Glioma primary grade 4

Hi PixieJ,  Firsty I am so very sorry to hear about your mum and can completely understand what you are going through. Life is so very cruel with no rhyme or reason as to why these things happen to the most wonderful people.

I lost my lovely Dad in November after 3.5 month battle, like your mum it was primary glioblastoma, inoperable and we thought a stroke. How I wish it had been! I know how difficult it is to witness this horrible disease in someone you love so very dearly and the devastating impact on the whole family.

My Dad was nursed at home, he refused to go anywhere else! It was so hard and we didn't know what to expect. Im glad your mum has settled into a nursing home and will be cared for well and supported by her loving family. Please feel free to message me at any time, it's nice to talk with people who are iin or have been through similar. Your not alone and I wish you strength through this journey.

Look after yourself, although you may not feel like it you need to be in good health to be there for your mum. 

Big hugs and I'm thinking of you xx

Dear Leer1975

I am so sorry to hear about your lovely Dad, I can see you know exactly what we are going through. We did consider nursing mum at home but her cottage is not warm enough and we didn’t feel we could care for her well enough either. It’s wonderful that you were able to care for your Dad, he would really have appreciated that and felt safe at home with his family in such a sad situation. Do you mind me asking what size your Dad’s original mass was? It’s so awful but we are trying to realistically see how much time we have, every minute is precious and of course time is flying past so quickly. Every day mum declines, mixing her words and unsteady on her feet. Her sight is deteriorating fast too. 
Thank you for taking the time to message me, it really is such a relief to know we are not isolated in our experience, we’ve found it hard to find information on someone that has had no treatment. Sending much love to you and your family and to the memory of your wonderful Dad xx

Hi, thank you, no problem, I'm more than happy to share with you my experience if I can be of any assistance at all. I've sent a friend request, I can then private message you. Xx

Hi pixie j. Just wanted you to know we are going through the same thing with our beautiful mum too. She had been having trouble with her eyes and balance, she has cataracts and doctor and optician thought it was down to this. She completely lost balance on her frame and struck her head against the wall at the end of January, then suffered the most debilitating headache. She was rushed to hospital as paramedics suspected a bleed on the brain but when she was scanned they found this awful mass. She had an MRI  at Charing cross and it was there she was given the devastating news that it was inoperable and a timescale of 3-6 months. We have just placed her in a nursing home with my father who is bedbound by LBD as they wanted to spend their last month's together. We just cannot get our heads round it..a few weeks ago she was well but her sight and balance is also deteriorating and we were told she would no longer be lucid within a few weeks hence the rush. She seems happy at the moment and has finally accepted the diagnosis but we are living day to day because we don't know how long she will be able to understand or recognise us. She is being treated with steroids but the nursing home has told us when she deteriorates they will sedate her and make her semi comatose as it is kinder and less stressful for her. It is so difficult as I expect you have found too living with a gun pointing at you not knowing when it is going to go off. This is a wicked disease. Having suffered with cancer myself these sites are very comforting and reassuring and the support you receive from fellow members and sufferers is invaluable. I think I would have given up if it wasn't for the encouragement and exchange of tips and information. So please, ask anything. We are here to support each other and share experiences and as Leer 1975 has proved there is nobody who knows what you are going through like a person who has been through it themselves. I too was sorry to hear about your lovely father Leer..hugs from me also.  Please keep in touch pixie and love to your wonderful mum. We can do this together girl. Love and hugs. God bless. Lamb.xx

Dear Lamb 

I am so sorry to hear about your dear mum, especially as your Dad is poorly too and with yourself having been through such a difficult time. It’s uncanny the similarities of this sudden diagnosis with your mum and Leer’s Dad. Stepping into the unknown has been scary and with no support systems in place as everything seemed to be ‘we can sort it in a few weeks’ one thing that is so very precious, is time, and no one seemed to see this. We haven’t had support from any organisations either, a few leaflets and the palliative care asking mum ‘are you ok’ and that is it. I can’t tell you what a relief it is to speak to the two of you, it makes it clearer to understand what Is to come, making the most of the time we have linked to deterioration and symptoms. We have read copious amounts but not a lot of examples of no treatment and life limiting condition. I hope your mum is doing as well as she can, treasure every moment, I know we feel grateful for the time we do have, we still laugh and look at old photos, listen to music and mum can eat anything she wishes for! Thinking of you as a family and I send you so much love and strength. Thank you for sharing your story and for supporting others when you yourself are going through such a difficult time xxx

Thank you pixie. I too glean comfort from talking to you and Leer. It is a minefield out there with hardly any information on this aggressive type of tumour and we are going round in circles too. Still making the most of the precious time we have left is the most important thing at the moment and we are spending most of the day with her and the rest of the time she is enjoying participating in the homes activities and we wheel her round in her  wheelchair so she can see my dad and spend time with him. She was a bit belligerent yesterday but we don't know if this is a small change or just her anger at the condition coming out. She was talking a lot about my grandmother so is obviously reminiscing but we enjoy music and photos too . Take care pixie and love to your wonderful family too. God bless. Love lamb.xx

Hi Lamb It’s good to hear that your mum has settled, mum has too surprisingly, I’m in awe of their bravery. I think maybe mood changes come with this condition, but they soon go again. We are with mum as much as we can, today she has a jacuzzi bath at the home, this is something she loves, warm water seems to help her relax as well as nice smells. She is having her hair done and chiropodist, so a full day for her! Mum also is speaking about her mum and our Dad who have both passed, very matter of fact! We are still on auto pilot and we look at mum and hope that this diagnosis is wrong, of course its not, its such an ‘invisible’ disease, but like you making the most of the time we have left. There really is such limited information for us out there, its such a shame, but by sharing our stories we can help one another and others who are facing this kind of cancer. Much love to you and your family, thinking of you xx