Hi folks in blog land, yesterday I thanked you for your advise, and today I started to act on it. I rang Lee's GP and of course had to wait for him to ring me back because you can only talk to the nurse initially, however, I asked if there was any chance that the oxycontin 20mg could be increased, as Lee is taking six oxynorm a day. Last time she was very ill, and toxic on 50mg x 2 a day as well has having a chest infection, but the toxidity was due to the combination of high dose, lack of fluids and severe infection. This time its just pain. I suggested maybe 30mg in the morning and 20 at night but he said no, make it 30mg night and morning, and that he'd even consider 40 x 2 but not 50 x 2 again. He also asked the dose of Gabapentin being taken, and was pleased when told it remained at 100mg x 3 times a day.
When I visited Lee to dish out her morning meds I told her what I'd done and she was quite happy with it. I took the opportunity to discuss the up-coming visit to the hospital and how difficult I thought she'd find it, said about my blog and your replies, and she agreed, she'd even been thinking of ringing up the day before the appointment and cancelling. We agreed that it would be nicer to ring now and explain the non attendance, and let somebody else take the appointment booked for her.
Then this afternoon the lass who visits from the hospice rang, (she'll be visiting on Wednesday), and asked Lee if she'd consider a going to the hospice to see the physio about the lymphodema; in light of what we'd discussed about difficulties getting to the appointment at the end of the month Lee said thanks but no thanks, and told the lass she didn't think she realised just how difficult travel and getting about was for her, and how she can barely lift her huge swollen leg up into bed and is now using a foot sling to help her.
So two positive results today I think. I stopped worrying and wondering and did something positive with which my big sister agreed, and something positive from Lee too, she actually spoke up for herself and gave her own opinion; so without even seeing your replies to me, you're helping her too, thanks for that.
By the by, anyone got any opinions on Gabapentin - it's a queer one to me, not sure if I like it?
Take care all, thanks for being there, and keep smiling, Gill.
FormerMember
Hi Gill,
I am on gabapentin. I was given it by the onc for side effects after my op (900 mcg a day) I read about side effects on the internet and it scared me, so I didn't take them.
My cancer specialist then referred me to the pain clinic and I didn't tell them I was not taking it. He said I should up my dose to 1200 mcg a day and gave me another prescription!!!
Anyway because he said it should help with the side effects of chemo, I decided I would take them, but only 900 mcg don't take the extra 300.(don't tell them either).
I stopped reading the internet side effects, and touch wood ......... I have had no adverse side effects.
Great that you got two positive results, and even better that Lee is standing up for herself and being assertive, In our situation (family members) it is often hard to see the wood for the trees, which is why this site is great to ask for opinions, advice etc and act on it, because often our emotions are all over the place which makes us all feel very vunerable, when we least want to be.
As always you and Lee are both in my thoughts and I will continue to support yoiu both for as long as you want me to.
PS Liz read my blog !! told me off but really liked the sentiment!!! Think I seen her softer side (lol)
I'm glad to hear you have made some positive moves - the medical profession can be a bit intimidating, can't they? When I was growing up doctors were regarded as Gods but perhaps today's generation think differently. Okay, they're experts in their field... but I'm quite expert in mine so respect should cut two ways.It will be interesting to hear what the hospital authorities have to say when you explain the situation.
