On last week’s Croydon Radio, we talked about long-term fatigue and how fatigue can be hard for many people long after treatment. To listen again click here PODCAST
This week we talked about “Are you the same person you were before your brain tumour arrived”. We also interviewed Helen Bulbeck from Brainstrust which is our Charity of the month.
We looked at #BrainTumorThursday TWEETS. You can find me on @braintumoraunty or you can find @croydonradio to see what other shows are up to. If you missed us listen again on the PODCAST
This week I talked about feeling guilty that you may not be the same person as you were before?
I asked people on the Facebook and Twitter Pages how they felt:
“YYes i feel this guilt when i m alone . But my family and friends are very supportive”
“Yes i didn’t know as didn’t remember, my mum told me . haven’t a clue what i was like before, i just remember i was happier before, as now everything is difficult and like climbing a mountain everyday”
“I feel awful…..sometimes I just don’t understand why my family don’t understand me and why I do certain things etc I feel sad and upset at the moment about something that I recently did without knowing I was doing the ‘wrong thing’. I thought I was doing the right thing……. I hate having this nasty horrible troublesome tumour in my brain…….. it causes nothing but upset and heartache”
“Never will be the same person. How can you be when you have had a large portion of your brain removed? My residuals are so minor compared to others, but they are there. Noises bother me, especially if there is too much auditory overload. I seem to go from nice mom to whoa in a flash sometimes. I’m tired alot… the list goes on and on. But when you compare it with not being here, or not having all my faculties it seems minor, so then the guilt sets in. But I’m also tired of being dizzy, of being tired, and feeling these other symptoms. You get by day by day. There is no other way. Be thankful for what you have and try not to focus on what you have lost or acquired that is negative from this disease.”
“As the parent of a survivor, I know my daughter and myself have been changed. Her personality is mainly the same as before surgery, but does have minor learning deficits now. She also gets frustrated more easily than before. Honestly, I get more frustrated easily too”.
“Yes, I feel very guilty that I can’t be the mom I was before and that it puts so much stress on my families shoulders”
“I initially felt guilty that I am still alive when others do not make it, I now understand this ‘survivors guilt’ is not uncommon. Now I feel guilty when I shout and lose my temper, I used to be so calm!”
“I am just so tired all of the time. I have gone from working full time since leaving school to not working at all which frustrates the hell out of me ! I have become numb to a lot of emotions since I’ve had this . I can’t cry at all I snap at people for the slightest thing and I’m easily offended. I am seeing a psychologist who is great and has helped me a lot”.
“That is the hardest part for me. It changed my life completely and some times, not for the better. I worked hard, did everything right, college, law school, working as a Director for a prof association after 30+ yrs of working. Now, I have been unable to work for the past 5 yrs. I even said to the neurosurgeon after about 3 yrs, I want my life back! His response was that I should get used to life as it was now. Devastating. However, I know there are lots of people with much worse circumstances. I have been trying to do what I can. The largest issue is that I never know when my head is going to cooperate with a planned function – headaches are a daily constant occurrence, sometimes worse, sometimes less. I keep trying to do what I can”.
“I appreciate life much more than I did prior to having a brain tumour. It made me realise that money and having a successful career isn’t everything. I have had four stage 4 tumours (right parietal/occipital PNET) removed over the past 5 years. I’m currently on a second course of radiotherapy in a last ditch attempt to get the tumour under control. The thing I miss the most is not having to worry about cancer.
In March it will be 6 years since my initial diagnosis. There hasn’t been a day since when I haven’t thought about brain cancer.”
Always refer to your GP before taking any action
Other resources talked about are here with links:
Can Your Personality Change after Brain Surgery? Posted by: Juliette Siegfried in Patient Experience
What Causes Personality Changes
The size of the tumor
Type of tumor
Side effects of Neurosurgery
Coping With Personality and Behavioural Changes – Edythe Vassall
After diagnosis and treatment for a brain tumor, a person often may not be the same. Changes in behaviour and thinking occur in the majority of patients at some point during their treatment. The extent of changes can vary considerably from person to person. Changes can be as subtle as mild forgetfulness or as dramatic as deep depression or abusive, violent outbursts. This article will look at the reasons why behavioural and personality changes occur, and what patients and caregivers can do to cope with them.
What causes behavioural and personality changes?
- Frontal lobe: Movement, intelligence, reasoning, behaviour, memory, personality, planning, decision making, judgment, initiative, inhibition, mood
- Temporal lobe: Speech, behaviour, memory, hearing, vision, emotions
- Pituitary gland: Hormones, growth, fertility
- Parietal lobe: Intelligence, reasoning, telling right from left, language, sensation, reading
- Occipital lobe: Vision
- Cerebellum: Balance, coordination, fine muscle control
- Brain stem: Breathing, blood pressure, heartbeat, swallowing
Treatment side effects
Side effects of medications
Identify and manage the changes
Complications of memory loss
Dealing with depression and fatigue
Confusion and disorientation
Aggressive or combative behaviour
Using teamwork to cope
This article was reprinted with permission from Search, Issue #57 (Summer 2003). For more information, contact the National Brain Tumor Foundation at 800.934.2873 or visit www.braintumor.org.
Motivational Keynote Speaker, Coach, Author – Jay Platt
What Having a Brain Tumor Has Taught Me
1) Bad things sometime happen to good people. Sure, you might be a positive person. You might help others. You might do a lot of wonderful things. But, none of that will keep you from having to face adversity. It’s just part of life. Remember that and deal with it.
2) That which does not kill you makes you stronger. Maybe not physically, but certainly mentally, emotionally and spiritually. You must be open to the lessons that adversity is trying to teach you though. If you do learn them, you’ll be stronger as a result.
3) It could always be worse. As bad as things may seem at the time, they could always be worse. In my case for instance, if I had gotten a VHL diagnosis fifty years ago, things would have been much different. Or, if I had not been blessed to be born in the United States. Or… well, you get the idea.
4) Your attitude makes a huge difference. While it certainly takes a lot more than just a positive attitude for many things in life, your attitude really does make a big difference when it comes down to your overcoming the difficulties of life or not.
5) Prepare now. Since you don’t know when adversity will strike, it’s important to be preparing yourself now. If not, it would be like getting ready for a hurricane when it is bearing down on you. It’s too late then. Maybe you can’t predict, but you can prepare.
For more by Jay Platt, click here.
Aunty M Brain Tumour Charity of the Month – January 2014,
Brainstrust: Interview with Helen Bulbeck – Director of services:
It was lovely to have our guest Helen Bulbeck from Brainstrust. Talking about “The way we grow relationships with our community is important”
Helen’s Daughter was diagnosed with a brain tumour in 2004 and after Helen’s own struggle to find support, from the information available at the time, Brainstrust was set up, to really give a voice to the patients. We talked about:
- How Brainstrust was set up
- Brainstrust Groups and MeetUps
- Supporting 1500 families in the UK, at present
- Online and face to face support
- Community Page
- Brainstrust Hub – a database of brain tumour organisations and groups
- Travel Insurance
- Going forward for 2014 – Patient guide, first port of call for brain tumour patients.
- Patient Guide – for clinicians, nurses, carers
- Patient voice
- Research on Fatigue
Join Brainstrust on Monday 24 February to Sunday 2 March 2014
Activities and tips include:
Tea parties at home and work, doing the office tea round for a day,
competition for the most funds raised, tea drinking competitions, tea cosy hats,
merchandise, scone and cake baking.
Join the conversation, and share what you’re up to with #TEAFEST
Share the posters, and collect sponsorship for your activities