Hi, you are not on your own! My husband was diagnosed with stage 4 lung cancer 12 months ago which spread to his spine. I worry everytime he has a new symptom worrying about who I contact, if its normal or if I'm over reacting. We have district nurses and a palliative care nurse and carers 4 times a day but it can still feel lonely. DON'T be afraid to ask for support for YOU we need to look after ourselves as well. Take care xx

I'm so sorry,  my husband had to stop hus treatment as it caused 2 hospital admissions. He woke up one morning to find himself paralysed from the waist down, they scanned him to find it had caused spinal cord compression snd he's never regained his mobility. He gas refused any more scans and is getting very irritable with me.He never wants me to call the nurses, is now refusing to take any medication today as he has been sick for the first time and I'm sat here wondering what on earth I should do!!!! I know I should respect his wishes but it's so hard to cope with the emotional side of not knowing whether I should be contacting the nurses ir not! Family have been so supportive but their lives have to carry on with work and their own families. Happy to chat any time x

I'm so sorry that your husband has suffered/is suffering in that way. It must be really difficult for you both. I understand not wanting scans when there's not much that can be done and quality of life is being so badly affected. My partner has been sick every day since he started his treatment but whenever we tell a new nurse they are concerned it's a symptom of it having spread to his brain as my partner's primary tumour was on his scalp but nothing in the scans says it has.The irritability is difficult too. I sometimes feel like I'm going through the motions emotionally because reacting to everything would stop me getting up in the morning. My partner takes medication better now than previously. There's no harm in talking to Macmillan etc. for advice in handling his mood and symptoms x

I completely understand about going through the motions and it's so hard to explain what you are both going through to others who have not experienced it. Everyone's experience is so different isn't it? I hope you feel less alone being able to chat on here take care of you x

Hiya. I was in a slightly different position than yourself. My wife wasn't stage 4, but had very advanced local breast cancer. She had heaps of chemo and about the same again with radiotherapy. Then ops. She had a very, very rough time during her treatment and was rushed into hospital.

Putting her aside for the moment, it was tough mentally. She's not abusive in the slightest, but when she was on steroids and coupled with the severe insomnia, she was somewhat abusive at times and whilst everyone else saw the frail patient side of her, i saw her at her worst. I don't blame her at all because it wasn't her fault, it was 100% the meds. But it felt like it was me against the world at times. Very lonely and a very dark place at times. Like people who go through cancer diagnoses, only they know what it's like, and only carers know what it's like mentally to go through all this.

Society places expectations upon you as the carer that you don't matter, only the ill person matters. So you go through this journey with that mindset. Only, you soon realise this is all bull. You matter too. Without you having an outlet, the person that's ill ceases to have a 24 hour carer, so it affects them too.

The cancer support set up is actually very good once you know how to use it. I'm not meaning on the day to day things, because it lacks very much in that respect, i mean the outlet side of things. I found Maggies to be a godsend. There you will find people that have been carers a long with those who have went through cancer. It's there for you to use as a carer, just not for those suffering with the disease.

Hi, I know what you mean about steroids. My husband had a very high dose of steroids as a one off and I was called into the hospital at 4.30am one day as he had developed steroid induced paranoia and they were struggling to manage his behaviours...it was horrendous to witness this as it was so out of character! His cancer is incurable and treatment was meant to give him quality of life for the time he has left but it has actually taken it away from him which I find so sad.

You're right, we as carers do matter! My local hospice provide well being therapies, councelling  and support 24 hours a day if you need advice. Help is out there and it is so important to take advantage of it as a carer!