Reality check take 2

Hard news to accept. It will happen to me soon. Good to be prepared for it. 
im glad you have accepted it so well. It is the unknown to go through. Please keep writing your happy times of which there are many 

lots of love xxx

Hi @Tinalay,

You have been accepting of this for a while, and good on you for choosing quality over quantity. Hope you are eating lots of chocolate, ice cream, enjoying good wine, conversation and anything else that makes your life worth living.

Don't know if you were one of those who took up Daloni's and others reccomendation of the Kathryn Mannix book, but if not, just to say I have found it fear allaying re the "unknown" which ruth refers to.

Hope the sun shines for you and the rest of us soon.

xx

Hi Tinalay,

You are an inspiration, your ability to choose and articulate what is best for you has been inspiring. Like OBS and everyone else I hope that you are continuing to enjoy the good things in life.

I am awaiting scan results on Friday 7th May after the end of my treatment, I've been able to return to work which is helping to keep my mind off them!

Here's to sunshine and happy times x

You’ve certainly got this Tinalay.

Sounds strange to be saying no more scans, hospitals or appointments but I’m sure there is a lot of relief in that. Relax and enjoy your time with your lovely family and friends.

Patmart 

Hi andannv, I too was in a lot of pain and was taking lots of morphine, my palliative care team got together with my doctor and they came up with a drug called gaberpentin which has been a miracle. No more pain for a while. Hope this helps some people coz none of us should be in pain x

Hi Rosethorns I tried gabapentin but couldn't tolerate it at all, it made me dizzy even on the lowest dose. I'm trying amitriptyline now, and think it's helping but still need oramorphine for break through pain. It'll be reviewed on wed & will probably go up from 10mg to 20mg/day at night. I'm really glad to hear the gabapentine worked for you, constant pain is so draining. xx

Hi Rosethorns, Like Tinalay, I couldn't tolerate Gabapentine,  Nothing I tried has worked for long and I've tried a lot of drugs but now I am on Butec Patches, you put them on once a week and they release the drug every hour. I started with 10mm per hour and now I am using 35mm. I still have to take a break through drug with these but they have worked better than anything else so far. I still don't get much sleep at night. When I do get some sleep, if I move to change position, I waken with the pain. I have been given sleeping pills like Amitriptyline etc but when I take them my head feels funny all the next day and I can't function. I can go without much sleep for about 5 or 6 nights and then I have to take one but I make sure I am not doing anything the next day. The following day is when I arrange to see our grandchildren because I have slept and feel human.

I am so pleased you have found something that works it's miracles for you. As you say, no one should be in pain but it doesn't always work out like that. Long may it continue to work for you!

Hi Anndanv, sorry to hear you are struggling with pain still. It’s so tough being like this isn’t it. I was thinking recently that it was only a few months ago that I was totally unaware what was about to happen to my life. Thrown totally into the unknown, but I’m learning more and more as my cancer takes hold. This site is excellent for someone like me who try’s to be strong and  says to family and friends that I’m coping. On hear, I can be honest and see there are other people like me going through this as well. I’ve also noticed that you are on here in the night like me. Hoping we can both get some sleep . 
love rose x

Hi Rosethorns, Yes, it certainly is a learning curve and this site gives you lots of information. The one thing I would advise is, when you have an appointment for the Oncologist etc before you go, write down ALL your questions on a notepad, this way you won't forget to ask the questions you need answered. It is easy to go into the room, listen to what the oncologist etc has to say and then leave. It is only when you go outside, you think "I should have asked this and this!!"

I do this with every appointment. I leave my notebook on the dining room table between appointments and jot down anything that comes to mind I want to ask! Then when I see the oncologist, once I've asked a question, I jot down a brief answer at the side of the question. This means once I get home, I reread the questions and answers! Do you have an appointment due?

Hi Annandv, funny you should say that. Only yesterday did I say to my Oh , I’m gonna write all my questions down for next appointment. I have bloods on Friday then telephone appointment with oncologist on Monday. I dont suppose much will happen because until a ct scan we won’t know how my cabozantinib is working. My scan should be another month yet as I was told it would be every 3 months.

again thanks for your reply at least someone’s listening.

love rose xx