Chemo - help needed

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 )

  • Mum seemed in a better place when I gave her some of your positive thinking and how far she had came - we are nearly half way through. I wanted to ask for some more help - I know we are all different and there is no wrong or right way of feeling - but any suggestions, anything else I can do or say that can help? I didn’t force the issue of carrying on with chemo or give any false hope but any more advice, I would be grateful. Thank you again - this forum helped me so much today - thank you x

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!

Jan x