Frightened of the future

Hi ,

I just want to say that you are not alone. I think all of those emotions are perfectly normal. It all feels a bit surreal. 

I am waiting on results and finding the waiting difficult and I am going through the same range of feelings. Sometimes it

is hard to find the right words of comfort because you are also in shock, but just being around one another can often be

enough.

This situation is also very new to me but I have found support and empathy on this forum. I am so grateful for that. Take

care of yourself and post here whenever you need. Many people will help you and your family.

I’m so sorry you’re both going through this - it’s truly awful and there’s no getting round it. I was diagnosed with a grade 4 astrocytoma three years ago, they removed as much as they could safely, and I’m doing ok after chemo and radio, taking life one day at a time

But the first part, where you are now, was by far the hardest and I wish I could tell you how to make it easier. Of course you’re both angry, sad and frightened, but you’re still there for each other and your son. Do whatever you have to get through this first part, I promise you’ll find you’re stronger than you thought. And that doesn’t mean being stoic all the time either - I remember screaming into pillows a lot. Find the people who are good to be around, and leave the rest for now. And remember the basics- eat, sleep, meditate, watch movies, whatever works for you (I painted rocks, took my mind off the waiting for some reason)

Please ask any questions you like - I’m still learning, but if I can help, I’m here for you. And I’m sending much much love, Alex xxx

Also feeling lost and low and desperate are normal, it’s a lot to take in, for me at first I used to get up really early make a coffee and go outside and just cry away from my children and partner i was doing this for ages until one morning I just thought why cry it’s not going to change anything live everyday to the max and make all the memories I possibly can I wish you all the best Xxxxxx

Thank you for your comforting advice. It helps enormously as it can be a lonely place particularly at night when your mind wanders to all the possibilities. x

Thanks for your reply. It has helped. Take care. x

The night is the worst isn’t it? I don’t know if it’s mental or physical (even pain can hurt more at night), and your mind goes to some very dark places. Then in the morning things feel so different

I’m up latish so often about for a chat or just a virtual hug  

HI Jet37

a warm welcome to the group. So sorry to hear about all that's going on.

I supported my late husband through the 3 years of his glioblastoma journey and the phase of the journey that you are in just now is one of the tougher ones. Not knowing exactly what you are dealing with is 1000 times harder than knowing what it is and what the plan is. 

For now focus on the facts as you have been told them. That's more than enough for you to get your head round. Steer clear of  Dr Google. He's a scary dude! Use the time just now between appointments to write down all your questions, fears/concerns and take those notes to the next appointment. They'll act as a script and help to ensure that you don't forget to ask about something that's important to you both. These early appointments can feel totally overwhelming.

All the emotions you are experiencing are perfectly normal It's the strongest most resilient people who show those emotions as it means that you're dealing with them rather than bottling them up. Don't be too hard on yourself.

I have written a few blogs over the last few years and I wrote one about the start of our journey that might resonate with where you are at. Caring for a partner with a brain tumour – a Community member’s story - Macmillan Online Community

This is a safe and supportive community as you've already seen. There's always someone about to listen who gets it, someone to hold your hand and someone to offer a virtual hug when its needed. You're not alone. We've got you.

My kids were slightly older when their dad was diagnosed (20 and 22) but one of our other members had teenagers when his wife was diagnosed. I'm pretty sure he'll add his words of wisdom about how to talk to teenagers about what's going on. In my experience, its best to be open and honest but use language that won't scare them. You know your son best and I'm sure you'll find the right words at the right time.

It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

For now though, I'm sending you all a huge virtual hug and lots of positive energy. Stay strong. You're coping so much better with this than you give yourself credit for but you'll just need to trust me on that.

love n hugs

Wee Me xx

Hi my partner has lung cancer  his on a trial.but now found mass on brain.we have waited two weeks to start radiotherapy Monday 3rd.the waiting time is horrendous.my partner is really struggling I'm feeling not great.just hoping more answers Monday.got big family that are there for us but we both just want to be left alone .I don't no if we're doing right thing? We to are very frightened why us life so unfair.only just joined .feel very related to what your going though. HOLLYF

Hi Holly,

It's a really tough time and I do understand that you both have support from others but it can overwhelm you. Hopefully, the start of the treatment will provide some relief because the waiting is horrendous.

Like you, I have a loving and supportive family but I so wanted to spare them the worry as I am the mum who always reassures them. They are adults, but you always want to protect them no matter what age they are. I told my son and my youngest daughter today and they were stunned but so loving, Tomorrow, I will see my elder daughter and break the news. 

Today, my husband and I worked for a while in the garden and it was good just to get out for some fresh air. I hope that apart from the medical appointments etc. you can find some time together that gives you some sense of normal life. It might only last for a short time but it offers some relief.

Sending you love and kind thoughts. Keep posting if it helps. I know that it has helped me just knowing that there is support out there . Take care, Holly. 

• Thankyou just be happier when treatment starts .that's tomorrow. Feels long time coming.