12 lesions on my brain, I’m heartbroken.

Sammystaff Hi & good morning, finding it hard to sleep! When I read the start of your post I thought great news because your oncologist doesn't want to waste any time! The sooner you have the procedure and start on the drug the better! To be honest, I just try to live in the day and not think too far ahead. It would be a shame if by constantly thinking "what next" you missed what's happening now with your children especially. Give yourself a chance, this has not long happened so you are not expected to be the strong one at the moment. Try to talk to your husband about how you are feeling and work together.

I think you are doing the right thing asking your GP for help. Before he phones, write down all the questions you need answered, and your husband's also. Please remember we are always here for you this is where you can come without upsetting your family. The Helpline for McMillan is there for you and have experience with all things connected to cancer. They may have some strategies to give you can try at the moment.

Please think! If they didn't think there was a chance of this treatment working they wouldn't have offered it! No one, not even the professionals can say when your life will end. You are incurable but treatable. Let us know how you get on with your phone call please. I'm sure others will reply later, in the meantime try to get some sleep!

Dear Sammystaff

Once you start treatment you may find it a bit easier. You might also be in shock, so if you can obtain counselling or similar that may help.

This is not an easy time and not being able to go to many places has left me thinking about it much more than normal - perhaps others have too.

Be gentle on yourself. Take care xx

Dear Sammystaff

I just want to come and give you a hug. It IS hard and there's no easy way to get through this in all honesty but it does get easier (but you can't imagine it will and that's fine, just do one day at a time) - I can't really explain why - perhaps we just adjust because we can't live in a state of being very upset all the time so you do slowly adjust to your new situation. 

I found the clinical psychology service at my cancer centre hugely helpful - I saw a clinical psychologist rather than the counsellor and it was very directive about how to deal with my feelings in relation to my children but she also explained a lot of the science to me which I found reassuring in knowing my children would cope well in life. I was directed as to how to explain things to my children at their different ages and how not to keep secrets and ensure other adults did as I asked in relation to them. There is a lot of knowledge and experience about how to steer young children through a trauma like this and some of it is counter intuitive (you want to protect) but once I understood a bit more, I was able to make better decisions and my children have coped well. They were crushed and my 5 year old didn't really understand - I was more upset really. Still am. 

I like organising (read: control freak) so I also found doing a lot of the admin and planning helpful too - my husband lost his father at the age of 7 and was really helpful in saying what he would have liked to know about his dad - he thought we should make videos like we did of them as babies so there was a record of me moving and talking - we just made a conscious decision to record the everyday like we always did rather than intentionally turning it into an emotional feast. The children enjoy watching themselves as babies and toddlers so we're assuming they'll enjoy seeing videos when older of our time now. 

I did my will again - we also got additional life insurance for my husband in case anything happened to him (in addition to our joint life insurance which we already had to cover the mortgage) so that they children had a lump of money to go to the guardians we had to ask to take them on if that were to happen. Awful but really necessary. Once these things are done which is a distraction and for me a focus away from feelings, you can focus on treatment and getting through each day as well as you can. 

I also had a couple of people who knew my children well whom I asked to be there for them so that if I was struggling, unwell, my husband was stuck in work, I could ask for help from and the children didn't feel pushed from house to house. I also very quickly clamped down on people talking about my cancer over the heads of my children. They do pick up on whispers... 

There is a lovely book for little ones about a string passing between people who love each other - I'll look up the title later. 

I hope that's helpful - I could write an essay but I just wanted to offer some practical insights that helped me initially. I really hope your cancer team can steer you well. My main focus now is not planning ahead and thinking about death (as it was in the beginning), I still do one day at a time - much easier. 

We also did some really nice things - nice holiday, afternoon teas, spa days - I was and still am kind to myself so that I can cope. I try and enjoy life while I have it - easier said than done but I hope you'll find a way of living with this new situation for you. 

Thinking of you... It is hard. 

Hi Clare 

I agree with everything you have said. I see a psychologist at my local Macmillan Centre in Harrogate every few months and she is wonderful. I too have a son 12 years old and the paperwork is all , guardians and trust in place. I agree doing the nicethings spas,holiday, afternoon teas. Being kind to yourself and one day at a time. Thinking of you Sammystaff and Clare .xx.