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 

My 10 Day Unexpected Hospital Stay

So this is me again, back to the hospital with a temperature of 40.1C feeling really rough and on oxygen. Here is the full story of what happened the night I went back to A&E again..

Its the beginning of the June and I was back to the A&E again. I was not feeling great and my temperature was very high 39.5C. I had to go thru the same procedure as before , more blood tests, more blood cultures, observations, chest x ray again....  at which point I was shouting at doc really angrily to stop doing X-rays on me as I knew they re not gonna find anything (first time I shouted at someone). I had X-rays done so many times by now, in fact each time I came to A&E, where by the way they know me by now as a patient with mysterious fever. Even doctors in the corridors recognised me and were saying hi to me with a certain sympathy and sadness in their voice. 

However Ive been told its a hospital policy  to have X-rays done and they had to follow the guidelines. I know I had an option to refuse but being a good patient I had it done anyway and yet again nothing was found. 

In A&E I was shivering uncontrollably, my jaws movements were involuntary and rather fast and aggressive that at one point I thought what if my teeth go ! Thats the last thing I need, fracture of my premolars/molars ! I was shivering so bad that mum put a blanket on me and held me tight for some time to try and ease my discomfort. 

Not long after I was given IV antibiotics / paracetamols  I was transferred by an ambulance to "my hospital". I was given a lovely specious room with my own toilet which was absolutely fantastic. 

I desperately needed a loo. Thats when I had a shock horror ! My underwear, my jeans were full of blood ! I only had my period about 2 weeks ago and this didn't look like my monthly period. It was a horrendous, undignified and embarrassing bleed. My nurse kindly got me some funny disposable hospital underwear along with a hospital nightwear. It was nearly midnight and my parents managed to go to my flat, get me some of my stuff and come back to the hospital despite of the visiting hours being over. As soon as they came back I began shivering uncontrollably again. Nurse took my temp and it was 40.1C. At this point my mum said I started hallucinating and mentioning fish to her but she couldn't understand what I was talking about as I didn't make any sense. So I was given more meds and finally fell asleep. 

Next morning they transferred me to oncology where I have seen some more familiar faces, from nurses to my doctors. 

I felt really rough in the next few days. I couldn't eat anything. I d wake up in the morning with my PJ and bed covered in sweat, you can almost drain it. Id quickly run to the shower with all my fluid / antibiotic and anti inflammatories attached thru iv line to me and  only to come back into newly changed bed to sleep again. 

I had a lot of tests done incl MRI scan which is a very noisy scan ! I felt so rough that I slept thru my scan. Nurses had to wake me up when it was all finished with a big smile on their face . I was sleeping loads and not eating.

It was decided that I should have my picc line back again as they could not find a veins on me any more and were considering stubbing me in my leg. 

However, me being me ( noting is ever straight forward with me !) when picc line was inserted instead of going close to my heart it has gone thru to the other side of my chest ! I am truly weird. Even the nurse said she had never seen that on X-ray ! so I was back for adjustment of the picc line and as usual fell asleep at the procedure ! At this point all the nurses were laughing in my oncology ward ! I kept on falling asleep thru everything ! so we all giggled a little on my account :-)

At least I have my picc line back ! So no more needles and stubbing and all the blood tests / iv drugs etc were all done thru my little line in my arm and its all finally pain free !

I ve seen so many docs at this point from oncology to microbiology, bone people, nutritionist  etc etc 

Finally a big mystery had been uncovered after the number of scans.....It was my gall bladder that got infected and thats the culprit of all my fevers ! So I was on iv antibiotics and still feeling sleepy, tired and not eating apart from taking fortisip ( nutritional shake the only thing that kept me alive !). As a days went by I could hardly get myself to the shower / toilet each day. Thats when the ward received a phone call from haematology  that my haemoglobin was really low 6.3 and normal range is from 12 -16 I think !

My doctors were surprised I could  even walk ! So I had 3 bag of blood transfusion ( pain free thru my picc line :-).

My bloods results

So eventually I started improving slowly each day. I even managed to eat some food too ! and was more awake. I found comfort in reading a book my friend Silvi suggested. It by OSHO - The art of living and dying. 

When I started feeling better the whole situation started to sink in slowly. One night I found myself crying so much. I needed a release from all this tension, endless hospital visits, my deteriorating situation, my poor parents etc etc. I ve cried so much, I wanted to scream but I couldn't do that so instead I silently cried at my very bleak situation. This is when I realised I only had one tissue left ! I than laughed a little and thought to myself "I ll have to limit my crying due to the lack of tissues "!

So I fell asleep ...

The next day around lunch time I was in a little bit of pain and needed oramorph top up.  As I was the first bed in a very long ward I could see nurses going passed in front of me with a trays of food. 

At that very same time my nurse was taking a bloods from my line so I said to her " With all those nurses going pass me with food trays I felt like I was a judge at the Miss World competition "!

She looked at me and smiled. We giggle at the fact that it might have been my morphine kicking in but she did find it funny that I managed to entertain myself with a good imagination on the oncology ward.

My good old friend Tesni came to visit when I started feeling better and I appreciated her company. 

She was naughty and brought me McDonalds meal I was craving for and gave me a toy from her happy meal ! It was naughty but so tasty ! Thank you Tesni :-)

After cheering me up a little and feeding me with tasty meal (compared to my hospital food ) Tesni left.

I felt guilty because of my recent enjoyable, delicious and mouthwatering junk food meal that I had so i had to compensate it with a few healthy treats 

Few days later my good old friends came to visit from Oxford. Rachel, Kerry and Adi (who gives the best hugs in the world !)

It was so lovely to see them and they cheered me up a little. We talked about our good old times, laughed about dental mishaps we all had and how Adi and I played cover orange game in between patients. That little game was almost our ritual we had to do in between the patients !

Ive laughed so much that even my nurses noticed I looked a lot happier and better. It was such a great way to spend my hospital afternoon. Even though I don't like people visiting me in the hospital I really appreciated that fun afternoon I had with them.

Than as a surprise visit my friend Omar came down to see me with his sister after his trip to USA. It was so great to see my good old friend. I finally had a bit of the chance to talk to his sister about little things that made us all laugh :-)

My last hospital visit was from Irene our neighbour that I ve not seen for a while. She was a lawyer who gave it all up and became a healer. Great and very kind person that I'm so glad I had a chance to meet and become a good friends with.

My lovely docs Jason, Jackie and consultant were really happy with the way I was improving slowly. Jason and Jackie have been absloutely fantastic during my 10 days stay in the hospital. They ve organised everything so quickly for me that I don't think I would have had any better care if I was a private patient in super swanky hospital. I ll be ever so grateful to them both.

My nurses were also all very kind and chatty with me that I appreciated a little distraction from my grim hospital life.

So finally I was discharged after 10 days. It was so great being out, even though my energy levels were not that great. Its like I went to to hospital in the winter and came out in the summer. It was so nice, warm and sunny. I enjoyed a short ride in the car, in the sunshine and watching the world go by. 

Next day I even managed  to go to my favourite place to eat as well and enjoyed my flowery tea and the evening sunshine. 

I guess sometimes a will to enjoy life despite of feeling rough is much stronger. Also I think my life will be a very short one so I often force myself to do small things that make me happy on a day thinking I ll be paying a price later on but its worth it for now !

I was absolutely knackered when I returned home 

I was happy to be home, have my home comforts and my own toilet ! But somehow sadness would often creep in and spoil my happy days. 

I often would look at my poor parents and how they are soldering through, loosing  and forgetting themselves in all of this and putting me first. My mum looked drained and very tired but was still looking after me at this bad time. 

All this would often make me feel so sad but i d try not to cry in front of her. Even when i did feel tearful i d run to the loo so she would not notice. I hope she ll cope after I'm gone, i d often think that.

However, for now I will try and enjoy every moment with them ..

Thank You My Dear Friends ...

So after my meeting with prof and my short 4 day stay at the hospital for my back pain I came home
 :-).

My good old friend from uni James came to see me. It was so lovely to see him. He has been thru some difficult times as well. When we were first year in uni (he was studying medicine and me dentistry) we lived in the same halls of residence. What a fun place that was. I still have some great memories to look back onto. 

Around 6 months into our studies James suddenly left. Thats when I found out he had brain tumour and needed a surgery. What a shock that was for me to know someone so young suffer from such an illness. I thought about him a lot when he left.

I ve not heard from James until 2008. Thats when we found each other on the good old Facebook. 

He was training to be a priest. So finally after all this time he came to visit just after I came out of the hospital. We talked about good old times, we shared a lot of information about our cancers. 

I found out that James had 2nd brain surgery,  chemo and radio. His brain tumour growth has been halted for now which is a great news. Its been great talking to him. He is such a lovely and kind person and I finally felt that I can actually share info with someone who has been thru more or less the same and can understand fully what I'm going thru.

When he left I couldn't help but feel guilty that I wasn't there for him when he initially got diagnosed. I felt guilty that all that time I ve not found a way to get in touch with him ( there was no Facebook back in '99 /2000) . I can't believe I ve been so self absorbed in my life that I couldn't find a moment to ask him how he was, if he needed anything like shoulder to cry on, or simply have someone there... I guess I ll never forgive myself for such an ignorance and laziness form my side.
At least I ll try and keep in touch now even thought he is miles and miles away.

My lovely roses from James 

I have been truly overwhelmed by all the emails/ Facebook messages/ texts/  little gifts / cards I ve received. I know I ve not been great in replying to all of the messages and I do apologise for it . Im not being ignorant, I read them all and I will eventually reply to you all. I just need a little bit of time.

Im so grateful to people who have been so thoughtful and sent me books to read, beautiful flowers to smell, music to listen to ....

I also had a little surprise in the post as well by my friend Charlie and Kate Spencer, author of the fun, easy to read and very entertaining book called Twelve Lessons. Even though we never met thank you Kate for a great and hard to leave book. I look forward to finishing reading it soon after my recent long hospital stay.

Also my good old friend Jose has been really great and thoughtful. Thank you Jose for being so kind.

Those are just some of the most recent little things that brought me kind of a sadness and smile at the same time. Thank you my dear friends for being so kind and caring at the most difficult time of my what looks like a very short life. I ll be ever so grateful to you all. Its not about material things in life...its the way you all managed to touch my heart with your kindness. 

   Some recent books I ve been send thru the post                            Some recent cards Ive received 

Some lovely flowers from                                Some wonderful flowers from lovely Amara 

my friend Juliet from oxford

And finally present I received just before my long 10 days unexpected stay in the hospital  in the beginning of June.  This little gift  brought a tears to my eyes ....

Its a painting done by my friend Emma. Its 4 of us girls on our wonderful and such an enjoyable trip to Bruges in 2009. Such a thoughtful and fully of memories gift that brought a tears to my eyes.

 Thank you Emma my dear friend and really hope your cute little surf shop in Swansea is doing well this spring / summer 

By the way Im the one in a yellow shirt :-)

My Last Summer - Series

                                                             Beautiful Croatian Beach


My last summer follows 5 terminally ill people thru their emotional ups and downs. It looks at family issues, facing and preparing for death in the best way possible

http://www.channel4.com/programmes/my-last-summer/videos/all/s1-ep1-the-last-summer?cntsrc=4od

(if the link doesn't work its on channel 4 iplayer - My Last Summer )

My last week meeting with Prof

Im in pain today, so much pain. I never knew your own body can hurt so much. My pain starts in the lower back / tail bone and goes down the legs. When it hurts i can feel every nerve in my legs. I can almost describe pathway of each one of those.

Last night I didn't get any sleep at all due to severe pain despite of medications Im on. 

I called my on call oncologist. Luckily it was one of the registrar I knew. I think he probably knows my medical history inside out by now. So on his advice Ive doubled up dose of pregabalin and morphine (the main 2 meds). I felt no better, probably worse but maybe it takes time to kick in. In the morning I could barely get out of the bed and when I did I realised I found it difficult to walk. 

My scans showed nothing that could cause pain. The main radiologist had a look at them really thoroughly and he couldn't see any nerve, disc compression. Could be my spinal degenerative disease ?. Something i might have inherited from my grandma.

Finally when I somehow managed to get to the living room I sat on my sofa and started vomiting. My mum said she never has seen anyone vomit so much. The bag was rather heavy.

It the afternoon pain eased off a little bit. I felt like a zombie all dosed off on morphine. Mum said I started hallucinating in  the afternoon. 

Pain is a little bit better now but its still hurting

So here is what happened so far 

After my last stay in the hospital i was discharged to go home. On Tuesday my good old friend Omar booked an appointment with my prof at his private clinic. I was ok to wait until 9th june when I have my appointment to discuss my options ( if I have any left at all) but my friend insisted I needed to see him sooner. 

So Omar who by the way is not feeling great himself these days, came down with his sister and we went to see prof. I was so dosed off on oramorph that I can hardly remember what happened at the appointment. Prof said I shouldn't loose hope and there are other tricks up his sleeve. So I might either go for clinical trial or further chemo possibly if my temperature stabilises. 

Omar's sister was really great in asking all the right questions and I was so happy she was there too. 

Before I came for my appointment for some reason I felt like crying so much. I think everything was getting on the top of me and I couldn't deal with it all. Constant hospital stays, not being able to do much because of pain etc etc. I felt and I still feel like a prisoner of my own body. I want to escape from this body but I can't Im trapped. Im tightly chained up and there is no way out. 

So after meeting prof just before he jetted off to the conference USA I felt slightly better but concerned that while he is away my cancer would grow even further. 

Prof was so kind and he waved his fee and said we should all go for a lovely lunch rather than pay his fee. I couldn't believe his kindness and generosity. I felt so bad that he waved his fee. 

As my pain was still not under control he immediately organised for me to be admitted to hospital for better pain management. By the time I got home I received a phone call from my lovely doctor Jason saying that he found a bed for me and whenever Im ready I should go over to the hospital. 

So I stayed there for 2 1/2 days. My pain was bad but not as bad as usual. However, my leg weakness was so obvious as I couldn't lift my left leg when asked. 

I slept like a baby in the hospital (probably due to morphine). I was lucky to have slept so well as lady across the room from me died over night. When I saw an empty bed i felt fear, shivers down my spine, and nearly cried even though I didn't know her. Its very difficult seeing, hearing that people die of cancer. On my online cancer group another lady died and all I can think is ..Am I the next ?

I am scared as I never thought about my mortality so much until now. Its hard to find that little space where you re happy knowing that I could be next. People say to me that they can go out and be run over by bus. Although, this is true and I do understand what they re trying to say but somehow its different when you know you've got this terrible incurable illness and you know your time is ticking and you know one day death will come for me. I hope it takes me to heaven :) but will see ... 

My friend kate said friends go on forever. So I said I hope they have a good communication from up there in heaven or down there in hell so I can still communicate and whisper secrets of life to her 

Cancer is slowly but surely beating me. I used to hope I ve got few more years to live but now I m starting to count my days and months instead....and I've got so many unfinished things I need to do .. 
I don't want to die not yet but I think my time is coming up soon. 
I often lie in bed thinking how does it happened? How does dying process go ? Does someone like death comes for you, talks to you and takes you away? Where do they take you? 
Is like Meet Joe Black movie with Antony Hopkins and Brad Pitt when death comes for him. What a great movie about dying that was ! I ll have to watch it again I think even thought its very long , about 3 hours I think but its very good.
I loved the soundtracks too 

So I was put on pregabaline, morphine and some other meds like omeprazole, paracetamols, etc

and discharged on friday. 

I was so happy to go home where I ve got all my things, my own tv, my own toilet ! 

Just feeling a bit nostalgic about old me and Croatian sea:

Hospital again !

Still struggling with pains and shivers. I'm back to the hospital again. My temperature this afternoon was 40.1C with extreme shivers. I thought I was gonna break my teeth as I couldn't keep my mouth still due to shivers. More tests tomorrow. Hope it's not painful.
I'm finding this all a little bit difficult to deal with
My dear friends I will reply to your messages via my blog, messages, Facebook, email.  I will thank you for all the little thoughtful gifts you sent me . That's very kind of you.
I have asked for DNR today ( do not rescusitate ) as there is no cure and I don't want myself or parents to hurt any more