We Talk Brain Tumours

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ann, my name is ann too.i came on here in early 2010 when my husband was first diagnosed with gbm4. his was similar to your husbands - motor cortex - he died 5 july 2011.

Dear ann

so so sorry to hear of your loss, early flippin days mate,me too.

we have to fight on and make the authorties aware of the rarer tumours.

My husband died of a very rare kidney cancer.

I am fighting his corner and for all the patients after him to.

Be strong ann

love jmd x

Dear All,,

Not been posting lately, but following everyones' progress everyday.

Kerry/Ange, in my professional life in social care, I am sure that G could be fast tracked for Continuing Health Care,  from  my understanding he would meet the domains/criteria that are set out, so push that the medics etc take G down this route. I will be thinking about you and and hoping that this is successful, at least in alleviating some of the difficulties you are facing..

On a personal note, I am on leave from work at present, and I feel so low, I don't want to wallow in it, but cannot seem to stop crying and feeling angry.

Today, Dave went for a scan and we are back in just under two weeks to get the results. He seems very tired and 'mithered' and I am worried that the tumour is growing again. Today the District Nurses were coming to dress a wound on his leg, the result of scraping it badly on the stonework at the side of the door about three weeks ago. I rang them a few days ago to inform them about the hospital appointment today and agreed that a pm visit would be best, but apparently they turned up at around 11-00am according to a neighbour. Later left message on their answerphone and then visited our G.P. surgery to try and sort it out, and ended up crying and 'losing it' a bit in the surgery. A little thing, that has unsettled me profoundly. The nurses are now coming tomorrow at some point, and I have an appointment on Tuesday at the G.P's , because the receptionist was so concerned about the state I was in.

I feel bereft and never felt so much alone in my life or hurting so much, I cannot seem to accept the reality of our situation... sorry everyone., I am usually a very private/strong person and cannot get a purchase on this at all at the moment, I feel like everything is disintegrating. I am going to have to get a grip on things.

My thoughts are with everyone tonight on this site, keeping their own vigil and going through a very personal and seemingly uncharted land.

Elaine B.K.

Hello Elaine,

I don't post very often as like you I am a very private / strong person but your post echoes exactly how I feel.  My hubby diagnosed with GBM in June 09 and I still don't accept what has happened to us and never will.  It's the stress this vile illness brings into our daily lives that makes us intolerant of annoying 'little things' and this is why it is so easy to 'lose it'.  I have never suffered fools gladly anyway, so you can imagine how I am now!  The loneliness and hurt is something no one, only those in the same boat will understand and crying and anger becomes just part of the cruel life we've had forced upon us.

I hope Dave's scan results are favourable, (the waiting does your head in doesn't it) and that the next few days will be easier and calmer for you. There will always be days when we feel like 'throwing the towel in', but that day passes and a new one arrives and we must all try (hard though it sometimes is) to remain positive.

Love Debs x

Elaine, I'm sorry to read of your struggles. It's such a miserable and isolating disease. Today I was at the hopsice with my dad and my mum cried for three hours straight (while dad was asleep). I have never seen her look so worn out and worried.

Lots of love to you.xx

Evening everyone, thinking of you all.

No real change to report with dad. Spent the afernoon at the hospice. In the last three days they have reduced dad's steroids back to 8mg. They tried doubling them, then tripling them but all it did was making him anxious and restless. And so now he sleeps again. A lot. We can feed him half of his main meal then he sleeps for a couple of hours before we attempt to feed him some pudding. His choking has reached new levels to the point he even chokes when sipping water now. He vomited a couple of times today. He has a portacath (sorry, I don't know the correct technical term) where he has sedatives injected straight in to it and also sleeping medication. I think I'm correct that they are going to inject his epilepsy medication and steroids that way too as he is finding it impossible to swallow tablets.

Mum had a mini breakdown at home last night. She said it finally dawned on her that dad would never go home to their house again. She feels like she's abandoning him [by either leaving him at the hospice or moving him in to a nursing facility]. It's so distressing.

To end on a positive note, he knew who I was today - he called me by my name and held my hand for a while. I live for those moments.

Love to all.

Naomi.xx

Hi Ann

I am really sorry to hear about you loosing your husband, as you can probably read by my profile we had a horrific time with my husband' s tumour being on the motor cortex.

If you feel up to it I would be interested to hear how it affected you and your husband as you are the first person I have known on this site to have a tumour in the same place.

When my husband was diagnosed there was a man in the bed opposite who lived 5 miles away from us and he had the exact same diagnosis as us but his was behind his ear and affected his memroy mostly and his speech and he was able to walk into the hospital for his treatment and have holidays.

None of this for us.  We never had a holiday again and from Nov 2009 until June 2010 we struggled to even get into the hospital for treatment.

Steve was the only person who couldn't walk into the hospital.

Not saying that everyone else wasn't feeling the same as us but they all walked in un-aided all walked out except us.

Such difficult times and it still upset me today.

Mt advice is to take every day as it comes and not to ne pressurised by others.

Take care

Ann x

Naomi.  Very sorry to hear that your mum is going through all of this.

I hope this helps, but I think you should try to remind your mother that home is where the heart lies. And where your father is concerned, home is where he's most comfortable with his family around him.  I'm sure that he doesn't care where he, but he does care about who's with him.

Hi all,

Elaine, thank you so much for your reply re fast track.  It's hard to think that G might have to be moved out of the hospice after they were convinced he only had days, two weeks ago but this could happen and then I will be in a similar position to Naomi and her mum and dad (thoughts with you Naomi x)

I'm glad that you've taken some time off work but even though this was needed, it can still act negatively in that it takes away the distraction of work and gives us time to wallow and worry about everthing so much more and hence get in a right state which is where you seem to be now x  Please don't apologise for getting things off your chest, we are here to listen and to share and if you keep things bottled up you will only explode at some point.

The time between scan and results is so stressful, G used to have scan every three months and the wait for results was often unbearable, especially when we thought that he was having symptoms.  I hope that Dave's results are good and that this gives you permission to relax somewhat and to cherish the time that you have left together.

Thoughts with you all.

Ange x