Lost

Hi Carole

I am really sorry to hear of your diagnosis of a brain stem glioma. It must be really hard to be waiting for a treatment plan and for clarity about what is ahead. 

I am glad you were able to talk to a Macmillan nurse yesterday and that you have now had a call from the CNS at your hospital. I hope that this will move things forward and that you will get an appointment with the consultant to go through a treatment plan.

My cancer was endometrial so different to yours but I also had a delay from the diagnosis to actually getting in to see a consultant and to find out what would happen. It was really hard and i felt much like you- it is overwhelming and scary when you don't know what is going to happen. Behind the scenes at the time there were Multi disciplinary team meetings happening- where they look at the diagnosis and plan the best treatments- but I did not know that at the time. 

Once I actually got in to see the consultant-after the MDT- things moved very quickly. i saw him on the Friday and surgery was on the Monday. 

I also remember feeling exhausted by it all- my emotions were all over the place- so you are not alone. The Support Line is there from 8am-8pm everyday. There is also an online chat feature if you feel that is easier if you are feeling teary. I know it is hard to get any sort of GP appointment at the moment- but have you thought about your practice nurse? They seem to be easier to get in to see at the moment and mine was excellent. 

When I had my diagnosis I felt I wanted information and it is natural to turn to google but I would advise against it. its not particularly accurate or up to date and doesn't have any of your medical history etc. I will pop a link here to some Macmillan info that may help. Do not feel you have to look at it- only if you feel it would help. But I wonder if it would help you to know a bit about what may happen so you can prepare any questions for when you see the consultant. 

MAC11647 Understanding primary brain tumours (macmillan.org.uk)

Take care and if there is anything you need then please do ask. I personally felt at diagnosis it was really tough but once I knew what my treatment plan was and had seen the consultant- it felt a bit more in control as I had something to focus on. 

Jane

Thank you for your kind words. I've read the leaflet; it's very informative. 

I was hoping things were going on in the background but, unfortunately, my neurologist didn't refer me to the surgeon until I complained about his tardiness. The CNS confirmed this when I spoke with her yesterday. The MDT meets on Thursday afternoon, so today. She said I'm not on this week's list so was hoping they would review my case next week. 

She was so apologetic about the way I've been treated. 

My neurologist first said he thought I had a tumor on 20th March and here we are in the middle of August and I'm no further forward with a treatment plan. 

I'm just trying to get on with stuff and not go crazy or make things more difficult for my loved ones. 

Hopefully I'll hear something soon 

Carole 

It’s rubbish to find out you’re one of the C club. And it is emotionally draining. Have you tried phoning the macmillan phone number. I’ve been lucky with my treatments and am still receiving it. I made a blog which I feel is a way of clarifying/sorting your thoughts. I do hope your experience gets better and the care you need gets sorted. It’s a busy world and sometimes you got to shout to be heard. Everyone is here for you. 

Hi all. 

I've got an appointment on Thursday to see a neuro oncology surgeon. 

Shouting worked; just a shame I had to get myself into such a state to be heard 

If if wasn't for the Macmillan nurse that I spoke to I would have still been waiting.

He said it was his last week as he was retiring. I really hope he has a great time. So many thanks to him.

Carole