GBM - another carer

[tropical]

My 52 year old husband was diagnosed with a right frontoparietal GBM in June 2012. It's comforting to know all the other GBM carers are experiencing the same challenges as our family...as sad as they are! My best wishes are extended to everyone who has the misfortune of needing this site.

[jobeth]

Hi Tropical, How is your husband going? And, how are you coping? This terrible cancer can be so debilitating on all who are involved. It's a hard fight and it's not fair. I'm here if you need to vent or check in on the "what to expect" front. We are in the final stages, after almost 4 years, my man has fought a hard battle, he turns 52 next week. Way too young! Take care

[tropical]

Hi Jobeth, We're doing okay thanks. I'm thinking of you and your husband at this trying time. Take Care

[Minx]

I hope that you may find comfort/answers/support here with others who are also caring for GBM partners. It has been 17 months since my husband was diagnosed, he is now back at work after his 2nd craniotomy/radiation and doing chemo. I do not know how he does it, but I believe it is his way of not 'thinking' about cancer. Live day by day as cliched as that may be. Cheers Minx

[Mango]

Hold on to hope and keep thinking you are here together for the long term. Stats are just stats you and your partner are individuals and biological systems are unpredictable!!! Even if it is a bit Pollyannaish it worked to help the journey for us. We are 6 years 8 months down and who knows what the future may hold.

[tropical]

Hi Mango, We live in the tropics too. We travel to Brisbane for treatment which adds to the challenge of trying to lead a normal life. We now spend half our time in Brisbane - our son's there - and half our time here by the beach. We had to desert our year 12 child last year! She managed to do well and is on a gap year. We have another year 12 child this year. I only hope my husband survives till the end of the year. As far as hope goes, I'm a hopeful realist. I have friends who have lost parents to GBM, and a colleague died also. I discovered this site when my husband was first diagnosed. There was another very active froup of GBM carers. As I followed their plight, I understood the reality of this diagnosis... I tried to return to work after radiotherapy, but we always had to make emergency dashes back to Brisbane. Recurrence, second craniotomy, cystic build up post op, uncontrollable seizures.... Suffice to say, I've taken leave from work. We had to cancel our planned month in Europe (we booked it 2 weeks prior to his diagnosis) once the seizures started. It was stressful enough trying to get him down to Brisbane. It would have been waaaay to scary to go overseas. On Good Friday we ended up in hospital - my husband coukdn't walk. He has gout! Wonderful side effect from steroid induced fat tummy I guess. I wish you all the best on this rocky journey.

[jobeth]

It helps when you can take time from work, although I'm sure the loss of funds provides a different kind of stress. I'm still working and today I had a mini meltdown. 1 whole month on 2 hours sleep a day and no rest from work or cancer! Oh I feel so selfish but yet I know that I can't do everything, all the time. Be kind to yourself. I'm thinking of you both. Jobeth.

[jobeth]

Out of curiosity, where was the gout? I ask because my husband is having intense pain in he's knees, I suggested gout. Jobeth

[tropical]

The gout was in his left foot. When he woke, his foot was swollen to double the size of the other. It was hot and red. It was also so painful that he couldn't put any weight on it at all. It's a little better now. The treatment is steroids anyway and he's currently taking 2mg daily with no view to reduce further. (Each time we've tried, he's run into trouble.) We see the team in 2 weeks and it'll be good to know what they have to say... Paracetamol helped my husband's pain. Along with the knowledge it was the result of a bone problem as opposed to a brain one!! Well done for working still! On the one hand, I do a lot of sitting round and I feel like I'm wasting time. On the other hand, I hear the clock ticking... Our team never spoke about life span but I can't help thinking about it...When my husband was significantly physically affected, I had to break my life into 60 second periods. I'd say to myself "Well, that was a GOOD minute". That was my strategy for surviving those scary times. The worse thing for me is knowing that another crisis is looming. We just don't when....... I hope your husband is able to feel more comfortable.

[jobeth]

I have found our medical team to avoid being too specific on the prognosis/life expectancy subject. The reason for this is: they don't know. GBM is such an unpredictable disease and everyone's aspect of it is individual . Sure, there are some common reactions and of all the experiences I've researched here and overseas what I know to be true is we have no choice but to keep fighting and truly attempt to live moment by moment. GBM is still an extremely rare variety of cancer. So much is unknown. My husband believes they'll never cure it, just prolong life and preserve quality as they get better at understanding it and the medicines that work with it. A radio oncologist recently responded to my question like this: this disease must be so frustrating for you who have to work with it, how do you approach this frustration on a personal level? ' We just move on to the next one unfortunately". Anticipatory grief is wasteful energy. Try using your energy to care for yourself and extract moments that you want to remember. Take care, you're in my thoughts, Jo