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April 2018 Chemo Starters

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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
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Re: April 2018 Chemo Starters

Hi everyone just heading home from the hospital. They decided not to give me the injection today as they want to check my heart first. So happy! First holiday all year without treatment so no side effects! Will have checks and resume after that I guess (mid jan) looking forward to my hols now. Merry Xmas xxxx
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Re: April 2018 Chemo Starters

I’ll keep my fingers crossed for you Gygi x
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Re: April 2018 Chemo Starters

Hi Michelle went back to A &E at another hospital after a weekend of palpitations and they did more tests. Apparently I'm the healthiest sick person around! My blood tests were so spot on. It seems a side effect of the herceptin. Starts day 2 and lasted 12 days for me. Next herceptin is Xmas eve so will see if it happens again and seeing the nurse on the 9th so will ask for my next echo. I'm hoping it started because I was super tired from work and that this time I don't react so badly. Will let you know x
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Re: April 2018 Chemo Starters

Just seen your comment Gygi, how are you feeling? Apart from tired that is! I’m really feeling the tiredness too, maybe from rads. I hope your heart scare is sorted. X
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Re: April 2018 Chemo Starters

Dorabel I’m so happy for you! Although this is the place to rant when need be it’s lovely to hear good news too, it must have been such a lovely relief. It’s horrible how negative snippets of conversations can sometimes play on your mind.
Anyway a lovely Christmas present for you Dorabel! X
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Re: April 2018 Chemo Starters

Oh Dorabel that is fantastic! Sounds like you can relax and enjoy the festivities now. I finished work today. So tired. Will write more tomorrow when I'm a bit rested. Xxx
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Re: April 2018 Chemo Starters

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.

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Re: April 2018 Chemo Starters

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.   

 

Thanks again

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Re: April 2018 Chemo Starters

Sorry my keyboard went funny at the end of the message and wouldn’t let me type!
I also meant to say my counselling was face to face Christine and I can understand why you might find it awkward over the phone I think I would feel the same. Can you arrange face to face?
Anyway that’s all from me, hope you are feeling better xx
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Re: April 2018 Chemo Starters

Hi Christine, I second what Dorabel says, not self absorbed at all and if you can’t say it here then where?
I have had one to one counselling too, only one session so far but it has helped, although I can see it does make a big difference who you have. I have a trainee and supervisor in mine and have to say the supervisor’s experience shines through. I wish she was more involved.
I asked a Dr friend of mine about echo and muga scans. The echo is less intrusive and they do provide similar results. Apparently 55 is and average score and they are often much lower.
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Re: April 2018 Chemo Starters

Hi Christine

 

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.

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Re: April 2018 Chemo Starters

Hi everyone.

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.

 

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Re: April 2018 Chemo Starters

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.

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Re: April 2018 Chemo Starters

Tried to post this morning but got an error message from the site so will try again later. Heart problems are very common on herceptin ftom research i did. Some is on links in the forums here.
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Re: April 2018 Chemo Starters

Just had to google MUGA scan as i have never heard of it. It seems to test the same thing as my Echo. Mine they were concerned by the drop and not the actual figures. I had a very good start point so my figure now was still about 65 i think.
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Re: April 2018 Chemo Starters

So sorry to hear you have been having a hard time Christine. It seems Dorabel is right and they are not joining the dots. That must be very frustrating and worrying for you. I hope you get the answers you need and soon.
How do you feel about your end of treatment Dorabel? Have you been emotional at all? I found I have been very emotional after radiotherapy. I’ve had some counselling and that seems to be helping.
How are you doing Gygi? Have they checked your heart yet? When was your last MUGA scan and had your score reduced? Mine started at 65 but was down to 55 last time. I’m sure I’ve read if it goes under 50 they stop the herceptin and give medication until back to normal and then restart the Herceptin.
Fiona how are you doing? Are you managing to move on from all of this?
Everything is ok with me as I said I’ve had counselling and have more booked in because I have been very emotional since finishing rads but actually feel so much better now. This weekend both my girls are back from uni and we are a family again and I can’t wait. We are going away for Christmas as I couldn’t face the usual routine so I am looking forward to that too.
Well I hope you all have a wonderful Christmas and we can welcome in 2019, hopefully a healthier year for us all xx
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Re: April 2018 Chemo Starters

Hi Dorabel.
I have taken Letrozole for 6 days and the only side effect i am aware of so far is no appetite. Really odd as i have never had that before. Eating because it is a meal time and not because i am hungry. On evenings i eat alone i am making little effort. Time will tell if any other side effects arise. Aches have not changed much from those i already had so fingers crossed on those.

Best wishes.
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Re: April 2018 Chemo Starters

Hi Christine

 

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.  

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Re: April 2018 Chemo Starters

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  

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Re: April 2018 Chemo Starters

Thanks guys, resting but still feeling so rotten. My heart rate is lower but palpitations going strong. Feeling very spaced out so can't do anything. Just glad don't have to have those blood thinner injections again so grateful for that. Will let you know xxx
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Re: April 2018 Chemo Starters

Well that must be a relief that there is no clot Gigi. Have a good rest this weekend and I hope you don’t have to wait for the heart test xx
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Re: April 2018 Chemo Starters

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.  

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Re: April 2018 Chemo Starters

Thanks guys after 3 days 16 hours in total no blood clot thank goodness. Back to oncology and have asked them to check my heart. Will rest up the weekend. Hope you all have a good one take care Gigi
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Re: April 2018 Chemo Starters

Oh dear Gigi that sounds horrible and a bit of a worry. Thinking of you and hope all goes well . Puts all my minor aches and pains in perspective.

All the best
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Re: April 2018 Chemo Starters

Oh Gigii you poor thing. Have you had regularl heart scans? I think the herceptin can cause problems such as breathlessness and palpitations. Good luck today, thinking of you x
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Re: April 2018 Chemo Starters

Hi guys thought I'd share with you as a little but worried. Been feeling so tired and started getting palpitations and breathless rang AOS on Wed after work and they advised me to go to A&E in case I has a blood clot on the lung. Not a massive one just a little one that needed to be sorted out ASAP. Went and got home at 1am this morning and had to go back all day today. Symptoms got worse but improving now. It might be the blood thinners they gave me. Horrible day but managed it and appointment for CT scan tomorrow. Bit worried so been up clearing up a bit and my cleaner comes tomorrow so at least at the end of the day the house will be tidy. Wish me luck. Will let you know how it goes x
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Re: April 2018 Chemo Starters

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.

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Re: April 2018 Chemo Starters

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.

 

xxx 

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Re: April 2018 Chemo Starters

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.

 

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Re: April 2018 Chemo Starters

Hi everyone, how's things? Been too busy and too tired to write but have been following the thread. Hope your skin has improved Michelle. Yesterday had Herceptin number 9 so that means halfway! Went to bed super early. Today feeling a lot better and it is my day off! Still need to get to that swimming pool, nice you have been Euby. Got my prescription goggles now just need to get a swimming hat and some energy and I'm there! Looking forward to being off over Xmas. Will be able to go then. I am walking the dog more but often with a limp. Just keep on going Gigi I tell myself you will get there! Pushing through. I don't think they realise at work how hard I'm finding it. Two parents' evenings and an inspection have wiped me out but I've made it! Only 10 more working days till the hols! Also this morning is the first my hair is not sticking up in a weird cartoon like pose. I think the top where the bald parts were has grown enough now. Nearly gave up the other day and chopped it all off but perservering and lots of scarf wearing seems to be paying off. It is growing as it's time to dye it again. Take care everyone Gigi