Thank you, Sweetie, I know you’re not in a great space right now.
Today is the first day I’ve woken up in a lot of pain - my neck, mainly, am waiting for a call back from one of the doctors because I don’t believe the small amount of codeine and paracetamol is quite sufficient (although I feel better posting this, now I’ve had my tablets and coffee. I was warned that I would reach a rough patch once the steroids finished, and I hope this is it and not something else.
It’s hard for me to post sometimes, especially when in pain. Outside is frigid (as I’m sure it is everywhere), going to have to wear a set of socks around my boots if I do have to go out.
Then a taxi to the doctors’s - I feel like falling anyway despite the weather, a taxi to the chemist and back. I’m not usually so profligate but needs must.
My G.P. is actually going to visit me at home, bringing some pain relief with her. I think that’s pretty stellar.
A few of my other meds need adjusted, also.
Not looking forward to the bone marrow treatment tomorrow, but it’s something that must be endured. I hope to stay at home as much as possible during my chemo - there’s nothing like home, it’s not the same on the ward no matter how well they treat you.
Had a long convo with my sister - we were estranged for years, but she did visit me during my first cancer in 2016. We plan on staying in touch.
I am so pleased you have contacted your sister, family can give support when you are ill and help you through the bad times.
I have only just caught up with this thread Ffosse and I’m so sorry to read your news. Please keep posting as much as you can. I think it really helps to tell someone how you are feeling. I hope the treatment goes well for you.
I know it sounds silly but although we all appear as a few lines of type on a computer screen, we sort of get to know each other, so keep posting.
I wish you all the best.
LD
Yes, it’s random 1s and 0s on a computer screen but we are all real people. It does help me to post - I can keep track of appointments by going back and reading what I’ve written, and I welcome others’ input too.
Not sure what I’m eating today, but it will be less now that the course of steroids is over.
My one gripe at present is not having the concentration to read much - I do love a good book and have so many I’m not getting through. I’ve mostly been visiting You Tube and various other sites, but staying away from anything too negative. It’s tiresome, at times, just having a 15 minute concentration limit.
They’ve just gone ahead and booked me for something else - I’m getting sick of this:
Thursday 1st . Bone Marrow Ward 1 11:00 - I understand this leaves me with a sore arse.
Monday 5th ECG Anne Fergusson Building 9:30
Tuesday 6th Chemo Ward 1 09:00
Wednesday 7th Mental Health Worker 12:30
I’m tempted to say no to all of them…it would in fact be easier for me to be in hospital to attend all of these - I just want to be left alone, feel I’ve hardly had the time to digest bad news and they’re racking me up with appointments. It doesn’t feel fair.
Ffosse I know how you must be feeling but all these appointments will help with your general well being… even though it doesn’t seem so.
If you are struggling to travel to the hospital, ask if they have a patient travel service, especially for the chemo one!)
Please don’t give up, because you need this care, but I do understand that there will be times when you think " I can’t be bothered". You are afraid, just as we all would be, but please try to think that the hospital appointments will help you deal with your problems.
It would be easier being in hospital rather than attending all these appointments from home; I think they’ve forgotten that I can get quite agoraphobic.
I’m going to forget about the ECG one. I don’t want to be doing anything next Monday.
There’ll come a time when there shall be just 1 treatment too many for me. I’ll see how chemo works this time, but if it doesn’t, although I appreciate they’re trying to prolong my life, I may just give in. Already sick of that building, using taxis, spending time and money.
Oh my lovely Dreamy!
I understand your plight, but please stay positive.
Life is shit for you, and all this is so unfair.
Ffosse, Let me tell you that nearly all cancer patients go through a period of hating being at the hospital… even those who are eventually cured.
It is a place that reminds you of your illness, so you hate being there, but it is also a place that can make you feel better for longer.
Try to do things that make you feel happier.
Ffosse …you’re sick to the back teeth of hospitals and I don’t blame you getting hit with so many appointments. It’s bound to drag you down. Try and switch off from that … stick it in a compartment at the back of your mind and lock the door on it. Treat yourself today to something that is a little wickedly indulgent and what you like doing.
Wow … as I type this a gust of wind has just swirled all the snow into a misty white cloud in the garden, very pretty and hypnotic. There’s a black bird foraging at the food table looks quite comical , he’s so surprised.
Hope you’re snug and warm.
I’m very snug and warm. My G.P. visited me at home with some more effective pain medication and we had quite a thorough talk about everything that has been going on. I’ve known her for 8 years and she is very pragmatic and caring.
She said that tomorrow - at my bone marrow procedure I should ask for the ECG too, she doesn’t see the need in another appointment, either.
We also talked over long term plans, ie. hospice care should it get that far, and what I wanted, and whom I wanted informed should things get worse. She was very reassuring, and it was good for her to take the time on what was her day off to see me. I feel revitalised - I’ve simply got some more appointments to go through before the chemo starts anew - once that’s started, fortnightly, I think there won’t be any more appointments except for regular scans.
It was the first time I felt properly listened to and she has put my mind at rest for now.
A good understanding and reassuring G.P certainly helps you keep your own sense of inner balance. You don’t need unnecessary hassle. She sounds a nice lady, someone who understands that you need to know your options, will honour your wishes and is in your corner batting for you whilst you’re on this roller-coaster ride.
It was bottles (2) of Morphine sulphate she brought me - 5ml to be taken in a dose. I take it that this is the same as Oramorph or slightly stronger.
Yes, I’m very lucky as she really is a good doctor. She’s also arranged with the pharmacist that my Friday pick-up of medicines can be delivered to me if I’m too ill to go out.
So I’m feeling a lot better - my biggest concern is getting to tomorrow’s appointment. Luckily, it doesn’t start until 11 but I’m worried about falling going up to the bus-stop so I think I’ll be getting a taxi there and see how I am on the bus back. This morning was slightly scary because as well as the pain I felt, I didn’t feel too good on my feet until I’d had my meds and a cup of coffee (speaking of which, I’ve been eating rubbish food today).
After tomorrow, I don’t have an appointment until Monday which should give me time to recharge then my chemo begins again on Tuesday. I’m not 100% sure of the timetable of the chemo but think it’s every 2 weeks, at least it was last time, then I have an appointment with their mental services which I could really forego but will probably attend. Chemo didn’t faze me last time; I enjoyed not having to shave for a couple of weeks at a time and I know I won’t be on one drug which stung particularly badly each time. As long as I don’t eat during or around chemo time I won’t be sick.
Suddenly things don’t seem so bad, I have time. If only I could restructure the present into something more meaningful. I was miserable last night which caused pain, or it could have been the end of the steroids or catching a slight chill from the baltic weather, but I now have more medication options (I’m guilty of taking less than I need at times), but won’t make that mistake again so should sleep well tonight.
I apologize for being late in getting caught up with this thread, Ffosse, but I have to say that you have my sincere respect for how you are handling your diagnosis. I hope we can help you in some regard.
The last time I read a post from you, you were having a lovely day - and so now you just have to get down to the business of treatment so you can have even more of those.
In the US, a GP visit is all but unheard of, and it sounds like you have a tremendous advocate in your corner. She has already put a battle plan in place. Trust her, and when you can, leave the worrying to the professionals so you can, as you said, focus on living.
There is no question that you will have a rough patch ahead, but your doctors wouldn’t be prescribing this plan of action if they didn’t think it would give you some quality of life ahead. Make lists of things you are looking forward to once the chemo is over and do them. It’s a great time to enlist your friends to make these things happen if you need to.
I also really appreciate the way in which you are savoring the little moments in life. Forcing myself to find the joy in each moment in the depths of my daughter’s disease ultimately became a habit…which in turn became a lifestyle. You are well on your way in doing this just by enjoying the first moments of the day. You keep right on doing that.
Just take it, literally, a step at a time and you’ll be ok.
Let us know how we can help you on this end :hug:.
Many thanks, Surfermom - your posts are always helpful to me.
I think part of the problem with me is relinquishing control - I’m very independent minded and do resent the interruptions to my life on a grand scale even though I know that they are for my own good.
Feeling positive today - I couldn’t quite believe my G.P. would walk through a snowstorm yesterday to my house bringing medicine and such good cheer. I’m very lucky in a lot of ways.
Yes, I try and find good in the smallest thing today it was again simply lying in the dark, firing up my vaper and anticipating the coffee I was going to make. These small joys are not always easy or apparent in some of the more negative posts I’ve made. Everything will work out fine, though, this I believe.
As I write this, it has turned light outside - still a frozen Narnia but beautiful in its own way.