We Talk Brain Tumours

Hi Jill

Have just read your blog. You write so well. If you aren't a writer of some sort by profession then you should be! I will continue to follow your blog and your story as it unfolds with interest.

My husband passed away in February of this year. He was diagnosed with a GBM IV in May last year. He was diagnosed at a very very late stage when it was inoperable so not like your situation at all. There was a time when I would have killed to hear the phrase 'We're going to operate' so you must take the positives where you can find them.

'One day at a time' is a cliche I know but, in this situation, it really is something you should train yourself to do if you are going to avoid madness. The future is a very scary place and, by the time you get there, you are going to be a completely different person anyway so it is pointless to try to anticipate how it is going to be. I used to wake each day and try to think of one positive thing I could do for Tony. I tried to focus on making some lovely memories. It didn't always work. Sometimes it was quite the opposite but it gave me a focus and a lifeboat on which to cling.

I now wished I'd started a blog at the beginning, like you, as it would have made communicating with people so much easier as they could just click on the blog and catch up without me sending individual emails, texts or phoning me on my mobile. There was a time when I felt like Tony's carer/secretary rather than his wife. So many friends, work colleagues, family, wanted updates all the time. So you may find other reasons to be glad you started the blog that aren't yet apparent.

The only caveat I would make is that you shouldn't put yourself under too much pressure to be lighthearted and witty all of the time. There may be times when keeping other people entertained is the last thing you need and you should feel comfortable saying just that too. Also, at times, other people's lighthearted blog comments may feel insensitive if they don't really know what's going on behind the scenes. But you know what you feel comfortable writing, you know the people reading it and you can judge, all I wanted to say is try not to take on the responsibility for the emotions of your blog readers. They're almost certainly able to stop reading if they don't want to continue on your journey with you. When the end was close for Tony we sent out an email to everybody telling them exactly how it felt to be in our position. We were brutally honest and, in return, we received the most amazing responses, many of which I read now when I want to remind myself of the positive things that happened on our journey. So don't be scared to tell the truth either, you may be pleasantly surprised by the responses you get!

Well, I'm so glad you found WTBT. I say it regularly but it really did keep me sane through some mental times! The people on here are wonderful, caring, supportive and so full of knowledge. People who can provide you with some real pearls of wisdom just when you need it most. 

I know some of us have gravitated on to our little Facebook page but that really is mostly people who are on the other side of this journey and I'm not sure that is where I would want to be at this early stage in the journey. I took much comfort from speaking to people on the Mac forum WTBT who were at the same stage as me in the journey. Travelling with others can be so helpful in terms of making you feel that you aren't alone. I also think that there are many people who do not feel confident enough to write anything themselves and are more comfortable just reading. If we all moved to Facebook then those poor people will have nothing to help them through. Just a thought.

Take care and keep on blogging.

Pam

x

Hi Pam and Cathi,

Thanks for your messages. I'm a software developer but I do enjoy writing. I know just what you mean about the communication responsibilities of being with someone with a serious illness. I am already feeling it is too much, even after 3 weeks. That's part of the reason why I started the blog. I keep family and close friends updated by phone and email but everyone else can choose to update themselves by reading it, if they choose to.

I don't want it to be relentlessly grim, hence the outburts of humour, but I know it will be very serious at times. You're right that people won't read it if they don't want to and that doesn't bother me.

I'm quite scared about the surgery but also glad that it's happening and happening now. We will deal with what comes next - what other choice is there?

Jillx

Hi Jill Sorry to hear about your boyfriend. Just wanted to say, my husband was diagnosed with a frontal lobe anaplastic oligodendroglioma eight years ago and is very much still with us. He had two lots of surgery then radiotherapy but was able to go back to work and cope with his job for a number of years before retiring.

Our consultant at the beginning told us that the prognosis for oligodendroglioma is more favourable than other BTs, and that has certainly proved to be the case

Try not to worry too much about what might happen in the future. We just take it a day at a time. Oh, and we're getting through the bucket list great style, off on our first cruise next week!!

All the best to you both

Felixthecat

It is so lovely to read positive stories on this forum. It was absolutely wonderful to read yours. I love that you're working through your bucket list. Good for you!

Enjoy your cruise and if it's anything like the cruise I went on you might want to take some expanding pants! The food on offer is usually amazing and continuous!

Love to everyone on here.

Pam

x

Anne-

You are in exactly the same place as me at the moment. That is what has happened to Steve. Steve has had exactly the same experience and he has just completed his first cycle of chemo.

Thinking of you so very very much. xxxxx

Hi to everyone, I haven't posted for a while as it has been a busy time, We celebrated our silver wedding anniversary last weekend  with a party, which our two beautiful daughters did us proud arranging.  It was lovely catching up with family and friends and Doug did well coping with all the excitement..

Today started well, we had Doug's brother and wife staying for the weekend and were out soaking up the party atmosphere awaiting the Olympic Torch. Whilst queuing for ice-creams, Doug suffered a seizure, he has suffered a few of these in the past, but I mention this one as it lasted much longer and he lost conciousness for a time, fortunately St Johns Ambulance were there and were very helpful and advised us to go A&E as it was taking him longer to recover, So you can imagine how long we spent there, but Doug is now at home tucked up in bed exhausted, nothing changed at the hospital as we have an oncology appointment on Friday.

To Jill - sorry you have had to join us heer, as Pam stated, take some comfort that they are able to operate, it was also much to late for Doug, who was only able to have a biopsy, but I remember all to clearly how scary that was. Best wishes to you both through this difficult time.

Felixthecat- hope you have a fabulous cruise, we have happy memories of our last cruise, just  a year ago, before we started on this bumpy journey, enjoy!!

To one and all, thanks for being there

Sue 

Hi I am Debbie......

We found out on the 29th Feb 2012 that my husband Peter has a Glioma Astrocytoma grade 4.

This was after Peter had been having odd symptoms for a few weeks! Pressure in his ear...balance issues and then sight disturbance. We thought at first it was a sinus infection and went to the Dr and got antibiotics.....then a few days later we went to the hospital and Peter had his ears cleared of wax!!! Still no better.....eventually we ended up at the GP's again this time asking him to refer Peter to a neurologist as things just were not right. Anyway we met with him....had an MRI and 5 days later we were told the news.

I don't need to tell any of you but that day our lives changed!! We went off to Oxford the next day to meet the surgeon...Peter had the unwanted intruder removed the following week.

Now we are in final stages of radiotherapy....today is day 27!! Peter has done so well with all this treatment including the chemotherapy every day. He has managed to continue riding his bike and keeping fit as well as getting his rest.

I have no idea how we are going to travel this road....but I am trying to take each day as it comes.

Peter is 56 now and we retired when he was 50 to travel and have fun......Thank God we had 5 years of doing all the stuff we love!

Peter does not know I have found this site as he is not interested in reading or knowing anything about his Glioma.....He just feels it is his journey and it will be different for him!! 

Thank you all for sharing your stories on here it has helped me already!!!

Debbie x

Hi Debbie, so pleased you found the site, but sorry you had to!

My son has an Astrocytoma grade 3 and was able to have surgery followed by radiotherapy. That was over 8 years ago, but he has had a recurrence and just finished chemo. We are waiting for MRI which is due June 8th and will know more then.

Just as every tumour is different, so everyones way of coping is different, as is everyone journey. You have to find the way that suits you best. I find talking about it helps, but I know my husband doesn't, so thats why this site is a Godsend.

It sounds as if Peter is coping well with his new regime, please don't tell me he cycles to radiotherapy!
Speak to you soon
Kathy xxx

Hi Kathy.....

No he does not cycle to his treatment but he has been going for a 6 mile bike ride everyday (weather permitting) after treatment.....however last week when he got to number 24 he was just to tired!!! I have talked him into waiting till next week now. His last radiotherapy is tomorrow....So glad that is over for him.

We are both looking forward to the 4 week break now. 

Your Son sounds like he has done very well for 8 years. I only hope he gets good results from his MRI. During the years he has been well, has he had MRI's to check him now and again? As this is all new to me I am not sure what the follow up is like.

Thank you for writing to me I really appreciate it.

xx

Hi Debbie, from another Debbie!

My dad had all his treatment back at the very beginning of 2011 and he is doing very well, no regrowth so far (touch wood). He took part in a drugs trial for Avastin (bevacizumab) for 16 months, but was taken off it a few weeks ago because he was showing symptoms of a mini-stroke, which the consultant thinks was caused by the drug. Apart from a weakness on his right side and some speech muddling, he is living a pretty normal life, which is more than we dared dream about in those frightening early days after diagnosis. Feel free to click on my name to read our journey so far.

He has started speech therapy so hopefully that will not only improve his speech, but also give him a psychological boost, that the doctors think he's worth rehabilitating!

Your hubby sounds marvellous, his fitness could well be the key to him beating this disease and beating the dreadful statistics of it - I know my dad was relatively fit before he was diagnosed, he used to go running once or twice a week, and I'm sure this helped him deal with the harsh treatment regime.

Anyway, wishing you both well.

Sending my love and thoughts to everyone else here who is on a difficult road at the moment.

Debbie W xxxx