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Please Help - Mum diagnosed with grade 4 GBM

doofus1980
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Hi everyone,

I hope you are all doin ok. The reason I am posting today is because I really need your advice and opinions. My Mum was diagnosed with grade 4 GBM on the 23rd of April this year. This came as a huge suprise to the family as she is a perfectly healthy 63 year old. She had her last MRI and Catscan on the 24th April. She had these done at a hospital who do not specialize in neurology. We finally heard from a different hospital on the 1st May to be informed that her Consultant would call us on the 5th May to go through everything. This is one thing that has happened when it should. The consultant informed us that her only option is surgery which my Mum wants to go ahead with so is penciled in for the 29th May. We were informed there would be 3 reasons this wouldnt happen 1. if she tested covid positive 2. if she had deteriorated and 3. if there was an emergency that came in that day.

Fast forward to now. We have heard nothing from the other hospital, the only time was when I called the support team to found out what the procedure was surrounding the surgery. We have had nothing in writing which I understand is becuase of Covid. I phoned around yesterday morning to various departments which all went to answer machine. The support team finally phoned back after lunch to inform us that there is no theatres available so its very unlikely surgery will happen this week and they will contact us when they have any news.If I hadnt of chased yesterday they wouldnt have called  I asked them to update me yesterday which never happened. I am loosing all faith in the medical team the communication is appalling. When we spoke to the consultant he pointed out that time is of the essence yet we are no futher forward. The support nurse did agree when I asked her even though my Mum doesnt have Covid she could die becuase of it.

Does anybody know what i can do next or who i can speak to as i feel completely helpless. My Mum was very emotinal yesterday for obvious reasons I just want to help her as much as i can to get through this the best she can. 

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    Hello doofus1980, 

    I noticed you hadn't received a reply yet so I just wanted to welcome you to our forum. This must be such a distressing situation for you. You did absolutely everything you could and did well to keep chasing - it's a shame though that they told you that it is unlikely any surgery would happen this week and that communication has been so difficult with the medical team. 

    I hope they have since given you an update on what to expect as it must be so hard for you to be left like this in the dark not knowing when they will be going ahead with your surgery. The situation with covid19 has certainly thrown so many challenges in recent times. I am so sorry to hear your mum was emotional yesterday and she is very lucky to have you being so proactive to get things sorted for her. I hope there is someone you can talk to in hospital who can tell you more about what to expect. It might be worth trying to get in touch - again - with your mum's medical team and seeing whether her specialist can advise you further on this.

    Our nurses are available on this free number 0808 800 4040 - their line is open Monday to Friday from 9am to 5pm so don't hesitate to give them a ring if you wish to talk things through with them.

    Best wishes to you and your mum, 

    Lucie, Cancer Chat Moderator

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