We Talk Brain Tumours

Hi Opal,

Please,please never feel silly. Fits can and do present themselves in various ways as I think Martyn pointed out recently on this thread. My husband is home with me. I rushed him into hospital when I suspected that he had a bleed. It was all very sudden. At the hospital his steroids were increased and a bed was arranged on the cancer ward. My husband became very aggitated when a stay in hospital was mentioned and I just couldn't leave him there. The reg was dithering about whether to order a scan or not at which point I firmly requested a scan be performed and this did indeed confirm a bleed. I was told that the bleed could not be treated and we merely had to wait for the brain to absorb the bleed at which point I decided that if treatment was not an option than I would care for him at home. I have promised my husband that no matter what I will always care for him at home. On the 2nd day back at home my husband started complaining of funny smells around the house. At one point he insisted that I change all his clothes, the bedding, etc as they all smelled "rotten". At this point I suspected he was having "auras" which could lead to full blown fits. I contacted the oncology team who confirmed focal fits and increased his anti-epileptics. So you see Opal, fits can present as funny smells and I didn't know this until it happened to my husband.

Beedarsh

Hi Beedarsh

Thanks for reply. We all soon learn to be 'experts' in many fields, dealing with things on a daily basis, like someone said in an earlier post we are the team leaders.

Love to all Opal xx

oh Debs,

how insensitive of her, some people don,t engage brain before saying something. i am ashamed to say that some health professionals do need some lessons in how to communicate. i read a long time ago about a guy in the USA who was told he had 6 weeks to live. He poo pooed all the professionals and lived for 26 years before passing on. We do not have a crystal ball and no one knows whats round the corner. His name was R A Bloch. His letter inspired me and made positive and strong. So keep strong and positive and who knows the will be a cure before we know it. my son has just finshed his 2nd week of radiotherapy. He feels ok but very tired but is focusing on getting through his treatment, getting married and there are  pregnant too so something else to look forward too.

Love Suexxxx

C

you are right about been too trueful almost to the fact that they seem to be rubbing it in, or thats what my son feels, say it once and lets focus on the positive. i certainly think and talk to patients in totally different way since both being a cancer patient myself ( they told me 5 years maybe, its 7 years now) and even more now my son is fighting a brain tumour.  There is no crystal ball as i said to Debs, no one knows whats round the corner, advances are coming thick and fast. so fight and stay strong.

Love suexx

julie,

i with you, have been a health professional like yourself for a long time and until it happens to you, it is impossible to empathise properly, find it harder to cope with watching my son go through this then it was for myself. but one thing i believe hope is so important and it needs to be conveyed even in our darkest moments.

Suexxx

I would like to ask 2 questions if I may?

I decided to try a reduction in Doreen's MST (slow release morphine). She was on 10mgs x 2 and I wanted to try 5mgs x 2 (this is the lowest dosage in this medication). The GP agreed.  Doreen has difficulty in recognising pain, plus I am a great believer in minimising medications so that the full benefit is achieved if increased. She has been on the new dose for 4 full days and all seems fine except, she seems to have cold symptoms and is more tired than usual, in fact washed out is closer. Could this be the initial affects of the reduction anyone know?

With Doreen's complete immobility, she wears a full continence pad which is changed twice a day. The carers we have are outstanding. We monitor Doreen's bowel movement and urine very carefully as she has had many UTI's and this so mimics a tumour advance, was very scary at first. The catheter was removed as it was felt this was contributing towards the infections.  The other evening the carers reported that the some faeces  had actually been squashed up into the front passage. They went well beyond their call of duty and picked as much out as possible using cotton buds. I was very worried about more infections. I rang the GP the next day and was told that I'm not to worry as it very doubtful she would get an infection that way as the uretha is way up and very narrow. It could concern if it was diarrhea, but don't worry.  This is a relief as well as a surprise as I've always heard ladies and girls should wipe front to back etc.

Any comments, advice would be welcome. We only have the carers who aren't medically trained, but bloody magnificent in what they do for us and our GP who will rang back Monday till Friday. 

Thanks and best wishes to all, Martyn

Martin,

Firstly reducing the MST COULD be causing the 'washout' symptons that Doreen is experiencing- particulary if she has been on it a while however if your doctor is happy with the decrease then follow his/her advice and I would also mention the symptons you describe to him/her

As for the incontience side of thing, staff are taught, like you described, to keep the urinary system separate from the bowels.(simply because the bowel is full of bacteria) If it happens A LOT - say every day- bugs CAN travel up into the urethra - but this isolated experience should be okay.   She should be okay the odd isolated occasion, however do mention it if its becoming a regular problem.

In relation to antibiotics- antibiotics should only really be used IF there is an infection ideally though I do know that in cancer patients particularly when they are experiencing chemo and or radiotheraphy can be put on a small dose of antibiotics just to give them a bit of protection when their immune system is weaker. Normally antibiotics are only given when there is an infection. Thats how MRSA came about in the fact that the infections became immune to antibiotics!

Take care everyone

Julie

Just to say to Debs I was slightly gobbed smacked at the womans words to you! I wonder if she realised what she said!

Going back to my previous post, my husband had a course of septrin just to see him through the chemo and radioptheraphy but he didn't have anything for the subsequent chemo.

Julie

Julie,

Thank you for your response. very much appreciated.  Best wishes Martyn.

HI All

Just a few questions, sorry to be selfish, my mum has now started to stop my sisters etc seeing her as she dosn't want them around her, only myself and my husband/girls (15 & 4 yrs) she keeps saying she dosn't want to see them and is pushing my dad away too, tonight she has had a tight sensation and pain in her face and said made her feel weird and sad???? her arm has got worse and she can not lift it without using her other hand and has lost sensation in her fingers and she has slept 4 times today, this is the lady who dosn't sleep!!! we were told weeks after diagnosis (10/2/11) is this is what is happening??? I feel she is fading in front of me, she obviously dosn't know the severity of this and thinks it is her medication, any help advice gratefully recieved.

Opal having a large glass of white tonight!!! hope all ok with everyone xxxxx