We Talk Brain Tumours

Hello Hayley

Welcome to the thread, wishing you much strength and support for yours and Camille's journey with brain tumours. Hopefully you will be helped along the way by others going through similar things... we keep each other going.

Lorraine

Dear Jean

So sorry to hear about Paul, you are in our thoughts; customary candle and malt will be in place tonight.

Take care - Robin

Dear Jean I am so very, very sorry to read your news, I just came on here to thank you and the others who answered my previous post and saw what you had written.

May you have peace in your heart and I hope you don't find me disrespectful writing my latest concerns and questions on the back of this message. x

Since I last posted my mother has gone further down hill with her GBM, it seems to be since they upped her steroids because of previously going down hill just over a week ago.  She is continually vomiting and has now had two doses of her palliative radiotherapy (the original aggressive treatment with Temodor was scrapped).  Tonight my father couldn't wake her from the sofa, he tried for 30 mins and eventually had to call an ambulance, the paramedics managed to wake her and put her to bed, where she is at the moment. My father said she seemed to be in a near comotose state. I'm wondering how she will cope with the next four doses as from what I read the patient becomes more tired after treatment ends, she sleeps more or less continually now, can hardly walk and doesn't know where she is, maybe it is best to stop this radiotherapy? My brother and I believe she will most probably pass away in a couple of weeks after reading Brainhospice site as she has all the symptoms of the '3 to 6 weeks left' mark.

I'm now starting to feel very sick, anxious and worried, I have managed to somehow keep a clear head and be strong for everyone but am now concerned that I won't be able to even get her in the car tomorrow to go to her radiotherapy, Friday was bad enough she slept all the way there and I had to take her in slumped in a wheelchair and she vomited violently all the way home and when we got back too. She didn't even have any idea where we were going or what for even though I had told her repeatedly, god I feel cruel forcing her in the car like this.

I don't think it is the radiotherapy causing the vomiting as it started a couple of days before it began.  They are going to change her anti-seizure to Keppra when radiotherapy finishes at the end of this coming week but I now don't think it is that either.

She had another ct scan last week because of this progression and unbelievably there wasn't any regrowth of the tumour since her surgery early September but there was fluid in the cavity left by the tumour, just wondering if the fluid is causing all this.

My god this disease is just so damn awful, I am starting to hope my dearest mum passes away in her sleep soon, I can't bear watching this dreadful suffering, sickness and total and utter confusion she is experiencing, seems incredible that she was fit and well only a couple of months ago and now seems at deaths door.

Not really sure what I am asking but just need to vent some of this here.

I wish everyone strength and peace.

Fee x

Fee, I want to reply to your post although I really don't know what to say that might be of any use.

Which doctors are your seeing at the moment? If you are just going into hospital for rt you should be seeing a radiotherapist or a neurologist. Could you get an emergency appointment with one of them to find out if they consider this normal and is the kindest thing for your Mum. I can't imagine they will continue rt if they think it will not have the result they are aiming at. Perhaps the appointment could be just for you / you and your brother.

It's very easy with a bt to fall between the various doctors treating and be left, (especially at the weekend) not knowing who to contact or if you should. I know a lot of people on this thread have that problem.

This must be so horrible and difficult for you.  Stay strong as you are doing. xx

CHxx

Hi Fee,

Unfortunately I can't offer you any advice I'm afraid. We are much further on than your Mum, but we believe that Doreen may be still showing the after effects of R/T, even though she finished over 6 years ago. She is exhibiting all the classic signs of raised cranial pressure, but a recent scan says no tumour progression!  We have managed to get an appointment with a neurologist for next month, we have only been seeing the neurosurgeon,  so hopefully we may get a better overview of her condition?

I do feel for you and your family, this is such a cruel illness.

The very best wishes to you and yours.  Martyn XXXX

Hi Fee

I'm sorry to hear about your mother it must be so distressing for you.

Sending you good vibs x

Hi Fee

I agree with Crazyhorse in that I think it would probably be best if you speak with someone about your mum's condition - afterall you only want the best for her and at the moment you are understandably in total confusion - on one hand wanting her to have the rt as that seems the only medical hope at the moment, but on the other seeing her suffer the possible side effects and the trauma of the journey to get there contradicts the possible benefits - for these reasons you do need to speak with the ns to get their take on it - then at least you know you are doing the right thing by your mum and that is all anyone can ask of you.

Ring the ns's secretary and explain to her the urgency and hopefully someone will take this seriously and get back to you asap.  Perhaps someone will see you tomorrow when you are at the hospital - you could always go to casualty whilst you are there and then the on-call ns will come and see you - we have been advised to do this, and have done, when P has been so unwell.

I hope you get some answers tomorrow, stand firm and insist, these are your family's lives you're dealing with, not some numbers caught up in the NHS system - thinking of you  xxxxxxxx

Dear Jean

My deeepst sympathies are with you.

Reat, and be free now Paul from this terrible disease.

LOVE PEABS XXXXX

Dear Fee,

I really feel for you, it is so terrifying for you to see your mum like this and not know what to do. Have you got a Macmillan nurse because this is just the sort of area that they are so skilled in. Our  Macmillan nurse in consultation with the hospice doctors constantly monitored Paul's ever changing symptons, adjusting medication and offering advice on a weekly sometimes daily basis. She was an absolute lifesaver and the respect I have for her opinion knows no equal.

If you don't have one ask your GP, Consultant or District nurse to be referred, you sound like you are in such need of support and you and your family deserve to have it.

Thank you to all of you for your kind messages of sympathy and support, I am doing my best to get through each day and when you think about it all of us have a lot of experience of doing just that!

Thinking of you all and wishing you well.

Love

Jeanxx

Hello and thank you so much for your kind replies, it really is a comfort.x

Things have moved on again and mums legs totally buckled in the early hours of this morning when my dad took her to the loo which is only a few steps away from the bedroom, he couldn't get her up so she had to wee onto a towel. Once again the ambulance came out and were so kind and put her back to bed, her stats were all ok including BP and sugar levels but it has transpired that when she moves her head it causes massive dizziness and nausea.

Today I rang the palliative team and saw her GP as there is no way we could take her for her radiotherapy, everyone has been remarkable we have had rapid response nurses come this evening who have given us a sort of wheelchair that can be pushed to the loo and reversed onto it and tomorrow we will have an occupational therapist come to sort out ways for mum to be bathed. We are now also under the care of the Pilgrims Hospice who will pay their first visit this Wednesday, we have even been offered night care a couple of times a week so my father can have a good nights sleep but as yet he doesn't want that (he is not a well man either.) I wish I could sleep over there now but I have children at home and am divorced but friends will be helping out so I can spend the nights there soon.

Tonight my mums blood pressure has gone quite low which I believe is not a good sign.

Tonight has been a relief that we are now getting help but also so very upsetting that it has come to this so soon, my dad has been howling with grief and sobbing in my arms, the first time I have ever seen him cry in my life and I'm 45.  I think it has now really hit home how bad mum is when he heard the word Pilgrims Hospice.  Up until last week he refused to be told any prognosis and told me not to tell him anything but it got to the stage where I just had to tell him. 

I don't think that any more treatment will happen for my mum, the doctor and the visiting nurse said there is no way we should take her 20 miles in car in her condition, plus we were warned that she would be kept in hospital and we desperately want her to pass away at home, plus she gets utterly bereft and more confused when she is in the hospital.

We will be speaking to the N.O on the phone tomorrow (she wasn't available to speak to us today) as we were due for a very early morning appointment there but there is no way we can go, I have a feeling too that they will say to stop the treatment. Unless there is a sudden upturn in events I think now that nature will take it's course, my doc says it seems more like weeks than the 4-6 months we were given last week.

So from being a healthy active lady until August this year our journey with GBM seems to be at the final stages after only a couple of months.  Who knows though, maybe mum might have an upturn, even if its just for a couple of weeks which would be lovely.

Thanks once again for your replies and I hope I can be of help to anyone in the future, I will keep you posted about my mum too.

Fee x

(Blimey I write long posts ... sorry!)