We are Macmillan. Cancer Support
Here's a quick summary of my situation. My husband was diagnosed with GBM stage IV in early November 2012 ; mid-November he had successful surgery, and a course of radiotherapy and chemo is due to start soon. As you will understand, our lives have been turned upside down in this very short time, but we are trying to keep as positive as we can and there is lots of love and support from friends and family.
So - why the title of this discussion? My husband has, very wisely (and for practical reasons - he's been in and out of hospital for the last few weeks) kept away from the Internet and looking up endless 'information' and has thereby avoiding finding the 'doom and gloom' statistics about GBM!. He has focussed instead on the information from the doctors, making it clear he did not want to know 'prognosis' sort of details. His aim is to focus on one thing at a time - recovery from surgery, regaining physical strength, nutrition, sorting out work matters etc. And he's doing brilliantly so far!
I, on the other hand, have researched all kinds of things, depressed myself with the 'stats' about GBM, and have also clung on to the long-term survivor 'stories of hope' out there (including Servan-Schreiber's, of course). BUT...... I am wondering if this is the best way to go about things? I have this 'burden' of information about prognosis... but then. that's all it is - information about what has happened in the past to other people with a similar condition. Why would I want to crush his optimism? What would it achieve? There is nothing to stop him finding out more, if he wanted to, and I do respect his way of coping although sometimes feel as if I am hiding something from him, strange as this may sound. Is there a 'best' way to go about things....or are we all just getting through this cancer stuff as best we can?
Any thoughts welcome, especially if perhaps you have been in a similar situation yourself.
Hi Elrick and thank you so much for your reply - it is helpful for me. I am trying to discreetly manage things so that we are not making any big decisions too far ahead. Your husband's stoicism and humour and spirit will be of great help and I do have a huge trust in our own bodies' ability to sort things out too... and it's interesting what you say about clinical trials. I've been reading about a drug used to help alcoholics which makes the chemo work better - not sure what stage this research is at but it sounds interesting.
I will be thinking of you and your family with positive thoughts and support.
I am a few months on from your husband - I was diagnosed with a left frontal lobe GBM IV and operated on in August 2012 and underwent 6 weeks of chemoradiotherapy during October. I have just finished the first of 6 monthly chemotherapy treatments, which went quite well - I was tired and had to sleep during the day, mild nausea, but nothing too horrible - I am 4 days on from the treatment and I feel as right as rain.
Like your husband I have focussed on getting well and healthy, primarily so that my body is better equipped to withstand the rigours of chemo and radiation. So far so good.
Unlike your husband I have done lots of research, like you scaring myself silly for a while, then coming to terms with what is, it has to be said, a terrible illness.
You know your husband better than probably anyone else. The question I would ask myself in your situation is: Is he getting on with the day to day business of fighting the illness - does he know what are the right foods to eat, does he exercise, is he maintaining a positive frame of mind?
Or is he actually in denial of what is happening to him? Is he hiding (or showing) a state of fear, worry, anxiety?
If you think the first applies to your husband then I would let him be - he's coping well. If the second then something might need to be done - fear, stress and anxiety are proven to weaken the immune system and render the body less able to fight the tumour. What needs to be done is a different question.
I know that my wife has worried that I am in denial because I have been upbeat and positive about life since the diagnosis - but it's been such a relief to stop having headaches, to know what's going on in my body and finding things that I can do to fight back. Then I have an off day and she is relieved that I am showing signs of distress (weird how things change - used to be my wife worried when I cried!).
The anticancer book is great. I'm also ensuring that I do some exercise each day (usually yoga and walking), I've taken to having juices every morning (beetroot, berries, pomegranate, ginger for example), a teaspoonful of turmeric with black pepper, little or no dairy except for probiotic yoghurt, minimal amounts of red meat (except lean organic stuff), gallons of high quality Sencha green tea (now I have to go to pee in the middle of each night!), NO sugar or white flour. All this in response to books such as AntiCancer. (another good one is Beating Cancer with Nutrition by Patrcik Quillan, though this one is not as brain tumour specific).
I've also gotten into meditation, which helps calm my mind and keep me present in the moment.
In any case, I wish you and your husband a calm and happy xmas with a minimum of fuss and bother!
Hi Simon... thanks for your reply - I think I've seen posts elsewhere on the forum from you before I joined. I would not say he is denial... just keeping a safe distance from 'the edge' (and the little booklets Macmillan kindly gave us), focussing on health (he has some weakness after the surgery which is not really back to normal yet) and allowing me to run around and fuss over him.
He's applied for Disabled Living Allowance, and there was a rather tricky moment where they (ie Macmillan staff who were helping to complete the form) were trying to explain that you automatically get the 'care' component of the allowance with 'this type of tumour' (ie because of the unfavourable prognosis!) but we managed not to dwell on that, and are just grateful that we'll get some funds coming in!
There is always room to 'ramp things up' on the nutrition front, isn't there.... we do the turmeric & black pepper and the green tea (apparently, Japanese green tea has the max amount of cancer-fighters... is your Sencha japanese?). Trying to cut down on sugar but it seems to be everywhere --- even 'healthy' breakfast cereal----- and getting through more veg and fruit than before.
I look forward to hearing how your next rounds of chemo go... I guess this is the 'gold standard' Temodar or similar?
All the best to you & all other readers here
First of all, I am so sorry to hear of your husband's illness and I know the roller coaster of emotions you must be going through. I think your penultimate sentence sums it all up perfectly - we get through this cancer stuff as best we can. I have learnt that there is no such thing as a 'typical' situation with this type of cancer and everyone responds differently even to the same treatment.
My husband was diagnosed with GBM Stage 4 in July 2007. He was given the usual prognosis of 1-2 years but has now survived almost five and a half years. For the past year he has become quite weak, needs a wheelchair and his cognitive functions are deteriorating (he finds trouble using the computer, turning on TV, following conversations etc) BUT he is still with us and has the same witty sense of humour. He needs full time care so I had to give up my career but we have found this a very special time together and each day is precious.
We had far too much advice from well meaning friends who thought his cancer could be cured or halted by taking up a vegan diet, crystals, special supplements. John recoiled from all this and just wanted to eat what gave him pleasure. For the past 5 years his diet after his chemo (no fish, cheese, eggs, vegetables or salads at all! Lots of red meat, chips and red wine!), would probably shock most people but it certainly hasn't impeded his survival.
I do think you have to respect your husband's way of coping although difficult for you I'm sure. To you he may seem 'falsely optimistic' but you honestly never know. My husband was hugely optimistic right from the beginning (although he did know about the prognosis) and to this day he is almost always cheerful and grateful for the life he has. When he was diagnosed we had no grandchildren - now we have 3 with another one due any minute.
No one has the 'right answer' to the 'right' way to behave or deal with this. Taking each day as it comes and looking forward to the future with enjoyable things planned seems to help us. We also both have a strong Christian faith which is a significant factor in the way we feel about life and death.
I'm not sure if this helps but do remember there are quite a few others who are long term survivors but no-one has heard of them!
My thoughts and prayers are with you both.
Wishing you comfort and peace.
DLA - I didn't realise I might be eligible for that! Will look into it.
Green Tea - yes Japanese.
Sugar - I've been buying Agave Nectar in bulk packs from Amazon - works out a lot cheaper than getting it from the supermarket. Also been substituting honey and brown sugar instead of white.
Yes Temodar it is - not too bad as I can take it at home. I love the way they call it the Gold Standard. Dammit! Where's the Platinum Standard? ;-)
Hope your husband' weakness strengthens up soon. He's lucky to have a caring wife - make sure you look after yourself as well (I'm sure plenty of people have told you how important it is that the carer looks after themselves equally)...
Dear BlossomC - thanks so much for your reply and yes, it is helpful. Sorry to hear your husband has those symptoms (though sounds like he's doing really great otherwise). I hope it's OK for me to ask-- is his current state of health somehow related to long-term effects of treatment (eg radiation therapy) or the GBM tumour itself? Don't feel you have to go into any detail if you'd rather not..
Has grandchild No 4 appeared yet?! Congratulations in advance :-)
If you have any questions about our organisation our Macmillan team would love to hear from you
You can also follow us on Facebook, Twitter, Flickr or YouTube.
© Macmillan Cancer Support 2010
what are these?