Canadians in British Columbia
Comments
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Bamboo girl - I have Christine Simmons as my oncologist and I love her. She is warm and compassionate and definitely takes time with her patients. She never ever rushed me and I always had a fair amount of questions/concerns at each and every visit with her. I had Dr Kuusk as my surgeon and I found her to be a delight - very confident, competent and caring. My RO is Lorna Weir and again I like her a lot - takes time to answer all questions and concerns.
Like someone said - these MOs are all so busy. I made it very clear at the beginning of each appointment that I had concerns and questions - never left it until the end of the appointment. Also having earlier appointments is a good idea.
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I also have lorna weir ive had her for over 14 years when I had rads for my firsg bc I have bee followed up with hrr ever since as a matter of fact it was during my regular mamos last july and appointment that she examined me right afref my mammo and found a lump that the mammo an hour before didnt pick up a week later she calked to give me the news tnbc so I was sent to dr mcfadden which I highly recommend to do the bmx then to dr villa as my mo as soon as my chemo finished (forced to stop) I went right back to lorna as we know each other very well and I think she is the best ro the vancouver cancer clinic has
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Marianeelizabeth, No I was not assigned to Glemon. Due to my enourmous 10 by 10 cm IBC they had to get the big guns out and I got Dr chia, who was very aggressive with treatment which was good but he was totally off limits when it came to any complementary ND medicine. He just didn't want to hear about it.
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Got my script for Scream Cream today, ladies!
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finally have a date with the RO on the 5th of June...should be done by the 26th....told work i would most likely be back by sept 3 part time...oh where does the time go.....oh yeah...more appointments...lol...
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sneaky - I have heard about Scream Cream - is it a vaginal lubricant? Was it your MO who gave you the prescription? I am interested in getting some. Can you tell me exactly what is in it?
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Got my cream a couple of weeks ago.. Decision is still out, Thinking maybe the pharmacist forgot an ingredient adagio I will PM you the ingredient list
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Too funny, Ossa. I'll report back in due time as well.
Adagio - it was my MO who prescribed it, upon my request. They had to look it up (did so right there during my appointment), but approved it after doing so. Macdonald's Pharmacy compounded it, but I forgot to pick it up after today's radiation. It cost $40, but I'm unsure how much I'll get for that. I'll let you know.
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Aha, MacDonald Pharmacy. Ossa and I were having a conversation about it on PM. I decided not to ask my doctor yesterday; just was not high on my list but I will certainly be interested in hearing reports. Seems you don't get much for your $ but maybe you don't need much? I think SHE is the authority so hope she weighs in too!
And if all of us at Vancouver BCCA ask for it from our MO's it will be an interesting topic there too. I was thinking about it today and certainly no one at BCCA has even asked about my sex life though my newish GP did a couple of months ago and I applauded her for it even though she said right after that maybe she had jumped over a line by asking. Maybe I will ask her for an rx some day.
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I was part of a "pilot study" at the Cancer Centre here in Kelowna to determine the need for a sexual health clinic for cancer patients. Basically, this consisted of me filling in a questionnaire at the beginning of the study, being interviewed by one of the nurses who was conducting the study, and completing the same questionnaire at the end of four months. I haven't heard anything further on this, it was over a year ago. But it did show that there was some recognition of what we go through, and the effects that treatment has on that aspect of our lives. But, nobody offered me any Scream Cream
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Marian - likewise with me regarding sex life - no-one ever asked me about it not even my GP who often used to when I was going through menopause. However, perhaps they think it is not important to us. As for me - I don't have much desire, but my DH often feels differently. So if I can get something to "help" me - I will take it. I have an appointment with my RO and my MO in June - I wonder which of them I should ask? I am guessing the MO.
Ossa - thanks for the recipe for the scream cream. I am guessing that a lot of doctors have never heard of it!
sneaky - I used MacDonalds for all of my prescription drugs during chemo - so at least they will be familiar with the "recipe".
Ah ... the joys of this journey. My hair is finally starting to grow - well there is a fuzz there - just like a baby's head really. The biggest surprize for me is that it is snow white!!
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Adagio.. my hair came in white as well, but slowly changed did end up blond with slight bit ao red, too light for my liking, finally had it dyed with highlights and lowlights two weeks ago, feel so much better
BTW you are very welcome, anyone wanting recipie I will send it to you or you can Google scream cream have fun
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Hi Tazzy,
It's been awhile since I posted . I am so glad to hear you are doing well. I read that you recently tested negative for brca 1 and 2. Did you have the BART test? I am also negative for all three tests. My genetist and onc/gyn said that I am at average risk for ov. I did not have bc, but had 6 relatives with bc, including my mother. My mother died in 1994 before brca testing was available. I was told that even if my mother had ova as a secondary primary my risk would be 3 to 5 percent. I am wondering why yours is so high? I am thinking of have an Ooph as safeguard.
Wishing you continued good health!
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To my knowledge I did not have the BART test... not even heard of it. I am seeing my GP today and am going to ask her why my Nan (Dad's Mum) gives me a 46% chance of getting ov cancer. I will report back her comments. That's a reason I really dont like taking any notice of % - everywhere is so different with their opinions.
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This is kind of funny. I picked up my script for Scream Cream today and the young man retrieving it asked if I'd had it before so I said, "no." He then called for a consult. I was smiling to myself as I watched the older male pharmacist approach me. He looked at the label, didn't recognize it and then asked ME what it was. After I told him he then tried to describe how to apply it (animated index finger action to demonstrate application was priceless)... I let him squirm for a few seconds before telling him that it was okay, that I'd been given guidance from those who have already used it. We both had a little chuckle over the situation. I now lack all modesty and no topic with healthcare professionals is taboo for me
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Forgot to mention that the $40 provided me with 15 gm of cream. I think my insurance will still cover 90% of it, but I have to submit for it because that's the deal with anything compounded through my plan. Even if it doesn't get covered, I think it's a small price to pay if this stuff ups my libido. I miss my old self!
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From what I can gather is that what it does is make it less painful. I used the phrase vaginal atrophy recently and my husband pretty much groaned. Adagio, I would say that situation kind of mirrors mine: my husband definitely still has his libido and I just don't. But since he is going away in two weeks for months it will soon be a moot point!
Still, I will ask for the Scream Cream since MacDonald Pharmacy knows how to make it!
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Sneaky... lol. I can picture the pharmacist you are talking about. I hope the cream works for you!
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Too funny on how to apply scream creme. My docs I guess figured that the chemo shut my sex life down and so were not bothered to even ask about my needs. It takes a crew of firemen to just get me thinking of sex. Poor DH.
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BC women, I need some help, advice, input, contacts or experience please.
I was at the Vancouver centre yesterday for my #4 AC infusion. I'm cold capping and still have about 95% of my hair. This requires 2 coolers full of dry ice to keep the caps cold enough.
Everything went smoothly except we were scolded by some officious woman who clearly doesn't like the inconvenience of cold capping. Apparently someone tripped over a cooler recently. But there we were, tucked away discreetly at the back of the waiting area, using as small a footprint as possible and she still had to come over and say something. She said they weren't going to allow it - "but you can finish of course",
I told her that the alternative was to have a dedicated biomedical freezer so that there would be no need for coolers. And I asked her if they would really take away the possibility of keeping our hair. She then acted like it wasn't up to her and there would be a meeting about it. I suggested that if the coolers in the hallway were a concern (though I find that they tuck against the wall alongside the other equipment) we could keep them in the corner of the waiting room. She said that that was a hazard because they weren't labled and people could open them. Fair enough.Anyway, we were indeed given permission to have them outside the room along with medical equipment and bins and everything went smoothly.
So after that long story, and after the dust of yesterday has settled, I now really worried. How can they deny women the possibility of keeping their hair? Cold capping is growing in popularity and success in North America and is standard in Europe. I understand inconvenience to the institution but I went there ahead of my first infusion to discuss with them how to make it work for them and they shrugged me off. I want try to encourage them to find a way that it doesn't inconvenience them or cause danger, and still let women keep their hair.
What I'm here to ask all of you wise women is what can I do about it? Does anyone know who I can contact to make a case for future patients? Who is in charge over there? How would I attend a meeting that will decide the "fate" of cold capping?
Part of my motivation to cold cap in the first place was to help contribute to others through trail blazing.
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Shipsgirl, When I worked to get tattooing available for all Island women instead of just ones who lived in Victoria, I started with a snail mail letter to the BC Cancer Agency, they made a recommendation to VIHA (Vancouver Island Health Assoc), so I then sent them a letter. I wrote the letters, stating the facts, along with what I wanted to accomplish with a small amount of personal issue. (How having a diagnosis of BC, going through treatment & recon, then discovering that the last piece of the puzzle was unavailable to me, due to where I lived) I had to speak to the director of VIHA, who was a man, but he was extremely professional & sincere in wanting to help with what he didn't realize was unavailable. It was resolved within a month of writing of my first letter.
I would write to the Cancer Agency first, perhaps with a copy to Vancouver Health. Good for you for wanting to make the journey easier for the women coming behind you. I wish you all the best with your treatment & good luck in getting a change in procedure. GG
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GG27 thank you for your advice. And congratulations on making a difference!!!
I'll get started on that letter immediately. I just didn't even know where to begin and you've helped a lot!
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shipsgirl - I don't have any great advice, but I wonder if this is the case of just one woman being uppity about it all. I found so many of the nurses on the unit totally understood the desire to keep one's hair that I can't help but think there would be voices supporting you/us. In addition to the letter you're going to write, there are those comment cards laying about for patients to fill in with their suggestions/gripes. When I had issues over the lack of hygiene on the chemo chair armrests between patients (this is the one part of the chair they have been told not to disinfect due to time constraints!?!), the nurse who was totally on my side directed me to the cards and assured me that each and every one of them have to be reviewed by staff. I never got off my butt and filled in such a card though, so I can't vouch on whether or not they will follow-up. Also, I can't remember who your MO is, but my friend who started coldcapping just before you mentioned that her MO (Dr. Chia, I think) was actually incredibly interested in the efficacy of the caps. He's a bigwig there so perhaps if can be brought onside an actual freezer may become a reality.
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Sneaky. Dr. Chia is into big research so I can see why he likes the cold cap experiment. He would love to document it I bet.
Ships. I am looking at this problem on a mental level. What if you contacted the counselling dept which has psychiatrists in it and let them know there is a way of keeping our hair and self esteem also while going thru treatment and then ask if they have any ideaz on how to get this promoted. Just a thought.
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oooh, i like that approach hugz.
i think they should make little cold caps for our eyebrows
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Id do the cold cap for brows and lashes because they never have been the same since chemo years ago.
Actually I think chemo messed up my thyroid and adrenals and that is why may hair is thinning. Anyone else with this problem. So yes...bring on the cold cap for my whole body!0 -
sneaky and hugz, thanks for the great ideas!! My recent infusion is kicking my butt right now but I'll be able to get going soon I hope.
I will definitely look for the comment cards when I'm at the centre next week.
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ooooh.. CdnChick major crap crap double crap! with you in your pocket with prayers.. CRA|P! this was now May 21 I read this.. what happened??
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Does anyone else have this type of follow-up? nadda!!!
physically feel my chest - last time was Oct - begin of Chemo!
going to ask my GP tomorrow! I have all these lumps (from all the scarring/lymphatic fluid - they GUESS!!!!)
I really am NOT freaked.. but it's just so odd!
I am supposed to get a CT Lung scan every year - but already have disease and now is worse from CHemo oh well
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Hi ladies ... I waited and waited to hear about my sterotactic biopsy appt. I kept bugging my nurse navigator at MSJ to see what the holdup was but I ended up having to follow up myself with Women's to get my appt. It is so upsetting that the different agencies don't communicate very well. First Women's was missing my ultrasound report from Xray 505. Then they told me they got everything and my file would be reviewed by the radiologist. Then the mammogram picture wasn't accessible and they needed to request the file again. It was just so frustrating!!! Grrrrr ... So finally last friday after 2 1/2 weeks of waiting I finally got an appt booked in for Jun 21st (another 2 weeks later) It is so hard to wait!!!
Luckily, after all this agravation, I got a call this morning and they have a cancellation tomorrow so I'm going in! I was trying to wait patiently but this was STRESSING ME OUT!! I JUST NEED TO KNOW.
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