Dear All

I wanted to thank everyone who have found their way to this forum

I wish I had found it. 28 months ago when my journey started

It was such a relief to hear other peoples situations as it helped me cope with my own. The sign posting from nurses helped me to understand what was happening and what to expect where my GP failed. I was able to seek and give support.  Nothing on this planet can prepare you for dealing with cancer as a carer. I had no idea that it was a literal rollar coaster and when I thought I no longer had the strength left to stay positive for my husband -reserves came from deep inside.

He passed away on friday -the end was so sudden but such a relief to see his suffering ended.  I am so numb and this is all so surreal.

For those who are carers out there this is what I have learnt......

You are the forgotten ones who need to be so strong to support your loved ones through this nightmare.

Always look for 1 positive thing each day -even if its that the sun is out-find something to be grateful for.

Fight for care I had to contact MacMillan and the district nurses directly as the oncology liaison from the hospital was worse then useless.

Find 1 person at your GPs that actually helps you - our GPs should be struck off. I have now moved to a different practice- but it was to late for my husband. However one of the secretaries really helped with repeat prescriptions.

I had to self refer to get support for myself from cancer care in our local area-it gave me 1 hour a week of respite to help recharge batteries -it was so lovely to feel looked after.

It really helped to talk about cancer out loud. We both hit it head on so it normalised it in conversation with friends and family -it stopped people feeling awkward about the elephant in the room!

We made sure we talked about funerals so that now I have to actually deal with that reality I can do so knowing its what he would have chosen.  I knew that when asked 10 minutes after he passed away which funeral directors to go to and whether it was cremation or burial! Never saw that one coming so quickly after!

Go with your gut feeling and use any helpline available -I had to take my husband into hospital on several occasions against his will when things looked wrong.  The oncology team were amazing but he had at least 5 blood transfusions that were detected due to some other issue-or a result in me pushing for a blood test.  They also picked up when he had UTIs- even when his GP had seen him and failed to do anthing other then issue morphine!

Try and get time to give yourself an hour for you a day to help to take a breath and escape.  My dogs are my sanity -literally!

Finally I found using the headspace app helped me to learn to stop thinking and to go day to day. Don't plan anything that cannot be cancelled.  Allocate a 'stuff' box in your head-if its not linked to life or death then its not critical and be dealt with some other time-dont sweat on tbe small stuff!

After such an intense time focusing totally on supporting my lovely man I am now totally adrift

 At some point the immensity of everything will come home-but I have truely met some amazing people who I hope will become life friends and I feel so lucky to have had the chance to spend time with my lovely man. We were given a chance to make some lovely memories and that is what I now have to focus on. 

Good luck and my heart goes out to every single one coping with this custard cancer! (Im being polite!)

Xxxxxx