Newcomer

Welcome,  I am in a similar situation with my step dad,  lung with secondary brain,  I understand how you feel it's all so overwhelming,  I am new here too and everyone has been lovely,  lots of advice and a good forum to vent when you need to.  As I am in a similar situation, I will happily give you any advice I can, the main thing I can say right now is do not feel guilty for feeling,  and you need to look after yourself  both physically and mentally,  it is difficult as you just want to help them but you are also important. 

Take care 

G

Thankyou G.  I feel totally helpless. My hubby is 75, suffers from bad COPD too, I've seen a noticeable change in his appearance, looks so frail and I can't do anything but cry. He is being so brave. I have no idea what happens next, how long we have, I have googled til the early hours and altho most C sites say the same, I can't accept in my own head. I just feel lost. X

Manders

I am so sorry that this is happening to you,  have you had an oncology appointment yet? You should have a specialist nurse present with the consultant,  I have found her the most helpful,  also get in contact sooner rather than later with your local adult social care team.  They have lots of possible avenues of help that you might require,  do not try to do it all on your own , as I have found out to my own detriment we all need help.  

I will always be happy to help if I can even if it's just for you to vent at

Take care of yourself x

G

Hi G

We as a couple have met with different people, regarding both tumours, but nobody has mentioned adult social care team. Obviously we have been more interested in hubby's care than mine. All I know now is to turn up on Monday for a 5 hour session of chemo. Do I sit with hubby, am I expected to sit with him, is it not allowed...... Nobody has said. Its so frustrating isn't it.  

Hi 

Our local hospital allows us to sit with them whilst they have chemo, but you don't have to. Our lady did tell us a lot of patients will sleep during the session as they are in nice comfy chairs,  so maybe it would be good time to have some time for yourself, our hospital also gives free parking for people having chemo, so I would check for that. I would definitely give the adult social care a call, as they can help with all sorts or at least refer you to the right people.  I understand the frustration , as I have had to find most of this out on my own too, I would hate for anyone to have the stress I've had, so if I can pass on anything I've learned to help someone else I am more than happy to.  I have also found the brain cancer charity really helpful and they have arranged a call for me this Thursday to see if we are entitled to any financial help . They also have a dedicated Facebook group for carers,  which I have also found really helpful as the people are dealing with the same symptoms as we are. 

I hope that this helps,  I'm always here x

Thank you so much. X

How are things? Has anyone else been in contact with more info for you ? 

G x

Good morning G

I've spoken to Specialist Nurse. She is arranging counselling with Macmillans in the next week or so.  I found the report she did which gives me some letters T4 which I know is stage 4, then some others which I'm not sure of so need that clarifying. She also used the term "end of life care", when I said I was struggling with emotions etc, I thought I had misheard her, nobody has used that terminology before, so that's thrown me! However, I'm happy to seek counselling and hopefully helping me to stay stronger for hubby. It's all a blur tbh. Chemo starts on Monday and not sure what to expect. Remembrance Day 11th and appointment is 11am, certainly won't forget this one! Thankyou for asking G, I absolutely appreciate it.

Manders x

Manders,

I'm glad you are getting some help and information. I know that feeling we were asked about a DNR , we have the oncologist this Wednesday so hopefully we will find out exactly where we stand, it's definitely worth speaking to your local hospice as they have family services as well as help with the care. 

I'll keep my fingers crossed Monday goes alright for you xx 

Gill

Thankyou Gill

I'm scared stiff. But trying to hold back my tears this weekend and be strong for hubby, he must be even more scared than me. Thankyou for your kind words.

Mandie