Hi Christine, sorry only just seen this, sorry to hear you have been messed around and no I don’t think you are being unreasonable. Your oncologist should know when you started your herceptin! I hadn’t realised you needed more surgery, what are you having done? I hope you can get it all sorted, this is stressful enough without all of your hospitals inefficiencies! X
I also had an appointment with my oncologist which was as chaotic as ever and i don't think i understand anything anymore. she started of with the echo result from sunday that she had from cardiology which had an incorrect date on. the assumption was it was the correct one and showed a small decrease to 61. She started off saying she would stop the herceptin and get my heart checked untili pointed out i only had a few left. She said i was on number 11 and i said no i was on number 15 as i had 4 during chemo. she said i started in june when i had my appointment card showing i started at the begining of April. Eventually she agree i was right and said just to have this weeks herceptin then we would stop forever but she would get my heart checked with a post herceptin check up which is an MRI of the heart. Sounds a bit scarey.
She then checked my record for future appointments and noticed they had booked me in for a pre op assessment for 5th February. It took me two hours yesterday to find out which hospital my surgery would take place in and book the pre op appointment for 5th March. Surgery is 19th March. Now need to make more phone calls and find out what is going on. Hope someone knows what is going on.
It has all left me very much in the dark again. Am i the only patient that is messed around like this? Am i being unreasonable to expect a hospital who sends me a pre op appointment to know when my surgery is and in which Hospital?
Waiting for the snow. Just rain so far...
Hi Gigi. Looks like they are taking it all seriously with your heart so hopefully it will be a simple solution when you see the oncologist. Mine has said she will send me to be checked out if the echo doesn't look good so i am grateful tor that. she actually gave me loads of time and seemed to listen to me this week which is more than she has done in the past so that was positive. Good luck with your results Michelle. At least we are all being checked.
The podcast is definitely worth listening to even if my experience wasn't the same as hers. I may have taken it more on the practical side than listening to the emotions. I need to perhaps have another listen. It is on the BBC website and easy to find.
Still feeling a bit grumpy and iritated so if any of my posts sound critical i will apologise now for the past and the future. My counsellor has told me i need to express my emotions more. I probably have done this here but not out in the real world so I need to start doing that. I was not bought up to express emotions so it will be big change.
All the best to you all.
I found the programme item interesting mainly because of the tone, which I recognised as the way I feel too. People always ask me now if I’ve “had the all clear”. I wish. It’s not like that; so much of what happens after cancer treatment is not what people imagine.
You’re still getting the runaround, Christine, regarding the echo and your herceptin treatment. Must be very wearing, especially when you get contradictory information. I felt the same about jaw problems (bone necrosis!) and the acid infusions but was persuaded it would be worthwhile.
I was also persuaded to take part in a trial. After three months of complete silence, I rang the hospital about it. I found out that, because of an administrative problem (forgetting my existence?) it is now too long after the end of my radiotherapy for me to take part, so goodbye to all the advantages which were promised as an inducement. I think the oncologist’s secretary expected me to be angry but I’ve gone beyond that to a weary cynicism.
I hope it’s good news, Michelle, when you get your results back next week. You must be so fed up with the needles. Hope your year check is ok, Fiona. My fingers are crossed for Friday.
Saw daffodils on my walk today. Won’t be winter forever.
I just listened to it and found it interesting. I wonder if you all had that experience as mine was very differerent. Her case is different to mine as i had only stage one and the infusion was discussed last night with my oncologist and she told me it would have a minute tiny percentage change to my life expectancy. The negative impact on the jaw was too significant for me to have this as i have had problem tooth extractions in the past. I am sure the benefit must be greater in those with bigger stages though. My zoladex injections are a few seconds of discomfort and i don't have any numbing agent. Of the three i have had so far , only one has bruised. It is however a disruption and a constant reminder of the cancer.
I guess i have also been lucky that i have never waited two weeks for a mamagram result as the clinic is run with a radiologist checking them within minutes so any additional images can be taken if needed. Have you all had to wait?
I had my oncologist appointment on tuesday to finally talk about the echo. She denied knowing anything about the consfusion and upset caused before Christmas when i was left wondering what was going on when i overheard nurses discussing my echo and the fall in my heart percentage. She gave me different figures than i was told before too. she wants another echo done before my next herceptin so i will need to delay it a week as they can't do it before the weekend. She did confirm the current research is looking at full effect of herceptin being provided after 6 months and 12 months may not be necessary as you mentioned gygi. Then walked home in the snow.
Hope you are all well.
I wondered if anyone heard From our Home Correspondent on radio 4 last weekend. There was a thoughtful (and thought-provoking) item by Carly Appleby on her breast cancer treatment.
Hope everyone is ok.
One year is quite a milestone, Gygi. Mine was the 18th December but I didn’t think about it much on the anniversary day. I was numb with fear at the time of diagnosis; there seemed to be a thick wall of glass between me and the rest of the world. Although I spent this Christmas in bed with a chest infection, nothing could be as bad as last Christmas. The surgeon did the 6-month check yesterday & it was ok.
I’ve bought a bullet journal for 2019, which will be entirely devoted to making the most of my time (it won’t be about housework). I’m trying to get used to saying “I’ve had cancer,” instead of “I have cancer”. My wig and all the head coverings have been washed and put away. Bikini summer sounds great.
Hope your house has warmed up, Michelle. Slovenia is a beautiful place and spending Christmas there must have been wonderful.
May 2019 be a fabulous year for all of us. Think we’ve earned it. x
So glad you didn’t have to have that injection, Gygi. I’m hoping 2019 will be a big improvement on the year that’s nearly gone and for all of us.