A late introduction…

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Good evening everyone, I hope you are all doing well and are okay.

I have been using the forum on and off, along with the online chat facility for a few weeks and thought I should really post an introduction. 

My partner ( 52 ) has been diagnosed as having a brain tumour. She has had some ongoing health issues, but everything seems to have compounded since having the first covid booster ( third injection in total ) late last year. We both has covid ourselves back in July and that’s where the issues started. She had a strange episode one day where her speech went for a few hours. She could conjure up the words in her head, but couldn’t physically say the words. Oddly, it lasted a few hours then righted itself after a particularly spectacular sneeze would you believe? She was given a CT scan at the time and the only thing that was noted was that there was a “small cyst” which was believed to be nothing to worry about.

Her speech issues continued sporadically, but gradually getting worse over the next few months. She had been attending Neurology as an out patient, but never really got anywhere. Then around three weeks ago, we attended our GP on a Wednesday as she was having odd headaches. To which the GP sent her away with a prescription for antibiotics to treat Sinusitis. The tablets actually made her very sick and her pain increased until on the Sunday I decided enough was enough and called NHS24, who then advised to go to A&E. After several hours and a CT scan, we were given the news that she had a lesion on the brain. Latterly described as a tumour.

Due to it’s rapid growth ( only three months ), it’s believed to be cancerous. They estimate it’s size to be 4x4x4cm and around the size of a plum. We now have an appointment for a pre-op tomorrow ( 14/11 ) and she goes in for her operation on Friday ( 18/11 ). The surgeon called her around a week she a half ago and explained that he hopes to remove the tumour in it’s entirety. His thinking is that due to it’s rapid growth, it may not be so deeply rooted and aid it’s possibility of removal.

We’re all trying to take one day at a time and stay positive what the outcome will be. 

Thank you so much to everyone for taking the time to read this. I feel lucky to have accessed such a caring and supportive community.

BB

  • Good luck with the operation. It sounds like proper action is going to be taken. You might ask if awake surgery would help as in this way there are minimal side effects from the surgery 

  • Hi and thank you for your reply. We have a note pad to take with us tomorrow with a list If questions we’d like to ask. I’ll definitely be adding that one.

     It’s an odd thing to see as a positive, but my partners cousin, who is of similar age, has unfortunately had brain tumours twice in his lifetime and had his last operation in Edinburgh only in July of this year. That’s where we are headed tomorrow. So he has been able to provide some personal insight in to what may lie ahead. 

  • All the best , keep us all updated and stay positive!!!!

  • HI BeardedBoarder

    we've spoken in a previous message chain but just wanted to reach out and say I'll be thinking positive thoughts for you both as your partner goes through pre-op and surgery.

    Stay positive here. Keep focussed on what you know and try not to think about the "what ifs". One step at a time as you say.

    Please reach out here anytime. You're not alone. The helpline is also there to support you both. The number is below.

    Sending you both a huge virtual hug.

    love n hugs

    Wee Me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Thank you. The pre-op went okay. Everything is looking good for the procedure to go ahead on Friday. Only one more hurdle. The consultant wasn’t available today and would like her to go back tomorrow as he’s said he would like to talk to her face to face before the day of the operation. 

  • Hi 

    I hope all goes well with the operation. My husband had his op on Friday, it was the longest day of my life. I was so scared about what might happen.  The surgeon was amazing and they think they have the majority if not all the tumour, we just need to meet them next week to find out for sure.  It's bizarre that you mention the covid jab, my husband had a terrible time after the first and second jab to the point where he was in bed for 5 weeks, they suspected prostate cancer and pretty much told us it was that but the mri scan showed nothing at all.  He's absolutely convinced this is linked.  

    Its such a hard time and so uncertain but like you we are trying to stay positive.  He took part in a trial called ALA5 which is drink you take before surgery so that the tumour cells show up better under uv light. 

    I'm sure you will both be nervous, my husband came home after 2 nights and although extremely tired is doing well.

    Its good that you have people to talk to, especially if they've been through it.

    Thinking of you this week as i know we found the waiting really tough. 

    • Glad the pre op went well, all the best for Friday - stay strong !!!!
  • Hope your husband is recovering well and you get a good outcome next week , keep us updated, all the best.

  • good luck for tomorrow.

    Will be sending positive vibes your way

    love n hugs

    Wee Me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Hope the meeting today went well and good luck for tomorrow.  Not sure it you'll be at home waiting or at the hospital.  We are under Hull which is an hour away so I was there from about 8 30 and didn't get to see him until 6 30 ish.  It was a lot of waiting around and making calls to check how he was! If you can keep busy during the op thar helps, I went to an art gallery and had some quiet time with my own thoughts.  Thinking of you.