Just starting a new journey

Hi, please do not think others have been threw more than you.

We are all in this together, we all have cancer, its  hard, to get our heads round. though we do, it takes time, we adjust to a new way of life, we have to.

We pull our big girl /boy pants up and carry on the best we can.

Always some one here, to let of steam, scream, rant, what ever you fill at the moment in time.

We as cancer patients truly understand where you are coming from.

Some times even  our families,  do not, or we do not tell them everything, we try to protect them, to a certain degree.

I hope you use this site, you will get a lot of support here.

I would not have got this far, with out it.

 have to go to bed now, i am up early tomorrow, radiotherapy.

Hope others pop in to say hi.

Hello Fiona I couldn't let your post pass without a quick hi.  Are you in Scotland by any chance?  Just to say this period now is the worst time for waiting and the unknowns.  We've all experienced it.  There's plenty of folk here ready to chat, empathise, or share experiences.  Keep posting and letting us know what's going on.  

Hi Fiona, A warm welcome to the Group no one wants to be in but once you find it and post, you realise you have come to the right place. We were all where you are now and know how difficult it is. Once Thursday is over, I hope your oncologist will have a plan of action for your treatment and after the first one (of whatever it is) you will feel so much better! We share here what we want with others in a similar position who understand what a roller coaster cancer is. Take a notepad and pen with you on Thursday with the questions you want to ask written down. It can get so overwhelming you go in come out then realise you forgot to ask this, this and this! So that won’t happen if you write it down. I hope someone is going with you as they will remember to write a brief answer to your questions then you can discuss them later. Please let us know how you get on. Or if you are not sure what to ask, this is the group that can advise.

Yes I am in Scotland. Edinburgh. Am up in agony as my pain has suddenly ramped up so bad nothing is working. Was on 30/500 cocodamol every four hours and oramorph for night. Waiting to move onto stronger pain meds. But they have sent email asking the GP surgery to do it. Hoping I can get through to them at 8am. 

Thanks so much. Having terrible bout of pain right now and desperately needing it sorted. It was manageable till about 6pm when it suddenly worsened. I know I need to be patient but isn’t it always after hours when things get bad?

FionaMac said:

Yes I am in Scotland. Edinburgh.

Ha!  I'm in Fife and my onco is at the Western General!  

Hi Fiona

I am so sorry to read about your situation and you are in a lot of pain. You have to see the GP asap. They can offer much stronger painkillers such as OxyContin or fentanyl patch.

I think palliative care team at the hospital or local hospice are experts at pain management. Maybe you need make a big noise so you can be referred to them. 

Hopefully once the pain is managed and once a plan is in place. You will feel a lot better. 
Be kind to yourself and definitely do not suffer the pain. 

Me too! My oncologist  is Dr Zahra but have also seen Dr Jane something- she gave me the bad news and used her first name so not sure of her surname. Seeing Dr Zahra tomorrow. 

When I started this sh1t show, and the NHS used to phone me, rather than me phoning them to request their services, it felt as if I knew every single consultant in NHS Fife and Lothian.  When my first consultant Stephan changed his job profile to concentrate on trials I was not pleased because I thought I'd got him until the end game and built up a fabby relationship with him.  "New guy is lovely" he said.  Yeah - of course he is, I thought!   Anyway, I get on just as well with Mark, lots of banter and the end game is less certain now.  

I don't know those names.  Not surprising as they'll specialise in a different cancer.  I'm renal.   Renal is clinics on a Tuesday afternoon, ha!  It makes me laugh how regimented it all is.  

Hello Fiona, a belated but very warm welcome to the forum from me, a place not on anyone's bucket list, but I hope like the wonderful people on here, you find the comfort and support of people who understand what living with our prognosees means helps  you like it helps us. Though born in Oban, I now live in Yorkshire, and though we have different cancers, like you I found out yesterday my cancer is in my spine in 4 places, as you say a game changer, I do hope they come up with a plan for you, and a pain management regime, and I have to agree there are many wonderful stories about the guys on here, but I think everyone on here is amazing, and see them all as friends, best wishes for tomorrow's consideration.

Eddie xx