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.
Martin found most of the questions okay but struggled a bit with the memory questions back in july/august so i can imagine he struggle more now! xx
Hi Lesley
Feeling alot better today dont know about refreshed i have been running around all day today, but at least i can do it with contentment.
It will be the same guy, I was speaking to Alistair on thursday, he lives in edinburgh, but is conducting the research between the beatson and the western infirmary, he is coming to us tomorrow for part two for Martin.
It is the same guy, his name was written on a bit paper at my dad's - i think he asked him questions over the phone and is sending out a questionnaire of some sort - no mention of coming to the house (not that my dad remembers anyway but he very well could be!). Hope your still enjoying your new found relief!
Its great to feel this relief, but then i read about some others who have had not had good news, or have lost their loved ones and it makes me sad for them and i feel so guilty about being happy this horrible disease has alot to answer for robbing so many nice people, and also makes me worry what the future might hold for us, sorry for being so negative just read so many sad posts tonight.
Sorry to hear about your hubby Lesley KB you and are family must be devastated hope that you manage to get through this as well as you can. Congratulations to you and Gayle and Martin with your good news, hope my hubby and i get on as well too. Morning Diane CH Lesley and everybody else. Also hello to Don good too see these lovely people are giving you great advice, i am prteey hopless on that score. This is my hubbys last day of radiotherapy today we can relax next week but i will miss going to the hospital too, hope my hubby will be well will they reduce his steroids is on 8mg a day at the moment.
When Martin stopped going to the beatson everyday it was nice not to have to travel that everyday we live over 30 miles away from the hospital, but when we did go it felt like we were fighting the monster, as for the steriods they probably will reduce your hubbys steriods if he is well enough, but it is done gradually, the only side effect with Martin is he sleeps alot more but even this is starting to settle a bit. When Martin was on a high dose of steriods it made him very errational and he had a complete personality change, thankfully now he is more like his old self again, he has been on 1mg of dex for the last 2month but when we try to reduce it to 1/2 mg the headaches start, our specialist nurse told us to leave at that level for now.
Hi Lesley, so sorry to hear about your husband, its so difficult to find the right words, i hope that you all got a chance to be together as a family and have some great memories to hold on to. My heart goes out to you and your children, take care, all my love xx
Hi all, i'm still up as usual, is it snowing where you are?
Lozzy will ring you soon.
Hi Gayle, glad that the scan went well, hows Martin doing? When BJ was on steroids, he put on weight, craved sweet things and was more agitated. He was slowly weaned off them and there was some improvement.
Doug, you sounds so worried and uncertain about what do do next. I don't know anything about muscle wasting but in terms of what support you can get to help your wife get back some mobility, you should be asble to access a local rehab service, it is worthwhile talking to your gp pr oncologist and ask for physio and Occupational therapy. My husband could not walk or move his left arm after surgery and we were told that it could be perment. We fought for a rehab hosp, it was great. he is now walking. After discharge he received physio in the hbome five days a week for eight weeks, he also input from OT to help him with day to day tasks, as well as memory and vision difficulties. Hope this advice helps Take care.
Many, many thanks for the great replies, they are much appreciated. I will explore all possibilities.
Just one point, if we do go down the personal trainer route, I was planning on finding one that specialises in rehab, the thought of some superfit, pavement pounding, fitness freak frightens the hell out of me, heavens knows what he would do to poor A!!!
I was interested in Ravi's point that a physio may be better, I will definitely look in to this. Many thanks.
The walks are great, she loves them and we find ourselves feeding the ducks in the park for the first time for many years!
More soon, just wanted to say thanks. She has a bad cold just now, but spent 4 hours in The Royal Free having her checked out on Friday so have massive doses of preventative antibiotics.
Hope that you are well as can be, i am at present off my work long term sick being off since Martins diagnosis, i have been signed off work with stress and anxiety, i have getting councilling from a local cancer support group, they have been fantastic, i have only just started getting councilling from the NHS also, i work in sales and have a stressful job i just could not face that at the monment, i will however have to get back soon, the thought of the extra stress and leaving Martin and Martine scares me.
Hi Don
glad that you are getting some good advice, i cant help you re personal trainers Martin so far has not needed anyone like that, hope you and your wife are ok.
Hope that you have all had a nice weekend, its been very nice here lots and lots of lovely white snow, my hubby loves the snow he wrapped up warm and we had a snow fight it was so much fun i forgot for sometime there was actually anything wrong with him what a nice feeling long time time since i felt like that, after a half hour it was enough for my darling, he has slept for hours but we hada such a laugh.
Hi Ravi how are you and your husband hope both are well Hi Don hope you rwife is getting better and you get all the help you need Hi to the rest of you CH Lesley Gayle Diane and everybody else.
What happens now that the chemo radio has finished is it it just a big waiting game we go back to the hospital the week before christmas what is that for??
We had an appointment about a month after the end of rt + chemotherapy in which the treatment so far was summarized and the next steps, no treatment but regular MRI's, was explained.
It's an excellent time to take along a list of all the questions that you have and make sure you don't leave before they have answered everything to your satisfaction.
