New to the Group

Hi BernieS0128b0 

Welcome to the forums although I'm sorry you have found yourself here. The forum is split into different sections so its easier to connect with people in the same situation as you. I had a different cancer to you but find my little section very helpful and most importantly supportive. I have put a link below to the breast cancer section for you post.

 Breast cancer forum 

Sending hugs. Xx

Hi there.

I had ER positive breast cancer diagnosis in early 2021. I was 46 at the time.Unfortunately by the time I was diagnosed it had spread from my breast to my chest wall, clevical and lymph nodes. On my very first appointment i was told I had cancer,  had a biopsy and was told I would need chemo first  then surgery and then radiotherapy. I was in shock. My son was 11 at the time and I am a single parent.

I didn't know when chemo was gonna start so went home told my son  we both cried and then about a week later I got a phone call one evening to say they had a cancellation and chemo was to start for me the very next day. I was in utter panic. I went shopping to make sure bits in for my son as thought once I have chemo I eill be laid up so need to be prepared. My son had an eye test on the same day but luckily my friend took him after she dropped me off at hospital for my first chemo. I was bricking it to be honest. I didn't want it but knew i had no choice. I asked how I would feel once home and they said they don't know, everybody is different but that type of chemo makes you nauseous.  That was my worst fear as I hate feeling sick. I sat there as they put it in as it was fed into my vein via a syringe. I felt fine and didn't feel any different when I left the hospital. My friend had bucket ready in car just in case but I didn't need it. I went home and carried on as usual. A few hours later I started to feel sick  was wrenching over toilet but not sick. They gave me anti sickness drugs but they didn't do much. Anyway next day woke up and my mouth felt awful as if it had a film around it. It was awful, then next day my mouth got sore  ulcerated tongue and gums. Could hardly brush my teeth  even with baby toothbrush. I couldn't hardly eat, felt really fatigued. It was awful and then my hair started falling out even after first chemo. I had to be back for the second in 3 weeks. I really didn't want to go back but had no choice. I asked for strongest anti sickness this time which they gave me. Anyway after that one had same symptoms and gradually felt weaker and weaker. More hair coming out all over my body aswell as my head. My son was embarrassed for anyone to see me like it. I had 3 rounds of that chemo and then an ultrasound to see if it had done anything to the tumour. No it hadn't even touched it. I was heartbroken as I had put myself through all that only to find it had not worked. They then said right move onto different chemo, docetaxol. Well I was really reluctant to try another but had to. That one upset my stomach. I had tingling in my fingers and toes. My nails went all horrible on both my hands and feet. I still couldn't hardly eat due to mouth ulcers. It was hell. Anywaythank god after four months the chemo was over. I then had right mastectomy and lymph node dissection. They glued my scar as I have allergy to plasters so I could see it straight away. I was shocked as looked so odd but at least cancer was out of me. I could hardly move my arm at first and took along time to get it to move properly, I had drain bottle that I had to carry around with me for ten days. Not a nice recovery. Then couple months later started radiotherapy. I thought that was a breeze compared to everything else but then two weeks after finishing it my skin got very sore at top of my chest area, eventually was raw and got an infection so was on antibiotics to sort that out. I then developed lymphodeama and found out that is for life. I have nerve damage due to the lymph node surgery so my chest area and all down my arm feels swollen and numb in places. I also have ancillary web syndrome down my arm which is a tight cord like tissue so my arm and hand feel tight and I get alot of pain. I have nose sores all the time, my toe nails have all gone yellow and thick and look disgusting. I have no eye brows and only a few eye lashes. I am now on hormone treatment for ten years to keep the cancer away and yes it has done so far, I have just had my four year check but rhe anastrozole hormone has put me into menopause so have all those side effects now and plus I have just found out the hormone has caused me to develop osteoporosis so now I need treatment to prevent my bones from fracturing as the condition causes your bones to thin. I have constant pain in my joints now also. All in all it has been a long hard struggle for the last four years and is ongoing for a further 6 years as next year they will change my hormone drug to a different one so god knows what side effects will come eith that one. But the consultants just keep saying at least I am cancer free but they are not the ones living with the side effects of all these drugs they are saying I need. I never had a reconstruction offered to me either and now four years on still ferl a lack in my confidence as a woman. I have a false blood to put into my underwear but have never found a mastectomyvbra to fit during all these four years so just have to manage with a crop top and stuff thr false boob inside it and hope it does not fall out. This is a life changing thing that you are going to be reminded of every day when you look in the mirror and no matter what it will change you asxa woman but I am sure like me you will put yourself through whatever you need to because ofvyour son. Good luck with everything and I am here to listen without judgement whenever you need a shoulder to cry on or a rant about your treatment. Take care Tracey xx

Hello, I just wanted to say that I think you have been so brave and your son must be so proud to call you Mum. If I have one wish today it is that someone sees this post and enables the support you need to live your life to the fullest. You are certainly worth it. Take care of you

Thankyou so much for your reply.

No unfortunately my son never calls me mum. I so wish he would. Ever since my diagnosis in 2021 my sons behaviour towards me has changed. Whilst i was having chemo he was awful to me, he never helped me out with things around the house abd could clearly see i was struggling most days. He said i looked ugly with hardly no hair. It was really hard to take at times but i soldiered on. His behaviour continued to be awful towards me after that dreadful year of treatment.

Once he started high school in late 2021 he just seemed to be angry and off with me most days. He refused to even talk most days. I was beginning to think he hated me, probably resentment towards me for getting ill. Anyway i tried to reach out to his school without much success, they offered counselling via MAP but he only went once and refused anymore, and then i went to doctors, who were pretty useless themselves but did give me the option of trying to get some help by way of right to choose. Anyway my son himself one day just said he knew what was wrong and said he thought he was autisc. I then chose an online company who said thry do online autism assessments. Ten months later my son had his online assessment.

We only found out the results this year once the report came back that my son has been diagnosed with ASD. I wanted him to read the report but he was not interested and still is not. I don't think he has accepted things yet.

I have left things for now as he has just gone into his final Year 11 at school and it's an important year for him so just want him to do well and be able to concentrate fully. He is so bright and is doing so well and achieved very good marks in his mock exams at the end of Year 10 and the predicted grades for his GCSE's are very good so hopefully he will do ok.

He still gets very angry at times and just prefers to shut himself away upstairs playing his games most of the time but I now understand why he is like that and just prefer to not over react to things as some of his behaviour is just what is expected from a teenager afterall.

I don't know if i mentioned in my last message but i now have just been diagnosed with Osteoporosis. It is down to being on the hormone drug Anastrozole that i have to take to keep the cancer away. 

It has been four years now since treatment so the drug is working but obviously things are very different now and i have to live with alot of changes in my body and life long conditions that are uncomfortable but most times i am grateful just to have had these extra years seeing my son grow to almost 16 and hopefully i will have many more to come.

I do hope your treatment plan works out well for you going forward. 

I know its a scary thought for you now going forward but honestly if your cancer team are anything like mine were during my treatment then you eill be ok. 

Stay strong,  you can do this. I felt just as scared as you do now but just take one day and one bit of treatment at a time. 

You will get through this.

i am here if ever you need some reassurance. 

Take care

Hi BernieS0128b0 and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

Hi Tracey1629724b and a very warm welcome to the online community to you as well.