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.
Hello girls- Izzy, Leslie, Carrie, Gayle, CH? ( you seem to be everywhere -lol)
not been posting much lately as it's been a bit full on - D has been struggling with confusion etc- think it's RT after-effects, a swollen brain - steroids up so waiting to see if that helps- thinking of you all though and reading posts- GAYLE- Hope the scan results will be good for you- try not to lose sleep - Lord knows we need our rest!! I think the uncertainty - the 'not knowing' is the worst thing of all in these first few months - well 6 months now for us- can't believe how the time has rolled by - just feel like we're living in a bubble and watching the real world go by outside . I feel weirdly cut off from what used to be our life, even cut off from close friends , however kind and helpful they are - it's like living in a dream you want to wake up from and knowing everyone else is awake and getting on with life as it used to be -
I read about your little girl, Gayle and feel for you- our son is 10 and I find it very difficult knowing how to talk about the illness to him- It's obvious his daddy is ill and also that he's changed- but i can't admit the reality of things - How does Martine cope? Do you find it hard not to get upset in front of her? Sometimes i really struggle to hold myself together - My daughter is 18 and she's starting to really understand now - It's a tough one alright and sometimes seems the worst thing of all about the whole situation
This is sounding a bit sad so think that bed calls - the old mans been in there for at least 50 minutes so it should be warm by now!!
Love to you all - hoping things are as well as they can be for you and your loved ones
I can relate so much to what you are saying I have often felt as though I am in this horrible nightmare and will wake up and our lifes will go back to normal, but this is never going to happen, also what you say about being in a bubble watching the world go by, how true this is I feel as if Martin, Martine and I are in this cocoon and everyone else are just getting on with their lives and we stuck here, I get so enveous of friends and family who have a normal lives when ours is so abnormal nothing is in the same in my life as it was at this time last year, Martin is a completely different person obviously with everything that he has gone through, Martine worries me so much she doesnt want to go out the house unless she goes to school it s as though she knows and wants to spend every single possible minute with her daddy, and me at this time last year I was working 8/10 hours a day living a normal life now like Martine the only time I go out is when I really have to for shopping or doctor/hospital appointments as Martin does not like to go out, only people in this situation could really understand it all.
Now its just the waiting game until tuesday I hope and pray that that horrible thing is stable and that my dear martin is okay god knows what Martine and I would do without him.
Gayle I hope the time doesn't seem to be dragging to slowly for you. It's horrible waiting for results, do you feel that you just existing waiting for one thing after another. I can relate to what you say about living in a bubble and the rest of the world existing around you. I can't bear the thought of going out on my own, and seem to be very wobbly and on the verge of tears a lot of the time. It's a horrible thing to watch someone go through and know that you will never return to the life you had. Sorry everyone, just feeling sorry for myself B can be very snappy sometimes. I don't know if it's tiredness, the tumour or the medication or that he is totally aware of what he is saying. But then he seems unaware that he may have upset me. Has anyone else experienced this.
Sleep used to be something I looked forward to, but now I haven't even got that to look forward to look forward to as B often wakes in the night.
At least I am lucky that my 2 sons (B's stepsons) are 17 and 20, they are a great help. But even now I think this is something they shouldn't be experiencing yet. I really feel for those of you who have younger children.
Week three of RT starting on Monday. B is very sleepy today. I wonder how he will feel as the treatment progresses. We had a visit from the community nurse from our hospice on Thursday. Things have been put in place that if B gets too immobile he can go back in for a time. It's hard when he's in there but gives us both a bit of a rest.
Well I'd better go a it's time to get the dinner ready. Sorry if I have been a little self indulgent but it's one of those days.
Gayle - hope your managing okay this weekend, the waiting for results must be constantly at the forefront of your mind. Worrying about Martine must be an added stress - kids are very perceptive arent they? I wasnt able to open the link you posted - what was it? - Is Martin still getting headaches? My dad's have started again this week - today for the first time in ages he has had quite bit of word loss. His scan isnt due until feb but I have a funny feeling things are deteriorating a bit. Could be wrong. Hope I am.
Joan - Can totally relate to your comments about living a dream you want to wake up from - my mum often says she misses her life - life is never the same for anyone again is it. It must be even more difficult for all you ladies dealing with your kids too.
Carrie - That's what this site is for - letting off steam whenever you feel like it to people who completley understand.
It is terrible waiting on scan results its just never off my mind, I have had a blinding headache for 2 days now and it wont go away, yip Martin is still getting headaches there is no real pattern to them but it is very worrying, also he gets quite mixed up times but he is watching lots of tv now for a while there he could not concentrate on anything so I am hoping that is a good sign also his appetite is back to normal, but he gets dizzy and dissorientated when he gets up and moves around, is your dad like that? The link was about new research in the states about gbm it was very interesting you can access it at national brain tumour.
Carrie during the radiotherapy Martin was very snappy infact his personality completely changed I think it was to do with the high dose of steriods. Also as Lesley says this site is too let off steam and speak to people who understand.
What terrible time my hubby is having he has been so sick I dont even know if the chemo tabs are staying in his system he has been so sick I had to call the doctor out last night she gave him an injection it has helped a little but he is still being very sick did any of you guys go through thisI am so worried about him also he is now saying that he is having headaches again to what is happening here do you think that I should call the consultant.
Izzy – B was sick a few days after he started his chemo – this was a five day course. He was in the hospice at the time. He also had very bad headaches. He was given anti-sickness injections and his steroids were increased for a few days. The doctor thought he may need a scan but it was decided this wasn’t necessary and he felt better during the next day or two. He is now on a lower dose of chemo alongside his radiotherapy and apart from the first couple of days when he felt nauseous ( I never know how to spell that) he’s been ok since.
Gayle – It was interesting to read that Martin’s personality changed too. How high a dose of steroids was he on? B is taking 16 mg a day. He’d like to drop it but at least he hasn’t had to increase it since he started the RT.
Quite a good day today. We usually have a carer in the morning to get B up, showered and dressed but we asked for them not to come in today so we could sleep in. We then had some friends to visit. It was lovely to see them but I think they noticed quite a change in B sine they last saw him. Let’s hope it’s the treatment. I can’t believe how quickly things have changed in our lives. From B talking about running in marathons in Paris, London and New York later this year, we have just had notice that we will be receiving the disability living allowance and are looking into getting a car through the motability scheme.
Martin was on 8mg a day that was the highest level he was ever on, but the side effects were terrible he was very aggressive his memory was horrendous and what he could not remember he blamed on me, he once called a friend and told him that I was selling his chemo tablets to junkies and he really did believe this, we were due to get married in september had it all booked and invites went out 4 weeks before he called it off left me and our daughter and he went to live with his older daughter from a previus marriage, this was all down to steriods, thankfully when the dose reduced he started getting bak to normal and he came home and we got married a month later just a quiet wedding this time. Also the steroids caused water retention swollen ankles and diabetice, although they are good at reducing the swelling in the brain there are many side effects. Martin is now down to 1/2mg a day he does get some headaches from time to time and also now seizures.
Izzy
sorry to hear that your husband is sick, Martin never really gets sick with chemo he just gets really tired and his appetite can be quite poor for that week that he is taking the tmz, hopefully your husband will feel better soon
When my Jan started Chemo she too was sick about three to four hours after taking the chemo. Hopefully you have been prescribed some anti-sickness/nausea tablets as well as the chemo.
Jan has two anti-sickness tablets Domperidone and Ondansitron; 24hrs before she starts the chemo she takes one Ondansitron, then the following morning two Dom, followed by two Dom at lunch time and then two Dom in the evening with the chemo – this routine works fine for JaniHi ; the Dom on its own didn’t thoughyou may have a bit of trial and error to go through.
One point our pharmacist made was that if you are being sick as a result of the chemo, then it has entered the blood stream, which is where it is supposed to be.
