Hi Jan been reading your messages and find them helpful, just wanted to know how you coped with Chemo my Oncologist believes in it and has given me 6 weeks to make up my mind about having it, I am 77 and she said they have a lot of patients my age going through it, she is ringing me on 8th August for my decision. The last MRI wasn't good more Tumours in the Thorax she has put me on Extresmetine and taken me off other treatment I jus have bone injection in my arm. I really want to talk to someone who has been through Chemo is it worth having will it shrink the Tumours will it give me extra time who knows obviously I have questions for her I know it's my decision only but just want some advice.
Turn Emmerdale off 🙂 I am with you that this group is so helpful and just shows what kind people there are. I hope they begin your mums treatment soon. I found for my mums sake, the not knowing the plan in terms of treatment really tough. It was comforting once the letters started to come through with appointments. All the best x
I also agree re emmerdale it’s scaring me to death! My mum was diagnosed in May with stage 4 cancer spread to lungs and bones and spine and she hasn’t started any treatments yet and lost lots weight. This site has kept me positive with all the stories of people being able to be managed and that it’s not an instant death sentence. My mum is also following Emmerdale and I don’t understand why she is being told already it’s not working and she’s dying next week! It’s freaking me out and worrying me!
Thanks so much Jan. Honestly your messages really help. Before I got this response, I screen printed some of your other messages last night and I’m going to send over to my mum. It’s honest but full of hope and I think will help my mum. It’s mums 5th chemo session today so I think it will help.
Luckily enough my mum is all about the tennis so won’t be going near Emmerdale. I’m watching it though and it feels very negative. Although I’m sometimes emotional and only just beginning to try and understand this situation although not taking life for granted has never been lost on me, watching this programme isn’t making me emotional. It does feel a little removed from the modern world of treatment.
22 years is amazing - long may that journey continue, I shall be passing that on.
I will pass on the course and other pampering suggestions - they sound great. I have a feeling mum won’t fancy it but it’s all understandably changeable so it’s worth a shot. I have just ordered her some eyebrow stencils and I’m now going to order some magnetic lashes from what you’ve just shared. Hopefully it’s worth a try.
thanks for the advice on thinking positive. I really will take this on board. When she had her moment on the weekend and she said she wanted to stop treatment. I think she was surprised I didn’t force it - yet I just shared the reality of the modern world on options/ treatment. My mum asked me what happened with my father in law who passed away, about 18 years ago! This was an opportunity to share how different, how far more advanced it was and her eyes widened when I said a lot of people on this journey sometimes think of it as a chronic disease - I do think she has got some perspective - yet I am going to do my best to respect her wishes.
i go to some appointments with mum, more around the results - I’m there as much or as little as she wants and I go with it on the questions as she doesn’t want the long term info from what I can gauge and actually with all the types - it’s a very individual journey, that is hard for them to predict.
I did a lot of reading on TNBC, even from when I started to read in April until now, it felt there was a lot of time and research going into it and developments were happening with Trodelvy - genuinely think and hope , there is a lot more to come in this space. I do think a kitten could be a good plan if your other cat wouldn’t mind - I bet you’d love a cuddle if he/she didn’t keep bolting 🙂 Thank you Jan, I really appreciate all of your help and hope. I hope today is a good one 🙂 xx
Hi Thumper (love the name!)
You are taking the right approach with your mum. You can’t impose what you know is right for her. You might start by finding out if she’s watching Emmerdale. The Stage 4 breast cancer story-line is overwhelmingly negative and personally I feel that, although it is raising awareness of what a rollercoaster it is for everyone, for us TNBC viewers, it is discouraging.
But your mum isn’t triple negative so there are many more routes to explore. OK, they are horrible but they can extend life in unexpected ways. I have come across a woman in a Facebook support group who is 22 years down the line!
I’ve never really ‘got’ the issue with hair - it grows again. You might encourage her to take part in a Look Great, Feel Better course, which involves some pampering and guidance on using makeup to compensate for hair loss. It also involves a lot of laughing too, which in itself can be transformative. I must admit that it was losing my eyelashes that nearly broke me.
Try to get her to accept some pampering. Reflexology is a good place to start - find out if the hospital has links to free resources like this or find a local reflexologist. It is very relaxing and soothing, not intrusive at all. Is there a Maggie’s Centre you can access? It doesn’t have to be attached to your hospital. It’s available to anyone affected by cancer, yourself included. Maybe talking to one of their counsellors would help you find ways to keep your mum going. Consider a spa day or spa break, just you and your mum and a lot of pampering. If you’re interested, send me a message and I’ll pass on the contact.
The halfway mark is tough. Please don’t use the words ‘think positive’. She is perfectly entitled to feel whatever she feels and it is her choice. She is going to feel helpless, mentally and physically at her limit and wonder how she can go on. But the fact is, we do. I’m Stage 4 triple negative. I’ve never asked for a prognosis but I know it’s poor. But I’ve already passed that mark and am still on my first line treatment. I don’t have children to live for, just (?) a husband and a cat who bolts whenever I enter a room (I sometimes wonder if he senses my condition). But I just want to live while I can. I’ll worry about the worse stuff when I have to.
The important thing is to help your mum change her thinking from Stage 4 = death sentence to Stage 4 = manageable chronic condition. Times have changed but generally public thinking is stuck in the last century when it comes to cancer. As regards hope, do you accompany your mum to her oncology consultations? Acting as her advocate (with her permission) can be very useful so long as you check the questions with her first. Some of us just don’t want to know the answers and just go with the flow. If you feel your mum is depressed, go with her to your local support centre, find out what’s on offer (post-Covid, most support services are opening up again); ask her if she feels that talking to her GP might help.
I don’t think all the usual suggestions like draw up a bucket list of life-altering experiences like bungee jumping would be helpful here. You need to help her see that this is not a hopeless situation and there are alternatives to the misery she’s in right now. But do remember - chemo can cause all sorts of problems including physical and mental fatigue. Tread carefully.
I wish you and your mum all the best. If she wants to come on here and have a rant to me using the personal message facility, she’s very welcome. There’s also the Someone Like Me service where you’re matched with a trained volunteer in a similar position and you have telephone chats. Good luck!
My mum has been recently diagnosed with stage 4 breast cancer - her 2 positive. Mets is to the liver, yet only very small lesion. Mum is nearly half way through her chemo, her hair is thinning yet she still looks well. On the whole compared to what some people experience physically she’s doing well, yet no doubt with the hair loss , it has affected her mental well-being. Mum is a animal lover and keeps herself to herself so only talks to me, she also doesn’t read or go onto forums so doesn’t have any outlet. Today when I visited mum (there’s a fair distance between us, location wise) , she mentioned not wanting to carry on with chemo. Not really due to physical side but around she doesn’t want to be a worry, wants the cancer to go and what is the point. I told mum that I would support her no matter what. Yet all the positivity and helpful forums - there is so much after stage 4. (I can’t thank you all enough as without your shares - I wouldn’t have been able to help or have a small understanding - I was able to share your stories and positivity )