My partner Martin was diagnosed with this horrible desease on june 19th 2008. I am so scared of this monster of a disease, why does it happen, where does it come from? Cant we find a cure? please God find one soon. There are htousands of new cases every year why cant we save these peoples lifes from this horrible disease.
Im so so sorry to read of Stephen's passing - there's nothing anyone can say to take away your pain but he is now free from this illness and at peace. Sending you much love and strength. Lesley xxx
I have been reading this forum for a few days - I have learnt a lot and cried quite a lot too. Julie - I only read your profile last night so was so sad to read your message this morning. My heart goes out to you.
I don't quite know what to say yet, other than that my mum has GBM4 and i'm devastated. She seems so well now that it is impossible to believe. I suppose I'm looking for a little support, understanding and distraction. Most of my friends have been great, but either it's impossible to understand or it's too painful (unfortunately cancer has touched several of their lives too) I don't want to lean on my parents cos I want to be strong for them, not another thing for them to worry about.
Just wanted to introduce myself. From what I've read everyone has such different experiences of this awful illness and so many of you keep you spirits up - it's amazing.
It seems I turn my back for a few brief days or weeks and there is more sad news waiting for me when I 'pop in'. Lesley and Julie: my heart goes out to you both in your loss. I hope this site and friends you have made continue to give you strength for the coming weeks and months.
For those of you who will remember me (and my darling Roger), as you know this year started off with a premature return from a camper trip to France and Spain. Just days after our return Roger was diagnosed with further blood clots - this time to the right calf, thigh and with break-off clots to the right lung, followed by onset of pneumonia 3 days later. He recovered well by end of February, although wheelchair bound for some time. By end of March we were both wondering what all the fuss had been about ............... funny how you forget the really worst of worst times when there's a bit of 'uplift' round the corner!! Roger had made a remarkable recovery from the pneumonia and been stabilised with further, higher dose of Clexane anti-coagulant injections. We then had a 'honeymoon' period between end of March and end of May.......................we saw our first grandchild, a precious grandson, Samuel.................born on 29th March (no one expected Roger to be here for that event).........then on 24th April we renewed our Wedding Vows at Jesus College, Cambridge, with our dear family and close friends. We followed this with a trip to Roger's favourite place: Assos in Kefalonia where we stayed for a blissful, uneventful week. We then pushed our luck even further and took the camper back to France for what we hoped would be a 4 week trip in early June. Unfortunately, Roger did not fair well.........his ability to manage the sat nav and map reading (both tasks of which he was highly possessive!) faltered and caused him restless and relentless frustration and anxiety. This meant a return to the UK after just a week of travelling...........I think I clocked up around 1800 miles in 5 days in our 27' camper.............I just hope Interpol and our local Plod aren't reading!! ;0)
Our last scan on 1st June had shown evidence of a cystic component within the tumour but at that time quality of life was so good for him (yep - still playing golf!!) that the specialists decided to leave well alone. Another scan and oncology visit was booked for 1st Sept. Roger then, within days, started to sleep extensively during the day. This has been much worse over the last 2 weeks and his legs have been getting weaker. Headaches had started to return with a vengeance in early July so I stepped up the Dexamethasone from a very low 2mg to 8mg which gave total pain relief (in conjunction with 60mg of slow-release morphine) and the cocktail of other drugs (Omeprazole, Metaclopramide, Gabapentin, Lorazepam, Clexane injections, etc.) However, the somnolence continued to get worse, as did leg weakness. This week he developed confusion and, at the request of the 'professionals' I had upped his dose of Dex up to 16mg (the maximum) on Wednesday. Sadly, there was no significant improvement in Roger and he had started to show confusion - the onset of which was totally without warning. Roger had a CT scan yesterday (the oncology team, Mac nurse, GPs, pulled out all the stops to find out what was going on) and the sad confirmation is that some 9 weeks after the last scan, Roger's tumour (and cystic component) have doubled in size. We are now awaiting news of whether another resection will be offered, or even just aspiration of the cyst.
Ironically, today, 1st August heralds the 1st anniversary of Roger's original debulk operation. Please read my profile if you want to know how everything happened at the beginning.
I haven't posted to bring any one of you dear people down..................I really want my post to inspire you to keep fighting, with your loved ones. Tonight we are awaiting a visit from an out-of-hours GP as, on top of everything, Roger's 'dip stick' test for glucose has tested the highest positive result possible on the scale so he is likely to be classified as diabetic. His persistence, strength, courage, determination..........call it what you will............has made this awful journey so much more bearable than it might have been. I've been warned of the events that may occur in the next few weeks but I'm feeling strong and as determined as Roger in finding our best way through all this. If there IS a way, we will find it!
My love and heartfelt thanks to all of you who have attempted to keep in touch. Remember, ALWAYS, that your GOOD news is good news for us also in this sh**ty battle!
Not sure if we've actually spoken before - although I have followed your adventures in your camper........and I just wanted to say that I'm sorry to read of Roger's decline.........you are both such strong, positive people and a shining example to us all...........
Hi Dot, We have not spoken before but just thought how many hurdles you and Roger have overcome and how strong you both are. I too draw my strength from my darling hubby who was diagnosed with GBM4 in November 2008. The high blood sugar will be caused by the high dose of Dex. My hubby was diabetic but on tablets but when first diagnosed and put on 16mg Dex his blood sugar went so high that he is now insulin controlled. I think that is quite common.The Dex peak at night I think - so his insulin dose is given accordingly. Thinking of you in the coming weeks. x x
