12 lesions on my brain, I’m heartbroken.

Hi,

I feel for you at your age with this diagnosis.

you may find it starts to get easier when you have a plan for your treatment .

i have brain mets and it was something I dreaded and now I have to live with it.  I have been able to make plans and I am on a targeted drug that helps my symptoms. the headaches are better  when I am on this drug plus I take pain killers.

I understand the shock you are going through.

let us know what the dos tor’s say they they can do for you 

love and hugs 

Hi Sammystaff,

so sorry to hear your news, like you I'm in the same boat as you, although its also in my brain lining, please stay strong darling, I know its hard, I have my wobbles, I have just started on prembo, although they don't think it will work, but I'm willing to give anything ago to prolong my time here, I have 2 adult sons and 3 grandbabies 5,4,&2, loads of memories to make with them.

your team will, work out a treatment plan for you, hopefully soon, positive thoughts and virtual hugs being sent to you 

love Max 

Hi Sammystaff  A warm welcome to the group although this must have been a terrible shock for you, I hope they have found them early enough to be able to find a treatment plan for you. As Max () has said, once you know what plan of action they have for you, I hope things will feel a bit better. Your children are so very young, I'm so sorry this has happened. We, the lucky ones, are talking about grandchildren, and here you are talking about children!

When do you see your oncologist again to discuss what happens now! I hope things aren't as bad as they seem to you now and when you next speak to your Team, have all your questions written down so you won't forget to ask what's on your mind. Just write them down now as they come to you.

i hope you will let us know when you find out what the plan is!

Good morning Sammystaff

I'm pleased to meet you but I really wish we had met elsewhere. 

You must be feeling devastated, more so even when your children are so young. I'm so very sorry for you, finding yourself in this group.I see Ruth  ruthjp has connected with you and she has a similar diagnosis so I hope that what she has said will ease your worries a little. Others have sent you messages of hope and friendship to which I would like to add mine also. This group will give you lots of love and support especially at this time when your thoughts are so confused. We are all experiencing similar feelings, no one wants to be here but now we're here we can find those chinks of light in dark times.

There's always a day when someone is around to reach out with support to help you or me or any other member in need. If you have a partner how are they feeling? There's a group here for them, should they wish to join in. There's also a MacMillan helpline 24/7 to ring for support, financial advice and guidance in many other ways so you'll never feel alone.

I look forward to getting to know you and sharing your worries. 

Take care and stay safe Sammystaff

Tvman x

Dear Sammystaff

Of course you're broken, that's devastating news, I'm so sorry. Brave of you to tell us all. I'm glad you've reached out as you're not alone in this. 

When my brain mets were discovered, that's when I too fell apart as it was such a shock to the system. My youngest child was 5 when I found out (she's 7 now). I was given a very short time frame and put all my affairs in order but actually they were wrong when they said treatment wouldn't be effective for me and I'm currently living well on treatment (immunotherapy). I even got my drivers licence back this week which was such a huge loss. 

It's hard as we're all different and I don't want to offer false hope but there are treatment options and you may have a lot more time than you imagine. There is a lot for you to process so for now know that this storm will calm a little (steroids are very good at managing the symptoms) and we're here to walk through it with you. 

Be kind to yourself and enjoy lots of cuddles with those little ones, they'll always remember feeling loved. 

Dear Sammystaff

 I am so very sorry to hear about situation. To find you have 12 lesions on your brain must have been such a shock. Did you have some symptoms that warned you or was it a bolt from the blue? 

I recall when I heard that the cancer was back and incurable. My girls were 10 and 13 and I spent a long time thinking very sad thoughts about how I’d miss them growing up and the mark it would leave on their lives. I realised I needed to stop as it was not helping anything. I needed to enjoy the days I do have with them, not pre-live the days I’m not here.  So I was very strict with myself. Every time I found myself thinking the sad thoughts I’d tell myself “don’t go there” or “don’t do this to yourself”. In the early stages, I was saying it several times an hour, sometimes out loud. Eventually, over a period of days, it began to work. I found I stopped thinking the sad thoughts and I was more able to enjoy each day for what it had to offer and enjoy my children too. Now I rarely think about it. I do sometimes well up when friends tell me they have another grandchild on the way but even then I can keep a smile on my face. 

I think it’s completely normal that you would feel in a daze right now and be unable to sleep. You have a lot to work through and it is going to take time. Sleep is really important and there’s nothing wrong with sleeping tablets. I don’t use them habitually but sometimes I find I need to reset my clock and then a sleeping tablet really helps. 

I really wish I could give you a hug and sit down with a cup of tea but I can’t. So a virtual ((((hug)))) will have to do 

Hi,

I am so sorry you find yourself here especially at such a young age, & fully understand how you feel about your family in this situation.

Once you have a plan in place things will become clearer, it will not be easy, but these days many people are living longer with new drugs becoming available all the time.

Try to stay strong, it will be difficult, but eventually you will find the strength to go forward.

Take care,

Love Georgette xx

Hi Sammystaff 

welcome to the group . I am so sorry to read what is happening for you and your worries and fears for your children . I am a mum too my son is not a young as your children but he is 12 years old. His dad passed away form cancer 2 years ago. I agree with the other responses that you have already had, when you can discuss a treatment plan it will help  things to become much clearer . After such devastating news it is understandable that your thoughts will go to your family and your situation. There are many on here who have had a limiting diagnosis but are still here and I notice others in a similar situation offering you love and support. Treatments are still being developed and trials are taking place, you are feeling there maybe other plans and discussions you can have with your doctor.

 we do not know each other but I just want to send you my love and support . To say you are not alone on this forum and there as you can see many of us who walk together on this journey . We may have different cancers but understand some of the emotions wer are all going through . Be with your children , kisses and hugs. Be kind yourself . We are all here to offer unconditional love and support.xxx

Dear Sammystaff

I am glad you have felt able to connect with this forum. It's not easy to tell people that you are ill. Everyone here is so welcoming, you can be honest about how you feel.

There will be a lot for you to take in, I hope you have a nurse and oncologist who you feel comfortable with.

Take care, there are friends here for you

Xx

Thank you all for your replies. I have spoken to my oncologist who wants to start whole brain radiotherapy straight away then start me on a drug called kadcyla. I’m still really really struggling emotionally, I can’t even enjoy any moments with my children as all I can think about is how they’re not going to have me soon and I just get so upset. My husband is really struggling to see me like this as I have always been the strong one and right now I’m far from strong. I am expecting a phone call from my gp tomorrow to check in so I think I’m going to ask if there is anyone I can speak to. 

how do you all manage it? Getting on with life without constantly thinking about it?