Hello I’m sorry to hear the all too familiar disjointed communications with hospitals. I was seen by a neurologist in October 2017 for memory issues, I’m 51 yrs old. After reviewing an MRI I was told by letter I was being discharged but would need another MRI in Feb 2018. Having had the second MRI I was told again by letter they have spotted something in my brain and would need another MRI in six months to see if any changes had taken place. I had that third MRI and waited two months before I rang them saying well what was the result ? I had one excuse after another to explain why it hadn’t even been looked at, they will write to me again. I had a letter saying no change of what ever it was as they still hadn’t told me what it was.

with in 24hrs I had a second letter saying it’s been looked at by a radiologist who said “it “ has grown and I may have a meningioma but they couldn’t be sure by scans alone. They now want a neurosurgeon to view the scan and oh by the way they want me to have my lungs and liver scanned ! 

So with out ever meeting the neurologist who writes to me I have been informed I may have a brain tumour and or something may have spread to my Liver and lungs. That’s not how I would expect to be informed of a potentially life threatening brain tumour and now they are looking to see if it’s spread, with out ever getting to sit in front of the neurologist to allow me to ask all the questions I have about what is it? What are you looking for in my liver and lungs and what has the neurosurgeon got to do with all this ? I asked to have an appointment and was told “oh he is really busy and none are available until January.”

so I m left wondering all sorts of theories with nobody to ask as even my GP shrugged her shoulders as admitting she didn’t know what it is all about. You are right the NHS is wonderful but communication is not their strong point.

Am so sorry for to hear your experience ( seems a lame word ) , it all just makes a terrible time so much worse.All you need is to sit down and talk to someone about what will happen, treatment ,prognosis, know they cannot do that without results, but just a general chat about what could happen.

At the moment I cannot eat solids, they get stuck, so my Husband and I have no social life , we ate out regularly. I have lost so much weight, have no appetite. I didn’t realise how much food plays a part in everything. Know I am feeling sorry for myself !

Best wishes in your journey  through all of this. 

Trouble is if you complain, as people have told me to do, will you just make things worse for yourself? 

Hi, I'm so sorry for all what you are going through, I was in a similar situation in May, I had a call from my Hemotologist to say she was going on holiday but all my results would be in the day she came back and made me an appointment. When I got to the hospital, my nerves were shattered and then the nurses told me she is not in on a Monday, I could have cried. They did say they would get her to call me but I asked if I could see another doctor which was a waste of time as she said the results wernt in and wouldn't give me any information. I went home very deflated that day. However looking on the positive side, the day I did see her she was so apologetic and has went out her way to be very nice to me. The treatment from the haematology unit has been wonderful. I'm due my 5th treatment next week, I can't believe how quick it's been but that waiting time was horrific, worse than the treatment, I was more than ready the day treatment started, the biopsies took forever and even the report from the ct scan took about three weeks. My heart goes out to you but looking back they really have to do all these tests to enable them to get the correct treatment for you and find out grades and stage of cancer. I have a rare form of lymphoma, stage 3.  Good luck and I hope any results are good ones 

Thank you. I know the NHS will do the very best treatment but like you turning up on a Monday all ready for the big news and something simple like a day off for the doctor leaves your nerves in tatters. Just a simple phone call to re arrange that appointment would have made all the difference. 

I hope you go from strength to strength with your treatment.

So sorry you can’t get enjoy your food at the moment. We all need a poor old me day !

i think in my case it just seems so wrong to tell me of a brain tumour by letter seem heartless. They say don’t look on google but if I can’t ask them what is it how else am I to find information? I tried NHS choices but they also called meningioma a benign tumour in most cases and was very vague. It didn’t say anything else about body scans so I still don’t know what they are looking for? I don’t want to complain as it means we get off on the wrong foot.

It is nice to know that I am not alone, so sorry you have been through all of this x I completely understand that they need results to move forward, just think it was awful using another persons name, actually a breach of data. Good luck with your journey xx

I don’t know about you but I cope better when I have all the facts. I hope your anti anxiety medication helps you through this waiting stage. It really is horrible.

best wishes 

Yes, give me the facts and I will deal as best I can, the waiting is like nothing I have been through before.

The cancellation of my appointment and the way it happened sent me slightly over the edge. Calmer now! 

Good luck with your journey x