Breast Cancer Now Forum

Hi there MC22, and a massive well done for getting to dose number 4. A notification of Your message popped up in my emails and I’ve just read through our messages back in early January. You’re right the steroids cause insomnia but that will right itself once you stop taking them. I also piled on a stone in weight thanks to them too!!! And right Now I’m awake early because of the hot flushes!!!! I’ve started on tamoxifen for 10 years!!! Hey ho could be worse!!! So right now you will be feeling beyond terrible but let me just say that it does get better. Right now you will not think so as you have that horrible yet amazing stuff circulating through your body but it is now 3 months since my last dose and I am just starting to feel more like my normal self. My skin is less dry, my hair is really making a come back, I can almost have a bad hair day again, my energy levels are starting to improve. I’ve had to try really hard to be patient and let my body recover. I’m not the sit around doing nothing type but the fatigue has been really quite bad. The fatigue is a side effect of the radiotherapy too but the radiotherapy was a breeze compared to chemo. Non invasive, no needles, no major side effects (fatigue and a bit of sore skin like sun burn) and there was a bowl of sweets at reception with my favourite butter mints in!!! I also mastered su doku in the waiting room over the 4 weeks I had radiotherapy!!! This Coronavirus is not what you need on top of the stress of it all. I really do feel for you. I was just arranging going back to work in the next few weeks so was going to get my immune system checked to be on the safe side but I work in a school so that has taken the pressure off returning to work for the foreseeable as it is shutting on Friday. I have technically been self isolating since October so this is just a continuation for me and I am lucky that I live in the middle of nowhere with a field full of horses to keep me busy!!!! Please please please make sure you look after number one and keep yourself isolated whilst your body is so vulnerable. I never thought I would be in the vulnerable category but it is very real and makes you sit up and take notice of the seriousness of it all. With regard to your friends and family I felt the same way not wanting to add to their stress and anxiety whilst I tried to reach my decision. But they are there for you every step of the way. They will support you no matter what you decide. They just want you to be ok and they will do whatever they can to help. They can take the extra pressure and you will love them forever for their amazing support.  Again a massive well done for pushing yourself this far with the chemo, you have done amazing. Just stay focused and grit your teeth one last time through these initial days while you get it out of your system. You’ve done it. You’ve faced all of those fears. For me, 3months on, I can safely say I feel like I’m getting my life back. Looking back at our messages has made me realise how my mindset has changed for the better. And you will bounce back too. The anxiety will subside and your thoughts won’t be dominated by this awful thing, you will start to plan nice things, normal things, and once this virus is under control you will be ready to get back out there and live your life. in the meantime though please stay locked away and be kind to yourself (lots of people said that to me and it’s true) don’t push yourself or put pressure on yourself to be up and about doing things like you used to. Your body needs time to heal. If you are having radiotherapy too that will take its toll. But this is just a short episode in the rest of your life. And I promise you, you will get your life back. sorry I’ve waffled on again. I hope it helps you get through. Take care caroline xx  ... View more

That was definitely the hardest thing that it was just ‘back up’ and also that they can never say if it has been successful. They are pumping you full of poison and it might not even be zapping anything (apart from healthy cells!!!). Because of the effect it was having on me psychologically as well as physically I could not justify continuing.  I think I have been a very ‘demanding’ patient (I prefer that to difficult!!!) but hey it’s your body and it’s your life so don’t ever worry about that. The professionals must see folk like us all the time. I have asked a million questions every step of the way. Even my surgery was a huge issue. I had 3 extra meetings with the consultant before I was happy about the procedure!!!  I hope you get the support you need too. I am sure they will be happy to continue your treatment even after you said you wanted to stop. Good luck with it all. Xx ... View more

Hi Mc, it is a massively traumatic and stressful time and unless you have been through it people cannot really understand. The side effects are horrendous. Losing your hair is just the most awful experience. Add to that massive phobias with needles and issues with even taking a headache tablet makes willing turning up at the hospital time and time again to put your body through pure hell a real challenge!!! I don’t know what happened at your first chemo session but believe me I understand the battle you are having with yourself to try to carry on. It is also a huge decision to try to reach. I was totally stressed out about the treatment and then even more stressed out trying to reach the decision to stop. The hospital should be happy to let you carry on if you decide to. It may be beneficial to speak with your oncologist about the number of doses they would recommend for you. My chemotherapy ward was very flexible and I am very lucky to have had such a personable oncologist for the chemotherapy treatment. The nurses on the whole were very understanding and sympathetic too (some more than others) although I have to say I didn’t really feel like they fully appreciated my issues with needles. I had to have extra injections (one a day for 5 days starting 4 days after each chemo) to boost my immune system and this really pushed me over the edge and was a big factor when making my decision to stop.  i hope you have some friends and family for support too. I have 4 amazing people literally holding me up through this. None have had chemotherapy but they have tried to understand and have sat and listened when I’m ranting (which I have done a lot of!!!), hugged me when I’m crying or just been with me when I needed company. I am very relieved to be able to put chemotherapy behind me although I will have stark reminders of it for some time yet. If it’s not enough to cope with having the terrible cancer diagnosis you then have to try to survive the brutal treatment for it. But we will get through it. And we will learn to live with it always being there in the back of our mind. Right now you are all consumed with the horrors of chemotherapy. If it helps to think you only have to reach 4 then focus on that. Better still just think of taking one dose at a time with no obligation to have any more. As soon as I had the 4th dose I was wishing I hadn’t!!! wishing you all the very best whatever you decide to do. Keep in touch if it helps. I know I have rambled on a bit!! Just know you are not alone xx   ... View more

Hi mc,   I managed to complete 4 rounds of chemotherapy in the end. Had the 4th dose on 11th December and met with my chemotherapy consultant on 17th December and we both agreed it was best that I did not have any more. He did say that the minimum amount they advise was 4 and the maximum being 6 but he also mentioned that in USA they only give 4 doses. He said if I had not had 4 doses he would have tried to persuade me to carry on and reach 4.   it is a gruelling treatment and a very hard decision to have to make but it is up to each individual to do what is right for them. My consultant was amazing and understanding and very positive and supportive. I feel I will be able to live with my decision to only have 4 doses. The way I see it is my cancer may or may not come back during my lifetime and if it comes back there is no way of knowing why. Certainly can’t say it was because I only had 4 doses of chemotherapy. Even after 6 doses my cancer could still come back. It’s all so speculative. I still have radiotherapy and hormone therapy to come to try and keep it at bay.    Once I had made the decision a massive weight was lifted off my shoulders. My mind had been in total turmoil and suddenly it could rest.   i hope this has been helpful to you. It is easy for people to say ‘it’s only 2 more treatments just carry on’ or ‘you have started it now you may as well finish’ but if you are experiencing such high levels of anxiety over every last bit of the treatment it is extremely hard to grit your teeth and soldier on. I am not normally the quitting type but this had me beat. I found a good quote though ‘there is a difference between giving up and knowing when you have had enough’.  Do what is right for you. Make the decision, be positive about it and live your life.   Wishing you all the very best whatever you decide. I totally understand how you are feeling   with love Caroline  ... View more

Thank you to each of you for taking the time to post a response. I hope you all get notification of this message. I’m not sure how the forum works. Your words and experiences are being a massive help to me. There is a voice of reason in my head but it has been swallowed up by the doubt and the huge issues I have with the whole procedure from getting a simple blood test to the idea of the poison circulating through my body. The points you have made have brought back the voice of reason a little stronger again. I have been trying to tell myself that I’m not even getting major side effects and to pull myself together and get on with it. I thought the half way mark (3 of 6) would be a positive moment but it has been the exact opposite for me. Whilst feeling the full effects of the EC on Monday my mind was saying enough is enough. I definitely feel this is a psychological issue with me as I had major issues just getting through surgery. I am strong enough to endure the physical side effects but my mind is really getting in the way of letting me allow the treatment to continue (if that makes sense!!!). I am seeing my oncologist before my next treatment to discuss options. He was very convincing when I met him initially before treatment started so he might be able to re-convince me!!! I am also hoping to see a psychologist too in an attempt to get my thoughts in order. I can totally relate to the idea that I have come this far and should carry on. I am normally the type of person who does not give up once I’ve committed to something. Obviously this particular journey is a little more extreme than your average challenges. But the voice of reason is telling me to stick at it. I just need to get back in control of the doubt. I love the mountain lion story. Absolutely sums it up to a tee. I will show it to those closest to me who are having to endure this journey with me. I am really glad I posted on here. You are all amazing brave strong women and I appreciate your help and support so very much. I will let you know how my journey pans out.  C xx ... View more