Happy New Year! I hope you all had a wonderful Xmas and New Year break.
The time between updates seems to go really fast so again I am feeling like a slacker. Every time I go to write one of these novels I am amazed by how much I manage to do and see in a month. I get to about three weeks and I start thinking to myself better get another update started or I am going to get hassled! Haha. Love that so many of you enjoy what I write. Not only does it help you all understand what I am going through it also helps me processes and reflect on my experiences and be positive about them. Writing truly has been a god send and a wonderful coping mechanism to deal with my cancer and everything that has come along with it. Again thanks to you all for the kind words of love and support.
I decided not to do the standard Xmas card letters this year as I felt that the monthly email update was probably enough. Did feel a bit odd not doing it though!
The last month has been pretty busy….
Leaving the Oratory was emotional. It was a really tough decision to give up the position I had teaching Art. It was so funny to see how quickly gossip spreads in a boys school after I told a couple of my Year 7 / 11 year old student’s I was leaving. I had a really lovely send off along with so many lovely hand made cards and a few treats. A big thanks to Fiona for all her wise words and amazing support while I was at the school.
Chemo #8 was a pretty simple process as per usual and I so stoked that I don’t have to do it anymore as this was my last session. The side effects were not to bad either until we had been in Portugal for a couple of days. I’m not sure if it was the rock hard bed in our apartment, too much walking or chemo that was making my legs ache like I’d played too many squash games. My legs were so tight and still are that bending down, putting pants and socks on is quite challenging haha. I’ve tried stretching my quads and it hurts to bend my legs back. Probably doesn’t help that on the last day of school I tripped over and smashed my right knee. Its still not right and as my body seems to take longer than normal to heal. Exercise and stretching seem to be the best medicine. After all the walking I have been doing to and from school I am feeling a lot better and I feel like my fitness is slowly coming back. Ran up the tube escalators yesterday for the first time in ages! My fingernails still feel very odd but my hair is growing back. Imogen loves to give me heaps first thing in the morning “Aww you’ve got bed hair” very entertaining! I am also less puffy especially in my face so glad that the fluid retention is calming down.
I had a really lovely Xmas and New Years in Portugal. Kate, Sarah, Danieka and I flew into Faro on Sunday the 22nd of December – Two days after my last round of chemo. We hired a rental car and made our base for five days in Lagos which is in the Algarve region of Portugal at the southern end of the country.
As Portugal is typically a summer destination Lagos – which is right on the coast was pretty dead. We had a good look around and did manage to see an older woman in a bikini taking what we had all agreed as her daily dip in the ocean to prolong her life. Brrrrr! The beaches in Lagos were really nice and lined was with cliffs. The streets of the old town were narrow and cobbled, there was no shortage of beautiful tile work on buildings that had been worn down by the weather over the years. Lagos is where we started our Portuguese Baked Goods diet. Every day we would find ourselves sniffing out delicious cakes especially the delectable Pasties De Nata which can probably be called a custard tart in simple english. Even though we ate a lot of these on a daily basis we would choose 4 or 5 cakes and split them into four and try a bit each. We also ate octopus and sardines (which were out of season so were not so great) and sampled some local vino. Green wine is definitely worth a try!
We did road trips from Lagos to Faro, Sagres, Luz and Monchique. We had gorgeous weather the day we went to Sagres. There is a giant fortification right on the coast. We had a lovely walk and made the most of the nice weather to do some “jump shot” photography. Was nice to be in the sunshine.
Xmas day was delightful outside the weather was not so great. We went to the beach and both Sarah and Kate managed to get there feet wet. I of course took the responsibility of taking the photos. Too dam cold for me to take my shoes off! Then it bucketed down. On Xmas eve we went to a local market and brought fresh fish for dinner that night and a prune stuffed pork roast for Xmas lunch. We ate a lot that week and played a lot of cards. We all spent a good portion of time being in food comas.
Lisbon was our next destination. The city is a 3 hour train journey from Faro. The countryside is pretty flat with rolling hills and is pretty green and lush at this time of year. We entered Lisbon on a giant bridge that reminds me of the Golden Gate bridge in San Francisco (somewhere else I have to go!). Standing watching over the city was a giant statue of Christ. Much like the Redeemer of Rio De Janeiro. We stayed in a lovely hostel right in the centre of the city not far from an underground station. We met with Natasha in Lisbon and Sarah left us in Faro to make her way back to Scotland for New Years. We had some idea of site seeing in mind. We constructed our own Lisbon pub crawl which was cheap and entertaining. It saw us sample the narrow streets and the atmosphere of drinking in tiny bars that sell drinks in plastic cups so you can consume as you wander the streets. Amazing Mojitos and Margaritas! Day trips involved catching the tram out to a famous monastery and stunning church. We got some world culture at the Museum of Modern Art and strolled along the waterfront. Beautiful blue skies then boom more cakes haha!
Our big touristy day saw us catch a train 40minutes outside of Lisbon to Sintra. Home of the palaces of the royal family. The views from the Pena National Palace were amazing however the walk up the hill saving us €2 each was not! By this point after all the walking we had done my legs were aching badly. At one point Kate was behind me pushing me up the hill. It’s weird but I felt so useless not being able to keep up. I’d walked up hills exactly the same in the past without any trouble and now I just couldn’t. That was a pretty shit feeling. When you are normally so fit and agile and then the gas tank is beyond empty sucks. When we got to the top we wandered through the palace which has been set up as a museum. We also got to experience a beautiful estate named Quinta da Regaleira which is home to a very stunning garden and palace. It was so amazing we got to wander through caves and climb cute little towers. The one thing that I though about this beautiful place was that it would be an amazing place for a wedding. Both Pena and Quinta da Regaleira are World Heritage Sites. If you want to check them out definatley google. Amaze!
We did the token city walking tour and while exploring the city by foot we learnt some cool facts about Lisbon. It was a pretty rainy day so it was’nt the greatest weather to be wandering around but we had to get our dose of culture one way or another! We even tried the famous Portuguese liqueur Ginjinha which is served in a shot. Its made from Ginja berries which are more or less sour cherries. New Years Eve was pretty uneventful, apart from initially loosing Natasha in a crowd! We had a few drinks at our hostel and made our way to the main square to take in the fireworks. There was no countdown which we found slightly strange so we had to all decipher when the new year had begun. We spent the rest of the evening in a selection of tiny little bars singing aloud, drinking and wandering the small cobbled street of Lisbon.
Three weeks have past since I started work for the year. I am back doing day to day supply work and have been getting work pretty easy so far. One agency seems to pre-book me so that’s really good as I can figure out where I need to be and don’t need to call in at 7am in the morning, so I get a bit of a sleep in. I have done a couple of secondary days but have been doing mainly primary. I am really enjoying it. Secondary was if I am perfectly honest destroying my soul! I clearly care too much (which I have been told since I got to the UK) because I feel completely deflated after I have been in a high school without any planning and students who have no drive to learn. I was in a school last week that was a PRU – Pupil Referral Unit which was for boys who can’t cope with the main stream schooling system. There were only 20 students at the school so there is more one to one focus and the classes are a lot smaller than normal schools. These kids have a raft of behavioural issues, learning difficulties often have statements (mental illness diagnosis including ADHD, Autism etc) but can also have problems that have resulted from rough upbringings. They are so angry at the world. You really have to pick your battles with these kids. Primary has been a really nice relief! I have had some really nice schools and one I keep getting called back to so I am starting to establish a few relationships with the staff and students. The best thing is it is not too far from home – about a 30 minute bus ride. It’s nice to turn up to a school with planning and students who want to impress you and actually do the work. It’s refreshing! Definitely missing my GEIS kids and crew.
London as always has been good to me too. There is no shortage of things to see and do. We made it to the National Gallery to get some good culture and then checked out Five Guys in Covent Garden , amazing burgers and fries. An entertaining evening with Kate, Sarah and Smash playing “Drink Roulette” with the refill your own cup drink machine. We managed to get a group of us together to go to the Hilton in Angel for a delicious buffet Champagne brunch which was awesome! You’ll find that I seem to spend all my spare time eating while trying to get a wee bit of culture. Had a lovely visit from Kirsten and we checked out Bubbledogs which is a Champagne and Hotdog bar – delicious hotdogs and classy champagne yummmm! Last weekend a group of us had Yum Cha and took a walk along Regents Canal it was a beautiful Sunday. The weather here has been lovely. Even though it is cold it has been mostly sunny so have not had too much to complain about weather wise. After the canal walk Sarah, James (our new flat mate) and I attended the London Art Fair at the business center in Angel. Basically a good portion of Art Galleries in London culminate together to put on a show of all the great art the city has on offer. As per usual the Art was varied and interesting. A bit guttered that we were unable to see the Silver Ferns play England on Monday night. We were able to watch it on TV though and eat pizza so all was not lost…..Thanks Katrina!
Things to look forward to in the next few weeks will include Infernos dressed in a onesie for Australia Day, the Waitangi Day Pub Crawl (more costumes coming watch this space), a Transport for London Treasure Hunt, Seeing Mr Jude Law on stage as King Henry V, another West End show Billy Elliot and I am heading to Paris for the half term break from the 16th to the 21st of February. In between all that I am sure there will be other things to look forward too!
It’s been a bit of a crazy last few weeks so I have been holding off sending this update while I go to appointments to gather all the correct and necessary information to be able to inform you all properly about what is happening in terms of Mr Lumpy.
As soon as I got back from Portugal I had an ultrasound to see how much the lump had shrunk. Good news is that it had come down another 5mm since the last scan back in October and had shuck more than half the size since I found the sneaky little bugger back in June. So, when it was first found an MRI confirmed that Lumpy was 30mm/3cm that’s the total mass. At the middle point of my treatment in October it was at 16mm/1.6cm. This was when Lumpy #2 was discovered – which I have recently been informed that it could have been apart of the original mass and that the chemo had eaten away the infected tissue to show two lumps instead of one. Who knows! Lumpy is now 11mm/1.1cm with a smaller area that has been consider as a satellitte lesion (Baby Lumpy / Lumpy #2) and my breast is now a lot softer that what it was. I have been told that my response to the Chemotherapy has been really good so pretty happy about that.
So surgery is all booked in and ready to go. This Thursday the 30th of January is see you later cancer day!
There have had to be some big decisions made in regards to surgery. What you are about to read is something I have known for awhile but I didn’t think it was necessary to bring it up until now. Back in July after I had been diagnosed, I had an operation to remove lymph nodes from between my breast and armpit. This is what gave me a blue breast (smurf boob) and yes it is still blue! The procedure called a Sentinal Node Biopsy took three lymph nodes and one of the three was found to have cancer cells in it. The infected node had cells growing inside and outside of it. In the pathology report it is called a Metastatic Carcinoma – this is bad cancer. The situation here was that the cancer had spread beyond my breast and was traveling through my lymph nodes.
There were surgical options I had to consider. Basically I had to decide whether I wanted to have all my lymph nodes removed. The procedure is called an Axillary Clearance (your armpit area is called the Axilla) in which the lymph nodes are surgically removed from this area. There are about an average of 20 sentinal nodes in this area. For those of you I have no spoken to your lymphatic system is basically a giant drainage system that deals with draining excess fluid from tissue. Pulling out this system can lead to a number of complications including numbness, reduced mobility, and in the worst cases a condition called Lymphodmia which causes swelling and excess fluid build up. My surgeon discussed this with me and came from the perspective that it was a very old school approach to pull all the nodes out. Unfortunately there is no way to tell what the extent of the spread of cancer is without taking them out, chopping them up and putting the nodes under a microscope. The dumb thing is once they are out you can’t put them back in. So, do I leave them and risk the possible return of cancer or take them out and have to deal with a long list of other side effects that could effect the mobility of my arm for the rest of my life.
As you could imagine I was stuck as to what to do. I did a bit of research and discussed the procedure with ladies that had breast cancer and had had the clearance done and generated very interesting discussion on Shocking Pink – a private facebook group for women who had been through or are going through breast cancer. Some ladies told me about the side effects they suffered as a result of having the nodes removed while others were lucky enough to have mild or no problems at all. Some had all there nodes out to discover there was no cancer to be found, while one said she had 24 nodes removed and 12 were found to be infected so clearence was the right option for her. There was also a member of the group who was in a similar pickle to me (had one node infected out of 4) and did her research and opted not to have clearance done and has regular ultrasounds to make sure she is clear. I was given information on medical research that has been done over the past few years in regards to this procedure and the comparison of those who had clearance done and those who did not and the survival rates are pretty much aligned and in the 80% region, exactly the same.
It’s good to hear other people’s perspective in situations like this however there are so many things you have to consider when reading someones experience. There are so many variables in terms of cancer as no one ever has the same kind. What is the stage? (size), what is the grade? (growth rate), how aggressive is it?, has it spread? what is it’s genetic code? had the primary cancer been removed with surgery before or after treatment? had treatment been completed? So you could never make a decision based on this for you!
It’s a very big “what if?” question. Again I was the topic of discussion at the MDT meeting of all the surgeons, doctors and nurses at the Whittington. It was decided if I did not want to have the clearence done then I would have to have Radiotherapy on my armpit (and my breast) which according to recent studies is also just as good as having the nodes removed with a decreased risk of similar side effects as clearance. I have to do something and this seems to be a better option. I will have to however have regular ultrasounds which I would probably be doing anyway so glad to have been able to come to some kind of conclusion on that. I will be seeing a doctor about Radiotherapy in the next couple of weeks so watch this space.
As surgery is finally booked in I am happy to be up to another part in this journey – it has gone so quickly and I have been though a lot to get up to this point. The last couple of weeks I have questioned my surgeon about the procedure he was planning to use to cut out my cancer. I was going to be having a Round Block Mammoplasty. In this procedure the surgeon basically cuts around the nipple and kind of dissects the breast to mobilise all the tissue. The infected tissue is then cut out kind of like a wedge (think of the breast like a round cake). The two edges where the wedge was removed are then connected together creating somewhat of a lift. Now I don’t want to sound all amazing or anything but I think I have really nice breasts! and they sit up just fine without any lifting. They are also small and in most cases this kind of procedure is used for women with very large breasts who want a breast lift. In breast conservation situations it is used for those who have larger cancerous tumors and in some cases depending on how aggressive the cancer is often surgery is performed before treatment commences. When I first got diagnosed and they realised the size of my tumor was to large to be removed in relation to the size of my breast (it would have left me with a large dent) it was discussed and decided that I would first have chemotherapy in order to shrink the lump and have surgery after treatment to conserve my breast to achieve the best surgical outcome. In this case a Lumpectomy was put on the table – this is when the tumor and some of the surrounding tissue is removed. I have an appointment with my surgeon this week on Tuesday so I will let you know what happens with that.
So I have a big week ahead. Looking forward to getting lumpy cut out. Can’t believe that in a couple of days it on the 28th of January it would have been a year since I arrived in London. What a year it has been. I’m glad to be alive and I am glad that I have all of you supporting me. I hope 2014 has a little bit less drama for me!
I hope this update finds you all well.
Love and hugs,