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April 2018 Chemo Starters

923 REPLIES
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Re: Oh I usually listen but missed the last show. I'll downlo...

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

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Re: Oh I usually listen but missed the last show. I'll downlo...

Hi everyone

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...         

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Re: Oh I usually listen but missed the last show. I'll downlo...

Hi everyone saw oncologist today and I will be restarting herceptin. Also going back to heart doc in 4 weeks. My ef has gone down from 66 to 51 but they are happy for me to continue. When I got back from hospital met my daughter and we went swimming. Really enjoyed it! Waiting for the snow now for some nordic walking! Lol take care Gigi
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Re: Oh I usually listen but missed the last show. I'll downlo...

Hi Christine no you don't sound grumpy at all. Love your posts on here. Good the heart doc gave you time, mine did too he is Greek and I think he even remembered me although I am rocking the elvis presley look. I know with arrythmia exercise is important so I've just got back from a long walk with the dog, exercise is on the up. That is definitely helping my disposition although during the week I struggle with energy levels at work. My partner made me go to bed at 7.30 Tuesday this week and that really helped. Lucky I do a 4 day week 5 would be too much. Will go find the podcast today. Hope you have a nice weekend. Take care Gigi
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Re: Oh I usually listen but missed the last show. I'll downlo...

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.

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Re: Oh I usually listen but missed the last show. I'll downlo...

Hi everyone hope you are all enjoying your weekend. How did your one year check go Fiona? I have mine in March. Sorry your herceptin got postponed Christine, I went for my echo yesterday and initial "eyeballing" (doc said that lol) suggests no change. However the 24hr eart monitor shows arrhythmia. Heart doc told me all the options moving forward and was very reassuring that it's not life threatening just "another b****y pain" (those are my words) I see the oncologist on Tuesday and will see what he has to say. Good luck with your results next week Michelle. And that's a shame about the trial Dorabel. I will try and listen to the podcast this weekend if I can find it. Take care everyone. Gigi
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Re: Oh I usually listen but missed the last show. I'll downlo...

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.

 

 

 

 

 

 

 

 

 

 

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Re: Oh I usually listen but missed the last show. I'll downlo...

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.

 

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Re: Oh I usually listen but missed the last show. I'll downlo...

I will try and download too, thanks for the lead Dorabel. No snow here but very heavy frost, beautiful day though. Good luck with your appt Fiona, I will keep my fingers tightly crossed for you. Let us know how you get on. How did your heart scan go Gygi? Do you have the results yet? Are you continuing with herceptin?
I had my heart scan on Monday, as per previous discussions I have a MUGA scan which involves 2 injections, because I haven’t had enough stuff shoved through my veins over the last few months! I get the results in a week. I also had an appt with the onc on Tuesday to see how I’m getting on post rads and with Tamoxifen. All went ok although, next appt May when I finish Herceptin.
Hope everyone else is ok xx
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Oh I usually listen but missed the last show. I'll downlo...

Oh I usually listen but missed the last show. I'll download on the iplayer radio for my walk today. Thanks.
Did you have snow last night at all? I got caught in a really unexpected heavy flurry on the way home from yoga last night. It lasted about 2 hours! Hope that's all we'll get and it won't be a repeat of last year!
I've got my 1 year check up on Friday. I'm veering between anxiety that there will be another find and a confidence that all will be clear.. Fingers crossed it will be the latter!
Hope all is well x Fiona
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Re: April 2018 Chemo Starters

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.

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Re: April 2018 Chemo Starters

Glad your 6 month check went well Dorabel and hope your chest infection is clearing up. There seems to be a lot about. I try and say I ‘had’ cancer too but it still feels odd, a) to think I actually had cancer and b) is it really gone? Hopefully time will help.
Gygi it sounds like you are going through the same as me with your hair. Mine is very short now with a longer fringe I think we both had bobs when we started out. Although I was pleased I cold capped it does leave your hair a bit all over the place with different lengths doesn’t it?
I have my mum and dad coming up to stay today for a few days, today is my mums birthday so we will go out for lunch and if we are up to it go and watch the fireworks in town.
Happy New Year to all April Chemo’s. Let’s hope 2019 is a marvellous one for us all, like Dorabel says I think we have earned it! Xx
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Re: April 2018 Chemo Starters

Hi Dorabel sorry to hear you spent Christmas in bed. Hope your chest infection has cleared up and you are feeling better. And good to hear your 6 month check was ok. I too have bought an array of calendars and diaries for 2019. And my new year resolution is to cook with more herbs.
Really dislike my haircut. It is so short but the good news is the hairdresser was as surprised as I am how much there was and how thick it is. There are no split ends now lol and the idea is that it can grow strong and the same length now rather than having to cut it right back later in the year. I just packed away all my scarves and hairbands but hats look a lot better on me so may treat myself to a new one.
Can I just wish you all a Happy New Year for 2019 and a big thank you for your company in 2018. You've been great and I so appreciate you guys xxx (and breastcancercare for facilitating this forum) I'm not going out tomorrow evening but if you are hope you have fun Gigi xxx
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Re: April 2018 Chemo Starters

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

 

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Re: April 2018 Chemo Starters

Hi Michelle hope you had a great time in Slovenia. Want to go on holiday but not booking anything yet. Just getting ready lol probably won't go till May time coz I had that blood clot and want to give it lots of time to clear up. My bikinis were a bargain though in the sale so I'm really pleased. Yes going to have a heart scan mid Jan. Was worried it might be the 11th but that day is clear still!!! Bought a diary for 2019 too yesterday. Looking forward with just a nod to this time last year. Hair cut in an hour!!! Very nervous but then it will grow all at the same length. Hope everyone was feeling well over Xmas and looking forward to ny. I never go out nye but we are going to hit the sales (me again him first time) enjoy your weekend x
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Re: April 2018 Chemo Starters

Oh Gygi that’s quite a milestone, how did it make you feel? I still find it difficult to think back to my diagnosis day, such a horrible memory. Good to hear you have your test appts I assume for your heart.
Bikini shopping?! Got a holiday planned I hope?!
We returned from Slovenia in the early hours to find our heating had gone off on 23rd and our house is freezing!
Happy New Year! Xxi
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Re: April 2018 Chemo Starters

Thanks guys. Today was 1 year knowing I had cancer. Last year I went from getting my diagnosis to buying a nepresso machine. Today I bought bikinis! Got all my appointments through today too for tests. (So efficient my docs!) Getting my hair cut short tomorrow. Hope I like it! Take care Gigi x
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Re: April 2018 Chemo Starters

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.

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Re: April 2018 Chemo Starters

Sounds like the best Christmas present you could have wished for Gigi. Enjoy your holiday time and hopefully all be sorted in the New Year.
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Re: April 2018 Chemo Starters

Pleased you will be SE free Gygi!
I hope everyone has a happy holiday and here’s to a healthy 2019 for us all xx