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.
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
Oh Gigi, this must have been terrifying. Thank goodness there’s no clot. I hope you are having a good rest this weekend with lots of tlc.
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.
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.
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.