Starting Chemo April 2015

[Huneebee]

Hi Egret

I hope your tummy is feeling better. I have spent many a day and night on the loo, so you have my complete sympathy.

I, for the first time in my life, am wearing make up daily. It's the only way to give my face definition now. It feels very alien at the moment.
Question for you all - is any body having pain where there tumour was removed??? My breast has started to get quite sore at times and I haven't started Radiotherapy yet.

Hope your all having a good weekend. Xxx

[Egret]

Hi ladies, I spent a night in the toilet with diarrhoea. Beautiful morning though. I am still awake at 8:27 am, last loo visit a few minutes ago. I am acutely aware that I need to rehydrate. It did not help that I mulled about all that went wrong! Well, I better get my make-up right and bright. Egret x

[Eira70]

Yah in deed. I find sleeping tabs get u through those really **bleep**ty few days. Relax.

[Molliana]

I just went to nurse to get my tummy injection. She called the duty Dr in who signed me off for two weeks and gave me some sleeping tablets! Yay 🙂

[Huneebee]

You will!

The news is reassuring, isn't it. Take each day as it comes. It will soon pass. X

[Eira70]

Yes we r Huneebee , just watching news with advances in treatment for BC. Life's for living and when I've kicked this in to touch that's what I'm going to do. Although x3 days post x5 dose stuck on sofa. Ha ha I'll get there. Xx

[Huneebee]

It's really nice to read that we are all starting to get better news!

We are going to beat this bad boy!!!!

[T3D]

Thanks ladies. Still feeling good this morning now have appointment with surgeon on 4th August to discuss what's next. They're certainly not hanging about as last chemo is 30th july!! It's definitely made me feel better about the hideous chemo knowing that it's doing what it should! Stay well one and all xxx

[Eira70]

Great news T3D. I love to hear this news must b very reassuring for u xxxx I had Mx first and while going through chemo am very aware of pain, lumps and bumps. Not sure how we get through these neg thoughts when acute treatment is over. But when I hear the results on tumour from chemo it helps cause this toxic poison they keep giving us must b able to track down random stray cell if it can half a tumour right. Enjoy the feeling we r beating this. Virtual hugs to everyone xx

[familytree]

I wondered why they dont use henna? semi perminant. Saying that, mine are so tiny I have trouble spotting them myself! lol x

[Molliana]

Great news T3D! I love hearing how much tumours have shrunk with chemo first ladies! It makes me feel good!!

Huneebee I am pleased you have settled things down. You can relax a bit now xx

[1981mum]

Great news from you too T!

[1981mum]

Great post hunbee, so glad you feel happy with your plan x
Go you! X

[Egret]

Thank you Huneebee, and well done! Understanding is so important.
Egret x

[newey47]

well done hun, all your hard work was worth it.  BUt as you said, it shouldnt have been necessary, it should have all been explained to you from day one.  glad you got it sorted anyway xxxxx

[Huneebee]

TD3 - fantastic news!

Egret. Planning went well after I stood my ground over a few issues. I'm now having brown tattoos that do look like freckles, but because I've raised it, funding is being put to the side to remove them if I want them gone after treatment finished. So I feel a lot better. But the radiologist nurse was the one who saved the day! And she dealt with the Consultant, she was a star.

Timings wise, they've given me two weeks rest after my last three week cycle of chemo. So I don't start radio til mid August. This will entail four weeks, 20 sessions for me.

As it is the school holidays, they put my Appts at 08:00 each morning to give me the whole day with the boys. Which is fab. I asked and the nurse wS great in making it happen,

So I guess, ask as many questions as you need to.

I also received more information about my tumour today, which clearly explained why I needed radiotherapy.

I'm glad I stood up for myself, which was how my Counsellor said to do, she advised me to explain to the team that I needed to ask certain questions and I needed time with them before agreeing to treatment. So it was a bit stressful, but I'm very glad I did. My OH was seriously impressed with me - there were no tears, & I politely kept pressing until I got the information I needed.

I do feel it's a shame I had to work so hard to be well informed. It would have been a lot less stressful if they had just given me good details about my cancer and the impact it would have on my health!

So my tip is ask away - nothing lost by asking & talking. Xxx

'

[newey47]

Great News T3D, so pleased for you xxxxxxx

[T3D]

Am grinning from ear to ear as I had a mammogram and ultrasound this morning and my lovely oncologist just called me at home as she couldn't wait to share my results - my tumour has halved in size and I still have one chemo to go! I am so happy all this crap is worth it 🙂 xxx

[Huneebee]

Egret, I hope you get better soon. I will let you know how tomorrow goes. X

[Molliana]

I too have chemo 6 this week. Been cleaning up the house and mentally organising things. Need to get food shopping tomorrow. I do not want to go! Bleh!! 😞

1981Mum keep us posted. I would imagine it would be weird to have something happening to your lump while on chemo. And things just don't grow that fast. But you need some reassurance xx

[Egret]

Fingers crossed, sending my love 1981mum, Egret x

[1981mum]

Sitting dreading chemo 6 this week..
Also I feel like my lump is growing, a few weeks back I could barely feel it but today it feels more pronounced again, hard and not moving
I'm worried this chemo isn't doing what IT should
I see my onc next week and going to ask for another MRI

[1981mum]

Hope you feel better soon egret x

[Egret]

Huneebee, please let us know after your planning appt. how it went, and also the timetable. I am longing to go on holiday after radiotherapy, but for the moment I am in full nausea and headache mode after no 5 chemo. Egret x

[Molliana]

You are welcome. I hope you are able to make arrangements so you are happy with it all.
Hospitals do vary so it might be that not all offer this but there were certainly many on the forum that had it. At least you can ask. I have met someone with the tattoos also and they are tiny. Like the size of a pin prick xx

[Huneebee]

Mollianna, thanks loads. That really helps. My planning appt is on Wed! Xxx

[Tussie]

Hi, had my first radiotherapy session today, all went well apart from the dreadful parking situation. Interesting to read the comments about the tattoos, I was never given a choice either and never thought to question it. Anyway, the marks a very small and will probably blend in nicely with all my other blemishes on my less than perfect body lol xx

[Jobey68]

I never even thought to question having the tattoos, I was just told that's what would be done, although they are minuscule and not visible , I've got one in my cleavage and one under each arm,they are like a pin head size but had I been told I didn't have to have them I probably wouldn't! Xx

[Molliana]

Phew ...I have found the post. This is what someone posted and lots of people responded with their stories and pics of their clear stickers! . . .
Hello everybody! I feel compelled to quickly write a post about permanent tatoos for radiation. It appears no one is aware we are not obliged in any shape or form to have them. I refused to be permanently reminded of this horrendous journey and asked for pen marks instead which they "secure" by placing transparent plasters over them. It is more tedious for them as they will regularly come off because of showering etc but never once did one of the radiologist complain having to spend 2mins remarking me nor did any of them ever think I was an exception to ask for pen marks. If they can mark you once within a millimetre, they can mark you again, they have all the measurements they need so there is no danger for future radiation etc as I have been assured by the radiology team. So ladies out there, make sure you enquire if these marks are something that you rather not have! We do have choices, you just need to speak up!!! It is just very quick and convenient for them to permanently mark the areas! Also soon there will be invisible uv markers. Amongst all the googling we do, this is definitely one worth googling! Good luck to all of you!!! Xx

[Molliana]

There was a post about the tattoos on the young breast cancer network saying something about you don't have to have them and they can do them in marker pen. I will see if I can find it x

[Huneebee]

Really glad I have a Counsellor today. I've been having a lot of pain eating and she's referred me to a specialist dietician to put me on fluid drinks to allow my digestive system to calm down after the final round of chemo. For the first time in my life, I'm looking forward to not eating!

Secondly, I was having a meltdown over the radiotherapy tattoos. It's hugely common and I can have them removed! She called radiology in front of me to sort it all out, and is writing to my Oncologist to firm up the Nhs funding for it.

The good news is that there will soon be fluorescent tattoos that cannot be seen! Unless you go to a nightclub!!! So much as it doesn't help us, there are changes coming.

So I feel a lot better about life. I just couldn't bear more reminders of what's happened to me. Silly really, but it mattered to me.

Thank you all for being there when I couldn't cope. Xxx

[Molliana]

I am her2 negative so not having herceptin. T3D glad it wasn't too bad xx

[June_BCC]

Hello 1981mum

Here is a link to BCC's booklet on Herceptin which is given to people with HER2 positive breast cancer

https://www.breastcancercare.org.uk/sites/default/files/publications/pdf/bcc41_trastuzumab_web_2014_...

Hope this helps

Best wishes

June, moderator

[1981mum]

What are herceptin injections? I don't think I'm due to have those x
Glad all going well T x

[T3D]

Hi ladies Happy Weekend! Had my first Hercepitn yesterday and it's been fine. No noticeable side effects. Having the actual injection wasn't great but it took about three minutes so not as bad as it could have been. The six hour wait afterwards seemed to take forever but my lovely mum came with me and waited on me hand and foot whilst happily chatting away. She's been a star! So to anyone starting this soon I'd say don't be worried it's do-able and way easier than chemo! Xxx

[1981mum]

How many weeks of normal do you have before surgery? Do you get a few weeks break?

[1981mum]

Thanks Jane, hoping it's a doddle compared to chemo x

[Jane1978]

1981- my bc nurse came out to discuss ev thing with me after if finished chemo went through everything down it may need another op if they don't take enough away first time etc (lumpectomy ) all
Seems pretty straightforward day surgery apart from the drains 😁😁😳😳 app there's nothing to em xx

[1981mum]

Oncologist- not one

[1981mum]

Oh ladies, really feel for you x
Must admit I'm a bit of a sheep and just do as I'm told. Feeling very grateful I see my one week before every chemo with a bc nurse.
I did try to talk about surgery this week and not in so many words was told lets get chemo done and we'll come back to that. Half my fault as I didn't ask specific questions
Expecting a wide local / breast conservative surgery but no idea what the hell that is lol
I think you are very strong for demanding you are better informed x

[Jane1978]

Baseline ???lol I'm
Abit thick sorry !? Lol

[Egret]

HI Janet1878! From what baseline.Egret x

[Egret]

Sorry a few mistake, chemo brain!

[Egret]

Hi Huneebee! Sorry to hear about your meltdown, I had one today at my 5th chemo. The Registrar oncologist who did not answer some of my key questions, including the fact that the radio will be on the left side by my cleavage - above my heart. Can it damage my heart? I went in, expecting to see my key chemo nurse. Instead I was told to go straight to my chemo chair because I saw the oncologist yesterday. At that point I melted down. It is true my oncologis saw me, but did she listen? Did she asked adequate questions? I lovely chemo nurse, not my key chemo nurse took me aside and I told her my 10 days of awful side effects after chemo 4. My oncologist said I didn't need to see a nurse, because everything was "perfect" with me! It beggars belief. I melted down again, tears in my eyes, whe the same nurse hugged me - the first act of compassion. She has some new medicine prescribed to me. I don't hold my breath about getting any explanation about my radio, as I said before. Inwon't sign and I won't have it, until I get a proper explanation from an oncologist. Perhaps in my next hospital? Take care Huneebee, let's hope for an explanation.
Egret, x

[Jane1978]

My nurse told me that radio gives u 40% more chance of it not coming back !

[Tussie]

Huneebee so sorry to hear you are feeling so low. I know what you mean by hospital talking to your cancer and not you. I have at times felt I am on this conveyer belt where your treatment plan is set from the start of diagnosis and there is no way of slowing down and say hey, now wait a minute, I want to be absolutely sure what you ( doctors) suggest is right for me. After surgeries and chemo I am starting radiotherapy this coming Monday. I am finally in agreement with this but not after requesting another appointment with my surgeon and oncologist to discuss options and follow up arrangements post treatment. Ask for a second opinion if you are not happy with your medics. Hope you feel better soon, take care xxx

[Jane1978]

Oh dear hunbee doesn't sound good I'm too going to be having radio and I don't know
Much about it other than gives you sunburn type itching skin !!!! Hoping not to bad don't think se r anywhere near like chemo(I hope) x

[Lucy_BCC]

Hi Huneebee
I'm sorry to read things are so difficult at the moment, along with the support you have here have you thought about our 'Someone like me' service, you can talk by telephone or email to one of our volunteers who has had similar experiences to you to help support you during this tough time

Please take a look via the link below and see if it's something which you feel would help:

https://www.breastcancercare.org.uk/information-support/support-you/someone-talk/someone-me

Our helpliners are on hand weekdays 9-5 and Saturdays 10-2 so please feel free to call for a listening ear

Take care
Lucy BCC

[Huneebee]

Hi All.

Egret, has your new hospital linked up with you yet, an appt??

How's everybody doing?

I'm having a complete meltdown. I woke up and just wanted to pick a fight with my OH. It's black & white for him. He can't see why I'm so afraid of Radiotherapy as everybody says it's a piece of cake compared to chemo.

But to me, it's more pain, daily hospital visits, more side effects, tattoos fgs! What happened to good old fashioned marker pens.

I feel the hospital talk to the Cancer rather than to me. They look totally perplexed that I'm questioning the treatment. I have a BC survived friend, whom I've known for years. She has tziezes and is on loads of pain. SE of radiotherapy. It's frightening stuff.

My brain has hit overdrive and I can't seem to get it to calm down. Almost like the mother of all panic attacks.

I feel like a zombie, doing Mum things with the kids, but like I'm not quite there. I'm literally sick of being sick.

My stomach is so swollen that I can't get any clothes on. This swelling of my digestive tract is blooming painful. When am I ever going to feel well or normal again?

[Egret]

Hi Jaydubz52! I had great hope in April with my Consultant oncologist and her Registrar, when the former agreed to an EndoPredict test, and the latter ensured that my chemo dates were around my trip to Italy. I thought I had a good rapport. You are right, it is the lack of access after this which was the problem. The outpatients waiting time was however unsatisfactory throughout at 60-90 minutes! Unfortunately, on 14 July, unlike you, after three months of mulling without access, the whole episode was shocking and I got no question answered about my treatment, Well, I will put it as part of my survival experience.
Keep well, Egret x