We Talk Brain Tumours

Hello Ann

No he is seeing a locum called Jamie Mills.  I just found his tone and manner very defensive and generally not overly helpful.  The treatment plan hasn't been fully discussed with dad, the whole thing has been so fragmented.  He has phoned and I have written and complained so hopefully when the 6 week regime starts (this Monday - very scared!) things will click into place and we will all know a bit more.  A very good friend of mine is a GP and he told me 2 years ago when this terrible journey began that Neuros are incredibly clever people but they are awful communicators.  So far we have been only really dealing with Donald MacArthur and he was amazing so I think maybe I am comparing them which is never a good thing I suppose.  Like you, I just want the very best the NHS can offer and overall I think they do a good job, I work for the NHS so I really do believe in the system.

Thanks for your helpful email.  If you have any tips at all they would be gratefully received.  So far I have been told that staying hydrated is important, to use baby shampoo and use Aqueous cream for the sore scalp.

I am just so very frightened about the qualiity/quantity issue.  He is remarkably well at the moment and just worry about treatments.

Take care

Helen xxxx

Hi Helen

It seems a bit strange that your Dad is seeing a locum.  Not heard of the two names you mentioned.

I can fully understand how concerned you are, especially being a distance away aswell.

I remember some time back you mentioned Dr Matt Griffin at City.  Has your Dad ever met/spoken to Matt Griffin?

If you Dad is under Matt Griffin then I would suggest that you ask to speak to him direct, obviously going through the oncology secretaries, but stress that you want to talk him personally.

He is at City on Monday's & Tuesday's and he has always called us back in between seeing his patients. Main  Tel No: 0115 969 1169

The radiotherapy staff are extremily nice at City, so get you Dad to relay his concerns with them.

I know that the treatment sounds excessive/scary but in our experience you are caught between the devil and the deep blue sea with extremily difficult decisions to make and these decision do not get any easier the further you go down the line.

We often think what would of happened if we hadn't of started treatment as pre treatment, my husband was still well and still himself except for a stiff hand.

I suppose if we hadn't of had treatment he may not be here now.

There is no telling how your Dad will respond or cope with the treatment as everyone is different.

Unfortunately, radio with chemo is the first stage of treatment and after the next scan, then it is chemo on it's own which is a much higher dose.  If I remember rightly it is about 125mg with radio and then 200-270mg on it's own (Temozolide) but it depends on body weight aswell.

My husband was as well as can be expected when on radio/chemo but he didn't like temozolide on it's own due to the high dose and the effects he had.

After his scan, it seemed that the tumour had grown so it was felt that this treatment hadn't worked.

We were then offered PCV chemo which my husband prefers (4 cycles completed) and the tumour has stayed the same size in 6 months so good news.

However, I do feel that it is inevitable that quality of life is affected when on treatment.

I do hope this helps a bit.

If I can be of any help do not hesitate to ask.

We are seeing Matt Griffin in a couple of weeks time and I feel like taking up your Dad's case with him but obviously I am not allowed!

Supporting you from up North!

Take Care

Ann x

Hi, it has been a long time since I've posted (January) but I have been reading regularly. I just wanted to send my best wishes to Martyn as I see he's at a difficult stage in this journey, he welcomed me when I joined last summer and I am grateful. Also Robin, who I don't think I've 'spoken to' but I've followed your story and also am thinking of you.

My mum is doing well, off the chemo at the mo, had a minor set back (or so we hope) of a little bleed so back on steroids and awaiting a scan to check that's all it was (mild trouble finding words again) the steroids are definately working though.

 I suppose I'm not writing as things have kind of plateued and I've struck up a friendship (over the internet) with Shellety who I met on here who's journey mirrors my own - this has been so helpful to really talk it through with another (adult) child of a parent with GBM4 of a similar age and shows how wonderful this site is! (I'm doing a walk soon for Mac and have raised £500 so far...I can't really re-pay Macmillan for all the support I have recieved from this forum in the past and I am sure in future. I read often even though I don't post (and cry quite a lot too!) I know I have all this to come and I suppose sometimes I just like to try to stick my head in the sand a little.  Sometimes going to work when my life feels like it's falling apart is so hard....

Anyway, big cyber hug to everyone reading.  You're all in my thoughts - including the recent new members - 'hi' and you really will find the knowledge of the people on here insightful and peoples thoughtfulness heartening (if that's a word!)

take care h xox

Sorry it's been a while since I last posted.  Robin and Martyn my thoughts are with you both at this time and everyone else.  It's hard to know what to say as it makes me feel tearful when I read your posts.

Well done IdreamofFigi for raising such a lot of money and everyone who also done similar things  recently.

I see that we have some new members whilst it's sad in one way at least they have a place to come to.  I will never forget the support and kindness that I received when my brother was finishing his last journey.

I will just close by sending my love and big hugs to you all and hope you find  the strength to carry on with or without your loved ones. xxxx

I am no stranger to cancer. Over the last 5 years I lost my best friend to lung cancer, my mother-in-law had her stomach removed because of cancer and now weighs 39kilos for 1m65cm which is concentration camp thin. My father-in-law is undergoing chemo and radio for rectal cancer and for the moment is holding up well. That is here in Belgium where I live with my husband and daughter but, all my family are in England. 

Two weeks ago my sister had a convulsion and was rushed in to hospital. After numerous tests, she was told she had two tumours on the left side of her brain. She had no symptoms at all. They did a biopsy and said it was cancer. After the biopsy she was really ill and paralyzed all down the right side and had difficulty talking. Over the last ten days this has got a lot better, she still has some trouble controlling her arm and has trouble talking when she is tired, but otherwise she is not too bad.

I completely lost it today. I think the enormity of what is happening to my sister(Lyn) has just hit home. I have no idea of what to expect, I don't even know what sort of tumor it is, other than the word cancer, nothing seems to have sunk in. What should I expect? Is it true that if they say it is inoperable it is in fact a death sentence or do some people survive? My brother-in-law has short term memory loss because of an extreme fever. I will have to wait until next Thursday for more info. If anyone can give me information I would be very grateful

Friday she and my brother-in-law went back to the Walsgrave hospital in Coventry for the complete test results. That was when we got the second bomb shell, it is inoperable. It is too deep and too close to the speech center so they said they can control things with chemo and radio therapy. When my brother-in-law asked questions such as will she get the use back in her arm? What's the prognosis? the answer was always the same. "We can not say". It makes me so angry, why can't they give straight answers to straight questions? We are both the same, my sister and I, we can handle anything as long as we know the truth and the facts. She's a fighter but she needs to know what she's fighting. Sorry to have gone on like this but being so far away and not being able to see her is driving me crazy.  

I will not be on here every day as between my home and family, my in-laws and their home and driving my father-in-law every day to the hospital for radiotherapy, as well as phoning my sister and dad I have little time left so I apologise in advance

Thanks Ann for your very helpful and informative email.  Dad is going to City tomorrow so I think I will see how he gets on but certainly I have no qualms about ringing and talking to someone else.  The Locum thing is a bit concerning to me too but will see how things go.  Have just spoken to him, he is very nervous and scared as expected.  He keeps getting a dry throat so worries about the mask and keeping still etc etc.  His new fear is about suddenly vomitting when he is on a bus or somewhere public. 

Right must dash my 6 year old Labrador has decided what fun it will be to terrorize my cat who is now cornered under the dining room table - the joys of being a pet owner!!  Take care and hope you enjoy the rest of the weekend.  Thanks again it really helps talking to you especially as you know the City hosp etc.

Hope everyone else is having a good day, catch up soon XXX

Martyn   -   Special thoughts for you and Doreen today.

Terice. -  Sorry to see that you have the need to join this thread and a few others by the looks of it !  How difficult it is to see this happening to your sister when you are so remote and also not without your own battles. You are probably aware that this is a cruel disease and will need to find out what sort of tumour your sister has in order to determine just how cruel. You will find a wealth of information here as well as support and friendship. There are a number of passengers who also have loved ones further afield, so you are not alone in this.  Best wishes - Robin

Terice, you certainly have a lot to contend with at the moment, I am sorry for that.  As Skeete says once you know exactly what kind of tumour your sister has will help others to help you.  However, unfortunately the neurosurgeon is sadly only repeating what most of us have heard sometime throughout this awful journey.  The problem is that the surgeons really don't know as everyone is unique.  Two people may have exactly the same tumour in indentical places but because of how our brains are formed the assoicated problems aren't the same - like the speech centre, the exact location will be slightly different on every individual so what causes problems for one person won't for another.  The surgeons are good at operating but they aren't so good at giving information with regard what will happen next - they tend to have calculated guesses.  I would also think that if they haven't diagnosed the exact tumour this would make it even harder.

My husband had a deep tumour - skull base wrapped around the brainstem.  The surgeon attempted an operation.  It went wrong which left my husband profoundly disabled and terminally ill - they queried whether they should have operated in the first place.  The surgeon and the rest of the team, such as physios etc, meet and have to take into account quality of life issues.  Unfortunately deep brain tumours are the hardest and most dangerous to operate on and most surgeons won't attempt it.  The fact your sister has already suffered disabilities from the biopsy will perhaps have been part of the reason why they have deemed it inoperable (my husband needed a second surgery which was withdrawn after the first left him disabled).  To loose your speech, as my husband did, is a dreadful disability which strips away your personality and I can assure you this is something which requires real consideration. 

The reason this forum works so well is because we have all at some stage and for probably for most of the time during this illness have felt like you - crazy with concern and wanting and needing to know more - with all the experiences each of us have here we are able to support each other in the best way possible.  You will come to realise that it seriously becomes one day at a time but that we will be here to support you along the way - there will be many ups and downs which may never be totally understood by the medics but are by us, those who are experiencing every little, but massive, consequence of this awful illness.

Take care xx

Hi Helen

Just had a thought about the locum - does your Dad mean Dr Matt Griffins assistants (don't no medical name titles).

If so, we have seen a Dr Sayers (man) and a Dr Brookes (lady) in Matt Griffins absence but again, both of these Doctors are extremely attentive and address your concerns.

My husband had his radiotherapy in treatment room 4 and if the staff are the same, they will again put your Dad at ease.

I know that the mask can be a bit scary but they do not start until you are happy/comfortable and the way that it is used it prevents you from moving and they talk to you or you can have music playing.

We used to have a retriever with two cats (mother cat terrorize the dog and the other one played with him).

Take care

Ann x