16-12-2018 10:36 PM
Feels like the end of a rubbish week but i am determined to make next week more positive. Sorry if I have gone on about the echo result and may be been a bit self absorbed.
I am due a phone call from the counselling department at the hospital tomorrow but not really sure it is the thing for me. To start with i am not good on the phone at expressing myself. How did it go for you Dorabel? I just don't feel confident talking to someone that is a professional. I had one session at a breast cancer charity but didn't feel i really got anything from it.
Michelle. Hope all is good with your skin and everything else.
Gygi. Hope everything has been checked and sorted.
Fiona. Hope you are well too
Everyone. Have a great Christmas and hope the new year brings new healthy women.
16-12-2018 09:22 PM
Thanks for your post, Michelle. Now that treatment has ended, I vary between feeling euphoric that it’s over and terrified of recurrence. Yes, I feel emotional too. It feels as though I’ve crossed some divide and there is no way back. I’m glad you were able to get counselling. I had 4 sessions which eased me through a dreadful period of meltdowns that happened because I couldn’t cope.
I hope you have a lovely Christmas away. Hope, too, that for all of us 2019 is an improvement on the year we’ve just endured.
16-12-2018 01:35 PM
15-12-2018 11:33 PM
15-12-2018 09:39 PM
15-12-2018 07:16 PM
15-12-2018 06:40 PM
I hope things have got a bit better since yesterday. The confusion and fear must have been awful. It sounds as though the details of your treatment are just not being joined up by the medics involved.
How is the letrozole going? I was supposed to have this but the oncologist decided on exemestane instead - same sort of drug. So far, the effects have not been bad at all, so I hope you have the same experience with letrozole.
I’ve got an end-of-treatment appointment next week with the breast care nurse team - but still no assigned nurse.
14-12-2018 11:28 AM
Good morning everyone.
Just had another herceptin injection which was a bit of a chaotic experience and now wondering if I should see how easy it would be to change oncologists. When i arrived they were busy and i didn't mind waiting but then they said they couldn't do it without an echo result. I said i had one recently and told them the date and they sent someone to cardiology to get the result as they didn't have it. I thought this odd as i had seen the oncologist after the echo and I think she said she would chase the result. At least i assumed she would review it. Anyway then there were phone calls and discussion on whether they could give me herceptin as the result was a drop from by previous one. They knew i could hear them talking so I started to panic a bit. I knew all the meds affect the heart as does my luekameia medication. when they saw i was upset they got a doctor to come and explain things to me and that settled me. It was ok to do the herceptin and it is a known side effect apparently that as treatment goes on the heart can be affected and other medication may be needed in the future. When i asked why my oncologist hadn't told me she couldn't answer saying as i was a private patient the oncologist deals with it all on her own. May be i would have been better with a team under the nhs. The nurses are so good i can't fault them but this is not the first time results haven't been checked and others have pointed out the problem.
Yesterday i went to an appointment to check on the scar healing on my tummy as i was concerned about some little lumps. She confirmed they were just stitches dissolving and not to worry but she found a hard area that she wants an ultra sound done on. she said it is probably to do with the fat dying where capillaries haven't joined and not to worry but I can't help it. The ultra sound is not an urgent one but hopefully it wont be too long.
Getting home today i found an envelope on the mat which had two booklets it and a note from the breast cancer nurse who didn't phone to say "as promised". Completely confused. I phoned the number on the slip and left a message saying had i been confused with another patient. Will wait and see if i get a call back this time. Not holding my breath.
Sorry for the rant. Needed to get that out there and clear my head before going to do some Christmas shopping. Started Letrozole and waiting to see what side effects arise from that too.
All the best to you all
09-12-2018 01:59 PM
07-12-2018 07:11 PM
07-12-2018 06:56 AM
06-12-2018 11:41 PM
06-12-2018 05:20 PM
Thanks for this, Christine. I’m not saying it’s reassuring that you went through the same thing - horrible for both of us. Does make me feel less of a grumpy person, though. Letter confirming surgeon’s 6-month check (at 10 months) arrived today.
What was reassuring was to know that joint pain seems to be a side effect of what we’ve been through and that gives me hope that this is a side effect which will go. I feel as though I should have a sign saying ”Sorry, I’m a bit slow” stuck to the back of my head when I am going up or down stairs, one at a time like a toddler.
Herceptin side effects do not sound good. A friend recommended sachets of root ginger & turmeric for making a hot drink. It’s supposed to help reduce inflammation but even if it doesn’t, it tastes nice.
05-12-2018 03:49 PM
Hi Dorabel. I know exactly what you mean. I have had to chase everything. Last week i had an apoointment with my oncologist and was introdueced to the breast cancer nurse. I have not had one for the whole of my treatment and have relied on the macmillan helpline. She said she would ring on monday for a chat about my treatment but here we are on wednesday and still no call. I do still have contact with the surgeon and his team but he seems to be on his third PA this year and I am not getting answers to questions there either.
Gigi. Sounds like you are having a tough time. I am trying supplements for the Herceptin pains and was told turmeric is good. Haven't tried it yet. I find my leg muscles are very reluctant to work. Bending down or doing a stretch after a work out are nearly impossible and I feel like an old lady. I have had 12 of the 18 treatments, inculding the 4 during chemo, but it still seems a long way to go to the end of March. Should start the Letrozole next week as log as i don't have another period. New set of side effects i am sure.
Energy levels are still not brilliant but i guess i have the luxury of working around that. People think once the main treatment has finished that all goes back to normal. I am still a long way away from that. Hope the next two weeks aren't too exhausting and xmas will give you are rest.
05-12-2018 11:34 AM
Hi Gigi, good to hear how things are going for you. It sounds as though you are recovering, despite the exhaustion.
I’ve just discovered how a person can slip through the cracks of the system. Treatment ended a couple of months ago and then - nothing. I finally rang the breast care nurse line yesterday and explained that I didn’t have an assigned nurse but was worried that I had been abandoned (do I have to get stage 4 bone cancer before anyone checks?). As if by miracle, an appointment with the surgeon was arranged for this month. I was booked into an end-of-treatment clinic (who knew such a thing existed? no one told me). I was assured I would get an appointment for my yearly mammogram. What a lot of target boxes finally got ticked!
What concerns me is that I doubt I’m the only person to whom this has happened. Because I had no assigned nurse, it was no one’s job to look at my file. If I had the early stages of dementia or didn’t want to make a fuss, zilch would have changed.
04-12-2018 06:37 AM
01-12-2018 04:45 PM