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.
Hi Rona, Welcome to England! My hubby is just in front of your Dad as he has just started his 6th cycle of chemo. Scan on the 21st of September. It is scary isnt it. Hope it goes ok x x
Thanks, I did read both your posts about the PCV info and am glad you found it useful. I'm also happy to report that R has definitely picked up over the last week and that we have been out and about for a few "jaunts" again. He is still a bit weak in the legs and is having more difficulty getting in and out of the car than before. I don't know if that is still the effects of the chemo or if it is progression of the tumour. You tend to look for every small change and wonder what's going on, don't you?
It sounds like you've found a great support service with the hospice - you mustn't feel guilty about leaving Roger there, and don't run yourself ragged doing all the chores - have some down-time. Thankfully I am still able to go to work for a few hours a week and leave R, but don't know for how much longer. I had wondered about our hospice day-care but think it's maybe a bit soon. Did you get a referral from the GP or did you arrange it yourself? To be honest, I haven't had any info from the hospital or GP about support services and am probably lucky that I haven't needed any yet, but don't want to wait until there is a "crisis". Again, any experiences from anyone would be welcome.
Just had doc in, Martin has chest infection again and also his leg infection flared up again, so another set of anti-biotics over this past year he has had more anti-biotics than in his whole life. Although he has chest infection it hasnt made him talk any less, or do any less, or sleep anymore unfortunetly lol.
Dot, glad Rodger enjoyed his day at the hospice that must have made you feel good, maybe you will get a little bit of me time, I had a little bit of time just with Martine over the weekend where we went to the cinema and did some normal things first in a long time it was so nice to be able to relax with just Martine and not be on edge as Martin doesnt have the patientence to do anything like that, although we both missed Martin so much and worried about him the whole time. I wonder where your next adventure will be you certainly have done so much over this past year went to many nice places and made lots of happy memories love to you both. xxx
Rona, glad to hear that you are back home in the UK bet you and your dad feel so much better for that, hope you had a fantastic holiday in Japan. xx
Vera, support groups there is nothing like that in our area specifically for bts, which I was trying to put in place before the summer holidays, but kind of took a back seat over the summer holidays to have quality time with M & M, but is something I would like to try and do in the near future, I have been very lucky over the past year to have the support of ayrshire cancer support where I have recieved councilling, reflexology and hypnotherapy without them god only knows where I would be today, I hope you find something near you. xx
Diannne, Intresting about council tax reduction, will look into that. Hope Hannah is still doing well. xxx
Ying and Yang, hope all is okay with you and your family. xx
Thinking of everyone else old and new not mentioned.
Had a busy weekend with Roger's rellies visiting. He has had a couple of scary times in the last four days - chronic headache first and then, last night, felt so unwell I had to call Neuro Registrar at the hospital. Roger openly admits he doesn't feel any better for having the op and, of course, I keep telling myself the 'mantra' that 'it's early days'.
The lack of mobility in Roger's legs and general weakness is the hardest thing but these frequent headaches are not a good sign. Like Vera says, you look for even a very small change and wonder what's going on.
VeraB: I am so pleased to hear that your man is picking up now on the PCV. Please keep me posted (even when it's 'not so good' news, it is really helpful in preparing me and our family for the 'what ifs'). I hope he continues to stay strong and healthy despite the toxicity of this potent combintation of chemo drugs. I also hope that Roger gets well enough to commence it in the first place. At the moment, I'm not convinced that they will go ahead with treatment. Anyway, thinking of you both.xxxxxx
Gayle: I was really shocked to hear about Martin's latest problems. The chest infection will be the thing worrying you most, I guess. Please keep me posted. I am so pleased you got some time with young Martine - it will be as important and uplifting for her as for you and will build unbelievably strong bridges between you that will sustain you through those hard times. xxxxxxx
Off now to clear up after the last of our weekend visitors. I wish you all a peaceful evening.
Is anyone watching Coronation Street, Martin just sitting staring at me not knowing what to say, the fear in his face is terrifying, Norris Coles's brother died on a flight to Austrailia, suffering from a brain tumour without telling any of his family, between this and Ted Kennedy last week it has given Martin such a fright. The only plus is that it is creating much awareness to all our plights.
Gayle know what you mean, Jamie loves a series called prison break and having watched 4 series the lead character dies of a brain tumour, this was about 3 weeks after Jamie got diagnosed. We were watching the tv last week about Ted Kennedy, didnt know what to say told Jamie he was old and had different type of tumour. Knew in my head he prob had gbm, checked on net yep! Jamie finished first round of tmz, no sickness probably because I pumped anti sickness tablets in to him like no tomorrow, poor love. But he has been very grumpy and snappy the last 2 days and Im starting to lose patience! was supposed to sit down and choose wedding pictures for album and he was in such a huff had to tell him not to bother il do it on my own! hes very tired during the day and has had pops at me when iv told him to go and have a nap, id kill for an afternoon nap. Hoping its the tiredness and he'll perk up. Know he gets very frustrated with having to be driven eveywhere by me etc. we went to buy a new bathroom today and he didnt really seem with it so i ordered it and i could see he was thinking 'i used to do all this sort of thing' i know he cant help it but he used to do so much and its frustrating on both parts i feel like its me running things and looking after Connor whilst Jamie just goes along with it all in abit of a daydream. Anyhoo, rant over off to bed.take carex
Laura, Martin and I are avid fans of prison break and have followed it from serious 1 on c4 right up to today on sky 1, but I picked up the signs when Michael started having severe headaches and dizzy spells and decided to abandon it for Martins sake, like you when Ted Kennedys death was on the news I had to lie to Martin also, about his age and different type of tumour, I really dont like lying but in our case at the moment its for the best. Jamie is doing really well, like Martin he is not getting sick with the chemo only very tired and grumpy when Martin was on the 6 month tmz phase the week during chemo and the week after he could sleep round the clock. Sorry Jamie didnt get to help pic the wedding pictures with you, but it shall be a nice surprise for him when they are ready. xxx
Dot, hope you managed to get your darling Rodger out for that walk, thinking of you both, off for a little nap now as I have been up most of the night, Martin back to himself and he is rearraning the living room as I sit here, what can I say!! xxx
Well I'm now back from our final holiday of the summer and getting ready to go back to school. My mum is 2 weeks from having the MRI scan and still has 2 weeks until she next sees the consultant, but she won't hassle them. I suppose it doesn't actually matter what the scan shows as she can't have any more TMZ. She is so tiny and frail and doddery now that I would assume that they wouldn't consider any other type of chemo as I don't think she's strong enough.
But her husband is today having a CT scan for "something" that was discovered during a colonoscopy last week. He only had the colonoscopy last Wednesday and on Thursday they phoned and arranged the scan for today. I am assuming that this means that it is highly probable that it is bowel cancer. I know taht there is no point in worrying until we know for certain, but I have hundreds of "practical" questions running through my head - how will he get to the hospital foir chemo and rt as obvioulsy my mum can't drive anymore? What happens if he gets really ill on the chemo as my mum couldn't look after the both of them? Will they be forced into a nursing home? What's teh prognosis and timescale for bowel cancer etc etc
Sallye, nice to have you back, hope you managed to have as nice a summer as possible under the circumstances that you are in at the moment, I will pray that your mums scan results are good, so sorry to hear about your step-dad, as you say it never rains but it pours.
Hi folks just to say this thread is far too important to be stuck on page 3!
Hope everyone is doing ok and its a good sign that the thread is not needing to be used as much.
Gayle - Hope your ok hun, texted you a couple of times just to see how Martin's chest infection is, please get in touch when you can so I know your ok love to the 3 of you x
Love to everyone else x
Tomrorow will be a tough day for Dad and I as we are going to get Mum's headstone I want it ordered before I return to work on Monday, have been off for 3 months and it will feel weird going back to working life again but good in a sense that I am starting to move on 10 weeks yesterday since Mum died and boy I still miss her every single second of every day, could not decide what to get on headstone much loved Mum of Lorraine seemed so normal so have decided to get precious and adored Mum of Lorraine as that is what she was!!
Will pop in from time to time folks but for now I face a different journey and that is to try and move on for the sake of me, my family and most importantly my darling husband as our marriage was really on hold the last 2 years due to Mum's illness but I will pop by to say hello.
