I don't know how to feel

[SLO89]

My mum was diagnosed with stage IV lung cancer and a secondary brain mestases in February. She had been having tests for 4 months before I requested she have a brain scan. She had been suffering from weakness in her left leg and arm (similar to the effects of a stroke) to the point where she was crawling up the stairs.

On that test it revealed a tumour in the brain and 2 in the lung. Within a few days of those results, she was in having the brain tumour removed however they couldn't remove the tumours in the lung. After the op and a biopsy on the tumour it was revealed that she had lung cancer and that it couldn't be cured. The only hope was that chemo would reduce down the tumours in the lung to prolong life.

She had been in hospital for 6 weeks as the weakness in her left leg did not disappear so she is wheelchair bound when outside however can just about manouever herself around the house to go to the toilet, get to bed etc. Once they thought she was well enough she was discharged and then has since had 3 sessions of chemo. Before the first session of treatment it was discovered that the cancer had once again spread into the brain, however it was small so they hoped that the chemo would help. My mum has been relatively side effect free from the chemo aside from a little nausea here and there but other than that it's going well. The latest scan revealed that the chemo is working and is shrinking the tumours slightly and keeping them at bay, for now.

Now for someone who has rarely been ill in her life, the last 5 months it has been a whirlwind for my mum, dad and me and my husband. To look at her, you wouldn't even think there was anything wrong. Apart from her sat in a wheelchair, she doesn't look ill. She's having no side effects from the chemo or any symptoms from the lung cancer at all. And that's the hard part. How can someone look so well, and on the inside be so ill? How long can the chemo hold off the cancer until it wins?

I am so grateful that the chemo is doing it's job for now....but it hits me all the time as to the enormity of it all. My mum is my best friend and my rock and now times have changed and I've had to be hers.

My husband has been amazing and is my pillar of support to help me help my mum and dad. He is my positive side through all my negativity. You never want to hear that someone so close to you has the "C" word and I'm not sure it's really sunk in for any of us. I'm positive for my mum but when I'm alone I just can't help feeling low.

I'm not really sure what I hope to gain from posting this, but I know so many others will be in this position. I don't want people to think I'm looking for sympathy, but empathy I suppose. And someone to talk to that isn't connected....thanks for reading xxx

[hedgehoggy]

Hi well done for requesting a brain scan for your mum. It should be the norm for lung cancer patients. Did you say that the chemo is shrinking the brain tumour?

I too was not really feeling I'll when I was diagnosed with a shadow on my lung and that knocked me and my hubby sideways at the time but that was 2012.

Try not too feel too low and keep strong and write down lots of questions as you will bound to have lots. Sounds like your mum is getting the right treatment on the right track.

There are lots of friends here for you on here. Keep us in touch.

Best wishes

Hoggy

[LorraineD Partner Roy Castle]

Hello SLO8

Welcome to the community, much as we understand that if you had a choice you would not be part of it. It sounds as though for now your mum is doing well and coping well with her treatment. As you say that can lead to an odd contradiction between how she looks and how healthy she really may be.

You sound as though you have been a very vigilant and caring family which has been hugely supportive of her. As Hoggy says well done on getting her early treatment for the brain mets. That doesn't make it any easier on you wondering and worrying about what her diagnosis means for the future. Please do use the forum as a safe place to be as negative as you need to, to explore your fears giving you the energy to be positive with your family when that is right for all of you. Your worries and fears are one's many forum members do understand.

if you want to chat things through please do ring our helpline on 0800 358 7200, we have nurses involved who can talk through any questions or concerns.

Treatment options are changing and if you want to know it may be an option to ask your mum's lung cancer nurse what might be the next course of treatment if and when she stops chemotherapy. If she has had a good response they may want to take a "watch and wait" approach - so give her a break from treatment but monitor her health so they can do something if the side effects of her illness cause problems or if there is change in the tumour.

Sorry you find yourself amongst us, but do please share your experience and ask any questions.

best wishes

Lorraine @ Roy Castle Lung Cancer Foundation

roycastle.org

[jonnyd01]

Hi....i totally understand.....my beautiful wife 45 years old collapsed out of the blue 15 months ago with stroke like symptoms and within a couple of days was diagnosed stage 4 l/c with mets to the brain....she went down hill so quickly that chemo was out of the question and i lost her 13 weeks later.......That 13 weeks although we knew the outcome and understood what was happening i never really got it it really didn't sink in....what it really meant to us all as a family as it was a whirlwind round of drs,hospitals,drugs and caring for my wife....i just wish id have taken some time to see the enormity of what was happening.....so hard to explain.......so please give yourself time to step back for even 5 mins to see the big picture and then get on with creating as many happy memories as you can for you,your family and you lovely mum...Take care. John xx