Cancer

I am a ten year stage four cancer survivor, apparently.  

As per usual, I'm not very typical: including my story of cancer.  It is this story, that came to light as we pieced things together, that has given the doctor's great hope that we can beat this.  Because the cancer incubated for so long it has spread wide and looks scary.  From the doctors' perspective it looked like it had spread from my right kidney starting in about April and was sweeping through my body rather quickly.  The doctors looked at my charts and expected me to be sick and on the way out, but they found me sitting on my bed, wide eyed and bushy tailed and not at all sickly.  They were so confused. After chatting with me they went back to reassess and rethink me.  We started to piece things together and realised what the history actually was and the extent to which this has gone on.   

It started 10 years ago.  I found a lump on the front of my torso, just under my rib cage.  Now we all know that lumps are not good, so I made an appointment to go check it.  They did an ultrasound and couldn't see anything and decided that it was just fatty tissue. (The doctors here said wait, they found a lump and didn't biopsy it? She seriously went slack jawed for a moment taking that bit of information in.....) So I went about life as normal.  probably about three years later one showed up down on my waist, but I had been told not to worry, so I didn't. They biopsied that second lump while I was in the hospital and, sure enough, it was the the same kidney cancer that is currently raging through me.   That's a long time to incubate. Not long after that point I went it for kidney pain and my right kidney (the one with the primary mass on it) was a solid kidney stone.  They broke it up with ultrasound, put a tube from my kidney to the bladder, and I spent my summer passing kidney stones; that was my favorite summer. From that time, any kidney pain I felt I assumed was stones and worked hard not to have any more. 

So, this cancer has had time to slowly creep and spread.  I don't know when it worked it's way into my brain.  But if I look back it's been a while.  I'm a clutz. But I became more so, tripping over the floor, tripping up stairs, and tripping on anything that might get in my way, backpacks,  random whatever - or whomever - was on the floor.  Until I fell hard I hadn't noticed how bad I had become, which is scary to me.  Another issue was trying to find words to complete thoughts.  I think people thought I was a bit daft, but it was just part of a quirky nature and people just let it pass.  When I finally  fell, I couldn't write and I had a hard time working a fork and knife to eat. The swelling had now become so severe that I was loopy, not focusing, and out of it.  In fact, my family thought the hospital had given me good drugs, but it was just me. My saving grace is the steroids they have me on for the inflammation and they have made all the difference in the world.  I'm not at 100% mental capacity, but I'm working my way back. However, I will toot my own horn - just a bit.  Despite four large tumors affecting my brain, I am top in my classwork and have gotten a distinction in my course modules.  Just goes to show what a person can do when they really put their mind to it.  .... stepping off my my brag-box and coming back to humility..... ;) 

The next section that the cancer has spread through is the bones in my spinal column. In fact, the lumps on my head - that I was complaining about earlier - are similar bony lesions.  I now know what a bony lesion feels like.  The good news is that even though these lesions reside in the spinal column, they haunt the back wall of the bone - away from the spinal cord and associated nerve roots - where they aren't causing any neurological problems.

The rest of the tumors are in interesting places.  All of them are glandular and reside on the lymphatic system and are on my liver and lungs.  The most entertaining place is a large one at the back of my throat on my tonsil and the huge bad boy that is on my neck. This is good because when we start the medication most of the time we can't tell for about 5 weeks or so if it is shrinking things the way we want.  But with the tonsil and throat, we can actually get a visual, so that will be handy. 

They say I have cancer raging through my body. But for a few aches and pains, and feeling a little tired, I really wouldn't have guessed. I feel confident that the treatment is stronger than the cancer because well, it's a slow creepy crawly thing.  This cancer doesn't know who it is messing with, and I am going to do all in my power to eradicate it.  It will be a hard row to hoe, but hey, I like a good challenge. The past year that I worked on being healthy (losing 30 lbs) eating right and exercising as well as studying and working on languages are also to my advantage. The healthy  outweighs the sick, and I feel confident that it will all work in my favor. Time will tell, but I'm far from my deathbed.  I have too much to do to kick off now. I plan on being a 30+ year cancer survivor. Never give up.  There is a bright side to all things and nothing that a positive attitude can't fix.  Keep smiling, it makes people wonder what you have been up to. 

British Hospitals

For those of you in the US, you will find the inner workings of British Hospitals to be very different from your concept of what a hospital is. And now that I have experience both, there are somethings I really like about the system here though you may find it backward.  However, maybe from my perspective you can see the benefits. 

I think the thing that prepared me the most for this experience was working the hospital at This is the Place Heritage Park.  Now, mind you, the medicine and how they operate is not the 1880's backward and cruel kind of medicine.  It is state of the art.  It happens to be how the hospital set up for the patients.  One of the differences is that there are not lovely quilts on the beds in the hospital here like there was in the park.  

There really is no such thing as a private room.  If you have private insurance then, well maybe, but you would also be at a different hospital anyway.  But the NHS is a good thing and it gives care for all who need it.  Not to mention when all is said and done I will not have any medical bills from this.  So the hospital is set up in wards.  Normally they divide them by the reason you are in the hospital, like surgical, or baby, or whatever the long list is.  I happened to be in the respiratory ward.  Which actually kind of ends up as a catch all for people who are going in and out for tests and diagnostics which was the perfect place for me.

The ward I was in was Bay D 5. Now I'm not going to lie, the women who were in the ward with me were the best.  We had nurses tell us as much. There were six of us in there. We and a few change out in the two weeks I was there, but we shared a camaraderie.  We all needed help, so we looked after each other.  We chatted we helped each other and we became friends (most of us anyway) You always have one that is a complainer or sticks to themselves, but we didn't have anyone that was a major pain to deal with. 

Each bed had curtains that could be pulled around it for privacy for whatever reasons were needed. During doctor's rounds in the mornings the teams of Dr. would come in and pull the curtains, but really we could hear quite a bit.  Some Dr. were better about lowering their voices and others seems to think that the thin cloth was a total sound barrier.  In fact, I had one of my Dr's come in and fire off a bunch of hard things at a relatively loud voice.  When she was done, my nurse asked to see her and escorted her from the ward.  She gave her a royal chewing  and marched her back to my bed to apologize  to me for the display. After the Dr. left I told my nurse that is was ok.  But she wasn't having it.  I told her better for the Dr. to learn on me then on someone else, because for me it didn't matter, my ward mates knew what is going on and so you know, whatever. 

Because this is England, a trolley came around before every meal and at night that offered Coffee and tea and at night milkshakes (ie nesquik mix strawberry or banana ) and I managed to get them to carry hot chocolate for me.  It didn't take long before we all knew who liked what.  The one gal in the morning came in and asked me if I wanted milk, yep she got it.  We had random people on the trolley, and mine was the first bed so I always politely  declined.  If one of our ward mates was gone when the trolley came, we had their back.  We knew what they wanted so that they didn't miss out.  My favorite was the woman who was in the bed on the other side of the ward diagonally from me.  She was stuck in the hospital waiting for carers so she could go home.  She was a delight.  We would smile, I would share my chocolates with her and just supported each other from across the room.  She liked her sweets. The trolley would come around and it was always a big cup of tea with 4 sugars and she was very insistent.  

Because there were 6 of us, it was never dull.  We met their families as they came to visit and the friends.  We would find chairs for them to sit.  It was fun when most everyone had visitors and it was lively.  I think they were always interested in my visitors because they were so diverse.  I had my Uni friends come which are many nationalities (Greece, Japan, Indonesia, Czech Republic, Malaysia) as well as my flatmates.  One day my flatmate who is from Palestine brought me traditional Palestinian food for lunch and set a spread.  My bishop was there (who also brought some Nigerian food) and so we all ate rather well.  So here is a Palestinian Muslim, a large and in charge Nigerian, Chris and me.  The church ward members are also very international from the Philippines, Portugal, Zimbabwe, South Africa, Hungary and some who are actually from Britain.  It was always quite the international affair by my bedside. 

Not only were all the visitors entertaining but so were some of the nurses. In Britain you know who was what rank by the color of their uniform.  The ones in light blue with stripes were students. Straight light blue were basically a CNA, Light blue with a white piping on the sleeve and collar are a staff nurse - so they can do anything but meds.  Nurses in dark blue are senior staff nurses who are in charge of the ward. Sister nurses have a dark blue uniform with white piping. They are the charge nurse who oversees several wards. The the Matron is in dark blue with red piping who is the one who is over all of them.  We always waited to see who our next nurses would be because the dynamic would change based on who it was. So sometimes we waited with baited breath....  Some were great and right on top of things and others, well not so much.  The bay next to ours and the next one over as well were more trouble so sometimes we got a little forgotten.  One of the nurses was more like a circus when he was in.... but we had others that were just fantastic.  My favorite was Sister Cat.  (Catarina) She was on top of everything and made sure dr's were in line, scans were scheduled and needs were met. She kept everyone working and the ward running smoothly. At one point I needed to get in the shower, but needed help because pain was making it hard for me to move.  She grabbed my towels and pj's, said that the Dr's will wait, and took me to the shower.  Her help was so appreciated - plus she has long hair and understands.  We chatted and bonded.  As I came down the hall in my dressing gown she said, "here comes the bride." I guess she told Chris later that she has so many patients that she doesn't get to bond like she would like and it was nice to take time to truly help a patient. She is a saint.  Abby was my favorite staff nurse who also was on top of things and just knew what to say and how to help. She herself is a two time cancer survivor and could completely understand what I was going through.   I couldn't have asked for better care. 

I came to appreciate the fact that we didn't have private rooms.  I didn't sit by myself in isolation waiting for someone to come through my door. Instead we had people to talk to, people to look after, friends to make and stories to share.  It actually, I think, helps the healing and gives people support that they might not otherwise have.  I would not have changed my experience in the hospital for anything.  I hope I brightened other people's days and helped them on the road to recovery while dealing with trying to  find out what was going on with me.  In the end isn't that what life's about? 

Never leave home without your phone

Now, I'm a responsible cell (mobile) phone user. People know that they can get ahold of me and I don't leave it laying around or forget to take it with me.  It is my lifeline and link to my family and others.  However, the day of my GP appointment I was not exactly thinking straight.  I ran out the door without my glass, shoes in hand and when I got on the bus I discovered that I had left my phone in my room. Great. Well it's a 10 min appointment and 40 min bus rides, I'll be back soon enough and grab it, no big deal. Well, unfortunately for everyone else in my life, it became a big deal. 

The entertaining thing was that the Dr's kept asking if I would like to call someone to be with me.  I kept telling them yes, but I needed a phone book or something to look up the number because, well, all the numbers are in my cell phone... But they never did.  I knew I could give my friend my flat key and she could retrieve my phone..... but I needed the number....

In the meantime, my flatmate - who was worried about me - tried to call, facebook message,whatsapp.... she could hear my phone in my room, but didn't understand why I didn't answer.  

Meanwhile on the west coast, my kids knew I had the GP appointment and were all hoping I would have some kind of news.  They figured that by the time they woke up I would have texted them with something. But there was nothing.  My son tried to call, no answer.  An hour later still no answer.  In fact 3 of my kids tried calling but to no avail. 

By this time everyone was just short of panic mode.  My daughter in law decided to take the bull by the horns.  She went out onto my facebook page and found my flatmate and sent her a message.  She also reached out to my friends in the ward.  My flatmate was trying to decide if she should go down to reception and get them to let them into my room.  At my daughter in law's insistence they decided to see what they could do.  This is now about 11:00 pm.  It took reception  an hour and a half before they would open my door and they made my flatmate wait in the kitchen.  When they finally opened my door all they would say was I that I was not in there. So I didn't die in my room, but where was I? 

My friend started to call the police and then started calling the hospitals and found me in the Southampton University General Hospital. My son called the hospital and by now it's the middle night here.  They told him I was stable and to call back in the morning.  He set his alarm for 2:00 am. When he called again they wouldn't let me take the call down at the desk and the phone by my bed wouldn't work.  I was frustrated that I was so close and yet still had no contact.   My friend and flatmate came up, gave me her phone so that the kids could call, and took my flat key so that I could get essentials, my meds and my phone.  

When I finally got my phone I had a million missed calls and messages.  The first thing I did was send a message to the family chat, my dad and siblings.  We did a family call that I'm not sure was helpful because I looked a fright, I was not tracking well, in fact everyone thought I was on drugs, but it was just me. 

My German daughter when she realised what was happening, rearranged her schedule so that she could be with me for a couple of days so that I was not sitting there with no one.  Since it is only an hour flight from here to Germany she made it here in record time.  Her presence here was invaluable to me and I can never repay her sacrifice to be here. At home, decisions were made and my oldest son was on the next flight out to England to be with me. So after that first day I had family around me.  The overlap of a day between the two was needed and everyone felt much better about the arrangements and, well now, they could get up dates and know what is going on. 

Now everyone says to put on clean underwear (knickers) in case of an accident.  Really? Hum.... nope.  It's like american express- don't leave home without your mobile phone. The one time I did, well it didn't work out too well.  I apologize again for scaring the life out of everyone.  I never knew so many people cared, and well that's a good feeling. 

Taxi rides to the hospital

Well it has been an exciting week.  I guess it is to make up for the couple of weeks of boredom. If you want to follow the backstory you need to read the blog it's all in my head and all in the name of science. However I shall try to fill in the the pieces and ease people's minds as much as possible.  Besides, you get to see the inner workings of a British hospital, because well, it's not the same. 

So the weirdness just kept getting weirder.  I went from one infection to another. First it was a bladder infection and then I woke up with the gland in my neck super swollen.  I felt a tinge of so soar throat and just generally unwell.  I made an appointment the GP and went in to see him.  Now I have a couple of GP's I can see and this one happened to be the one who took me seriously. I was told I had tonsillitis and he started looking over my notes and asked me how long all of this has been going on.  He put me on a week's worth of antibiotics and order  blood tests.  

Now I'm naturally a clumsy person, just ask my students.  What I didn't realize is is how much worse I had gotten. I went to write some notes and I couldn't actually write. Odd, I thought.  I was watching the bunny, but I couldn't focus on my school work. I wrapped up in a blanket and just generally felt unwell.  Normally on an antibiotic within a couple of days I feel fine, but not this time.  I noticed that I had a hard time eating, general dexterity seemed to be gone and I couldn't complete my thoughts or sentences.  The concept just were not there.  Because this had all been gradual I didn't really take notice other than it was frustrating and well probably because I'm too bull headed to notice something just might be wrong. 

So my friends came back from holiday and I was back to my flat.  Now I had my GP appointment Fri morning and I was running late. Nothing was going right.  I missed the bus I needed and the next one would make me twenty minutes late.  I was literally  praying for a miracle.  I grabbed my shoes and my cardigan and headed out.  By the time I got on the bus I realized I had left my phone in my flat as well as my glasses. I got to the interchange and headed out. I was trying to walk fast but my gate was odd. It became kind of an odd jog. I was look for a place to stop, to slow down because I was feeling really unsteady. I finally just tripped and went down hard. There happened to be two chinese students standing there. I was disoriented. they handed me the phone because they had called 999 (911) and of course they were asking me if I needed an ambulance. Of course not, I just needed to get up.  The jubilee sports center was the building next to me and a couple of the medical team came out.  When they determined I could be moved, they helped me up into a wheelchair and took me into the first aid station to clean up the road rash on my face.  Instead of calling another ambulance, they called a taxi.  Not sure who paid for that.... and they sent me off to A&E. I quickly found myself admitted into A&E and one of the emergency room doctors very concerned that I was so disoriented. He quickly ordered a scan to see what was going on figuring it was because I had fallen and hit my head. 

So I was wheeled up and waited in line for a CT scan. I spend more time waiting for the porters to take me back and forth. In the meantime I couldn't get anyone to get me a phone book to call so that I could get my phone. I was finally taken back down to where they had me wait. The doctor came in with a specialist who was in charge of putting together a team of specialist.  A lot of information came at me fast and furious.  The CT scan was showing shadows that were worrying.  It appears that I have lesions on my brain and no way of knowing the primary source for it. So I was admitted into the hospital so that full scan from head to pelvis can be done as well as seeing the ENT team for all of the strange things going on with my tonsils. I was moved into a temp ward so that when space became available they would take me up.  (I'll explain later about how all of that works) About 11:00 I was transferred up to where I would call "home" for the next little while. 

So I never made it to my GP appointment and the miracle I asked for was the fall.  Because of it scans that needed to happen finally did. Slowly my dexterity is coming back because of the steroids they have me on. I'm thinking clearer and feel more like myselfish.  

I'll take time to tell you how my flatmate and family finally found me in the hospital. Working the hospital at this is the place heritage park prepared me for this oddly enough. I promise I will take the time to tell the stories. 

Know that I am being taken care of and the doctors are working hard to figure out all of the pieces. I feel the strength of your thoughts and prayers. Don't worry about me.  I'm the most stubborn person on this planet. updates soon. Stories are coming.  Life is an adventure and all things happen for a purpose. Find humor in everything and make someone smile today.