…but part of my brain has been (temporarily) taken over by an alien creature (glioma) who has the most annoying habit of butting in on my conversation.
We have named him ‘Bob The Blob.’
In this ‘blog’ I recount my adventures with and without Bob. Below is the first ‘post’ detailing how it began back in January 2015 but if you are looking for up to date news and my current views on life with(and without) a brain tumour skip over to the blog posts (exit this and click the next menu button labelled ‘blog’ or if you want to skip to my personal favourite go here. You can also peruse the recent posts in the side menu) Alternatively, if you want information or opinion, explore the other pages in the drop down menus found at the head of the web-site. Enjoy!
First post: (Feb 2015)
As much as I have come already to enjoy Bob’s company (we are in great demand at parties and social occasions in light of Bob’s habit of making me talk in spoonerisms) I am confident that he will be banished, never to return, and this unexpected, entertaining, crazy journey will be something to laugh about and to tell my grandchildren.
I gave never done a blog before, and only this morning googled how to do it, so pardon my amateurish attempts. I hope to include latest news on my journey, and random personal opinions as they occur to me, (under the heading ‘blog’, the first of which is here and additional pages containing general information about various ‘brain blobs’ and their family members , to treatments and to things people like me have done to kindly but firmly evict such invaders from their craniums (cranii?), links to organisations and information that might help, and some research papers, and to lots of amusing and inspiring anecdotes that might encourage other sufferers to take a positive delight in sharing a short period of their lives with an unwelcome guest, including the stories of long term survivors, and yes, I mean long term as in the normal sense, not the type the oncologists will tell you about, where outliving the statistical norm (for glioma) is considered a triumph! We are aiming for far better than that!
Oh and also excuse my (Bob’s) spelling, sometimes even spell check can’t work it out and life is too short (!) to be fussy.
(First blog entry: here)
Update: for those of those who have been following the blog, you will know that Bob was removed on Tuesday 17th March 2015, (gory details here) by my lovely neurosurgeon, whom we have been calling “Nigel”. However, from now on, for better or worse, (MOST DEFINITELY BETTER) “Nigel” wishes to be known by his real name. ..Mr Puneet Plaha. (Eternal gratitude doesn’t nearly do it justice!Xxxx) so, sorry Nigel, though you may feature in some posts, and we have become quite fond of you, you need to move over for the real star.
Update July 2015: All going well. I am through radiotherapy/chemo and on to the ‘adjuvant chemo’ stage. Feeling amazing. No side effects bar a fetching bald patch, which is an opportunity for shopping hats and scarves. I see my oncologist monthly. I have decided to call her ‘Olive’ to protect her identity. She is working with ‘Nigel’ to eradicate Bob, but since Nigel has cut away as much as he wants, and gone home rejoicing, frankly, I think she has very little left to play with, and I suspect this is a great disappointment to her. Also, my buddies from the radiotherapy waiting room and I, with our healthy lifestyles, un-squashable hope, raucous laughter in the waiting room, and indomitable spirits, are unable even to give her much in the way of juicy side effects to treat. Sorry Olive.
Update Sept 2015: half way through ‘adjuvant’ chemo and six months from surgery, i have had my first follow up scan to see what my brain looks like following the treatment. And its all clear! hooray! (See blog post ” scan milestones and the story of the well stocked fridge“.) It’s only one of many scans to come but a cause for celebration nonetheless. Only 3 more rounds of chemo and I’m done. Should be all done by Christmas.
In passing, after a few ‘soap box’ moments, (coming to terms with something like this entitles you to those! See blogs: “another round of chemo over” and “oncologists please read this” to name but at couple of my rants) I am now under a different oncologists, we are calling her Bessie. I am afraid Olive wasnt able to ride the rollercoaster with us. I think we gave her vertigo! And one thing you have to be prepared to do when you have this disease is ruthlessly distance yourself from anyone who won’t or can’t share your hopes, expectations and the sheer joy at your ample glass half-full. (No offence, Olive.) Bessie on the other hand, so far, is fearless and indomitable. She seems not only happy to ride along with us but is egging us on and is totally up for all the thrills of the fair.
update Dec 2015
On 21th Dec I took my last round of chemo. I am very hopeful that this will be the last ever. The next scan is on 4th Jan and, if clear, I will just stay on regular 3 monthly scans so that if Nigel spots any suspicious areas he can go in there and scour them out, but (no offence, Nigel) I’d rather he doesn’t have to do that. I am more than happy to be a case of rare, complete, unexpected, total and long-term remission… Otherwise known as a “healed!” !
[PBTG. ? (See blog entry It is finished!)]
Update: SCAN RESULT 13/01/16 (coincidentally, the anniversary of the first symptoms appearing!) GREAT NEWS! The scan is all clear. No evidence of tumour or recurrence or any kind off problem. WOOPEEE! NO MORE CHEMO. (Blog post: “To Remission and Beyond” here )
Update: 20th April 2016 another clear scan. Feeling ‘cock-a-hoop!’ I have been without any form of treatment (apart from my diet and supplements) and the scan is unchanged, ie clear. It feels great to know that i am maintaining health without any chemo or other oncologist intervention. (Other than the lovely Bessie and her team of oncology nurses, who are totally supportive). I am now looking forward to another 3 months treatment free. (Blog post ‘scanews’ here. ) oh, and my hair is amazing: curly and piebald, like a guinea pig. Very much admired by all!
Update: 20th Aug 2016. (18 months from onset) Fit as a flea and yet another clear scan behind me! No treatment (except the healthy lifestyle etc) and no symptoms (except the odd spoonerism which am hanging onto for comedy’s sake) a AND I have been promoted to 4 monthly follow-up which means even the oncologists are starting to belive that I am, at this stage, less likely to have a recurrence. Roll on six monthly scans… yearly…. five yearly….25 yearly ………….????
Still blogging the odd rant, looks like I am going to make it to be a grumpy-old-woman after all!
28.10.16. I have updated my photo at head of this page. The other one was pre-tumor. This one was taken on my 63rd birthday 10 days ago. I prefer this one. It is how I am today: full to the brim with hope and love and gratitude (and lobster!) xxxx
Update 1st Dec 2016
Another clear scan result! Hooray! Have invented a new word – Scansgiving.: the celebrations indulged in following the short period of scanxiety leading up to a scan. The celebration starts immediately in the clinic as the result is given, and takes the form of jubilation in a variety of forms ranging from loud whoops, song and dance, lavish celebratory meals and drinks, spending sprees and a lot of texts to others who will be happy to celebrate with you. (All of the above don’t need to be done in front of the oncologist, though he or she will appreciate a taste of it) The holiday can and should last a long time but, despite all the razzamatazz should focus on thanksgiving for life and heath in a wonderful world.
Over 2 years since Bob was removed. A bit late posting this news as I was skiing! I decided it was the best antidote to ‘scanxiety’. It worked a treat – enjoying myself too much to worry about scan result, which turned out to be clear once again. Worry is always futile but not easily avoided – a little strategic distraction goes a long way!
Update May 10th 2017
Jan 31st 2018
Another clear scan! Three years since diagnosis. No recurrences, no medication of any kind, no (prescibed) treatments since origional standard surgery-radio-chemo back in March 2015. Marvellous. Feeling fit and well. Still on ketogenic diet * which I love, a load of supplements as well as heathy, organic, fresh food. ABSOLUTELY NO PROCESSED RUBBISH. Exercise – dancing, running, Yoga, hiking … not so much cycling nowadays as I have my lovely new car! (a stunning Mini convertible called Clive)and I am moving to 5 monthly scans. Life is really moving along nicely.
*Not a diet – a way of life.