We Talk Brain Tumours

Welcome Jenny G and yes you have found the right place. and very sorry to hear about your husband.  As you say everyone is different and I can't answer your question as my brother wasn't given any radiotherapy but there will be someone along who will be able to.

I found everyone here without exception were and still are very supporting,  This is the place where you can ask questions, share your worries or even have a rant about the terrible cancer if you need to.

Take care xxx

Hi Jenny G

I am really sorry to hear about your husband.  If you read my profile you will see our horrible journey with GBM.

My husband lost the use of his right arm after the biopsy because his tumour, albeit at that time was 2.5cm, was on the movement part of the brain.

He got a bit of movement back (he could lift it a bit and move a couple of fingers, but he couldn't 'use' it and it would just hang at his side if it wasn't supported.

At that time, Steve could still walk and he then had weakness in his right leg following a series of fitting one evening and then never walked unaided again.

Have you got support around you ie Macmillan Nurse, District Nurse, Hospice etc as all of these people are a great source of help.

How are you both coping with the mobility problems.

When Steve's speech started to be affected fortunately, I could understand what he wanted alot of the time because I knew him so well and I used to ask him yes/no q's which helped us.

A speech therapist (organiesed by the GP)  gave him a book with pictures in but he didn't want to use it.

Take care Jenny and let me know how your are coping.

Ann x

moving us up

Hi

I'm new on here. (Ann B recommended I post this here as well!) 

My dad was diagnosed with glioblastoma multiforme in December having rapidly become very sleepy and unstable. He fell and was admitted to hospital where they then found out what was wrong.

The tumour was removed and he is due to start chemo and radio therapy next week.

I am wondering really if anyone has experienced the next bit before treatment started

In the last week, dad has begun to sleep more and more. It started with two 1 hour 'naps' during the day but now he is really only awake to eat.  His walking ability has reduced majorly in the last 4 days to the point we now have to hold him to get him up the stairs or to the bathroom.  The hospital have told us to raise his steroids, which we have done but he just seems to be declining almost by the hour.

Thanks.

Mich

Hi Mich,

Sorry to hear about your dad. My dad too was diagnosed with a GMB 4 in November, had it removed five days later and started his treatment last week.

I have noticed he has been a bit tireder over the last few weeks, but thankfully no other major symptoms at the moment (touch wood). Maybe this is due to the positioning of the tumour - it affected his speech and language in the week before he was taken to hospital with a piercing headache. 

Do you have an oncology nurse you can speak to about his symptoms, who might be able to explain why this is happening? Sorry I know I'm not much help, but wanted to respond to your post so you know you're not alone.

Thinking of you,

Debbie xx

Hi Mich

Thats great - you found us - keep posting as alot of people are not posting at the moment probably due to the time of year.

This is the place to seek help, support and have a good rant - we don't mind as we know exactly what you are going through.

Do you have any support at home ie a Macmillan Nurse, the district nurses your Dad's GP as they will be able to help with getting equipment if needed and help with the medication.

Take care

Ann

Hi Ann, thanks for your reply.  We do have a lovely Macmillan Nurse who comes every couple of weeks but no-one else at present.  Rob doesn't want anyone else to help him get up in the morning etc.  His mobility  (or lack of it) is a great concern.  We have brought our bedroom downstairs as he cannot get up stairs anymore and really can only shuffle very short distances with the aid of a stick and me steadying him.  I went out to work on Weds and when I got home he was lying on the floor having fallen when he was trying to transfer from commode to armchair.  He was very upset as he had not been able to get himself up and then I felt really guilty for leaving him.  We can understand each other even with his lack of speech but I am finding that he is getting less responsive and doesn't always hear me when I talk to him.  It is all so horrible and I seem to be getting less able to cope with it this week.  Lots of tears have been flowing and I am getting really despondent as he seems to be in decline again rather than improving from the radiotherapy.  I know I will get through it as there is no choice other than to be there for him but it is so devastating to watch the man you know and love become someone else.  A bit like you, we have only been married 6 years (but together for 9 years) and we had such plans for the future.  It is so cruel that this has all been taken away from us.  Sorry to go on a bit today but I am feeling so desolate. 

Thanks to everyone on this site for all the support and advice that can be found on here.  It helps a little through this terrible time x

Hi Jenny

Please do not worry about letting go on this site - we all know what you are going through - everything you say is how we all fell/felt.

Please do not think that I am telling you what to do but your situation sounds the same as ours.

I know your husband is reluctant to have help (this is only natural) but you have to think about yourself aswell - we had many falls and I wasn't able to get Steve up again and like you was desperate (the tears are coming down my face thinking about it).

My thoughts were what would happen to us if we both hurt ourselves (it was only a matter of time before Steve broke a leg/arm and him falling on me).

If the person you are caring for is light weight and you have others to call upon then maybe you manage a bit better but I was on my own with no one close by to call upon and Steve was 6 feet tall and a big guy.

BT falls are not just falling over and you are able to get yourself up again

Do not feel that it is a betrayal - speak to the Macmillan nurse and your GP as our District Nurses were going to organise someone to come in.

May need a bit of gentle persuasion from you to let others help you both.

Also dicuss the equipment aswell because if you do not have some of the equipment if things progress then sometimes the carers cannot do the work needed (health and safety).

At the stage you are at I could not leave Steve for more then an hour once a week as he couldn't get to the bathroom.  I would only be a a few miles away and he would phone me to go home.

Hopefully you don't mind me telling you all of this but I know just how desperate you are - could you take time off work to be at home all of the time (maybe worth speaking to your employer).

Every journey is different but when you are on your own it is so much harder.

Let me know how you get on and I am thinking about you both

Take care and sending you a massive hug

Ann x

Also posted on other site.

Hi all

I just wondered if anyone had had any experience of Nursing Homes? My dad is now quite poorly and is unable to be at home. The Palliative Care Macmillan hospital where he is at at the moment are making noises about him going into a Nursing Home. We went to visit one, and it just seemed dire and full of very elderly, very poorly people. I know my dad is very poorly and is no spring chicken, but it did not seem the most appropriate place for him.

It would help if we knew how much time we have left with him, as I feel that the best place is where he is at now. It's all a big mess and very upsetting for us and especially for my poor mum who feels that she is letting him down if he was to go this route.

Just want to say thanks to everyone who has replied to me in the past. I haven't been on or posted for some time, and looking back I realised that I had received a couple of replies that I didn't acknowledge. Thanks again.

Ann B the last time I was on here you were very helpful. I hope you are as well as you can be. xx

Hi,

My husband was moved after 4 and a half weeks in hospital, into a nursing home for the last 4 and a half weeks of his life, he died 3 and a half weeks ago. The consultant at the hospital where he was treated saw no reason for us not to be able to look after Brian at home with a care package in place but both our Macmillan nurse and a nurse from our local hospice both advised me, after long discussions, and a lot of guilt on my part, that actually a nursing home would be the best option for us all, Brian was 67, but I am 46, and our children are 20 and 22. Brian was assessed and approved for a continuing care package fully funded by our PCT. We were given a list of 5 local nursing homes that we could use, the first one we looked at was dire, a smell of urine greeted you at the front door and no way could we have let Brian live here. The second one we looked at was a BUPA care home which specialised in palliative care, both the manager and assistant manager had qualifications in palliative care. I was apprehensive about Brian going into a nursing home but I have to say from day 1 I had no regrets, other than we, as a family, should never have been in this situation, bloody cancer. We had unlimited visting, the staff made us feel so welcome and went out of their way to accomodate any requests we had. We would join Brian for meals, and were included in all meetings with the hospice nurse to discuss Brian's medication and continuing care needs.

When he went downhill on the Wednesday before he died, they made a room available for us as a family to use, I actually moved in on the Thursday till the Monday he died and slept on a recliner chair by his bed, they provided me with 3 meals a day, gave me free use of the kitchen to make drinks and provided me with towels and a bathroom to use. When my daughter arrived in the morning, they would always ask if she had had breakfast and then would take her to the kitchen and give her something to eat.

The staff were always available to answer my questions and were always on hand to give hugs and pass tissues when I needed it, I spent hours talking to them and not once was I made to feel that I was keeping thme from their job.

It may not have been home, but it was pretty close and I don't have any regrets, it meant all the time we were together in the last few weeks was quality time.

I'm sure not all nursing homes would be as good as this one and we were very lucky to have a positive experience. If you want to private message me you are very welcome, Brian's death is still very raw, but if I can help one person in the way I have been helped and supported over the last 6 months I'm more than happy to do so.

Take care, and good luck xx