Mixed emotions - anyone felt this way?

I am sorry to hear about your mum, LouLy, but I can totally understand how you are feeling. My mum is diagnosed with stage 4 nsclc this July, she has just undergone a course of chemotherapy but that didn't work, her tumour has grown and it has spread to new places. She is now having a course of radiotherapy to ease the pain the tumours are causing. She suffered so much during chemotherapy, all she did was sleep and eat (the same food every day, since she has a poor appetite anyway), and she has lost interest in the things she used to enjoy. Having been off chemo now, her sense of taste recovered and being a real foodie, she came up with food ideas everyday, it is almost as if she is "alive" again. 

After her radiotherapy, she could either have a second line of treatment, or opt for palliative care. Whilst treatment offers a hope of keeping the disease at bay for a while, the side effects strips off everything that she enjoys, it feels as if she was just "surviving", instead of living. There is also the lingering anxiety of whether it works or not, or if it does work, when it will stop working. I guess if she goes for palliative care, she won't need to put up with side effects anymore and the focus will be to get her as happy and as comfortable as possible. I know how it could sound to other people, but I feel exactly the same as you. I am so glad that someone else out there feels the same too, and you are right, it is about having control and having one focus. Thank you so much for sharing LouLy, your post has brought me a bit of comfort in the middle of a bad day looking after my mum. Take care!

Meryl xx

Hello Meryl, thanks for your kind words. I’m sorry to hear about your mum too, isn’t it such a cruel disease. I think it’s all about taking each day one at a time, I’ve found that I’ve focussed to much on the what ifs, what if mums treatment doesn’t work, what if she gets the nasty side effects, and now we’re left with a feeling of sadness of course, but one of defiance that we won’t let the big c spoil our time together anymore. It’s nice to know others feel the same, sometimes the treatment can be worse than the cancer itself in some ways! Mum hated the whole process, and whilst we didn’t want the treatment to fail, it’s something we have to accept and let go of. Take care of yourself, it’s tough to be close to go through this. I hope tomorrow brings a new, better day for you both xx

Hi!  I’m very sorry to hear about your Mum Louly123 and I hope the latest lockdown hasn’t made things even tougher for you and her.

I’m new to the online community but not new to living with cancer. My husband  was diagnosed with stage 4 renal cancer in 2014. This is my first ‘reply’ and isn’t it hard to try to find the words from the mass that are buzzing in your head?

Mixed emotions?  You could say that’s been the story of my journey. It’s such a rollercoaster and looking on can be so hard, especially when I see my husband suffering.

I felt a sense of relief when my husband’s first treatment stopped working because of the impact it was having on his quality of life. But it was keeping him alive you might say. But at what cost was my ‘inner thoughts’ response. I felt a sense of dread as he started his second treatment. Would the side effects be as bad? He had put on weight, started enjoying food again, had more energy etc etc since finishing the first treatment. I had my old hubby back again. I didn’t want to loose him again. But he was still full of fight and I knew I wanted him to stay fighting and the time wasn’t right to stop.

We were very fortunate that treatment  two worked well (with minimal side effects) until last year. It’s been up and down since then ( see my profile) and he has now started treatment three. 

He started to have episodes where his mobility became a problem at the end of last year and so I encouraged my husband to get ‘hospice at home’ involved which he did in March. They were fantastic and we got equipment in place, including what I call ‘an all singing, all dancing bed’, which he didn’t need at the time. More mixed emotions as I felt I was ‘giving up on him’, but his response was ‘what a good idea, I hadn’t thought of it!!’. And ‘hospice at home’ said that it is hard to be ‘forward thinking’, but if you can manage to be, it can save a lot of stress at the time when it becomes an urgent necessity. 

It’s necessary now as he can’t sit or stand for more than 5 minutes anymore because of the pain caused by the tumour in his sacrum pressing on a nerve. 

It is still early days for treatment number three. His medical team, who have been fantastic, still think there is a possibility my husband’s quality of life could be improved by the treatment and so my husband is going ahead. Mixed emotions again for me. I want to support him but it’s that voice ‘ at what cost?’ again. 

This is long isn’t it? Sorry! What I’ve tried to do in my ‘essay’ is demonstrate the mixed emotions I’ve had and am still having in the hope that you will find that supportive as you realise someone else has them too  

What I think is lovely about your post is the fact that you and your Mum are both feeling the same thing and as you say, although saddened by the news, you both agree that now is the time to stop and really enjoy what time you have left. Relief is good as it brings release. You are walking side by side and it is wonderful, and I’m sure it is a great help to your Mum, that you really understand how she is feeling and want to support her  

I know my husband and I will get to that point too eventually. I know I will feel relief too, so thank you for being honest. 

Hello there. Thanks so much for sharing your experience. It’s such a difficult balance of emotions to digest, especially adding the lockdown and restrictions on seeing mum. I really hope your husband is doing well with the treatment, keep the hope alive, these drugs can do wonderful things.

Mum got a call from the palliative care nurse, I was pleased she agreed to her coming to the house to discuss help they can offer. It’s really hard to think what might be round the corner when she looks so well at the minute, I almost think sometimes it’s easier to accept someone is ill if they are in hospital, your brain can rationalise the situation. It’s  funny the thoughts that enter in my head, sometimes thinking about the what ifs and worrying about my dad. But I guess that’s all pretty normal. 

The “at what cost” is a thought I’ve had a few times! People don’t really understand when I try to explain that, it’s only when you are in this situation that you totally get it. 

Take care of yourself, this is tough on everyone and even more so during lockdown!