Hello wonderful people in my life,
I hope this update finds you all well and in no doubt in the middle of the change in the seasons. Its getting warmer here in London and the days are longer. Glad it not dark at 4pm anymore! Can’t believe we haven’t had snow here this winter. I think I was looking forward to it for some odd reason probably just another excuse to stay in bed!
Paris was wonderful. I went by myself and managed to cram a lot into the five and a half days I was there. I stayed within walking distance of the main train station Gaur du Nord so it was easy to get on the Metro and cruise around. I did so much walking which was great because it made me realise how I am healing and that my fitness is coming back. Compared to the trip to Portugal only two months prior my legs were much more co-operative.
Paris is such a big city and there is so much to see and do. Unfortunately unlike London everything you go to costs. Everywhere has some kind of entry fee. When it comes down to it I thought to myself “Am I ever going to visit this place again?” Probably not. I did three walking tours (like I did in Berlin in April last year) as I feel they are the best way to learn all about the culture and history of the city. I did the token Free City Walking tour, the Montmarte by night Walking tour and did one around the elaborate gardens of Versailles. Stunning. Inside the palace was even more impressive than I could have ever imagined. Climbed several stairs to see the city views of Paris from the top of Notre Dam, Arc du Triomphe and of course the Eiffel Tower. Went underground to the Catacombs and wandered around The Lourve. Got to see the Mona Lisa, Venus de Milo and wandered through Napoleon’s Apartments. Interesting fact for you all if you didn’t already know was the Lourve was originally a palace. Its massive!
While I was in Paris I caught up with the lovely Alice and Damien. We had dinner at a cheerful French restaurant and I feel like we got a real Parisian experience. The waiter we had was hilarious!
Speaking of food…..I tried snails. They were chewy! Kind of reminded me of eating mussels. Crepes (correctly pronounced Crap) were delicious and I was obsessed with Nutella and almonds as my filling. Yummmm! Plenty of croissants for breakfast at the hostel which were nice but after two days I couldn’t handle how rich they were. French onion soup was a winner as was a Croquet Monsoir which is basically a glorified version of a ham and cheese toasty.
At the Eiffel Tower, February 2014.
Getting back to reality was a bit of a shock to the system. I had to have three days off work due to cancer related appointments which was not helpful at all. The first Monday back was taken up with an Echocardiogram (Heart scan) which was done by a very good looking locum – hence the “Hot Doctor ALERT” status update on facebook. Then I had to see my oncologist. The results for my Echo were not the standard “great” so that was disheartening. A side effect of having chemotherapy and Herceptin is not uncommon for the heart muscle to be effected. My left ventricle has decreased by about 15%. I’m currently on blood pressure medication to build it back up and will be on it until either my next scan in three months or once I have completed my course of Herceptin.
For the bone scan I had to have a canulla put in my hand to have radioactive fluid injected into my system which takes about four hours to soak into my bones. This is so the scanner would get a better picture of my skeleton. I left the canulla in my hand so that later in the day when I had the CT scan the radiologist would be able to inject a special contrast dye. Having this contraption stuck to the top of my hand was annoying from the get go. As soon as I got into the lift I smashed the tap against a lady’s handbag and well that hurt ALOT. I wasn’t sure if I had knocked the needle out so had to get the line reflushed with saline to make sure the canulla was still working.
I had to go to the chemotherapy suite to get my Herceptin treatment but they wouldn’t treat me as they were not sure of any allergic reactions that may occur with Herceptin and the radioactive solution or with the contrast for the CT scan. So frustrating. Another day off work.
The bone scan was easy. I had to lie perfectly still for around 30 minutes. The CT was a different story. I needed to have contrast put through the canulla. Basically without contrast the CT will not be able to take a good picture so I had to have it. I’m not sure if it was because I’d had it in most of the day or because I had knocked it but when the radiologist flushed the canulla with saline it was so painful I almost couldn’t bare it. So a line was put into the crook of my left arm. They started with a saline flush which hurt but wasn’t as bad as my hand. When the contrast went in and it really really hurt. I’m pretty tolerant of being poked and prodded and stabbed but this was the worst pain I’ve had throughout this whole process. The reason for the pain was that the needle had popped through the vein and the contrast had gone into the tissue in my arm which cause a massive amount of swelling. Only 5mls had gone in. I had to have the contrast put through again for the CT to work. They went through my hand. Frustrated.
This was not a good day. So many things to get done and way to much rushing around. Worst day in a long time.
I decided to go to school the next day without my wig on. It was such a weird feeling and still kind of is. It’s still a little bit cold in London so I wear a hat when I am outside. The first time I take my hat off in a classroom I get comments including “Look she’s bald!” and the assuming questions of “Do you have Cancer?”. So for those who have asked I am now rocking the very short/bald do. I was so over wearing a wig and they were both starting to look incredibly manky and just horrid. What I really struggled with was the questioning looks and the equation that unfortunately is short hair = cancer. I have not felt this self conscious about something for ages. I am fine at home but out in public its a bit difficult. At least now I have a good 1cm of thick coverage so pretty stoked with the growth so far. My legs are back to their normal hairyness! Reminds me of uni days where the girls would threaten to hold me down and wax me against my will. Glad its growing back at full strength in any case. I feel a bit more used to it after having it out for the last two weeks. Kids are so inquisitive. “miss, I have noticed that your hair is all gone. Why don’t you have any hair?”. The most hilarious question so far seems to be “Miss, Are you a girl or a boy?”. Hmmm so only boys have short hair. It is clearly an odd thing for kids to see.
My fingernails have started falling off. Its not as bad as you would expect as the new nail has grown underneath the old nail. I have only had four come off so far but they will all come off eventually. I pulled off all my toe nails and the underneath layer of nail is pretty soft so felt a bit strange putting socks on and getting into bed the first night I took them off. I am putting almond oil on my nails every night to repair, moisturise and strengthen the new nail. Hopefully they will grow back quickly as they feel very weird at the moment!
Two weeks ago I had to have an appointment with Professor Tobias at University College Hospital in regards to my radiation treatment. The consultation went really well except for one thing. I was informed that I would have to have four consecutive weeks of radiotherapy, not the three that I had originally been told by the surgical team at the Whittington. I had worked out that I would have plenty of time between starting Radiotherapy and Easter so I booked a massive trip. Now I could have a clash. Felt a bit silly but managed to work everything out and start the radiotherapy earlier than originally planned. Unfortunately this meant only working two days that week so feeling pretty broke at the moment.
To get ready for Radiation I had to have another CT scan without contrast thank goodness. This CT is used to get imagery of my breast and line my body up with the machine that will be give me the required dose of radiation to kill off any cancerous cells that are remaining. The scan is done with me laying on my back with my arms above my head with a bunch of wires around my breast that are taped down so the area of treatment can be clearly seen in the images taken. There are green beams of light that come out of the scanner and project onto my body. Measurements are taken so the area that will be treated is lined up with the machine. Numbers that correspond to the machine are read out by the radiographers each time I am treated and I am lined up so the correct area is radiated. I am drawn on with marker pen at three points. In the centre of my chest and on both sides of my rib cage below my armpit. The green beams are lined up to these marks and I am told to lay perfectly still while I am moved slightly to get me perfectly in place. After the scan the radiologist’s mark my skin permanently in the three places where the pen marks are. I guess now I can say I have tattoo’s.
This week I started radiation. I’ve been lucky enough to be able to work and get late afternoon appointments so I go to the hospital straight after school and I seem to be in and out within 20 minutes. It’s the same deal each time. I go in take my top layer of clothing off. I lay on a bed that can been moved up and down and from side to side to get the correct placement. I have to have my arms above my head the whole time and I am moved into place. There are always two radiologists in the room reading out to each other my measurements. They draw on my with pen where my permanent marks are. The three marks on my chest are then lined up with the green light beams that come out of the walls above me, to either side of me and in front of me. A ruler projects onto my chest from the machine also. I am left in the room by myself for no more than 5 minutes and maybe slightly longer on some days if images need to be taken of my breast. The scanner first moves so its on my right hand side above me at an angle scanning the right side of my left breast. A light box on the wall flicks on when the treatment starts saying in big red letters RADIATION ON. It flicks off and the scanner moves to my left side just below my peripheral vision and then it starts again targeting the left side of my left breast. Pretty glad to bring my arms down once it’s all done. Jelly arms. The feeling I get afterwards is a wee bit hot or warm but noting to noticeable. It’s painless although the site where the tumor was cut out had softened before I started radiation and has now hardened up again. I am not supposed to wear any deoderant on the left side and I am meant to use soap that will not irritate the skin. It seems to be not to bad so far so hopefully it stays that way.
One week down and three to go. The first three weeks are to treat the whole breast, where the final and fourth week is to treat the area where the actual tumor was removed from. It is so nice to be in and out of the hospital with no fuss. To be honest I am getting a bit over having to have Herceptin but it is necessary as a preventative to stop and cancerous cells reproducing. I think I still have about nine rounds of that left. Slow going.
Just to add a little bit of first hand information about my surgery from Dom the med student who has been shadowing me throughout my treatment process…
My name’s Dom and I’m a medical student in London. I’ve been tasked by Jess to write up a bit of detail from her operation for everyone’s informed pleasure, as I had the good fortune to be present in the theatre at the time.
A little bit of background quickly. Everyone in my year gets paired up with a patient at some stage through their treatment process. We’re supposed to follow their progress and talk things through with them throughout their treatment. I don’t think I could have got much luckier than landing Jess. Just a small word on her, because I’m sure everyone knows this already, but I’ve been to a number of her meetings, was with her before, during and after her operation and had some good talks with her about everything. I don’t think I could picture anyone having a more positive outlook on things than Jess. Her matter of fact view about life and the way she takes everything in her stride never fails to amaze me, and she is a wonderful example to how everyone should live their lives.
Right, enough eulogising and on to some detail. Jess had initially asked me to take photos during the operation, and I managed to get one, although before I knew it I was being asked to scrub up by her surgeon Mr Tan and there I was, giving him a helping hand. I’m not sure how much gruesome detail people want here, but if it’s minimal that you’re after, maybe stop reading now! The obvious aim of the surgery was to remove both the lumps and any surrounding breast tissue so that they could obtain what are referred to as ‘clear margins’, meaning all the edges around the area removed are completely free of any further malignant cells. The initial incision was made around the nipple, approximately half the way round, with a scalpel. Interestingly this was the only time a blade was used. Mr Tan then needed to separate Jess’ skin from the underlying breast tissue and he did this using what I can only describe as an electric pen. A small metal tip on the end has a current running through it and this essentially burns through any tissue it comes in contact with, having the added advantage of cauterising the bloods vessels as it cuts through and so minimising any bleeding that would otherwise occur with a simple scalpel. Mr Tan continued with this ingenious piece of kit until he reached the two marking wires that Jess had previously had inserted to mark the location of the two lumps. From there, it was simply a case of removing adequate tissue at these locations to hopefully ensure clear margins on each side. This was double checked with a quick X-ray of the tissue to confirm that more tissue didn’t need to be removed. This is where my involvement really started. Mr Tan asked if I could stitch up the incision. Not to panic Jess (she already knows) but it was my first involvement in surgery and I feel honoured that it was on someone who I’ve had the pleasure to get to know. I placed approximately 15 stitches around the nipple, and that was operation over.
I hope those who might want to know a bit more detail find this interesting. I am just grateful to both Mr Tan and Jess herself for allowing me the chance to be there and offer a helping hand.
As usual I have been busy about London. Catherine and I made it to the Punch Drunk production of “The Drowned Man”. It is a very interesting piece of theatre where the audience follows the actors around a studio that is made up of many rooms across several levels of a building. Matilda the stage musical was INCREDIBLE. Another weeknight of fun in London. Last week a big group of us did a London Underground Treasure Hunt which was great fun. We had a sheet of clues and had to travel all around the central city rail network and then take pictures of the clues when we discovered them. There were three teams made up of our crew and we managed to get placed at 5th, 6th and 22nd out of 27 teams that participated. This weekend the weather was so lovely so Kate, Sarah Catherine and myself made the trip out to Hampton Court Palace to get some culture. This palace was where King Henry VIII lived so it full of amazing history. The gardens were stunning to especially with all the daffodils that are out. Today the weather was even warmer. A group of us dressed up as Where’s Wally and walked 5kms around Victoria Park in East London to support the National Literacy Trust. Such a beautiful day!
Amongst the Daffodils at Hampton Court Palace and the front of the palace itself. Three months post chemo.
The National Literacy Trust “Where’s Wally” Fun Walk at Victoria Park, London – Sunday 16th March, 2014
With Sarah, Kirsten, Me, Imogen, Kate and Catherine.
Kirsten and I at the start line.
I have been trying to write this email over the past week or so and it has been a bit of a chore. The last few weeks have not been the greatest but I hope with the weather getting nicer that things will improve. To those of you who have emailed, messaged and sent me treats thank you so much. Tina the book, bracelet and card you sent was just wonderful, thank you.
I have my good days and my bad but at the moment most of them are good. It feels good to know that I am on the road to recovery and that I feel fitter every day. It is so weird having hair! I was so bald for what seemed like forever. I am glad that my body is healing and I am getting back to normal – whatever that is meant to be! I feel truly blessed everyday to be here and have such great people around me and in my life. I hope you all value what you have. Try not to take it for granted.
Love and hugs,