There is no real emotional support for me - anywhere.

Hi McGinger and welcome to the community but sorry to read through your post.

I am the one with the cancer (incurable for 24 years reaching stage 4 in late 2013) so I am not in your shoes……. But I can understand in part as I see what my long suffering wife has had to go through over my 24 years.

We also have a big family and friends network but unlike yourself……. we leaned on them a lot as it was impossible for me but especially for my wife to navigate this unwanted journey herself.

She was certainly not judged in any way for being open and honest, all we received was support and help.

I am sorry to hear that your expectations as to how your family would respond would be as you say….. you know your family but until you push that door you won’t know if this will be the reaction.

As to accessing support services, from our experience we find that all these services are stretched so you not getting replies is unfortunately not that uncommon……. our approach has always been to sit on the phone to ensure we had not fallen through through the cracks in the system…… and in doing this we have eventually accessed the support services we needed.

Phoning to follow up on a service that you have not received is certainly not a sign of you failing,….. it is definitely a failure of the various support organisations……. so please do consider getting on the phone.

It is an emotional time supporting your  husband so you might find this Macmillan information your feelings when someone has cancer helpful as well as this link getting help with your emotions.

As for the practical and emotional challenges of supporting your husband you may benefit from joining and posting in our Carers only support group where you will connect with others navigating the exact same support challenges.

To connect with the group click on the “Bold Italic Link” I have created above then once the group page opens click on “Click to Join” when the black banner appears or “Join” under “Group Tools” (this all depends on the device you are using)

You can then put up your own post when you’re ready by clicking “+new” or “+” in the top right next to the group title. You can copy and paste the text from this post into your new post.

The Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.

We also have our Ask an Expert section but do allow a few working days for a reply.

Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area.

((hugs))

Hi McGinger reading your post through sounded very similar to me. I'm the carer for my wife who has stage 4 lung cancer. The hospice and Macmillan never did anything despite phone calls. Yes I have the booklets etc. The chemo ward are great and they are special people who you can talk to and engage. Often it's people who we don't know that well that step up to help, many hardly know my partner. I only have a small family and they have been good.

As mentioned before some people are like cancer ghosts, they conveniently disappear out of your life, some of them are scared , afraid to talk about it all, others may have there own health issues and genuinely cannot help. The third group it stirs up memory of there previous encounters with cancer in family and they want to bury it.

My best mate calls pretty much dried up once cancer was diagnosed. He never checks in by phone with me, just for 10 minutes, I tried phoning him and he never returned the call, the day after the full diagnosis. Despite his protests his phone is always on for me, 3 months later it's still the same. He won't even engage with me about cancer, chemo etc, despite everything I told him.

My doctor was concerned because I felt socially isolated and I think you are experiencing the same thing.

Regards x

Hello McGinger, you've definitely come to the right place- Macmillan - that is.  I'm a single parent and the one with cancer so I can only imagine the pressures put upon you hon.  The feeling of being alone is such a very common one and what others don't realise is that for you to support your husband you must have support yourself otherwise you will collapse.  

Our lovely and wise Highlander has given you all the info to navigate your way round this website.  Personally I'd start with the page just for carers, nothing you say honestly there will be a surprise to other carers.  It's without doubt one of the hardest places to be, that is caring with no help.  

You deserve help and no one person should expect you to cope with everything, you need time and space to manage your own feelings.   Go chase some good support for yourself hon and if you can let a more sympathetic family member know about others needing to help do so.

Take care x