Mri scan

[LilyMir]

Justin, we are here for you, you are not bothering us sharing your fears and journey. Try to find a patient advocate in your system ASAP. You should do your best not to wait given they were already wasting your time not properly monitoring you. Call around and seek a second and a third opinion if needed. Ask where the best gamma knife surgeons/radiation oncologists are in the UK and try to get them to treat you if that is possible. Part of me wonders if your original gamma knife was botched and that's why the lesion remained and grew. Good experienced doctors make a difference. Keep reminding yourself that the assault may have been a blessing in disguise as you now can start demanding treatment. You and your family just have to focus on getting you then best care as soon as possible. Your life is precious, do not give up! 

[JuneK]

Hi Justin, I am so sorry you are going through this! I don't really know any advice other than please do not give up! Please know we are all sending our prayers and best wishes for you. You mean so much to this forum! I haven't been here all that long, but I really appreciate how you are always there with a kind word of support for everyone. You have really helped people and we all want to help you in return. I wish I knew some way to help, but all I know to do is to let you know I am thinking about you and wishing you all the best to get through this scary bump in your journey. 

[Judy M2]

Justin, share whatever you need to: the good, the bad and in between. You are not a bother! I've had very bad days and almost died after treatments, but I'm here to tell about it. You've had a recent major trauma, so don't let that color your overall thinking. One day at a time. Hugs to you. 

[Justin1970]

Thank you everyone 

I know everyone is here for me and that means so much, I don't want to be a burden to anyone and my family are going through this aswell and it really hurts to see them so sad, I don't want to be the one who is being doom and gloom on this forum, I know what you are all going through and it's not fair,

Take care Justin 

[Cody foote]

Hi everyone,

Thank you so much for all of your messages and support you have given to my Dad during this dreadful time, it's been a difficult time recently, with dad losing his use of his right side, and with the Brain Met aggressively coming back, but Dad you are doing amazingly, you might not think you are, but you honestly are! this forum is to express how you are feeling, its here to help you through Depression, and treatment worries, and to share Cancer journeys. Your not the doom and gloom of this Forum, you've been one hell of a helper to everyone, and everyone knows that, even when you are at your lowest you still think of ways to help others who need your help, the same way everyone on here has helped you. 

You'll never be a burden dad, your ill and you need help.

Dad there going to sort you out a treatment plan, there not going to do nothing, youve reacted to past treatment fantastically! Look at your lung and your lymph nodes, all stable, and 1 Brain Met eradicated, it goes to prove that your stronger than you think, that this cancer can be beat, your beating it now! That one Brain Met will easily be eradicated. 

Once your treatment has been done, i definitely think you need to change Oncologist teams, they've been no good to you at all. This is your life and they have got your life in there hands, and if you don't feel safe and confident in that, then we need to get you transferred, because they've been sloppy, ever since last August. I think the way they have treated you, it certainly comes across as Patient Negligence.

Your my Best Friend dad, always have been, and you always will be, we will get through this Dad, you will get better, we just got to keep fighting for what we deserve, thank you for everything Dad. I love you Dad, always and forever.

Thank you to everyone for there support. 

Take care, many thanks Cody Xx

[LilyMir]

How are you feeling now@Justin1970? Did your doctors advise with a treatment plan or a timeline? Take care!

[Justin1970]

Hi lily 

Thankyou for asking about me, my Dr has advised me to get the treatment done in Bristol before I change hospitals because he doesn't want me to get lost in the system and there might be a delay in where they send the results, he doesn't think there will be much of a delay but doesn't want to take a chance, I haven't heard from the brain cancer hospital yet apparently they are having the meeting this week hopefully they will sort it out sooner than later because last time the brain mets doubled in size after 4 weeks before the gamma knife radiosurgery, 

I feel a bit better I think in myself and have a bit more movement in my right arm and leg but still can't coordinate properly maybe the concussion is getting better and the fluid is going down due to the dexamethasone steroids, 

I hope you are feeling a bit better now and your fingers healing take care Justin x 

[Justin1970]

Hi

The neurological hospital have rang me today and I have a consultation booked for Monday so hopefully they will have a plan of what is going to happen unfortunately I am still convinced they will say nothing can be done, the head oncologist of my team is ringing me tomorrow but I have no idea what about as it's now in the hands of the brain team, I will let everyone know tomorrow what is happening, 

I think my coordination is a bit better today and my strength is a little better, I hope everyone is well take care Justin 

[LouT]

Justin,

Hang in there fella.  I know little about NHS so I can't really comment on their quality or processes, but from all I've read that you wrote, I believe you're doing the right thing for yourself.  I look forward to hearing that your second treatment will be successful and fry those suckers into oblivion.  

Lou

[Justin1970]

Hi lou

Thanks for your message and support, I have just received a phone call from the cancer nurse to say they are thinking about brain surgery and not gamma knife, I'm really scared about the thought of having it done and worried that they won't do it I don't know what to think anymore I just know I've had enough of it all now, it doesn't seem like you win very much with this disease all you do is fight and get knocked back every time you make any progress 

Hope your well take care Justin 

[Izzy]

Jus, Where theres life there’s always hope xxx Come on we can do this x of course your worried but they wouldn’t have said surgery if they weren’t going to do it x it really is a better option as too much gamma has side effects and they know what’s best for you x I know it’s tough but you will come through this and be better xxxx This is gonna be good news for you, they will get rid of that shi_ that’s been causing you so much trouble and life will be good again , love you so very much and look forward to a much brighter future for you and all of us xxxx hang in there sweetheart xxxxx loads a love xx mum xxx 

[LilyMir]

Hang in there Justin, I know it is a big setback but please remember there is hope and the future is promising for many new treatments so even if current treatment only buys time, the future may even bring cures and that’s why we keep fighting the tough fight. You also know some of our dear friends here had numerous recurrences and they still beat this beast and are celebrating wonderful years and years of disease free life. You got this, do not give up, talk to a mental health specialist if you feel your depression is taking over. You just told us you are improving in strength and coordination so this is such positive news despite the circumstances.

[Izzy]

Thanks for your positive response Lily he certainly needs it at the moment, it’s a very scary time for him so he needs all the support we can give him, I know your replies mean a lot to him and hopefully he will come to the right decision, thanks again for your support, lots of love Isla ( Justin’s mum ) xxx

[Pstar]

Justin,

Do not give up hope. We are here praying for you and the brain surgeons wouldn’t suggest surgery if they didn’t think it would help. Don’t let depression get it’s hold on you. You have this.

[Justin1970]

Hi all

Thanks for your messages and support I'm sorry I was a bit down with everything the other day, I feel a bit better about it now I just want to feel better x hopefully this will work and I'll be able to get on with my life as normal, I'm not looking forward to staying in hospital and I haven't googled what the operation involves I can't believe it is a walk in the park but if it works it will be worth it, hope your all well take care Justin 

[Karen_L]

Justin, 

The purpose of a supportive message board is to hear the positive and the awful. You're going through a rough patch right now so bring whatever you are thinking and feeling and drop it here. You are kind and bring sunshine to others here. Let us do the same for you.

Lily mentioned a patient advocate. Could you or your family members look into this today? Of course, it's morning here on the west coast of the US and probably well past the close of business in the UK, but you get the urgency in my question. 

[Justin1970]

Hi Karen,

Thank you for your message, I really do feel a bit better about it all now I'm just worried that they won't offer me any treatment and worried about having the operation if they do it, I hate being away from my family and don't want to go to hospital basically I'm a coward lol, 

I think once I have the appointment on Monday I'll feel like something is being done and get it out the way and move forward, I wish I could go to the West Coast of America, I have been to the South a few times because I love elvis so spent alot of time in gracelands lol, I would really like to go to montana one day if it's possible, I bet it's lovely where you live I think I was supposed to be American I have owned quite a lot of American cars and still have a couple now 

Take care Justin x

[LilyMir]

Keep us posted Justin. So glad you are feeling a bit better but totally understand the anxiety about it all. Surgery is never fun but hopefully it will do the trick! Besides a patient advocate, a second opinion if possible is not a bad idea. Keep thinking positive thoughts and take care.

[Justin1970]

Thanks lily 

I will keep everyone posted,  How are you doing now I hope everything has settled down, 

Take care Justin x 

[LilyMir]

I am OK’ish Justin, side effects of Tagrisso are affecting life quite a bit, diarrhea, fatigue and skin reactions but much easier than the terrible times of chemo infusions, or surgery. I still have tachycardia but it calmed a bit than in chemo days. Dr referred me to cardiac rehabilitation with supervised exercise since my heart tests all were OK so far and it is maybe just very deconditioned. 
 

I have my first exercise session Monday as well as my oncologist appointment to discuss the side effects. I am quite nervous especially with my liver MRI on Fri after they cancelled it on me twice. Hoping for the best and trying to find a way to live life with constant medical checkups, uncertainty and long term medication. I too feel depressed once in a while but get better when I see my boy and spend time with family. 

[Justin1970]

Hi everyone 

I had the appointment yesterday with the neurosurgeon and they want to to a craniotomy this Friday to remove the tumor, I'm really hoping that it will work this time but I'm absolutely worried sick about the procedure, they have said my right hand side will probably get worse before it gets better,has anyone else had this done and any advice on how to get over the anxiety and recovery process 

Hope your all well 

Take care Justin 

[Pstar]

Justin,

They are moving fast with this procedure. I totally understand your anxiety but I know you have got this and have your family and all of us supporting you. I’m sorry that your right side will get worse before getting better. Many prayers are with you.

Pam

[Justin1970]

Thanks pam 

I shall be glad to get it over and done with now, I really do appreciate everyones support and well wishes, 

How did the gamma knife session go I hope it was better than you thought, please take care Justin x

[LilyMir]

Dear Justin, glad they are moving fast on this. Did they explain why they won't do Gamma Knife again? Did they say that your side mobility issue is related to the fall or to the tumour?

I did not have brain surgery but I had a lobectomy so I understand your worries and feelings about surgery and being in hospital 100%. When I did my surgery it was my first overnight hospital stay and it was the first time I slept away from my boy. I was so scared and having tons of anxiety. My doctor and nurses were for the most part very kind. Recovery was hard, and I hated the hospital noise including a room mate who snored or gossiped all day and night 

I managed to survive this by video chatting with my family, watching stuff on my phone and also my husband was there almost all the time he was allowed. At night I would stare at my kid's picture on my phone when I got scared and it made me stronger. I also took all pain control medicines they offered me and even took a sleeping pill and an Ativan they gave me once when sleep was so elusive.

 It was a terrible week in hospital but it PASSED and I CAME HOME to my family with a fighting chance for a new lease on life. Please try your best to think positively and to remind yourself that you are doing this for a chance to come back to your family and your normal life. Make sure your family visits often so they can advocate on your behalf. Also communicate your issues to the medical staff promptly. Do not toughen it out. My room mate fell in the bathroom because she wanted to "be independent". The nurse gave her an earful on how dangerous that was and that she should have used her cowbell to get help.

Wishing you the very best of luck and please keep us posted.

[catlady91]

I've just read this thread. I'm really sorry to hear what you've been going through Justin. I haven't been on here for a while so apologies that I didn't write earlier. It sounds like there is hope and although brain surgery sounds scary, they wouldn't be doing it if they didn't think there would be much benefit. 

I don't know much about brain mets but could it be swelling and inflammation? They told my mum the cancer returned almost two years ago but it was inflammation from treatment. I agree with the others that you should definitely transfer to a different hospital, one that specialises in cancer treatment and care. Unfortunately our NHS is a postcode lottery. Some hospitals are fantastic but some are the pits. 

Don't give up as hard as it is. You have your lovely family and friends on here. Many have had setbacks in their own cancer journeys and are still around to tell the tale. Unfortunately the cancer journey is full of ups and downs but treatment is getting better and better. It's also important to be your own advocate and find the right doctor who won't give up on you. 

Good luck for Friday. I'll be thinking of you xx