Our BT Blog Buddies

Name: Deirdre Kohler

Type of Brain Tumour: Oligoastrocytoma

Grade of Brain Tumour: 2- 3

Bio: In May 2006, at the age of 30 and shortly after the birth of my 3rd child, I found out I had a low grade tumour in the left Temporal Lobe. I have seizures occasionally. The seizures are mostly complex partial. My symptoms are dizziness, inability to speak, vision disturbance and sometimes stomach cramps. In 2008, 2 years after diagnosis, I had brain surgery. My tumour was 7cmx5cmx4cm, I had headaches and couldn’t get out of bed. The doctor gave me 6 months to live if I didn’t have the surgery. After the surgery I was diagnosed with a grade 2 – 3 oligoastrocytoma. In January 2009 I had radiation and 6 months of chemo. The tumour has shrunk and remains stable. It seems to have shifted to be a grade 2. So far I am feeling good and have managed to pick my life back up. I started painting for the first time in 2006 after my diagnosis. I have had 2 exhibitions and sold quite a lot of paintings. (www.kohlerprojects.co.za) You never know how much your life can change – even for the good – when you are diagnosed with a tumour.

Blog name: Blog of a brain tumour and life

Blog link: http://kohlerprojects.blogspot.com

Name: Jackie Ng

Type of Brain Tumour: Meningioma

Bio: Hi. i m into my 11th anniversary after Craniotomy meningioma and i maintained a blog about before and after my experience with this benign brain tumour .

Blog name: Jackie's Journey

Blog link: http://www.jackie-nak.blogspot.com/

Name: Russell

Type of Brain Tumor: GBM – Glioblastoma Multiforme

Grade of Brain Tumor: IV

Bio: I am a husband, a father, and a lawyer and I have brain Cancer. Cancer can’t kill me. I was a police officer and firefighter for several years until seizures presented too many problems for that hazardous line of work and practice law full-time. I learned I had an oligodendroglioma in late 2004 and that it had mutated to a GBM in late 2007.

Blog name: RW Brain Tumor

Blog link: http://rwbraintumor.blogspot.com/

Laurie (left)

Name: Laurie Barram

Type of Brain Tumour: Oligodendroglioma

Grade of Brain Tumour: 2

Bio: In 1990 I had a Grand Mal epiliptic Seizure in my sleep. I started to take Dilantin but had another one twelve months later. The seizures slowly became more frequent throughout 1991 and 1992 and the Dilantin dose was steadily increased. In 1993 we decided to repeat all the earlier tests in an effort to find out why the epiepsy was getting worse. That time the result of an MRI scan stated “...an atypical low grade cystic Glial or neuronal tumour such as a ganglioglioma could not be excluded.” The tumour was in my right Frontal Lobe and I had surgery to remove it. The pathology testing reported that it was a benign low grade (WHO 2) astrocytoma. I had annual scans for five years. and there was no sign of recurrance so my neurologist announced that I was "cured". Thinking I had put it all behing me, I got on with my life, bushwalking, rockclimbing and doing all the outdoor things I love. Unfortunately, I had another seizure in my sleep in November 2006 and an MRI scan revealed that the tumour had grown back in the good brain tissue below the previous site. I had a second craniotomy and this time the pathology result described it as a grade 2 oligodendroglioma. A followup scan in January 2009 showed indications of a further recurrance, we waited a few months and further MRI scans showed a definite regrowth below the previous occurance and this time it was touching the Corpus Callosum. My surgeon told me that if it invaded that structure, it would become inopperable. So I had my third craniotomy in May 2009. This time we followed up the surgery with combined chemo and radiation therapy in an attempt to mop any remaining tumour cells. While in some ways I am thankful that I am fighting a low grade tumour, the second recurrance has certainly caused me to adjust my thinking about how best to live with this thing and I have found that I have not bounced back as quickly as I did after the first two craniotomies.

Blog name: Oligo-Lucky

Blog link: www.oligo-lucky.blogspot.com

Name: Chris Gulker

Type of Brain Tumour: Glioma

Grade of Brain Tumour: Grade 3

Bio: Chris Gulker has been an established company and startup executive, advisor, and investor, an advocate for open source software, a senior editor at NewsForge, columnist for London’s Independent, an Apple Computer publishing markets director, Adobe Acrobat Product Manager and founder of sfgate.com, www.examiner.com and www.gulker.com, published since 1995. Chris was diagnosed with a grade 3 Glioma in 2006.

Blog name: www.gulker.com

Blog link:

Name: Jane

Type of Brain Tumour: Low-grade glioma

Grade of Brain Tumour: 2

Bio: After being diagnosed with a low-grade brain tumour in Dec 2008 my life has changed dramatically in a lot of ways, some expected and some that have surprised me! Just wanna share some of these bits. It's up to you if you wanna have a peak at my blog

Blog Name: That's Life...

Blog Link: http://janeshann.blogspot.com/

Name: Jim Goeke-Morey

Blog: http://golfballinmybrain.blogspot.com/

Short Bio: 39 years old, married for 12 years, with 3 beautiful daughters, Junior High history teacher living in suburban Washington, DC, USA. In early summer of 2009, I started getting episodes of tingling and numbness on my right side with ringing in my right ear. It lasted no more than 60 seconds and no more than twice a day. It never got worse but never faded. My doctor had me see a neurologist who ordered an MRI. This revealed a golf ball size tumor in my left temporal lobe. In September, I had a craniotomy that removed 70% of the tumor. I recently began Chemotherapy and radiation treatment at the National Institute of Health in Bethesda, Maryland. I feel strong and am supported by a beautiful, amazing, wife and wonderful daughters, family and friends. Ironically, I had surgery to repair a ruptured achilles tendon just five days before the craniotomy. I extremely anxious to get back to cycling and running!

Name: Mark Miller

Blog name: Blogging in B Minor

Blog link: www.markmillermusic.org/blog

Short Bio: See http://www.markmillermusic.org/blog/about/

Name: Ewan

Grade of Brain Tumour: Grade 3

Blog name: Oligo crazy if I don't go crazy tonight

Blog link: http://community.macmillan.org.uk/blogs/oligo_crazy_if_i_dont_go_crazy_tonight/default.aspx

Short Bio: See HERE

Name: Chris Bradley

Name: Donna Bentley

Type of brain tumour: Recurrent Glioblastoma Multiforme

Grade of brain tumour: IV

Short bio: Married to Julian; British - moved to Australia in 2000; First tumour: July 2005; Second tumour: October 2008; Third tumour: September 2009; Fourth tumour: October 2009; Still fighting; Using avastin every 2 weeks - very expensive!

Blog Name: TransitionbyDonna

Name: Andrea Garramone

Type of brain tumour: anaplastic astrocytoma.

Treatment: Awake craniotomy 11/24, currently undergoing radiation treatment NOT CHEMO

Age: 28

Location: dallas, tx usa

Name of blog: "We're going to make this cancer sorry it messed with me!!!"

http://tumorrific.blogspot.com/

Purpose: I wanted to write a blog about the feelings and not just treatment let the people know it is normal. Also: bring brain cancer awareness UP!!!

Name: Mark and Steve (aka Bobbie and Enid)

Type of Brain Tumour: Glioblastoma Multiforme

Grade of Brain Tumour: 4

Bio: Steve (pictured left) had surgery on the 22nd September 2010 and, was given the results on the 29th September that he has a Glioblastoma Multiforme. Like anyone given this diagnosis, both Steve and his husband Mark were completely shell shocked, but, reading their blog you get a sense of the amazing outlook they have adopted. Their blog shares their great humour, love, tears and now a wonderful collection of hats!

Blog name: Trouble Blogging

Blog link: http://troubleblogging.blogspot.com

** Sadly, Steve passed away on 15th June 2011. We will continue to include his blog in our 'Blog Buddies' as long as it is online as it provides a very honest insight into the life of someone battling a high grade brain tumour.**

My blog details the journey of my grandson that was diagnosed with a brain
tumor last year.

Here are the details:

Name: Asher Reynolds

Website name: A prayer for Asher

Website url: http://aprayerforasher.blogspot.com

Tumor: Extraskeletal myxoid chondrosarcoma

Ashers story:
Asher was diagnosed with a Malignant brain tumor on October 5th, 2009 at the
age of 11 months. He underwent brain surgery 4 days later at Childrens
Hospital in Oklahoma City. The surgeon was able to remove the whole tumor.
After a week it was diagnosed to be a Extraskeletal myxoid chondrosarcoma
tumor. The doctors researched and did not find anyone with that type of
tumor in the brain in a baby. This is a highly aggressive fast growing
tumor. So they just had to guess on treatment. They know from studies that
this type of tumor is resistant to chemo. We were told that they were
worried that some cancer cells were left in his little brain and suggested
proton radiation. Asher underwent 7 weeks of proton radiation at MPRI in
Indiana. So far all his MRI scans have been clear. He is on a 3 month MRI
schedule at this point.

Link to the blog: http://bouncybean.blogspot.com

A little about me:

My wife Jane was diagnosed with a diffuse Astrocytoma in 2005 and had
surgery 4 months later. After years of living without trouble and
forgetting about it, the tumour returned in 2008. Subsequent
radiotherapy and chemotherapy kept it at bay until August 2010. For 10
days, Jane was in a hospice but in October she was home again. A big
dose of steroids improved her situation. We were able to go on a few
short trips in Europe and have a great time together.

She is now getting more and more ill again and I am caring for her at
home. One of the first things to be affected by the tumour was her
Cognitive functions. She is mostly confused, struggles to voice her
thoughts and is generally slow.

** Sadly, Jane passed away 2011. We will continue to include her blog in our 'Blog Buddies' as long as it is online as it provides a very honest insight into the life of someone battling a brain tumour.**

Name: Heather Taylor-Nicholson

Tumour Type: - Petrous Meningioma

Grade: 1 ('benign')

Bio - I'm a 50 year old who was diagnosed with having a 'benign' meningioma last year (Nov 5th 2010) during investigations for vertigo that had caused me to collapse at work in April 2010. I have been told that this is only 'incidental' and not the cause for the vertigo by an ENT surgeon. However, no other diagnosis has been offered apart from 'poor vestibular return' and the only treatment apart from the 'Epley' given by my GP to ease the more acute symptoms, was a booklet on vestibular exercises as I still feel unsteady and have mild balance issues.

Sadly though, whatever the cause I have lost my job as a Staff Nurse at our local hospital as I am not fit nor safe enough to work in any clinical areas, and have subsequently had to let my registration lapse as for the same reasons. I am currently unemployed and hoping to God I can get my NHS pension early on grounds of ill health, otherwise I lose my home. Right now I am going through the nightmare of having to deal with benefits claims etc which is not fun as most of you here will know.

I'm not sure what it is my blog can add but I hope it will be insightful to those who read it and who do not mind a cynical 50 year old ex-healthcare professional having a major rant..LOL!! I also run a Facebook page called 'Cornwall Headliners Brain Tumour Support Page' as there is nothing in Cornwall in the way of lcoal support groups. I feel that we are the 'forgotten' county in terms of support and treatment options, espcially with aftercare and support for those recovering from treatment. However please feel free to visit and share your experiences.

Blog Name - Meningiomaheadstart

URL - http://www.meningiomaheadstart.blogspot.com/

Name: Heather Roberts

Type of Brain Tumour: Anaplastic Astrocytoma

Grade of Brain Tumour: 3

A little about you: Heather (now 32) was diagnosed with brain cancer Grade 3: Anaplastic Astrocytoma in April 2008; and on April 24, 2008, she had her first of two surgeries to retract her tumor; her second surgery was June 12, 2008. Even though both surgeries were considered successful, the entire tumor could not be retracted. She completed 6 weeks of radiation with low dose Temador and then completed 11 months of high dose Temador.  After 11 months, her body said, “No more!” Her left side shows some deficit, but she is able to work and lead a mostly normal life.  She now travels to the University of California at San Francisco Medical Center (UCSF) to see Dr. Susan Chang every four months for her check-ups. She will be closely monitored for any changes for the rest of her life.  The past three years have brought many challenges: Heather lost a grandfather (2009) and a grandmother (2010).  Her 3-1/2 year relationship with her fiancée ended as her grandmother’s health was declining, and she was forced to call off her wedding in 2010.  Then later that year, she was diagnosed with Graves disease, which is now under control.  However, through all of this, Heather remains upbeat, positive, and thankful for so much. 

Blog name: Heather’s Journey

Blog link: leapforacure.org

Picture: Heather is in the middle.  Her two sisters, Michele (L) and Amy (R) stand with her.

Name: John Vang

Type of Brain Tumour: Oligoastrocytoma

Grade of Brain Tumour: Grade II

A little about you: Hello, I am a 34 year old male living in California. A CT scan in February of 2011 revealed a 3 cm-wide "dark spot" in my right Medial temporal parietal lobe. An MRI confirmed it most likely to be a tumor. Had a Needle biopsy which was inconclusive and ended up having a craniotomy in August which diagnosed the tumor to be a grade II oligoastrocytoma. The craniotomy removed about 80% of the tumor with the remaining 20% too closely wrapped around an artery to risk removing. Opted for radiation therapy (December 2011 to January 2012) to treat this remaining 20%. 

Going through this experience, I've found connecting with others (either through direct communication or reading blogs) to be reassuring and comforting and I started my blog in hopes that someone who is also unfortunately sharing the same experience might find some level of reassurance and comfort in it as well.   

Blog name: My Life With a Brain Tumor

Blog link: http://havnot.blogspot.com/

Name: Jennifer K. Giliberto

Type of Brain Tumour: An Infultrating Grade II Astrocytoma was removed from my right temporal lobe

Bio: Wife to Paul and mother to three children and three rescue dogs. I’m also an advocate, volunteer and Domestic Goddess (I jest) of everything in-between in a place I fondly refer to as “crazyland”.

Oh, yeah… there’s this: I’ve got a brain tumor. Well, let’s be honest…shit happens and it could be worse.

Blog name: Grey Matter Life

Blog link: www.greymatterlife.com

Name: Jen Crowley Searle

Type of Brain Tumour: Oligodendroglioma

Grade of Brain Tumour: Grade II

Bio:

My name is Jen, and this is the journey of living the gift of life with my husband Mike and our 3 sons, while I also battle brain cancer.  Some days are good, some days are not so good, but all days are a blessing.  I promise to be open – sometimes painfully (sorry).  But this journey is all about trying to document this for my children, for being cheap therapy for me, and for hopefully helping a few others who might be going through something difficult in their own lives.  So come on in, pull up a chair and put your feet up.

Name: Lucy Cunnington

Type of Brain Tumour:

Grade of Brain Tumour:

Bio:

As of yesterday, 18th November 2011, I was told I have a brain tumour for the second time. THe first time was back in 2006, when I was halfway through my PGCE course. I came to a conclusion that higher education and I do not go well together. In 2001, I was in the final year of my English degree when I was hit by a car in a hit and run asccidet which nearly cost me my life, and left me permently disabled. I had to take a year out of my degree cours, was in hospital for 4 months, and spent about 10 months learning how to walk again and wondering why the UK wasn't more wheelchair friendly! So then I was faced with postponing my PGCE too!

Statistically if you've had a brain tumour (BT) you are more likely to have a reocurrance eventually, than never at all, so I always knew it was likely. Then literally two days after I got back from Taiwan, I had my first seizure in five years, recognising the symptoms I phoned the hospital and following scans had my suspisions confirmed.

I have decided to write this as I found last time a lot of friends couldn't handle it and didn't know what to say, so hopefully this will bridge the gap. I don't feel ill at the moment and my lovely doctor has given me some snti-seizure drugs to make life more comfortable. I will Be updating this regularly. I am also asking people to make donations to BT buddies- a great charity that supports, sufferers, survivors and their friends and families. please go to my just giving page: Lucy Cunnington is fundraising for BT Buddies

Blog name: Statistic of One

Blog link: http://statisticof1.blogspot.com/