Time to Start Thinking About Clinical Trial

So after my last long 10 hospital stay I was referred to have biopsy done of my uterus. My bleeding has settled now but I was discussed at the gynaecology meeting and it was decided I should have biopsy done just to be sure I ve not got ovarian / uterine cancer. All that sounds a bit funny in a way considering Ive now got cancer in my spine, about probably 60% of the liver and 2 cancers on my right ovary !
So on friday , two days after my hospital discharge I went to gyneo department. They thought it might be good to have this procedure done under GA anaesthetic but I wasn't sure if that was a good idea considering that my body is invaded by so much cancer. So I was gonna be brave enough and have it done under local anaesthetic, stupid or brave Im not so sure !
Everything happened so quick. I was placed on the chair thats normally used for gyneo exam. All I could see was my doc's head what looked like in between my legs ! Ive never had kids and this was my first proper exam. I would lie if I said it wasn't a painful procedure. Despite of Local anaesthetic Ive screamed and nearly fainted ! When everything was done I could barely stand on my feet. Nurse was really great in guiding me thru the recovery and was very attentive and caring.
When I got home I felt I needed my well deserved sleep...

On monday I went to see my Prof. I also had a blood oozing from my picc line on my left arm (my little blood port) and needed a dressing changed. Nurse managed to do it quickly for me before I went in to see Prof.
When I walked in the room there were some familiar faces as well. My lovely doc Jason and my caring and lovely breast care nurse were both there. Immediately I though this is probably not a great news.
Anyway, prof commented how well I looked considering how much cancer Ive got in my body and immediately asked how I was feeling in myself. My reply was good apart from some hot flashes from Letrozole meds and occasional but not too bothersome pain around my liver. He told me my cancer has unfortunately progressed further especially around the liver. It was a big blow to me yet again but I was trying to push emotions aside and carry on with my appointment.
He also did an exam of my liver. He pressed really hard and asked if I had any pain and my reply was  not much at all. He was a little puzzled to see me looking fairly good considering to how much cancer I ve got and put it down to my "young" age.
We discussed options of further chemo (with possible hair loss) or option of a clinical trial. Even though he is not a big fan of clinical trial he seem to thing that the one thats under way is a good one. Its sort of immunotherapy trial. So we briefly talked about it and he picked up the phone to call coordinators of the trial. While I was still with prof I received a phone call from them asking me when would I like to attend. I was booked for the same day to go and see them.

At the clinical trial centre I was asked a lot of questions about my general health. Jason my lovely doc managed to compile a referral letter, my recent scans, blood tests for me so I could take them with me. So they had more or less all the info but they needed to go thru inclusion criteria with me anyway. Apparently this is a trial of PDL-1 drug that is supposed to stimulate your own immune system. Doc I was seeing managed to explain how the drug works but my mind was somewhere else.
She mentioned its a tested drug. They ve tested it on lung cancer patients and they re expanding a study to breast and gastric cancer. I could enter the trial straight away but Letrozole I was taking needs 28 days washout. Yet another blow to my already weak body and my all over the place emotions ! I guess I just wanted things to happened now, no waiting around but happening now.
I was told I could if I pass all the initial tests ( and there seem to be a lot of them incl liver biopsy again ouch !) and have a washout of 28 days be included in the trial.
Fear set thru my body. Letrozole was my holding off drug so cancer would not spread further ... and now I was asked not to have letrozole nor chemo for 28 days ! I started imagining what will happened to my poor liver. The cancer will ravage through it further. My cancer is the most aggressive type you can have .... will my liver start failing even before I get anywhere near the trial ?
As soon as I left I immediately texted my Doc Jason and my Prof and explained all my worries and concerns. He said he will talk to them and let me know.
I anxiously waited for the next few days to hear from him...
In the meantime, the next day on tuesday palliative care nurse came to see me ( for the first time). She explained briefly what their role is. Following this she asked a question about where I d like to spend my final days, my flat, hospital or hospice. Ive tried really hard to compose myself and not to cry. Its a question I ve been trying to avoid answering myself for such a long time. If it wasn't for my mum being present there at the time I would have a flood of tears streaming down my face. But I've tried to be brave, ignore the question and quickly change the topic.
Later on that night I cried even thinking about it. Its bad enough having a cancer and dealing with a symptoms that come with it but now I had another burden on me to deal with ! Why is life with cancer so so difficult. It never gives you a break !

So I waited for the prof to get back to me as he needed to talk to coordinators and they on the other hand needed to talk to sponsor so they can get back to him. I ve texted him back on thru morning to check whats happening. My friend Jason was in town from Oxford and I was supposed to meet up with him for a quick catch up. However, I couldn't go anywhere as I was so anxious and with my emotions being all over the place in the wait for a prof to call. So I had to say to my old friend Jason I couldn't meet up with him, even though I wanted to spend some time with my friend and talk about life and things. My prof called that day at 6pm and we talked for a bit... He still thought it was a good idea I get into this trial. He didn't want me to miss this opportunity but I had to wait for 28 days and he couldn't do anything about it. Its a risk waiting and its a risk entering a trial as there is no guarantees it will work on me but he thinks it might be worth a shot, it might be worth a risk. Should my situation deteriorate I should let him know and we will take it from there.

I worry about this clinical trial. I worry about getting myself into unknown. What if it doesn't go right? Am I making a mistake ? I know my time is running out and my options are closing down as my cancer is ravaging thru my body 

I ve read about a people entering trial and dying after the first infusion of drug, others have a happy story. What will my story be, happy or sad one? 

I m anxious and despite all my worries I want to get in there fast as this might be my only reasonable option. If it works its great I ll be able to live for longer ...if not than I guess my cancer will take over my body and that will be the end of me, end of Dani...

My body looks good on the outside but feels very weak on the inside that I don't think I d be able to get through the chemo. Besides it looks like my cancer likes chemo, it seem to thrive on it ! It was still growing despite of chemo. It's very intelligent, adaptable enemy that I don't want to have in my body but unfortunately I can't seem to do anything to get rid of it 

This is me few days ago. Everyone says I look really good but if you were to look at my insides you d see a completely different story ....story of one badly destroyed body by uninvited enemy thats invading my organs, destroying my liver and in the process trying to destroy me.

I am tired of fighting this enemy, Im tired of chemo and Im tired of feeling tired and in constant pain both physical and emotional. I want to live and I want to live a normal life where my cancer is stable and not overtaking my body.  Is that too much to ask for?

My good old friend Omar bough me this beautiful red scarf and I absolutely love it.

It was so great to see Omar and his sister the other day. They both know how to cheer me up. Also his sister used to teach her students about clinical trials so she gave me a few pointers as to what questions to ask before i sign consent which was really great of her 

Also I had an appointment with gyneo and I have not got ovarian cancer which is good, biopsy came negative too but my breast cancer on my right ovary is close to peritoneal cavity ( a sac thats protecting internal organs). Not a great news but thats all I seem to be getting these days just a bad news !

However, despite of everything today I truly enjoyed some time with my parents and our little dog.

We went just outside London, had a lovely lunch and a lovely walk thru the nature. These moments are a little moments that we will all treasure. 

                                          

Our dog Freddy