Brain Tumour Survivor

Bronwyn,

You need to find a way to regain control. If you lose control the whole situation will get worse, if that's possible. You need to make some calm informed choices. Maybe you need to meditate or exercise to regain that control. Unfortunately the load is on your shoulders as was on my wife's when I was in hospital, unfair but I'm sure Graham or I would do the same.

So see if you can regain control, one choice at a time. Calmness is your friend in this hellish situation. Doctors have given patients 1-2 weeks to live before and they have pulled through. The best example is Lance Armstrong. There always options.

So see if you can do this one choice at a time. Try taking one day at a time. Take some deep breaths; channel your anger through exercise. Whatever course of action you decide on at least you will be giving Graham the best chance. Choose not to lose control.

Regards,
Ken

Dear Bronwyn, I can't believe how you are being treated by the Alfred hosp., it sounds like your husband is in a rehab hospital at the moment and the treatment can be done as outpt so should not need an inpt bed at the Alfred, he could be transported daily to the hospital by pt transport to have radiotherapy and the chemo is just a tablet that the nurses at rehab could give him along with the dexamethasone. You should ring the Alfred switch and ask them to page the cancer support nurse, they usually start work around 0830hrs, and see if she can help give you some guidance and support, don't wait for people to contact you, I find with big hospitals that sometimes you are just like another number and get lost in the system. Don't let the doctors discourage you, some can be cold and not have very good bedside manners. My prayers are with you Bronwyn and your family.

Regards Deborah

Today is Thursday. Graham started radiation and chemo Tuesday. He goes into the Alfred and back to Jessie Mac by ambulance. Tuesday morning his electrolytes actually came back good for the first time.
Todayhe was given bed today so is now an inpatient at the Alfred and getting treatment! Its incredible the difference in the two hospitals. Within an hour of being admitted, the radiology nurse rang me to tell he had a bed. Then the ward nurse rang and confirmed his location. Then a Dr rang and introduced himself and said he was Graham's radio oncologist from now on. He asked for a medical history as they didn't have one, spoke of his weaknesses, mentioned rehab. and said we should meet. I couldn't believe it. Such a difference!
In the meantime I have arranged a referral to another specialist (thankyou for the suggestion David) . The new specialist said he wouldn't alter treatment at the moment and to see him when he finishes radiation. To go to him as an outpatient as it is professionally tacky to change now.
Either way we are rid of the the neuro as he is not my favorite person that's for sure. As for Graham's progress. I am too scared to hope. He has improved but is it the dexa back in him or the radiation? I actually have conversations with him now. I told him how bad he got on Friday and he said F____! and was quite shocked. His out of nappies and walking around and much more alert.
So is it the brain swelling going down or have we had a postiive sign?

This will probably be my last post. Graham has gone downhill again. He has swelling and is on 16mg dexa which is not controlling it. They beleive he cannot take the radiation and if it continues he will have heart failure. I gave the hospital a do not resicitate order. If they stop the radiation the tumour will get him. The Alfred has been wonderfull and said they are doing all they can. He has specialists coming out of his ears. I am happy that he has now had the best done for him. It's a pity I haven't felt that all along. If anyone from Jessie Mac is reading this the Alfred would like his file and medical notes at some stage preferably before he dies.
To everyone thankyou for your support and tolerating my ranting. Bronwyn

Dear Bronwyn

I can't believe the rollercoaster you have been on since Graham's hospitalisation! To have so much hope one day & then no hope the next must be devastating for you & Catherine.

My Bro too could not handle the radiation & was told if he didn't have surgery he only had weeks to live! Fortunately, they were able to debulk the tumour & he is still with us! Is another surgery an option now for Graham? Can they debulk at least 1 side of the tumour?

Thank God you have the support & assitance now from the Alfred. At least you can be assured they are doing their best for Graham!

As to the medical records....don't hold your breath. I was in a similar situation in 2005 & after being discharged after 5wks in hospital I had to chase & badger the hospital to have my files forwarded to my GP. It took 6mths for them to come.

My prayers & thoughts are with you. Please keep in touch with us here, I'm sure we can further support you.

"Where there's life there's always hope"

Cheers, Angie.

Today it is Friday. Last Friday Graham lost consciousness. He was placed in a private room and I was told it was best that I take his clothes home. I was given a bed in his room also. The doctors went all out with steriods and we waited. Sunday afternoon he regained consciouness. On Monday morning the doctors decided to do only radiation as he was touch and go but to up the strength and go all for it. They told me they were not giving up that Graham had to give up first.
Today the doctors said "We are baffled at his recovery. The treatment seems to be working pretty well".
I am amazed, stunned, worried it wil not last, blessed.

Hi Bronwyn, I have thought about you often this last week, it was good to hear how things are going. I'm so happy to hear that the hospital is giving Graham the best go at things. Even extra time with someone you love is so precious.

Regards Deborah

Dear Bronwyn

My prayers & thoughts continue to be with you & I hope Graham has continued to improve with the radiation treatment.

Cheers, Angie.

Dear Bronwyn

I read on another thread that Graham has been responding well to radiation & that is so encouraging. Although as you have said each day has it's various challenges. I am thankful that my Bro's condition is stable at the mo.
I too have read the YASG website but found alot of the stories a little depressing. Although I do go back there from time to time the members are not familiar to me like the members on this forum.
I do believe (but don't quote me) that Prof Chris O'Brien's treatment was a 3 x chemo approach as well. He has had a good success so far, along with his homeopathic approach & meditation. There seems to be good results from this treatment that I have read on the internet. I have spoken to my Bro & his wife about this but they are happy to stay with the advice of their neurosurgeon for the time being.
I continue to keep you all in my prayers.

Thinking of you, Angie.

:D This weekend Graham is coming home for the day! Would you believe it! One thing I have learnt is how terrible is this thing? The man in the next bed to Graham has the same tumour, arrived the same day, started radiation the same day and there are opposite results. At times I feel guilty that my Graham has turned around and we can laugh and talk again. Graham is functioning at 80% but after 35 days in bed is very weak. The radialoogist reminded him that the result is great but it will be back so now with him having awareness he is a bit depressed. He also said he is to be referered back to Jessie Mac. No way! We have a new neuro to go to. Never him again. I have the control for a change.
The new Graham has lost his ability to think before he talks, so I have been told I could lose some weight, my daughter to change her hair and today he asks the nurse why she has no neck. Now my new experience is cringing.
The computer is my new best friend thanks to this site.

Hi Bronwyn
WOW! This is an incredible turnaround for Graham, thank God for the radiation! You must be happy to have him back (even though he's flooring you with some of his comments!).
To even talk about Graham returning home it's almost impossible to comprehend. I am so bloody well happy for you all.
Perhaps the flyfishing holiday will now come to fruition? I believe you need to have a huge celebration of sorts for such a fantastic outcome.
Keep strong & positve. I am very happy to know you have chosen a neuro-surgeon for yourselves.
Thinking of you.
Cheers, Angie.

Oh thank you. It's exciting,scary and is it really true? After 35 days in bed so very weak also. Have considered fly fishing holiday but Graham says next year. I don't think he realises the extent of that comment. At the moment its next week! AND HE DARES TO SAY NEXT YEAR!
Does anyone sing to you the rolling Stone hit Angie? I thought to myself what's that song named Angie? Then it came to me and came to me and came to me.

Any suggestions? My hubby has developed numbness and pain down his rigth side. I know the tumour was (is?) heading into his motor skills. The strange thing is that it's the joints mainly. His knee, ankle, elbow, wrist and hip are very painful. The reply at the moment is wait till the radiation ceases.
On the other hand his speech has improved in leaps and bounds, as has his thought processes. His walking is not bad considering he has been bed bound for 36 days. But that numbness haunts me.

Dear Bronwyn

Great to hear another positive post from you about Graham!

I can't really offer any input on the joint pain, unless you hear from another more knowledgeable member about this perhaps you can google "brain tumours & radiation". Also check out the thread here for Trials, Data, Research, there maybe some info there too?

I know you must be worrying that perhaps the cancer is moving around Graham's body but with Brain Tumours it is almost unheard of for these kind of tumours to metastasize (sp?). You should discuss this further with the rad Dr or neuro Dr.

So glad to hear of the improvement in speech & thought processes.
I continue to pray for you all.

Cheers, Angie.

I constantly worry over whether the tumour is tracking into his motor skils as it was heading that way. So I get a bit paraniod over anything to do with right side motor skills. Told today it is neuralgia and then lots of mumbled explanations. May go to an acupunturist. What can we lose?
How is your brother? Did he get pain before he lost some motor skils?