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So I believe I have been very strong regarding everything I have and going through but past few days and last night it all got too much.
I couldn't sleep and sat up all night crying and debating to get in my car and drive and not come back.
I have had a lumpectomy and am now having to have a total lymph node removal operation on the 31st July and then chemotherapy and radiotherapy.
It is the chemotherapy that I just can't deal with and am seriously considering refusing it.
My reasons are I am such a sickly person and am always ill with chest infections as I have bad lung problems.
I know that the side effects from chemo are going to hit me really bad, I am really bad and can't take medications without being really ill and sick for days. I don't want my children to see me this ill for 4 and a half months and also I know I will end up picking up an infection and being so ill.
I want to ask how much I benefit from having it. Could I not just have the operation and radiotherapy and herceptin injections for the year.
Do you know anyone who has refused chemotherapy?
I am having a rough week , I have had 5 Docetaxel with only one to get . This is the first time I have felt like this ! All the others have been ok with only a few days of mild side effects .its the chemo plus the white blood cell booster injection that’s making me feel poorly . I am sleeping for Scotland and just feeling yucky ! Plus I’m feeling sorry for myself !! I also get Herceptin only getting 6 due to heart murmuri am a very sickly person but I asked for and got a 5 day slow release tablet and never been sick !! I asked for the packet this time so that I could share with other .
Aloxi 500 micrograms
I hope this helps , I get it before Chemo . I was sick this time BUT that was due to me asking for something stronger than paracetamol and being given Co-codemol and it was too strong for me - won’t take that again !!!
please ask all the questions you want as this is your right and they must be compassionate to you .
I was told by a chemo nurse - DONT GO LOOKING FOR SIDE EFFECTS !!! Not everyone gets them .
Phone the number on here 0808 one at the bottom , ( open till 8) I did in tears and a loverly nurse spoke to me , telling me facts and encouraging me to speak to my oncologist , I have done ! You must take someone with you to the meeting as my oncologist wasnt too happy at being questioned but all came well and I got all the answers plus they also learned a wee lesson too !
So ask away my dear , you owe it to yourself !
love and hugs
My face looks better when I smile - so smile it is !
Hi Kathryn123, I had a double mastectomy 22nd may and all my lymph nodes taken away on my left side,I start chemo on 19th July, I am 47, my kids and hubby are keeping my going, you want to get rid of it and they are offering both like they have to me, take it and you might not be has ill has you think,they Taylor it to you has an individual, (sorry you did not say how old you are).
Thank you for your messages.
I am 41 and have 3 children aged 15, 12 and 5 years old.
My eldest said to me last night I can't deal with you with no hair mum.
I wish I could just go away for 4 and a half months and come back when it is done.
I have probably done the worst thing and of course used Dr Google and you read such horrendous stories, losing toenails, finger nails, hair, being sick constantly, not being able to eat, sore mouth and it goes on and on.
It makes no sense that something that is supposed to be keeping you alive could make you so ill.
Thank you for listening
Hi Kathryn i had 36mm lump in 2 modes Her negative in 2016 .Emotionally I've had the hardest time but through chemo physically i was fine. Yes I lost my hair i wore a small chemo hat but put a wig on if my Grandchild visited. It seemed a long time then but once chemo finished it grew back quickly and thickly i had a short style anyway and now back to cut and colour every five weeks
I had no major side effects only a yucky mouth and horrid taste i had a few tired days but nothing major .I realise you have other problems and were all different but just saying all the horror stories on Google aren't true for everyone xx I've just been diagnosed celiac and this improved through chemo ! X
You sad it yourself - Dr Google is pure evil!! People sailing through chemo don't generally post or moan, you only hear the bad news. The side effects are possible so you have to be told them, but it doesn't mean you will suffer them. I sailed through fec chemo last year when I was 44. No sickness and no fatigue. I had a few bad days on docetaxel but only like bad cases of the flu and it only lasts a small number of days.
I used the cold cap so did not lose all my hair. I did not lose any finger nails, I was not sick at all and I could eat just fine - I actually put on a little bit of weight during chemo. I did not get a sore mouth and so on!
Sending you cwtches,
One piece of advice I heard which has stuck with me (and I wish I had heard it before I had my operation!).
Imagine the worst case scenario (which you have already done). So, now you must envisage the best scenario (which you haven't done). What you imagine and what actually happens are generally never the same. So by envisaging the best case scenario, you just don't know if this best case will be the case for you and all the worry of every single side effect will have been for nothing.
Yes your son says he can't take you without hair, but (a) you might not lose it - best case scenario (b) you could wear a wig around your son. Plus isn't it better to be ill (or maybe not....) for 4.5 months than run the risk of not being around for your children because you've declined life saving treatment? This might sound very harsh and I don't mean to be, but perhaps a list of pros and cons of having chemotherapy on a piece of paper in black and white for you to look at will help you make the decision?
What is a Community Champion?
Me and My Wig - everyone just thinks I have had my hair done a different colour !! I still have my hair due to my kind of chemo plus cold cap , but it gets flat and I always wear my wig after chemo . This is a free one from NHS Scotland . I went to a wig shop that chemo nurses told me about. , tried a few on and bought this one - I love it ! Tell your eldest you have been to hairdressers and take it from there . Friends have actually argued with me that it’s not a wig !
Have you taken note of the anti sickness from my previous message ??
Ruby Rose xxx
Looking fabulous Ruby Rose
As others have said, you've looked at all the negative parts of chemo and not everyone suffers all the side effects. I didn't get any sickness/nausea or mouth ulcers/soreness or nail loss etc. There are a lot of people on this site who have got through or are getting through chemo very well indeed without major side effects or infections - you could be one of them!
I was quite antichemo before I was diagnosed as I am emetophobic so don't 'do' nausea and sickness! However, when it came down to it, I just decided I was going to do everything in my power to get rid of the beast!
I think you may also have to consider that herceptin is generally only given in combination with chemo initially, so if you refuse one, you might not get the other! I wasn't HER+ so didn't have it, but I believe that is the case. Someone who knows will probably come along and confirm this or correct me!
Hugs to you, and good luck, whatever you decide.
Omg ruby you look amazing, you would never know it was a wig.
It really suits you.
Yes I have made a note of the anti sickness tablets thank you.
I am feeling much better speaking to you all you have been amazing.
Just to let you know that Herceptin is only licensed for used alongside chemo. Herceptin really is a game changer for her2+ patients so don't dismiss it out of hand Talk to your oncologist about your fears, I'm sure they'll do everything in their powers to make sure you don't struggle.
I am not medically qualified, please consult your doctor or undertake your own research.
Although I can't answer your question, what you wrote struck a chord. I have 2 kids and was feeling pretty much as you do now when I found out I had to have chemotherapy. The game changer for me in terms of how I think of the therapy was thanks to 2 friends who have had cancer experiences, one told me in no uncertain terms to do everything on offer and not risk leaving any gaps. The other changed my vision of chemotherapy, she kept repeating it's protecting me (she's a nurse and is due for her 3 BC op).
Now, to think that chemotherapy is protection was a real struggle at first, but then I used that terminology with my kids, I told them that the cancer had been removed and now the therapy will give me the best possibility of it never coming back and they have been fine. They don't want to see me without a hat or wig, they sometimes see me tired or not 100% but I really did think things would have been harder for all of us but it all just needs time, adaptability and I know it sounds preachy but positive thinking...
I've had therapy with ladies who saw their tumours shrink or virtually disappear pre-surgery, this forum is full of them, so yes it can be aggressive, but it also works.
I'm 6 months in, you'll get there too, in the whole scheme of things its a year or maybe less of our lives, and a very small price to pay for our health and time we get to spend with who we love.
Keep posting, as you've already seen, the ladies here are amazing.
All the best x
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