology and pcp staff to register my thoughts ( plus or minus ) back to my care teams. I recently used this avenue to clear up a negatively impacting medication change more easily.
I can get some attention thru the group that would be iffy, otherwise.
I guess it's like piglet number 1 teaching his brother, piglet number 12. Bite the teat, get no milk.....lick it and your stomach will be full......
I think Confucius said that in his latest movie or was it my latest fortune cookie...Why doesn't he give the winning lotto numbers? I swear I think I've seen the same numbers in prior cookies...Oh well....
Yeah I am normally not this aggressive but 4 solid weeks of chronic debilitating pain frays your nerves. Also based on my chat last week with the NP they think I have experienced testosterone flair on Eligard so lets throw that into the mix as well after being neutered for 14 months.
I call BS on the flare..unless your T return before you started Eligard. So MOs start men on Firmagon before switching to Lupron\Eligard instead of prescribing Casodex.So I'm suspect and you're not the first person who had issues with Eligard. Many switch to Lupron and have a better outcome with SEs.
1. When I first presented I had significant bone pain and needed a cane to walk.
2. I was doing great on firmagon+erleda. All pain cleared up I could do everything: ski, swim, golf
3. Then we switched to eligard+erleda while the other treatment was still working great. After a month the pain started to reappear and now 2 months later I'm using a cane to walk again.
How difficult is it to say 'hey maybe the switch was not a good idea, lets change back and see what happens'. I can't even get them to say they admit this is a possibility, let alone try it.
Yep. I get it. I'm fortunate that I have really good relationships with my RO, MO, URO, PCP. I trade bike stories with the RO, my MO knew my nephew thru Lacrosse, my PCP and I trade travel stories and my Urologist is just a great young guy who really gives a shit about his patients.
My MO is a little conventional and that's okay but my Urologist already told me he'd provide the T injections when it comes to doing BAT.
Anyway, I hope it all works out for the best...sounds like you're going thru a rough patch.
hey brother …. Everyone here pretty much “ gets it “ when any -all of us rant sometimes. Boy howdy. You are among brothers here , whom better than people like us to do that with !!! Just say’in .
I didn’t think you sounded aggressive, as much as stressed , in pain and irritated. This is palliative care for most of us, you deserve to vent if they don’t keep you comfortable.
Have you checked with your pain management team ? I’m on opiates several times a day. Dunno how I could get by without them. Ugly thought for sure. Quite a few here argument their pain relief with marijuana or delta-8 derivatives as well.
I love your disclaimer at the end of your post too .. a tool I frequently use too, just in case yayayay yayay. .
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
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