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.
Well weekend away didn't go to plan, but what does these days! Got there on saturday had a nice day met friends at night went to comedy club then for a Indian. Got up on Sunday had breakfast, stroll round the shops dropped bags back at hotel. Called in pub a minute from hotel sitting reading paper when noticed hubby looked a bit flushed, he then says he feels funny (start of seizure)get him back to hotel and on bed at 3.20pm he as a partial seizure awake and slight twitch of hand, then between 4.10pm and 4.40pm he as 3 gran mal seizures i call ambulance and we go to hospital. They did a CT scan which shows minute speck of bleed need neurologist to look at it. Kept in overnight and next morning epilim is put up to 700mg twice a day, also gets the go ahead to start his 4th cycle chemo. Neuro comes back and says doesn't think bleed is anything to worry about and should break down and go back into his system. Anyway back home now and he fells 'fine' so i guess we just wait until next time.
I went through a similar thing with my hubby and the wedding album, he used the excuse its more of a womanly thing to do he'd enjoyed the day so much i think he found it hard to look back. That was in May and now we've looked through them loads of times ( although with lots of tears) also with the day to day things that they are used to doing it does take a while for them to get used to it but it does eventually get better. Take care XX
Hope you are all well, I had a lovely day with my husband today we went a drive down the coast albeit pouring with rain, then we went to a chinese restaraunt and had a lovely lunch, Martin truelly enjoyed it, that makes me very happy.
Mollie, your pictures are lovely you both look so happy. So sorry your little break turned out to be like that for you both, hopefully your husband is alot better now, the seizures can be really frightening thankfully Martin hasnt had any since january and we dont miss them, take care. xx
Lorraine, never got any messages from you hun, but I did text you today hopefully you got it, been thinking of you all day today knowing what you had in front of you, hope all went well speak to you soon take care. xxx
Dot, hope Rodger and you are both well, speak to you soon take care love to you both. xxx
Haven't posted for a few days...........only just recovering from the 'relly' visits!!! Roger has been more stable this last couple of days - except he booked us into campsite twice for the same dates and, predictably (and stupidly!), the campsite seem to have taken the booking fee twice from his card as well.
To be honest, I had a 'few words with myself' this morning as I know Roger has been so tired - exhausted after only a few short steps of walking. I started to think 'am I doing this to make ME feel better or am I doing it for Roger's BENEFIT'???
I know that I have to try and get him well-rested and further recovered from the second debulk 3 weeks ago and that won't happen if I am making him haul himself into the camper and I'm knackering myself loading it up with everything from the portable telly to the proverbial kitchen sink!! It breaks my heart to think that, maybe, (as in our last visit to Cromer), he may sleep through most of the 'holiday' so, as I say, I had a 'few words with myself' and decided that given his current state of health it was not only risky to take him away to the coast but downright irresponsible!! I started to think about those occasions recently when his legs wouldn't do what he wanted them to..........the times he has got stuck on the loo because his legs wouldn't work...........then I thought about ambulance men trying to mobilise him in the camper itself if his legs play up!! It is so hard because the spirit in my heart is as determined as ever but, somehow, the practical side of me is kicking in big time (and doing overtime!).
Anyway, we're staying put........at home............until Roger starts the chemo a week on Tuesday. The least I can do is keep his strength up to give him the best possible chance of coming through the next hurdle as best as he can. I keep 'nagging' him about the fact that his friends at the golf club are missing him and he has to get strong enough to PLAY again............when I look back to even 18 months ago and the way I nagged about him 'always playing golf' I want to chew off my own tongue because, right now, at this moment, in this day, this week, this month, this year............I would give ANYTHING to have him FIT and WELL enough to play.........even if it meant we didn't do stuff together. He was such a 'bloke's bloke'.............solid and reliable...........except when he had to choose between a spontaneous game of golf or coming shopping (then I had NO contest, I'm afraid!!) I am smiling now because I think back to the way he would 'win me over' to get his own way and cram in that extra game of golf.........how his friends would tease him in front of me about 'winning the missus over'. I have learned the BIGGEST lessons since Roger first became ill................and I miss being able to see him saunter off with his golf clubs on those occasions that I 'OK'd' that extra game. I'd give anything to still have a playful 'dig' about him foregoing a family get together.......or a trip to the 'sales'............because he, simply, wanted that extra game of golf with his mates.
If only.................. that's where I am at today. I am so bloody lucky to have him still here and so grateful for all the precious days we still get together. I am counting my blessings..........despite these awful, life-changing, frightening circumstances.
VeraB: Get to talk to your local Macmillan nurse............she/he will help with organising visits to the day therapy/hospice. Let me know if I can help. xxx
Gayle: I hope Martin is recovering quickly from the chest and leg infections. I am STILL waiting for him to come and do the spring-cleaning here (OK..........autumn cleaning will do!!)
Hi Dot, That all sounds very familiar. We also had lots of plans for this summer too but recovery from the second debulk has taken a lot of B's energy. So we ended up finding things that needed less energy but that we could still see as a treat. As you said I want B to go into chemotherapy in the best possible shape so not overtired. The Dutch have a saying, East , West, home's Best. It's become our motto really. Love, CHxx
Another night without sleep for Martin, how he does it Idont know. Last night he completley emptytied both our wardropes looking for a pair of trousers and then he remembered they were at the caravan after accusing me of giving them away, hiding them you name it, the illness has so much to answer for....... its so bloody frustrating.
Dot, everything you say makes so much sense as usual, at the moment I am trying to persuade Martin into going on a mini cruise to Amsterdam, he keeps saying its too cold, I am just trying to do as much as we can for Martin while we can, but maybe it is for me, at the moment I am so bloody bored with my life. Hope your both ok have a nice weekend. xxx
CH, nice to hear from you, how is Amsterdam this time of year, trying to hard to persuade Martin to go on a 3 day mini cruise, hope you and B are well and wee bluebell. xx
Well folks another weekend at the caravan for us, its completely boring me now, I would much rather stay at home, but no chance of that with M & M around, hope you all have as nice and peaceful weekend as possible.
Hey everyone, sorry to interrupt but I just thought I would post my experience here and see if anyone can relate to it even though I doubt it because not all hospitals are as ignorant as mine!
About 6 or 7 months ago I began having really bad headaches, of course it was put down to migraines and stress. The headaches persisted so my mum took me back to the doctors, a lot! eventually after a month or so, maybe a bit longer, I was ordered an MRI scan which of coarse had a waiting list, I'm not sure if there are long waiting lists for them in other places but here there is and I had to wait 8 weeks for that. When my results came back everything was clear so they said that it was migraines again, I left that as it was until I was passing out. I went to the doctor and she said again that it was stress. At this point the only stressful thing was the doctors acting like #!@*& because I knew it was something more than stress. So the passing out went on and on and they gave me tests on my heart, hormones and everything else i could think of and everything was clear! Not that I wanted anything to be wrong but it was weird because I did want something to be wrong, just so they could fix the passing out and everything, if you understand what I mean? Because everything was clear and my head was still sore and I was passing out all the time and eventually developed numbness that they did not believe me about they wanted to send me to psychologists as they said I was faking it! I was shocked and disgusted that they thought this about me! Every time I passed out from then on everyone was so rude to me about it and it made me so angry that everyone was believing them! My mother was about the only one on my side, she wrote a letter to our MP and it took a few weeks until I got a video monitoring EEG this lasted a week, by then I was not able to even get out of my bed, I felt so weak and my whole left side was numb, I was passing out about 8 times a day and I could barley move my head was so sore. Every time my mum phoned the doctors they said there was nothing they could do because we refused to see the psychologists and everything else was clear. When I got the results from my EEG it showed that when I "passed out" it was actually a seizure, the first thing they thought was epilepsy but the realised that it would not have explained the numbness so they sent me for another MRI. They told me that I had a BRAIN TUMOR, actually TWO! They said the first MRI the tumor must have been hiding or very, very! tiny to have been missed. I'm not sure what happened there and I don't know what to think about everything that has went on. One of the tumors was huge and the other was just starting, I had surgery 3 weeks ago and they managed to get out all of the small tumor and half of the second, I am now getting combined RT and Chemo which they wanted to start straight away so I started two weeks after surgery.
let me just say you are very brave - having severe headaches is awful and your anger at not finding the cause comes through loudly. mri scans are cruder than we are led to believe and you have shown that. thankyou. and do keep posting - writing is a good way of working out your feelings.
