We Talk Brain Tumours

 

 

Thanks for your advice Janet

 

I can reply to your thread but I'm not very computer literate and i don't seem to be able to post in WTBT

thank you

 

 

Hi Shelly You just have posted! :-) I see what you mean but just use the reply button as that doesn't seem to link your post to a specific comment. Hope that helps. J x

Welcome Shelly..glad you have found us. Dont worry ..we are all getting to grips with the new format here. J is right ..I just hit reply button on a post from this Forum and that usually gets me on.

Morning all.

Cathi xx

Ilowe,  I tried to work out from your post exactly what seems to be happening with your sister, I believe she is currently receiveing "gold standard" treatment, RT + TMZ then going on to TMZ alone.  You really can't get much better than this at the moment.  I am guessing that you are confused mainly because you are getting the information second hand from your sister and BIL.  Research has already shown that during a consultation with an oncologist the patient (and carer) does not retain all of the information and often gets "stuck" with a  certain word, it can be cancer, chemotherapy, terminal basically anything, then the remainder of the consultation is a bit of a blur where they try to patchup between them what was said.  Of course by the time it gets to relatives it has been mulled over and reworded quite unintentionally.  Some oncologists will tape the consultation, others will keep it brief and use simple words then repeat what they have said in a different way.  If you sisiter and BIL can take notes that may also help.  If you would like to PM me feel free to do so

Shelley, glad you have found us, sorry you have had to!

Love to all, especially Martyn xx 

Almost 2 weeks since I put the claim in for the life insurance and they're still working on it.

This waiting is hellish.

llowe, my son started his treatment the same week as your sister ( I think he is 2 days behind her) They are both receiving the same regime. RT/chemo, a break then chemo alone. In Dan's case for six months, 5 days on 23 days off. As others have said it seems to be standard treatment and I hope this gives you some comfort.

I too find the consultants and Drs confusing. One says one thing, another, something else.I think we need to remember this is a very scary and confusing time and in time, things will become clearer (although something else will crop up I'm sure)

Life is terminal, we all die ! Don't stress too much over that one word how ever horrible it is.

Wishing you all a peaceful evening

Hi Anne..... hope things are going well for you......

Ben went back to the hospital on the 5th dec to pick up what would have been his 7th month of chemo and also the results of his MRI and it's bad news!!

The tumour has grown back so they've stopped the temolozide and he's having another op 19th dec and gliadel wafers.... professor cruk shank said he may be a good candidate for one of his trials  after the op....... life has been turned upside down, he had a seizure too so is now on steriods and anti seizure drugs...... has been an awful week really, sorry to be the bearer of sad news....

Love to all, thinking of you

Selina xx

My sister is on TMZ+RT and then from the 30th January is changing to a coctail of Chemotherapy drugs, my sister can not remember what but does know that the Dr said they are stronger than the TMZ.

Im not sure if it makes a difference as people are saying not to take the 'terminal' word too seriously but it was the size and location of the tumour that the Dr gave this diagnoses, during the surgery he barely got a enough of the tumour for a biopsy, it was attached to too much and embedded to far into the brain to remove anymore, he said that our only hope was for the radiotherapy to shrink it, that it would not disappear even with treatment and cold not be removed, that is why it was 'terminal'. i dont know if this makes sence or not. I feel so confused with everything, I dont sleep well, im very down, i feel like im forgetting things, im seeing things that are not there and im seeing things differently and scaring myself, yesterday i saw what i though was a rat on the floor and got myself so scared (yes over a rat) that i nearly had a panic attack, turned out to b a dried up leaf, today i thought the 'P' on top of a parking meter was someone in a scream Mask waiting for me (i know im a loon), im forgetting where im putting things, my temper is very short (which is not good when you work with kids) and Oh my deary me do people annoy me when they moan about their day or their life. Im not sure if this is normal or if im really struggling with it all.

My sister on the other hand has burnt behind the ears and head from the Radiotherapy, shes got cream for her head and swabs and gel for behind the ears as these are open wounds, I cant even begining to imagine the amount of power behind this radiotherapy, shes found the tiredness has returned again and is sleeping as soon as she gets home from the hospital, but shes upbeat about it, she actually out for a meal celebrating her hubby's bday right now, only 7 more days of RT to go.

 

thinking of you all

 

Regarding not remembering what the doctors say: My memory has become appalling since my op (and before!) so I bought a "Smartpen". I have found it a very useful gadget.
It records your conversation so you can go back and replay it but the really nifty thing is that if you (or a minder!) write down key points in conversations in the notepad that comes with it then clicking on the notepad will take you straight to that point in that conversation. It keeps hours and hours of conversation from most of the last year. I can replay back specific parts in any of the conversions by clicking on them.

A couple of the Drs were about against it but I just ignore them, other Drs thing it is really useful.

I have the Echo Smartpen from Livescribe. Google it. ...and no I don't get commission :)

I'm so sorry to hear about Ben. Hopefully the steroids are just a short-time measure and they can start to be reduced soon. The anti-epiletics may take a bit longer than.

Pete - unfortunately that is quite usual with insurance companies; red tape, form filling. They don't want to part with the money they owe you. Stick in there.

We were so very lucky in having a very good oncologist.  I don't think we neccessarily had better medical treatment than anyone else here, but he was such a gentle, compassionate man who took time to speak to us in a calm, measured way.  The conversations were never very long and he took care not to over-complicate or speak in overly medical terms.  He just guided us in what he felt would be the appropriate course of action.

He gave us so much confidence and reassurance that we didn't feel any need to press him further or question anything.

But, using a pen is a great idea.  Not neccessarily to record the audio of the conversation, but as a method to condense and summarize the meeting in terms of bullet pointed lists of what the current situation is and what the future plan is.  If at the end of the meeting, you can tie the oncologist/whoever into summarizing a bullet list for you to write down, then hopefully things will become a whole lot clearer for you.