Brain tumour support

Hi KAF2023 

Your feelings a really perfectly normal and if we look at Your feelings when someone has cancer I see lots of the emotions I went through. I did a living with less stress course and it really helped me in that by recognizing the emotions it can help them feel less overwhelming.

When they gave a prognosis was that without treatment? Then with all the treatment options we get a huge list of possible side effects - being terrified is then rather normal but the positive is that the doctors would not do these unless they thought the outcome would liekly be better than not.

<<hugs>>

Steve

Hi, thanks so much for your reply.  The prognosis they gave was for the majority for this type of tumour overall, they weren't specific about treatment as we assume they can't be too specific this early so are sticking to the average worst case scenario.  They said their aim is to keep him well for as long as they can but were very clear that it is not curable.  Actually receiving the letter seeing that written down in print was a real low point.  Somehow sitting with a lovely doctor telling you in person so kindly didn't seem as bad as reading it a few days later.  So we have to hope the surgical review goes well on Thursday and then one step at a time.  Trying to keep positive and hopeful without being unrealistic.  We have our strong days and then our sleepless tearful nights.  He really wants to keep as normal as we can and enjoy things as much as he can and thankfully the medication he is currently on is keeping all symptoms at bay.  Still can't believe how much our lives changed so quickly.  

Hi

my husband was diagnosed 3 weeks ago after having a seizure. Healthy man. Trying to be positive and supportive every day. I’m so emotionally exhausted whilst trying to come to terms with this nightmare. Hope you are doing ok. Take care 

Hi Jen, so sorry to hear about your husband's diagnosis.  I am with you on the emotional exhaustion.  My husband had his debulking operation last week and they got 99% of his tumour out we think, from what the surgeon thought.  We have our post-op review with our oncologist this coming tuesday to hear the analysis of what they took out, the post-op MRI scan and their treatment plan, which we think will still be radio and chemo therapy.  He is doing ok mostly considering, but is totally exhausted as we are weaning him off the steroids so sleeps really a lot (he is sleeping now) during the day, but can't sleep peacefully through the night.  The average prognosis for his high grade tumour is terrifying even with all the treatment they can do so we try to be positive without being unrealistic and I am always trying to be strong for him but I am in total knots inside with the fear of what is to come and cry at the slightest thing.  Sending much love and strength to you, we are going through something you just cannot be prepared for and can only do the best we can for our husbands and ourselves.  Karen xx

Hi , I was diagnosed with glioblastoma in September after a seizure and was otherwise thought healthy I had 90% removed I go back for MRI this Wednesday to see where I'm headed next, I feel more for my wife than of me, I wish I both well and here for support, take care.

Hi Karen

we should find out more this week regarding treatment plan following on from his biopsy last week. I have lots of support from family and friends but it’s very different when you are living this nightmare. It’s good to read your message and realise I’m not on my own x

Hi Lee 

thank you for your message. Waiting for results is the worse!! 
anxiety and wishing life was different is so hard. 
thank you for your support x

Hi Jen, good luck this week with your appointment.  Keep in touch.  Good to hear you have support around you but it can still feel very isolating so although I am so sad you are going through the same, as you say, it is good to realise we are not the only ones trying to get through this.  Much love x

Thanks for your message Lee.  Take care of yourself and good luck for Wednesday.  Sending love to you and your wife x

Your messages have really helped me today! Thank you! Keep in touch and take care x