topic Re: Brain Cancer in Living with and beyond cancer

Brain Cancer

RichardSpencer — Thu, 19 Aug 2010 12:41:46 GMT

Has anyone in this group had brain cancer ?

Re: Brain Cancer

Thu, 16 Sep 2010 11:03:43 GMT

No I haven't Richard, but I do know a couple of people who have had it or are still coping with it. Once again it doesn't HAVE to be a death sentence and there are many times it can be destroyed, so if you have brain cancer don't give up, just one foot in front of the other each day and hang in there okay? 😉

Re: Brain Cancer

RichardSpencer — Tue, 28 Sep 2010 11:45:53 GMT

Hmm,maybe I should explain my situation a little bit further. It has been nearly 10 years since my last treatment so death is a remote possibility. I have some cognitive deficiencies as well as some physical ones from my treatment. I don't know any brain tumour survivors who have lived as long as I have. Most people die in the first 2 years after diagnosis. I am presently struggling with having 2 children under 5 (as do most other parents). I think that brain tumour survivors have extra problems that survivors of other cancers do not as well as the social impacts that having any cancer may cause. Treatment can affect your cognitive function, it's like having the effects of chemo brain permanently & there are very few other brain cancer survivors to talk with about their experiences. To give you a better idea of what I'm talking about have a look at the Australian Story on ABC this week. http://www.abc.net.au/austory/ The Wronged Man - Part One27/09/2010 Andrew Mallard was a young man living homeless on the streets of Perth when he was charged with the murder of Pamela Lawrence. He was convicted of her murder in 1995. He served twelve years in prison before the combined efforts of a journalist, a politician and a team of high profile lawyers – who took the case all the way to the High Court of Australia – finally saw him exonerated. Andrew Mallard is speaking out for the first time about the circumstances leading up to his wrongful imprisonment and the failure of the justice system that put him there. ----------------------- Andrew's experience resonated with many of the issues that I have faced. To live successfully in society you need your brain to be able to think & make rational decisions. In this case our justice system failed this man who clearly had a mental illness. There may well be others but he is someone who is able to tell about his story, many years after his problems started. Anyway enough ranting on, can you tell me about the experiences of the people you know who have had brain cancer and are still coping with it's effects ?

Re: Brain Cancer

Jules2 — Tue, 28 Sep 2010 20:20:44 GMT

Hi Richard That must be tough for you with having those side effects from your treatment. I have a friend who is now brain damaged from having a stroke and she has had to stop working and I highly doubt she will ever be able to return to working again. Could you get some assistance from the brain injured society? I know my friend has had some help from them and they have seem to have quite a lot of resources available. Regards Julie

Re: Brain Cancer

sarah — Tue, 28 Sep 2010 23:02:40 GMT

Hi Richard, I didn't have brain cancer but your frustration resonates with me. I have awful experiential memories of people assuming I was stupid, people talking over me, being bullied etc, etc, and general feelings of being overlooked and cast to the margins of society post cancer treatment, and beyond. To me it seemed as though I was in a jungle and it was pure and raw survival of the fittest, and I was going down. It's been really difficult. To just mention it now opens the floodgates a bit. I still struggle with terrible feelings toward my family that basically abandoned me, and the rest of the family who apparently couldn't muster up a phone call or a word of support in my general direction. To say it's difficult is just too simple a word to encapsulate the painful jumble of feelings... Anyhow, so I'm hearing you. We get on best as we can.. It brought great relief for me to read some of the experiences on this site - I now know that I'm not alone in my experiences, where before I thought it was personal, and that people (family/God/the devil) had a kind of vendetta against me... It's a good start for me. Re the ABC program, I watched this also, and could relate well to the - being out of your mind - bits and being perceived completely inaccurately. I put it down to trauma as well (as chemical effects from chemo). Personally, I've been hugely traumatised by the experience, and as much by the having to cope along the road when I was plain mental with the stress of my own survival. I am quite sure I have had several mental/emotional breakdowns during my journey. I thought I'd share with you that you may feel less alone also.

Re: Brain Cancer

Jules2 — Wed, 29 Sep 2010 01:12:46 GMT

Hi Sarah ... wow I think in some ways I could have written your post. 🙂 I get so "over it" by the processes we have to go through and the totally uneducated people we are forced to deal with. I feel like if I have to explain to one more person I am going to scream and most of that applies to non friends and family at the moment. They are a whole new ball game for the most part. The system is insanely widespread and any help that is meant to be out there is often hard to access. I had something said to me recently and it was quite crude yet accurate and I will have to think of something non crude to transalate it into to put it on this site. At the moment the ability to do that escapes me and I am sure some of it will get lost in the translation. Take care Julie

Re: Brain Cancer

matsy — Thu, 30 Sep 2010 01:26:52 GMT

Hi everyone Just to add on: great to see sharing and support here! I think what is common to us is the seeking of & getting support on this forum. Good on us all for getting online and having a shot. I share that experience of being shocked twice round when family and friends turn their back on you. The very people you thought would be there! And the added weight of a toddler to deal with. Not fun. What made it worse for me was hearing all those other cancer stories about people having wonderful support from their families and how much it helped them. Salt into the wound! So here's a pat on the back to us lot...we struggle on and our efforts are mighty. I know we have strayed off topic a bit but I'd like to say keep posting, Richard - there are lots of people out there for you, it's just the timing.

Re: Brain Cancer

sarah — Thu, 30 Sep 2010 02:23:00 GMT

"What made it worse for me was hearing all those other cancer stories about people having wonderful support from their families and how much it helped them. Salt into the wound!" Ha ha, that's funny Matsy - it's soooo true!! and, if I don't laugh, I'll cry... I felt awfully trapped with these intense and new feelings as well; they were not very comfortable feelings. I felt that if this kind of resentment, envy, or whatever, was uttered, I'd either get slammed by your inner critic, or judged by others outside who make some kind of assessment about why you have the illness in the first place... To give and example, I hated seeing all the publicity about (our dear) Kylie suffering from cancer, and how brave she was.... It was such an (insulting) contrast to my own reality, and others that I knew who were out there, whereby we couldn't make it to the shop to get basic foods, or afford a wig, let alone fly to the Bahamas for our recovery, or have the whole world sending good wishes, support and flowers!! Boo hoo, don't think I ever got flowers.... .......If I could've zipped off to some luxurious paradise, I would surely have been so very brave too!! 😉 I felt trapped as any attempt to express these feelings to 'normal' people just would've come out as unsympathetic to another persons situation, or worse. I think that our experience unveiled a new perspective on life so very suddenly, and without any graduation to give us time to adjust, resulting in a huge shock. The emotions that follow in response, are very overwhelming and confusing to deal with. And, unfortunately, it's all in one's own head only! Sadly, cannot share or compare notes with others.... only adding to the confusion and isolation 😞 Yes, that's why well done to us for getting on to this forum. Sorry, I'm a bit off-topic now too......

Re: Brain Cancer

sarah — Thu, 30 Sep 2010 02:59:18 GMT

..can I just add, I discovered along the way that feelings are apparently hardly ever logical.

Re: Brain Cancer

RichardSpencer — Thu, 30 Sep 2010 04:46:48 GMT

Thankyou Jules, The Brain Injury website explains a lot, http://www.biansw.org.au/index.php?option=com_content&view=article&id=2&Itemid=3 I fall into the Non-Traumatic Brain Injury category. They explain how the effects of a brain injury can be wide and varied depending on your personality & circumstances but the list below applies to me. Typical cognitive (thinking) changes after brain injury can include, but are not limited to: •Difficulty paying attention •Easily confused and overwhelmed •Problems in learning new information •Reduced memory for new information •Problem-solving, planning and organising difficulties •Stuck on ideas and fixed patterns of thinking •Difficulty starting activities •Slower at processing information

Re: Brain Cancer

Thu, 30 Sep 2010 05:51:10 GMT

Hi Sarah, Feelings are NEVER Logical! Emotion has little or nothing to do with logic, hence we can be terrified out of our minds over cancer just imagining the lump is malignant, only to find it isn't, but does that stop the fear? No. Even when it is cancer we are rapidly building our coffins long before, logically, we are told we are free and clear of it and need not worry too much about it returning. Then being told 'don't worry too much about it returning' every waking moment we feel it will return even tho logically we live another 60 years and it never happens. Logically we should be able to get this through not only our own heads, but everyone else's too, but can we? No because we are FEELING FEAR and logic can't stop that :-( Fear has no logic at all. sigh! wish it do have tho 🙂

Re: Brain Cancer

CarlC — Thu, 30 Sep 2010 06:31:04 GMT

Hi All, I have been reading all your comments and find them so comforting. When I originally posted I was talking I think about antidepressants. Well I am going to go on them. I am sick of my mood swings and the lethargy. I know a lot of is caused my the drugs that are shoved into your body. I just cannot deal with it anymore and I am coming up for some more ops on my face to make me look more beautiful and to also stop the saliva dribbling down my face, etc. It is so hard for others to understand the feelings you have after having gone through chemo, radio and the other operations. (I had tonsil cancer). Cheers Carl

Re: Brain Cancer

Thu, 30 Sep 2010 06:46:10 GMT

Oh Carl, I am so sorry about how you are feeling and yes, people just do not want to understand and, I learned something new a couple of days ago. I run a forum for Cancer suffers in eBay and was telling my friend about it, she said she couldn't understand how I could do it, and just make sure I don't take on the suffering myself - HUH??? I have had cancer and lost both breasts and it is a very lonely experience. Anyway, back to antidepressants. I have been taking them ever since that time and, in my experience it brings back balance in life. It isn't a sin to take antidepressants and really I do think people make far too much of it, maybe afraid that we are all mad??? I don't know, but I can tell you it will make a huge difference to your outlook on life. Go for it I say and don't worry about it. Your brain is not producing the chemicals it needs to keep you feeling normal due to all you have been through, the antidepressants will replace the missing chemicals and you will come back to being you again.

Re: Brain Cancer

sarah — Thu, 30 Sep 2010 08:09:57 GMT

I agree, CarlC, take all the help you can at this time. Your poor brain and spirit are no doubt fighting hard against bombardment from everywhere. Take this for a while and have a break - you deserve some relief; it will do some of the work for you. It may also protect from creating unhelpful connections now, that will be difficult to divert later. Most people just wont get it, no. We get it here though, you not alone.. My thoughts are going out to you......

Re: Brain Cancer

Jules2 — Thu, 30 Sep 2010 11:49:03 GMT

Totally agree with darkiescorner re feelings not being logical. :) Hey Carl ... I am another head and neck patient and thats one tough treatment to get through! Have you joined the head and neck group on this site? There are a few of us in the group that have posted and some handy hints have been put in there also. Julie

Re: Brain Cancer

Jules2 — Thu, 30 Sep 2010 12:05:49 GMT

Hi Richard That must make life tough for you. I am wondering if you are able to tap into the brain inujured society and get some assistance from them. For instance, my friend can get a gym membership paid for and someone will actually set up a program specifically for her needs. They may well offer assistance in other areas that I am not aware of. If you need anyone to find out some information for you, let me know and I will see what i can find out for you. Julie

Re: Brain Cancer

CarlC — Thu, 30 Sep 2010 23:05:15 GMT

Hi Guys, Thanks for all your responses. When I see the psychologist and psychiatrist, I think that in some ways the isolation is such a big issue. Because I had part of my tongue replaced it makes it difficult to talk. You know what you want to say but you slow all your muscles down to what you are capable of. It is difficult to socialize. When I had my treatment friends and family were sometimes there but I used to recall getting to each radiotherapy by myself. I felt abandoned. How do you deal with that?

Re: Brain Cancer

Karen_Rose — Thu, 30 Sep 2010 23:06:55 GMT

Hi CarlC I posted a reply/questions to your message under Head and Neck Cancer Patients. I would be very interested to know what they plan to do to help with your facial appearance and dribbling. I have the same horrible issues!!! Thanks Karen PS I think you are the same Carl I worked with on other projects??

Re: Brain Cancer

CarlC — Thu, 30 Sep 2010 23:17:21 GMT

HI Karen, Yes I am the same person who worked with you on the projects. We are an illustrious little group. I have been seeing consultants and RMH and they are going to rebuild my bottom lip and bottom gums. Place teeth implants into my lower jaw. They do not recommend hyperbaric treatment as my reconstructed lower jaw seems to be quite healthy. Besides there is a question mark about Hyperbaric as it can encourage cancer cells to grow. One real positive about this next phase is that I will have a gutter for saliva. There is a risk that necrosis may occur - gees if that happened I would not know what to do. I guess we are in that high risk group. 3 strikes and you.....That is the reality.

Re: Brain Cancer

Jules2 — Thu, 30 Sep 2010 23:28:06 GMT

HI Carl I would deal with as you are now and that is by reaching out to others and sharing experiences. It helps to know that others go through the same things and although most of us are on opposite sides of aus thanks to modern technology it bridges the gap very easily and quickly. When I had my radiotherapy I had to travel 200kms and basically I just stayed there for two months till it was all over. I did go home once in that time and had visitors a couple of times. Head and neck radiotherapy is very invasive and I think we all go into shock, which of course is different degrees for different people. How long is it since you finished treatment? Julie