We Talk Brain Tumours

Catg, I know from when my mum had radio she didn't feel the full side effects until 5-6 weeks after finishing the course and believe that time is when the treatment reaches its peak. Your gp's response isn't particularly helpful, although we are all aware of the aggressive nature of gbm it is almost as painful being in limbo and not knowing the causes of symptoms. Do you have an oncologist or macmillan nurse you could speak to? Xxx

loulou, Seeing oncologist on Monday so perhaps will get some answers there although they did say at the beginning that everyone responds differently and has different reactions. I can cope with all of this being reaction to the treatment ...my darkest fears are that the tumour is growing too fast and that the Radiotheraphy has had no effect. Thank you for taking the time to post.

Cx 

Hi Catg,

It's a terrible worry to carry on your shoulders, I know, but try to ignore the bad stuff and focus on anything positive. We all know GBM is aggressive, but we also all know that there are some people out there who defy doctors and statistics.

Until you know differently for certain, keep assuming Mark's symptoms are a result of the radiotherapy and treatment. It's a harsh blast of radiation he's had, remember, so it's very likely to be causing swelling around the area of the tumour. Sending you good wishes. Stay busy, stay distracted and stay strong,

Lots of love, Debbie xx

Catg,

Prior to the meeting next Monday, think through all the questions you want answering and write them down. Those meetings can sometimes be a little overwhelming and we can forget to ask everything we planned.  Politely insist on 'understandable' answers.  The affects of R/T can last for 6 months or even longer.  My wife was given a prognosis of around 2 years, that was in January 2003. She does however 'only' have a grade 3 tumour!

Very best wishes, Martyn.

Catg,

I am sorry your GP wasn't a little more understanding, considering the circumstances.  Us patients & carers are not experts right from the get go, we learn as we journey through it, from sites like this that link us with people in the same situation and through our healthcare professionals.  I think sometimes the 'pros' forget that.

Yesterday a member of a BT group I belong to celebrated being a 10 year plus survivor of a GBM - she has had 4 surgeries and various treatments but they are so pleased with her latest MRI that she is being allowed to go to 4 monthly scans instead of every 2 months.

She is an exception to the rule but her message was, it can be done.  She doesn't consider herself cured by any means, just on a cancer break and I hope that continues for a LONG time.  I just wanted to pass on an inspiring story.

Martins advice of writing down questions is the very best thing you can do, I've often come out and been in the car coming home thinking "bugger, I forgot to ask about............."

Opal, don't EVER feel silly about anything that upsets or unsettles you and everyone here will agree that you can ask anything without fear or recrimination.  At some point at least one of us will have gone through it or thought it.

Love & Strength to all.

Debs,

You said something so true there. The health professionals DON'T have any idea what it is like to actually either live with the diease or be a carer of someone with the diease. I am a health professional and have been qualified a long time. I have seen many families over the years given devasting news about various different things, so I naively thought if anything ever happened to me or my family, I would have a rough idea of how to cope. How wrong I was! When my husband was told that he had a GBM4 last May, nothing could ever prepare me for the way that it impacted him, myself, our children and the life we knew. My husband thankfully is responding well to his treatment at the moment and we hope that that continues for a very long time! However the way that I approach patients and loved ones has changed over the years. Communication is one of the biggest factors in which the health professionals can help both the sufferer and the carer and if a relative is anxious or a patient needs to talk I always focus on getting them the information they need. This thread has been a vital part of finding out information and also the fact that knowing there are others out there that know how we feel. You are the only ones that know what its like.

What Martin has said is such good advice. Take a note book, plan your questions, it helps you when you are in seeing the doctor. It also helps if you write down the answers or if you are not feeling up to it, normally when we go we have a macmillian nurse with us ask them if they can briefly jott down the answers. No matter what the question ask it.

To Catg - like Debs said never give up! We met a young lad in the clinic last time who has a unoperable GBM4 who is still battling after 4 years aided with chemo and radiotheraphy.  It can happen.

To all the new people out there that are dealing with this horrible monster thinking of you all very much. A message to all the carers out there DON'T FORGET TO LOOK AFTER YOURSELVES! Sometimes when you are so focused on caring for your loved one you can so easily forget your own health.

Take care

Julie

Thank you all for your posts. It is so good to get some positive thoughts. We had a better night last night and this is another day. It helps to offload to others because I find it difficult to let the barriers down with friends and family because I am afraid that I will not get them back up!

On the subject of the Health professionals I have to say that they have all been very kind, but at times (if its possible)..too honest. I dread each meeting because another little piece of hope is chipped away by another word or sentence. I have to keep telling myself that they have to go by the data and facts and figures that they believe in, with no room for the unusual, the unexpected or the power of positive thought. Every idea that the family has suggested, Avastin, PDT at Ninewells Dundee, drug trials in Israel have been met with a sad shake of the head and a caution that none of these things have been proved.

We are not giving up.

Cx

Hi

There are some really good suggestions here, Debs, Zanadu your stories of surviviors are welcome and good news, there is always hope.

catg, one thing before you go on monday - think about the services you may need, do you need macmillan physio, OT, speech therapy, diabetic support Disitrict nurses?  List is endless.  Remember that as the carer you are part of the team, in fact you are the team leader even if you need help from your team to get through.  Writing down questions is realy useful, if you dont think you can write answers as well as listen take a tape recorder, ask the staff if they mind you recording, most don't as they know its difficult.

As for your GP, lets hope he was having an off day, to be fair to the health professionals many havent had training in how to cope with patients or families at times of bad news so they take a deep breath and just blurt out the facts.  We had an issue when paul was first diagnosed and the physio asked where Paul would like to die, he was feeling great at the time, so it was inappropriate and upset him immensely.  I contacted her by phone after she had left and explained how inappropriate this was and asked her to find someone else to care for Paul at least for a few weeks.  She accepted my comments and arranged for a different physio to visit at home and later asked if she could come back and see him.

jms

jms,

I had a run-in with my local hospice, they were out trying to get support for their midnight walk in our town centre.  I was asking why they had chosen pink t-shirts, when everyone associates pink with breast cancer (and fair play to BC advocates who so brilliantly raised its profile) when a hospice covers all cancers and other terminal illness's? I was told it was because it was bright.  I said I may join in but would have to wear grey in support of BT's as no one really notices us.

She then said "Oh you must stop by for a visit, as no doubt we will be seeing you at some point in the future".....I was so shocked and flustered at this I just replied "that would be nice" and walked away!!!!!!!!!  I kinda laugh now but it did rock me a little and she is probably right, I very probably will end up there as I know already that I don't want to die at home (unlike most I know) because I don't want my children and husband to associate the house with my death (is that silly?) - they of course do not know this yet because I don't dwell on these things.  I have a lot more living and a LOT more people to annoy yet

Love & Strength to all,

Hi Debs

I am sorry to read about your experience with an insensitive person from your hospice - it doesn't surprise me because I had a couple of experiences when we were going to our hospice.

One of the 'care' assistants said to me on two occasions that she was surprised that Steve lasted as long as he did!

You are here to stay Debs and we are all behind you in the fight to continue to annoy others haha!

Take care

Ann x