Hi all, I’m new to posting on this site, having always been a bit of a ‘lurker’ reading various comments and looking for advice. Hearing about other people’s experiences really helped me through the last 2 years, so I thought I’d write down mine to see if it helped anyone else!
In January 2018, my lovely mum was diagnosed with triple negative breast cancer, she was 57 at the time. She had a bit of a burning sensation in her chest, so the doctor did a chest X-ray but said it was clear. She persevered, thinking it was maybe just anxiety or something, but then she noticed a pea sized lump pulling under the skin. Hard to believe that something so small could be so serious! Many tests and biopsies later, she was diagnosed with 2 cancerous tumours and an area of concern throughout her breast. They didn’t tell us much about it (no mention of size, lymph node involvement or hormonal status) but gave us a little booklet that said stage 2. I suppose I thought that was a good thing! As the tumours were attached to muscle (a bit of a worry), the plan was chemo first, so she embarked on 3 rounds of FEC, to be followed by 3 taxol. After the first 2 FEC chemos, she went for a scan (just routine we were told) but when she went for the results, they told her that the FEC had no effect, the tumours had doubled and unfortunately the cancer had spread to her sternum. It was at this point she was told she was incurable, only 3 months after being diagnosed, on 5 April 2018. That day was probably one of the worst days of my life. They hoped to treat her to extend her life as far as possible and we did not ask for a timeline, keeping as positive as we could!
Over the next few months, she had 5 rounds of taxol which actually worked to stabilise the tumours...winning for once! However the taxol was taking its toll on her body and after chemo stopped, a few weeks later she noticed her tumours getting bigger. She then embarked upon 27 sessions of radiotherapy, which caused her such bad burns (we thought the radio was meant to be easier!) but she persevered and finished that treatment in the October. 5 weeks later, whilst the radio continued to work, her burns healed but she noticed shadowing on her other breast, the cancer had spread. She wasn’t ready for more chemo, but there was no choice. I suppose I took comfort the scans showed it wasn’t in any organs, but I didn’t take into account that her body was getting weaker and weaker from so much treatment in a row. She started Carboplatin chemo in the December, having 3 sessions before the doctor decided it wasn’t doing anything and the tumours were fungating. Mum had then developed pins and needles in her hand and a weakness, with her shoulder causing her so much pain. We thought this meant spread but scans didn’t show anything (something that we naively celebrated!) She embarked on another new type of chemo, Eeribulin, but during this chemo she started to lose weight rapidly (and she really didn’t have any to lose), she was also sleeping more and had episodes where she wasn’t really herself and didn’t really know what day it was or what was happening. After the 2nd eribulin, they decided to stop treatment. By this point, because of these episodes, we didn’t tell her that there was no more, we just told her it was delayed which she accepted with no question. It’s almost like she didn’t accept how ill she was or maybe she couldn’t deal with it. On the 12th April 2019, she passed away, warm in her bed, at home, with me by her side. She waited until my boyfriend arrived (he was travelling through the night) and passed away 3 minutes after he came- I believe she knew.
I’m 31 now and have no parents. My mum was my best friend and sometimes I just can’t believe she isn’t here anymore. She was the life and soul of the party! I am trying to cope by trying to think of all the things I am thankful for; I’m thankful for the fact that despite all of the above, she only spent 2 nights in hospital, she also didn’t have to go into a hospice as I was able to look after her at home and when she died she wasn’t in any pain, she didn’t even have to get a syringe driver. She also never had to deal with being told her cancer had spread to any organs (I don’t think she would have coped, even though to this day I think it had and the scans just didn’t pick it up). At the time, I didn’t think I could ever manage without her, but I suppose I am. It’s hard, but everything I do, I think of what she would say and that gets me through. For anyone who is going through something similar, my thoughts are with you, it was truly the hardest period of my life but you will get through it.
Hi @nik1988, thank you for sharing this story and I sure your mum is proud of you. You are right that many find comfort here just by reading the stories and the feeling of not being alone.
<<hugs>>
Steve
