At last, I have something positive to post about instead of ranting! I had an end of treatment session today and it was wonderful. The kind nurse running it turned out to be my newly-assigned breast-care nurse. I was given the time to voice my fears and worries and left with a clear account of the follow up I will have. My biggest fear - that I was having zoledronic acid to delay inevitable bone cancer - turned out to be wrong and based on something a doctor had said which I had probably misinterpreted.
When I finished my treatment without any plan about what came next, my imagination went into overdrive. I built disaster scenarios out of scraps of conversation during hospital treatment sessions. I thought the situation was: you’ve had your treatment, now go away and stop bothering us.
The relief is indescribable. I wanted to cry and do a little dance at the same time.
Thank you both for those kind words. Had a bit of a downer on myself last night and thought maybe i had come across as me me me when others are going through worse.
I did look at what a MUGA scan was and it did sound a bit scary with the radiation and the longer time it takes. I assume it is a hospital preference as to which one they use. It is just nice to know what is the normal and what to expect. I didn't know what a large percentage of women on herceptin have heart problems. One report said 50%. This does cover everything from just a minor drop in function though. I am just hoping that it keeps on schedule so i can free of that injection by the end of march so will only have the zoladex to schedule each month. It still ties me to dates i can't go away on holiday as they shouldn't be moved more than a day or two where as I think herceptin can be delayed by a week.
The phone call today was just to access what my needs were. The lady was very nice and has requested i see a counsellor face to face in about months time. I think i just need a way of dealing with stress of each hospital appointment as I have had so many surprise revelation in my last hospital visits, it is making me very emotional. She seems to think someone can help with coping mechanisms.
Need to get through my birthday (christmas eve) and christmas with family so hoping that will not be too stressful. My daughter is due home for a few day which i am looking forward to.
Sorry it’s been such a miserable week. Not self-absorbed and not going on - this is where it’s ok to voice things when those who haven’t gone through this particular mill might not understand.
I had face-to-face counselling and found it really helpful. My most pressing problem was that someone I know socially is part of the counselling team. I don’t much like this person and had to make sure that absolutely nothing from my sessions ever got to her. Once that was sorted, the counselling was quite demanding but it helped me a lot. I found myself opening up about things I’ve never told anyone. Four sessions were enough for me because I didn’t want to go any deeper.
Hope that helps. Trusting another person with private stuff feels very risky and only you can know if it’s worth the risk. Everything depends on who you get.
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.
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.
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.
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