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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.
Thanks for sharing this. I'm going through this at the moment with my dad. He was diagnosed with terminal prostate cancer in August 2015 and given 12-18 months. It has spread to the pelvis, lung and spine. The only treatment he was given was hormone injections into his stomach, and he seemed to rally and I naively thought the doctors had made a mistake. In early 2019 he started to become very unwell with stomachs issues msinly, then pneumonia, and was admitted to hospital every few weeks. Now the docs have said he is in the final T4 stage, which could last a few months or a few years. If he has a year like last year, I'd rather he was to die than go through that again. He's a shadow of himself, in pain, confused and cared for by my mum, who is tired and worn out. (I live 400 miles away so only see them every other month, but have 2 sisters who live 50 and 150 miles away so between us we visit, but can't do much to ease the strain for her) the guilt that I can't be there more is immense, as is the hope that he dies a quick and comfortable death, like your mum did. I think he feels the same.
I've never posted on here so probably can also be described as a 'lurker'.
I just wanted to say thank you for your post, it has made a real connection with me. My mum was diagnosed with oesophageal cancer in Feb 2018, had a course of chemo, followed by an oesophagectomy, followed by a further course of chemo. She did really well despite the doctors telling us how weak she was. Mum got the all clear in Jan 18, however in Sept 18 a scan picked up growth in the lungs, although they can't be sure it's cancer they have told us, either way no further treatment will be offered. I am heartbroken. Mum has been having scans since and there is some growth or lesions in the lungs but still no confirmation. Mum again is either not accepting what is happening or trying to protect me, my brother and sister. My younger sister has learning difficulties and epilepsy so needs a full time carer (this was mum before she was ill but now me and my brother do it. I am trying to protect my brother as much as I can as he is only 24 and lost my dad when he was 7, I'm only 28 but feel responsibility as the oldest.)
But we have to take each day as it comes. And I'm lucky that my partner is with me every step even if he doesn't quite understand what is to come.
Thanks Steve, I am sure she is proud and hopefully sat somewhere with a glass of prosecco!
Hi Hattie26, so sorry to hear about your lovely mum too. We really do sound very similar, my brother is 24 too and I’ve also lost my dad, it’s so hard isn’t it, trying to be the oldest holding everything together. Sometimes I feel in my head I’m still 16, don’t know about you but I really wish I’d appreciated when everything was simpler!
My grandad had oesophageal cancer too, although he was probably a lot older than your mum, it was really hard, especially as he wasn’t really able to eat much which really affected his weight. I really hope the lesions on your mums lungs don’t turn out to be anything sinister. If it does, I used to try and not think about the future but just think about each day, as I didn’t want to waste any time I had with my mum worrying, because that would mean I had to go through it twice. If she had scan results coming up, I’d deliberately not think about it until the actual day of the scan or else you could just torment yourself. Sometimes I’d also feel a bit selfish thinking about all the worry I felt, when I’m not even the one who was ill, but someone told me that it can often actually be harder on the family watching their loved one go through it. So glad to hear you have a good partner, that will get you through although I think unless anyone has been through something like this, it’s hard to understand all the emotions. I would say though if you’d told me two years ago what would happen, I’d say I wouldn’t have been able to cope but it’s actually surprising how you manage to get through everything.
I really hope your mum is ok, she is so lucky to have you!
Hi Jjo1970, so sorry to hear about your dad, what a long journey he has had, it must be so hard that you live far away, but I’m sure him and your mum would still want you to live your life. Does your mum have any help from carers or anything? It must be so exhausting for all of you. I really hope he gets his pain under control, thinking of you.
I feel so guilty that I'm not thinking of him night and day, but it's my poor Mum I feel for. He has become so dependent on her (sometimes unneccesarily) she feels she cant go anywhere for any length of time. I feel more guilt about not being there to help her out.
thank you for posting , I'm really so very sorry for what you have been through with your poor mum.
My mum has just been diagnosed with bone mets in her shoulder ,sternum, spine,ribs and pelvis just 13 days after ending her treatment for breast cancer, I am absolutely heart broken and at a loss of what to do for the best.
Like you my mum is my best friend, we are always together ,I just can't get my head around it. I don't know if i should be continuing to work or call it a day to spend more time with her? It's just horrible and I am hoping and praying the hormone and chemo tablets will help to keep it at bay.
I wish you all the strength in the world to stay strong you sound like you're doing a brilliant job xxx
Thank you so much for sharing your story and that of your mums story...
i lost my Dad to Stomach Cancer 1986...
He was told on his birthday the 12th of April 1986. ( a similarity to your story,)
He was given 3 months to live and passed away on June 21st 1986. ( it truly was the longest day....
I live in the North my dad passed away in Norfolk, I only managed to visit him once in the early part of his diagnosis, and I felt a lot of sadness that finances prevented physically visiting going him more.
I earlier posted a poem in the poems for life thread. And not long after saw this post...
your mother would be very proud of you you did the kindest thing at the end, and that was not adding mental pain to the physical pain...not knowing what was happening helped her to pass peacefully knowing in her heart she fought this shitty evil disease to the bitter end....
she also hung on for your boyfriend....how amazingly strong and intuitive is the human spirit...
i wish you happiness and peace in your life..
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