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Glioblastoma grade 4 :( experiences?

(4 Posts)
QueenOfTheMadhouse Sun 04-Sep-11 17:44:48

Hi, my dad got diagnosed with gbm 4 last sat after a week of confusion, it is unoperable.He is having 8-15 days of radiotherapy to try and control the tumour. While i was with him to get the diagnosis they asked dad if he wanted to know how long he had or what to expect but he said no, however my sisters and i would like to know as we are going to be caring for him and are all single parents,i have 3 children, the youngest being 3 months. My sisters both have babies too. My dad is adamant he doesn't want hospice care. Does anyone have any experiences with this cancer, and also does anyone have any idea as to what to expect? TIA.

joruth Sun 04-Sep-11 19:43:25

I am so sorry for you all and for your Dad.

GBM 4 that presents with very rapid onset of symptoms often responds well to an initial blast of radiotherapy and steroids, how long this lasts is very variable and it is difficult to answer your question on how long your lovely dad will be around because it will vary with the site and speed of growth of the tumour for example a tumour near the front of the brain may affect personality, sleep and confusion but will take longer to affect other parts of the brain, a tumour near the brainstem will usually give a shorter illness as breathing and other vital functions are affected sooner.

It is likely that your Dad will remain on steroids now to reduce swelling in the brain and help his confusion and headache.

Confusion, headache, nausea and vomiting are all common as the tumour grows. Sometimes a person remains calm and placid, sometimes their personality and sleep patterns may be affected even becoming violent or abusive...this is not the ill person it is the illness. But it is hard to cope with.

Most people have a bad view of hospices as "death sheds" but modern hospices offer the chance to continue to grasp and enjoy life for as long as possible and it would be great if you and your sisters were able to go and see the local one. They often have great outpatient and day care services and teams that also come out to your home if things get difficult.

Macmillan nurses are a great resource and they often have practical solutions for every day problems. Grab any help that you are offered. They will help with the paperwork below.

As this is not likely to a very long illness (months not years) your Dad and his carers will be eligible for financial support....get this as soon as possible, it means you may be able to pay for night sitters or some cleaning help that you wouldn't otherwise, also help with transport costs....sounds mercenary but you are all juggling multiple things. Also please please discuss getting a power of attorney that can come into action as soon as your Dad's condition worsens. It's much quicker to do whilst he is able and it means you can keep it in reserve until needed

Death may come suddenly if the tumour suddenly grows or bleeds and may look like a big stroke. make sure you, your Dad and your GP have discussed what to do if this is the case..do you want hospital care ( ambulance etc.) or the on-call GP to assist. Otherwise it is usually a gradual decent into unconsciousness until breathing/heart stops. Achingly painful for you but probably not the worst for your Dad.

This is probably too much information for now, feel free to contact me directly if you want

www.cancerhelp.cancerresearchuk.org/type/brain-tumour is a useful website for general information.

Big hug and lucky dad to have you girls looking out for him

QueenOfTheMadhouse Mon 05-Sep-11 09:45:41

Thankyou for your reply, it is very helpful smile

His tumour is in his frontal lobe on the left. When Dad was first admitted to hospital it was like he had suffered a stroke, that is what i thought it was until he had the CAT scan done. I find it very strange as he hasn't had any headaches, which i always believed would be the first symptoms!

He has got a disability living allowance form on the way and his GP has sent a DS1500 form off for him.

I started another thread in general health as i noticed that this topic doesn't seem to get used very much.

myBOYSareBONKERS Sat 01-Dec-12 06:34:37

Hi - how are things? My Dad has been diagnosed as well

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