Thank you for all of your replies. My husband is now being very supportive and we had a good talk.
I was so nervous on Tuesday when I went to get my blood test. My husband has been been incredibly supportive. My CA-125 is now down to 34 which is the normal range in my country. I did my 6th chemo session yesterday.
I went to see my oncologist a bit later Tuesday morning and I left confused and scared. I don't think she had even looked at my CT report. She hadn't noticed the comment about the two small sclerotic focis on my spine of unknown origin that was reported on the CT report for the chest/lung part of the report (they reported it separately). She told me that she would go look at it and then the nurse came back to give me information about PARPS. I asked if the doctor was coming back but she said no but that she had ordered a bone scan. I asked the nurse how long it was going to take and she said that it was not a priority so could take a couple of months. I was handed a hand out about PARP inhibitors and told that they would with me again in 4 weeks. The entire experience was incredibly rushed and I feel so lost. The nurse there told me to concentrate on my chemo the next day.
I called and asked for a referral for a psychiatrist because I am undermedicated right now and severely depressed. The nurse didn't really know if they had one but was going to send a message to the care team to see what they recommend. I am presently on Clonazepam but it's been over 6 years and I need an anti-depressant. I was prescribed one over 6 years ago but it is not working anymore.
I really wanted my doctor to explain to me what she thought about the sclerotic focis but she didn't want to go there for some reason. She said it is unusual to go to the bone normally. She said some pretty scary things as well that I don't have the heart to write down. Right now, I am sweaty and not feeling well because of the chemo and the steroid which turns my face a bright red
I would gladly pay money to get more personal and less cold health care. There was another oncologist working with her this morning which the nurse thought that I was seeing. He is very nice and I should not have insisted on seeing my regular oncologist. I think perhaps he was assigned to me because he had read the reports and she didn't have the time (I had to wait to see her). I just don't know.
My landline is down so I had to leave a message as someone from the hospital called and I think it was from the mental support department but I have no idea as they called on my husband's line. I asked if it was possible to talk to the radiologist who looked at my CT scan. I can't see the details on My Chart and they didn't give the dimension on the report.
I admit yesterday that after I came home and because of the effect of the steroid which makes me feel like my feelings are blunted, I googled online for hours and also went back to JustAnswer which was a frustrating experience. It's so easy for them to say that I need to wait but if I had not asked, they would not have ordered a bone scan. How much confidence can I have if I have to ask.
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Chanterelle
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Despite the fact that everything in healthcare goes very sloowly… it sounds to me that you are making progress Chanterelle. Your husband is listening and supportive. You have asked your questions and requested help for your depression. That’s a lot! Well done!
It seems you are obsessing about these 2 spots in the spine which is understandable but if you can take in all the good things such as your ca125 in spite of all that and stay clear of google that would be good.
All the best as you continue to navigate through xx
Thank for your comments. I left a message this morning with the nurse and I got a call from the Radiology department. They booked me a bone scan on November 16 in the morning. I am terrified. I suspect that the nurse asked them to put me as a priority because of my extreme anxieties. I am trying to be logical but it's like I can't help but think the worse. And I went down the rabbit hole again last night because the steroids made feel like I had no feeling so started again googling and using that site called Justanswer.com. I also used MyChart and obssessed over my history of blood test results.
Yes, I did ask help for the depression but our landline was down the last few days and they tried calling my husband's phone number but they didn't leave a message. In my message, I also told them that.
It is strange because I have absolutely no pain in my spine. I was diagnosed with degenerative disk disease in 2015 (moderate). I don't know if it has anything to do with this at all.
I spoke with my Naturopath doctor a few days ago and he said statistically, I had a better chance of this being MS. He specializes in innovative and integrated cancer treatment. They also do research and he is quite knowledgable. I have been going there for about 6 years and they have helped me a lot. They have all kinds of different services that you would not find elsewhere. If anything, right now, since I cannot be heard from my specialist, talking with them helps me a bit. Dr. Flower who has a lot of experience helped me a lot when my breast MRIs in 2021 and 2022 came back with some abnormalities. The biopsies turned out OK but I am BRAC2 so they don't take chances.
I just don't know how I am going to get through the next few weeks. They post the results on this site called MyChart. This means that you often get to see it before your doctor does. I have no idea if they call you if there is nothing or they set up an appointment to discuss no matter what. I told my husband that I would be removing my access to MyChart and giving him the log in. He's been great at this. He even looked at my blood work on Tuesday as I was a nervous wreck.
I know that I came down hard on him on my previous comments but he is a very good man that loves me a lot. He's been my support through all of this. I think that I didn't tell you everything that he's done for me. He does anything that I ask of him. He takes me for long rides and for walks. He has given me my shots to boost my neutrophils. He cooks for me and cleans the house as well (I used to do all that for many years). He gives me anything that I want and he is being supportive right now as he normally was. What I didn't say in my previous post is that he has some health issues as well which came up in scan. He has pain and is meeting with his doctor next week.
I've got to agree with you, Chanterelle. I was shocked by first oncologist's attitude. I mean, you don't need it sugar-coated but have a little empathy! Can't believe onc did not look at scan and come back to you! Keep your chin up. Glad husband has come around.
I agree. I don't think that they realize the impact that their words have on our morale and mental health.
But they are not all like that. Some are just lovely and kind. One in particular who I think is in the background now (not retired) but was around when I was first diagnosed in 2017. The women just loved him as he was so kind and upbeat. I realize that some get frustrated because they are overworked and also they have seen a lot and cannot afford to be too positive. They might build a wall around them and be more abrupt in order to protect their own mental health.
Interestingly enough, when I met with the breast specialist after my second biopsy, he was the kindest doctor that I had ever met (along with another female GP that was replacing mine which I will never forget as she took her time with me and reassured me). The breast specialist told me that he was a survivor of brain cancer which he had at the age of 30. He said that he got lucky because it was in the steam. I figure that he was in his late 40's or early 50's. I think that is what made him so empathetic and kind. I actually cried when I met him because of how kind he was being to me. I was so used to the coldness, the negativity, the words that you don't forget etc so I was very traumatized as well. Kindness from others makes me cry now. I told him how kind he was and he also called me back when I requested a call back from him even with his busy schedule (he's also a surgeon).
So yes there kind doctors and specialists out there.
Chanterelle, you are taking all the right steps, especially trying to see a psychiatrist. Everything is filtering through your depression and feeling so negative. I hope if you can get a handle on that all the cancer stuff ( which seems to be going well) which seem more manageable. You’re almost done with chemo! And since you are brca2 the PARP should work well for you. Xx
The hospital social worker called me today. There is a waiting list that is very long for psychiatrists but she will see what she can do. I am in Canada and there is a shortage of psychiatrists in our province. The social worker said that she will see what she can do. I asked her if it she knew if we could get a private one that we would pay for. She will look into it. My husband is being super supportive but yesterday when the nurse called me back, she asked me some questions and felt that I needed to go to the hospital because that is the fastest way to see a psychiatrist. I was having a particularly bad day because I panicked when they called me for the bone scan a few minutes earlier which is in less than 2 weeks from now. It wasn't expecting so soon and it was hard to process but they asked for an earlier appointment so that I can get the results earlier.
Right now, I had my 6th chemo session on Wednesday. I am feeling constipated, sweaty and have this bad taste in my mouth. I also have to take the shots to boost my neutraphils which I did yesterday. It makes me feel achy and strange as well. I don't know if it is the effect of the steroids (I am super red in the face right now) or the shots.
Thank you for your comment. I'm sorry to hear how you are feeling after your chemotherapy on Wednesday. I just wanted to encourage you to call the chemotherapy hotline or other key contact that you've been given if you have any concerns at all about the side effects of your treatment. They will be able to advise you. I hope these side effects ease for you soon.
I am in Canada and we just got a call this morning from someone from the hospital asking for our insurance information. She will take care of filling out the paperwork for the insurance. We both have health insurance from work (me as a retired employee and my husband through his work). I am BRAC2 and PARPS were discussed with me when they saw that I reacted really well to the platinum-based chemo.
Hi Chanterelle I'm glad your making progress with your Hubby mine is a good Man but during my frontline and now my recent recurrence its been a bit frustrating he's not one to sit down to console me he does listen but like many Men I don't think they get this journey unless your a Survivor. I'm involved in my local OC group we meet for brunch at one there was a table of all the Husbands supporting their Wives I thought gosh I really wish mine was like that I've since starting counseling which has really helped, we're making progress. Have to be our own advocates I think you have a lot of concerns and shouldn't be rushed I would opt for contacting the other Oncologist. The steroids really make you off wired and emotional during if you have anxiety it will only make it much worse I bumped my Zoloft up also take a 1/2 tablet Xanax before scans it really helps. I have degenerative disk disease, arthritis and lumbar spinal stenosis always shows up on a scan wishing you the best.
My dear Chanterelle, what you are experiencing is not worse or better than anyone else but we all feel the experience differently. I was exhausted reading your comments & was starting to feel a bit anxious myself. I had to stop & do some deep breathing. Do you have any mind exercises to help you? You definitely need something. STOP doing the google thing right now, it's not helping you, it's making you worse. Definitely change your oncologist if you're not happy with her/him. Although I get the feeling that you won't be happy with anyone until you sort out your anxiety problem which I think is worse than OC at this point. Find out if the anti depressant/anxiety medications are not being effected by the chemo drugs.
I would suggest that you try meditation, which can be so helpful during treatment, but I'm not sure that you could slow your thoughts down enough yet for it to be effective. But please try to do some slow, deep breathing. Do you have support from family (other than your husband) &/or friends?
It's good that you are also doing alternative/natural treatment but always check with your oncologist before taking any herbal remedies in case they interfere with chemo drugs.
You must keep reassuring yourself that you are doing everything that you can do to get through this journey and remind yourself that you are a member of this tribe of amazing & courageous women. AND REMEMBER TO BREATHE. Sending big hugs to you. xxxxxx
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