We Talk Brain Tumours

Hi zoeteen,

Sorry to hear your problems, must make situation you had earlier with snide remarks much worse. Is your mum aggressive towards them? It is so hard to know how much to tell them. My husband was told but he doesnt understand.

We had a birthday party for son today and were allowed to bring my husband home from hospital for 2 hours. It was champagne not white tonight.

Look after yourself love Opal xx

zoeteen, this must be an awful time if mum is saying she doenst want your sisters with her, maybe she is finding lots of people around complex and conversations hard to follow  The tiredness and weakness could be residual to a fit, not necessarily a full blown one, but a series of small ones that have caused excessive activity within her muscles 

Opal, glad to hear your husband got home for a few hours this afternoon, hope the party went well.

Martyn, a small amount of faeces in the urethra will be washed away by the next lot of urine that is passed, I agree with the comments made about her medication, and you really sound to have found extra special carers to help you

jms

Hello everyone, I'm not replying to anyone in particular but just wanted to share a very positive and hopeful story with all of you who are struggling with your loved ones tumours. My husband has a para pineal (mid brain stem ) tumour of unknown grade ,it's not possible to biopsy it or remove it because of its location. We were given a time line of 5 to 11 months and that was back in oct 2008! He has had the standard 6 weeks of radiotherapy after which the damn thing continued to grow.He was then started on Temozolomide on a 4 weekly cycle which has now been extended to 6 weekly in order to protect his blood count.To date he has had 18 cycles and is due to start cycle 19 in another week.It hasn't been easy and we have nearly lost him on 4 occasions due to seizure activity- he goes into status (continuing rolling seizures with no break )for days at a time .He also succumbed to an unkown viral neuro sepsis last year that nearly ended everything.However, he is mobile -walks with a stick-emotionally connected with us all ,still has a sense of humour ,and has steadily improved since summer last year. We pay for him to see a private physio who has worked wonders with him,she's an absolute genius! We also take him for weekly aromatherapy massages-all designed to make him feel good and that he's worth investing time and resource in.Sadly we have given up on the NHS who have made it clear that as he's dying anyway so whats the point of giving him physio/ hydro therapy etc?! Palliative care from our GP practice is woeful-the GP assigned to him hasn't actually seen him since June last year! Everything is left to us to chase and nag and cajole and justify.However,chase ,nag and cajole is what we have done and as a result of that he has knocked the prognosis out of the ball park.We know that the bubble will burst at some point and regrowth and deterioration will occur but it just goes to show that the medics don't know for sure how and when things will progress-there is always hope.My husband is 52 this year and has fought this tumour for 28moths-not bad eh?Undoubtedly there are 3 things going on for him

1. The Temozolomide is being highly effective in arresting / shrinking the tumour.

2. He has such a gritty determination not to leave us,he has never once complained or said why me- his view is that it's happened and we just need to work out the best way to move forward.

3.The support that the girls and I give him and the professional support that we've rallied for him.

Well that's our story in a nutshell ,I just wanted to let you all know that their are some success stories.and we do consider ourselves a success because according to the diagnosis he should be dead by now and he's not.Infact today we're going to go to our local garden centre for a coffee and a scone before settling down to watch the Scotland Ireland rugby match- life doesn't get much better than that!

Warm wishes and positive thoughts to anyone reading this- stay hopeful, we're all in unknown territory.

Rosskin x

Good Morning All.

Had grim day yesterday ,but today is another day..and a beautiful Spring like one it is up here in Glasgow. Where would we be without hope?

Thank you to Rosskin for your uplifting post. My husband is 55 inoperable Glioblastoma and is 5 weeks past intensive Radiotheraphy. Things have not been great.....but words like yours give us all hope. 

To Martin...I read your post yesterday and so wanted to write back but I do not have any of the medical knowledge that you were looking for .I am so glad that JMS was able to help you. Know that we are all with you on this grim journey.

To all of you out there. ......keep posting.........you have no idea how helpful your words are.

Catg

Good morning all,

It really is good to see this thread functioning to it's best again, although I'm sure we would all sooner it was not required at all.

JMS, Julie,  thank you both for your advice, it really is gratefully accepted and much appreciated.

Catg, thank you for your concern. I think I was probably aiming my questions towards the professionals with the relevant experience. A little more knowledge now stored within my old grey cells!

Rosskin,  We have to be so pro-active don't we? I don't care one jot that some so called NHS pro's regard me as a nuisance. I regard some of them as, rude and sloppy, with a surprising lack of knowledge and ability. In fact when someone goes out of their way to help us, in actually fills me up and brings tears to my eyes (obviously getting a cold!!), but that doesn't happen too often.

Best wishes to you all. Martyn

Hi all, hope you are all doing ok. Ive had a few very busy days and wanted to share some good news with you all. I was due to get married later this yr but due to recent news around my mums prognosis we have decided to bring it forward. We have found out that weve been granted a waiver so we dont have to give usual notice to marry and our wedding will now be on friday! This means so much as not only will my mum be there she will also be well enough to enjoy it. I have also signed up to complete the london triathlon in july for brainstrust. It helps that i can hopefully raise awareness and also some money to help others that are affected by this awful disease. Love to everyone x

Hello

Thanks for all suppport and answers,

firstly CONGRATS Loulou for Friday, I hope you have a fantastic day and you all enjoy your time together.

Opal I am so glad you had the party and time together.

We are seeing mums consultant in morning, not holding out any hope from them but hey, we will see, it is nice to hear some positive comments and stories, will update tomorrow hopefully with no wine, think I'm becoming addicted now!!!

Teen xx

Loulou - excellent news, congratulaions and hope you will both be very happy together.

Have had a good week but why do I now feel that I am on the edge of a cliff waiting for something awful to happen?  paul has been "giggly" and fun for days now, its his birthday on saturday and we have planned to have friends around but worried it will go pear shaped coz of this awful disease, not like me as I am usually glass half full person.  Maybe its because I have been told no caterers and i have to cook, and today told at least 3 vegetarians.. any recipe ideas would be welcome

JMS xxx

Congratulations and best wishes for Friday. Such happy news.

Just back from Oncologist ......not such a bad meeting. Were only 45 mins later than appointment time which in itself is good.

 Mark has scan to measure tumour in two weeks then a follow up visit on the 28th...so as he says...a months reprieve. Managed to ask all the questions I had on my list( thank you all for that suggestion) and they said that they would not close the door on any ideas that we may have further down the line with regard to alternative treatments....depending on individual patient.

Tired, but do not feel as despondent as we usually do. 

Teen. Hope your meeting was ok?

Hi all,

It's been a very long time since I posted and even then it was not very often.

Quick run down, My Mum was finally diagnosed with a Grade 4 Gliob... in May of 2010. She had surgery to remove as much as they could and then had 6 weeks Radiotherapy and Chemo. After the 6weeks rest it turns out tumour had grown back to definitely original size if not bigger. In September they debaulked and told us that was all they could do.

She was discharged from hospital into a palliative care home just before Christmas and they did not expect her to last for long. For the last few weeks she has been getting worse and can no longer swallow so has had no fluids or food since Wednesday. The nursing staff have now told us that they are giving some form of IV to remove the secreations that are building up in her mouth because she cannot swallow and to now give her the morphine that way. She was taking Oramorph but due to not being able to swallow she can no longer have that. They told us this morning that there is no time limit on when she will go but expect it to be days.

Am totally numb at the moment and really don't know how to feel or what to do.