Update from Jess #1

This is the first update sent by email to family and friends on Thursday 25th of July, 2013.
I have a thing for posing on chairs in hospital gowns!

I have a thing for posing on chairs in hospital gowns!

Blue dye is injected into the edge of the areola under the skin and tracks through the lymph nodes up to the Sentinal nodes. It colours them so the surgeons know what to remove.

Blue dye is injected into the edge of the areola under the skin and tracks through the lymph nodes up to the Sentinal nodes. It colours them so the surgeons know what to remove.

This is me :) x

This is me đŸ™‚ x

Hello wonderful people in my life…..

It has been 6 weeks since my Breast Cancer diagnosis.

To each and every one of you a massive thank you. All the texts, phone calls, messages, emails, cards, postcards, catch ups, care packages have all been amazing and are keeping me going. The support has been incredible and I can feel the good vibes, positive thoughts and love coming from all corners of the planet. I feel very blessed to have you all in my life.

To those of you that emailed that I have not yet replied to, apologies. I’m usually pretty good at responding and as I am sure you can understand life has been crazy busy the last few weeks. Please know that your messages are appreciated and mean the world to me and I will get back to you at some point soon.

Time has gone so fast I currently feel like my head is completely up my bum! I was busy before but now my schedule is out of control.

In the last month I have had internal scans, multiple blood tests (my veins in my arms are not happy!), injected myself with IVF drugs, had a marker clip inserted into my lump, had radioactive dye injected into my breast, had an echocardiogram to check my heart and had two surgery’s where I have had to go under general anesthetic – a sentinal node biopsy and egg extraction. All of this in between working, sight seeing and socilising makes for a very busy Jess.

So to update you all……

One of the biggest things for me in this whole process is conserving my fertility.
Unfortunately there is a 50/50 chance of loosing all fertility and this is for anyone who undergoes chemotherapy. On the positive side though there is a good chance that due to my age and healthy lifestyle this may not happen. In saying that I do want to have children at some point so want to protect my chances and in order to do that I have had to go through IVF treatment in order to stimulate my ovaries to produce more eggs to get them frozen. Injecting myself with the treatment drugs was not as bad as I expected (into my thighs and stomach) and I was not as loopy as I thought I would be either – there were a couple of “emo” moments but no tears so well chuffed with that effort! On Monday I had the eggs extracted. They managed to get 10, 8 of which were viable and will be frozen in case I need them at a later date. 5 were mature and 3 were immature which will mature once thawed. If I did need to use the eggs at a later date to create embryo’s then the chances of conceiving are not high (around 20%) but that is better than having no chance at all if I don’t do it and go into early menopause. I was a bit disappointed that I didn’t get more eggs but I am trying to think quality not quantity.

On the 11th of July I had a Sentinal Node Biopsy. This biopsy was to check that the cancer cells haven’t spread into the lymph nodes towards my armpit. I had to get a radioactive dye injected in to my breast (which hurt! and came with a really intense fast rush of heat – It’s really hot! It’s hot!) so they could track where the lymph nodes are. I had to lay in a scan machine and I was able to watch the dye moving from the injection site on the edge of my nipple up into to my sentinal node on a computer screen. Was pretty cool to watch.

I went into surgery and was injected with another dye which turned my breast blue. This dye goes through the lymph nodes and colours the sentinal nodes blue so the surgeons know what to take out. Yesterday I was told that one out of three of the sentinal nodes removed was infected. I kind of expected that the cancer may have spread. I think the important thing to stress here is that this will not change or effect my treatment plan. It will not be more intense than it is already going to be. The only thing is that when they go into remove the infected tissue around the plastic marker clip after the chemotherapy shrinks the lump down they will either remove the some lymph nodes at the same time or not depending on how I have responded. So it will be the one surgery in a few months time and something not to worry about until later. My breast will stay blue for up to 6 months. It has faded a bit but it’s still a nice shade of poweraid blue!

Last week I went and tried some wigs on. I also went and had a fringe cut into my hair figuring that that if I have to wear a wig then it would look better with a fringe. Amazingly the wigs are incredibly discreet and look so much like normal hair you can barely tell you are wearing one! I was flawed by how great they looked. I am going to cut my hair this week which I think is going to be hard as it’s going to make all of this a bit more real. I’m going back to a bob which suited me a couple of years back so shouldn’t be to traumatizing. With the wig I will go for will be a blonde bob and have a fringe cut into it.

I saw the Oncologist (Chemo Doctor) last week and I will be starting Chemotherapy this Friday – the 26th of July. Since we have discussed that Chemo Day will be on a Friday then that’s when I want to start it. It will be 8 rounds total (I think I had previously said 6) one round every three weeks. I have figured out all going well that my last session will be the 20th of December so hoping to get the bulk of the treatment wrapped up before Christmas. The day before I have Chemo I will need to have a blood test to check my white blood cell count has recovered if it’s low I have to wait for it to get back up before I go another round. After Chemotherapy is over I will have to have Radiation Therapy everyday for up to a month. It’s meant to be pretty quick session – only a few minutes and the side effects are nothing like Chemotherapy so that will be good and should kill off any remaining cells the chemo doesn’t get. That’s a wee bit down the line. I will start the drug Herceptin on my 4th round of Chemo and have recently discovered that it is now funded in New Zealand which is fantastic news for women at home living this. In New Zealand statistics show that only 1 in 4 women have the HER2 Positive strain of breast cancer that is able to be treated with this drug (which is meant to be one of the best). So only 25% of people can take it.

Check out the link to understand a bit more about the strain of cancer I have and about Herceptin:  http://www.herceptin.co.nz/

I’m going to cut my hair off so that it is not as bulky and I can try scalp cooling. I’ll have to wear a funny looking cap similar to a jockey’s helmet or large padded swimming cap that freezes the scalp and stops the Chemo going to the hair folicals. I have heard of some good results so I hope it works for me. Obviously it works for some people and not so well for others but i’ll give it a try. Because my hair is fine I should have a pretty good chance of it working if not I will try out the mullet, a mohawk then shave it off. Then i’ll have my wig so not to worry. Click on the link and check out this article so you can see how scalp cooling works.

I had a few dramas with travel insurance. I got an email from the travel insurance company after I had contacted them to cancel all my flights and tours that I had booked for Summer. I should currently be in Turkey with my lovely friend Kate. The email was blunt, full of lies (about payment requests from the UK) and assumptions about me, my support network here in the UK and how difficult things will be. Even my medical team at the hospital were stumped by the way another medical professional could be so inconsiderate. Basically without hearing my side of the story they advised I should return to New Zealand immediately and would be ceasing all cover relating to my current medical condition. I made a complaint and am currently waiting to get reimbursed for all my lost expenses. I have been told that I am covered in general when and if I travel until the end of March next year – just not for Cancer related stuff. Need to read my policy a bit more to figure out what I am entitled to. Annoying!In any case this travel insurance pulled up some other red flags. There was some concern over my visa status and what NHS funding I would be entitled to so that was looked into by the Overseas Visitor Manager at the Whittington Hospital where I am having treatment. Normally on the work visa I am on you have to be in the country for 1 year to receive full NHS funding. Luckily though the Department of Health states that if you have been in the UK less than 6 months (which I have) but have made an effort to make a life here and are “Settled and Ordinarily Resident” by paying tax, National Insurance and working then you are exempt from any charges. There is an agreement between New Zealand and the UK called the “Reciprocal Healthcare Agreement” that would cover and “life threatening and critical emergency care” so if I needed something fast then it would have been covered under this agreement. It’s these kind of situations that you find out a lot of things! Glad to know that everything is sorted.I went and spoke with the recruiter that got me the job at the school at which I will be teaching Art at come the beginning of September. They were incredibly supportive and want to help me do what I want to do in this situation – continue to work and lead life as normally as possible.
I ended up going to the school and had a meeting with the recruiter and the deputy headmaster last week. I informed them of my situation in which I was very up front and honest. I wanted them to know that I am taking things day by day and that I can’t predict how I will react to treatment. They too were extremely supportive and like the recruiter want to do what is best for me so very happy with the outcome of that situation. Looking forward to September.In September I have signed up to do a half marathon – don’t worry I will NOT be running! It is called Shine Walk for Cancer Research. It is a night walk around London and should be great fun. It is on Saturday the 28th of September. Those of you who are in London should sign up and come join (I need a group of people to potentially carry me across the finish line!).

Sign up by clicking this link! http://shine.cancerresearchuk.org/

It is 35GBP to participate. For those of you in NZ and other places around the globe please do donate it is a worthy cause and currently I am benefiting from it so would appreciate your input.

Here is the link so do please check out my profile: http://www.justgiving.com/wellerjess

Mum is coming over to London mid October for 4 weeks to look after me so that will be nice to have her here. Will be good to do some looking around London the UK while she is here too so that is something to look forward to. When Mum arrives I will be right in the middle of my treatment which is meant to be the toughest part of the process. Trying not to think to far ahead but glad she will be here.

So life of course has been pretty hectic. I had a photoshoot today to get some nice pictures of myself. Despite the fact I have been so busy I have still managed to do some work and still kept some tourist activity going. We made it to Wimbledon and were 8725 in the queue at 7am on the first Saturday that the tournament was running. We didn’t get in but made the most of a sunny day and had a 5 hour picnic in Wimbledon Park which was delightful. We sat there along with the thousands of others trying to get in to see the tennis. I’d recommend going to the Australian Open in Melbourne – no queues! After seeing no tennis we made it to Crystal Palace for the rest of the day so live music, good food and great company were amazing. Have been to Kew Gardens – the Royal Botanical Gardens which are massive and so stunning and we were able to hear Leona Lewis do her sound check for a concert the same evening, Greenwich to the Saturday markets, saw the Cutty Sark, The Royal Observatory and The National Maritime Museum. Had a day at Victoria Park which was fantastic – sunshine and a large dose of vitamin C, BBQ’s and a splash around under the worlds biggest sprinkler! Went to the V&A Museum for the second time to see a special viewing of the David Bowie exhibition which was awesome. Made it to the Isle of Wight this weekend gone. Was a stunning place. Fantastic sea views and great air conditioned buses! which we saw the Isle’s sights from. Made it to the West End show Book of Morman last week. Oh my goodness…..hilarious but soooo offensive. Worth a look for sure. The Lion King is on the cards for September.

I have had visit’s from some of my wonderful friends. Hollie, Mick, Sarah Jane, Kirsten, Carl, Marissa, and Andrew. Looking forward to seeing Elle and Rob, Gemma, Megan, Violet, Jason and Mira in the next few weeks.

Just want to share with you some of the lovely things people have said to me in their messages…..

“This is very serious. Drink Green Tea”
“Yes I got your email. I had to take a week off work to read it”
“You are honestly one of the most powerful (and the feistiest) women I know”
“You are my inspiration and I want to live my life right, starting now!”
“We are all cheering for you”
“What I can say is if anyone can beat this you can! & you will. I have faith”
“I have no doubt you are going to have many more amazing adventures too and that you will get through this, because I know one thing about Jess Weller: she is one tough cookie!”
“Your amazing!! You’ve been the strongest of us all”
“I know you will fight and kick ‘lumpy’ in the ass!!!” “You are one of the strongest (and stubbornest) people I have ever known and I absolutely have no doubt that you will get through this and be out the other side”
“I can only imagine home feels so far away right now but we are all behind you”

This is what makes life worth living – the love that I have in my life from all of you.
Being positive and optimistic has so far been easy. I’m not going to lie, I am not looking forward to treatment but needs must. Life is too precious to muck around. Glad I am dealing with this fast and getting it sorted.

I want to leave you this great quote that my lovely friend Ana sent to me…..

“I have heard there are troubles of more than one kind. Some come from ahead and some come from behind. But I’ve bought a big bat. I’m all ready you see. Now my troubles are going to have troubles with me!” ― Dr. Seuss

Love you all, thank you so so much for all your kind words of love and support.
Chat soon.

Jess xxx

My Sad News…..Explained

This was sent via email to all my friends and family 2 weeks after my diagnosis on Monday 24th of June 2013.

Hello wonderful people in my life,

I hope this finds you well. Unfortunately I have some sad news to share…..

This is not an email that I ever thought I would have to write. I hope that I never ever receive one.
To those of you I have spoken to thank you for all your love, kind words, never ending support and advice.
To those of you that I have tried to contact without success and those who have heard through the grapevine, apologies.

Two weeks ago today I was informed that I have Breast Cancer.

As you can all imagine, I was both shocked and extremely guttered and I felt like I had just had my heart ripped out of my chest when a specialist I had only met the week previous sat down with me in a hospital room and broke the news to me.

I have repeated the same story over and over in the past two weeks and to those of you who have listened thank you for taking this weight off my shoulders it has helped me get through. Talking about it has been the best thing to understand it, deal with it, and be positive about the future.

From the beginning…

About a month and a half ago before my last period my breasts were unusually hard and lumpy. They were so hard that I found it painful. I am not one to get period pain or much breast tenderness so I knew something was amiss.
It was my left breast.
I had to get registered with a doctor so I made the appointment to see a nurse to get registered – which was two weeks later. A month ago today – Friday 24th May.
A doctor was avaliable to examine me and commented that there was lumpiness in both breasts but she said that she could defiantly feel a harder lump in the left breast. She said “It could be nothing but we refer as many people as we can, because if it is something suspicious the NHS can get into a lot of trouble if we don’t act”. She told me not to worry and that she would refer me onto a specialist and that a the hospital would contact me within two weeks to make an appointment. I got a call for an appointment the following Thursday (30th May) while I was in Vienna, Austria. First appointment with a specialist was the following Monday morning (3rd June).

The appointment was at Whittington Hospital which is only 20 minutes away from where I am staying currently on the overground to Upper Holloway. Archway is the closest tube station to Whittington for those of you who know London.

The consultant I saw was Dr Patkar. I had an examination where both breasts where checked and he noted that in my left breast there was a lump between 2 and 3’o clock to give you an indication of placement. It is quite close to the center of my breast so just beside the nipple and feels almost like a knot of tissue or soft gristle.

I was referred to the imaging department for a ultrasound and if the lump looked suspicious or unreadable then I would have a biopsy. Dr Crooks the consulting radiologist did a scan of both breasts and showed me what was hiding in my left breast. Breast tissue is normally very dense so anything out of the ordinary shows it self pretty well in a scan. The image she showed me looked like a sea of grey matter full of speckly bits. Right smack bang in the middle of it was a big black spot which to me now that I think about it resembles a squash ball. She said don’t be alarmed it looks big but its around the size of your thumb nail. Due to the fact the lump was so dark I had to have a needle biopsy then and there. I had local anesthetic so I couldn’t feel a thing which was big because the needle was MASSIVE. They extracted a couple of bits of tissue to be tested. I was a bit sore for a couple of days and the bruising was pretty epic but it was fine.

I had to wait a week for results. Life as normal.

Monday 10th June. Another day off and an anxious feeling. I was sitting in the waiting room for ages. Then I got called in. In the room was a student nurse, Dr Patkar and a Senior Breast Clinical Specialist Nurse, Vivienne – who is originally from Auckland. I sat down and before I knew it I was in tears. “The results have come back showing that it the lump is defiantly cancer”. I think at that moment I could’nt hear anything It was like loud sirens or screaming going off in my head. That’s what I feel when I tell someone the news. It’s an awful feeling. I had Dr Patkar with his hand on my knee and Vivienne comforting me – so this made me feel like I was with very good people. To have a fellow Kiwi as my contact to the surgical team is just awesome. I was told that my age, fitness and healthy lifestyle are in my favour and that because I had listened to my body I had caught it early.

The classification of the cancer was Grade 3 / Stage 1  (Under 2cm) the actual size of the lump was approx 1.7cm (17mm).

A raft of questions came spilling out of my mouth: Will I still be able to have children? Can I have the lump removed? Am I going to have my breasts removed? How bad is it? Have I caught it early? Am I going to have to have treatment?. I can’t really remember exactly what was said but I just felt like I had been thrown under a train.
Yes we can refer you to a fertility specialist, Yes we want to remove the lump as soon as next week and will not have to remove your breast, Yes you have caught it early, Unfortunately yes you will more than likely have to have treatment – Chemotherapy and Radiation.

I was referred upstairs for a mammogram where Dr Crooks came and saw me after the scans had been looked at. She knelt down before me grabbed my hand and said “We have got this”. She informed me that the mammogram had taken a good set of images and that there would be no need to do an MRI. I went back down to see Vivienne who spoke to me about all the things we had discussed in my results consultation, what the course of action could be, fertility and treatment. I went home with a bag full of books and leaflets on “Breast Cancer”.

I cried a bit that afternoon. I did a lot of reading, then i’d cry, then I would read some more.

I got a phone call two days later and had to go for an MRI. Dr Patkar told me over the phone that the lump was bigger than they originally thought and that they wanted to get more information to check the size and to see if the cancer had moved into my lymph nodes. MRI was the following day (Thursday 13th July). That was an interesting, clunky, loud experience. I would compare it to a mixture of the worlds most annoying truck reversing noises that goes on for 20 minutes!

Another results day (Monday 17th) Kate accompanied me. So, there is good news. The MRI has shown that the cancer has not spread beyond the breast although we will still want to do a Sentinel Node Biopsy to remove some of the lymph nodes just to double check that they are clear of infected tissue. The not so great news as we thought after having a closer look at the mammogram and why we decided to go ahead with the MRI in the end is that the lump is 3cm (30mm). So the Stage had changed up a level to 2A.

So, I was due to have the lump removed on the Thursday (20th May) but due to the fact the lump was a lot bigger than first thought the plan of action has changed.

In the next 4 to 6 weeks I will go through fertility treatment and get my eggs banked. I have an appointment tomorrow so currently don’t have much info. I have to do this before starting any treatment. Even though statistically for my age there is a good chance that I will still be able to conceive after chemotherapy and radiation, I do not want to take the risk that I may not be able to have children, be unable to conceive naturally or go through early menopause which are all side effects associated with chemotherapy. I have read that women who are treated  for cancer under the age of 30 have the best chance of becoming pregnant after treatment. It does however depend on the mixture of chemo drugs and how your body reacts. The optimist in me says I want 15 boys. All Blacks squad in 20 years….

If they were to remove the lump as it is the would have to cut out around 1 to 1.5cm of tissue surrounding the 3cm area. That is between 4 and 4.5cm of tissue. That is a big amount of tissue to remove and I would be left with a massive dent in my breast. Instead of removing the lump they want to shrink it with Chemotherapy first. What they will do hopefully at the same time that they take out a couple of lymph nodes to test is they will use the needle biopsy technique to insert a small plastic “clip” into the lump. This acts as a marker to show the placement of the lump / cancer as in most cases when a lump is treated with chemo it shirks down smaller and in some cases shrinks to nothing. The plan is to go in after the lump is smaller and remove the tissue surrounding the “clip” and a lot less than would be removed than if they had to take it out now.

I asked about other options and no matter what I asked all of them still came with Chemotherapy.
So if I had the lump removed I’d still have to it. If I wanted the breast removed with the intention of getting an implant then I would have to have a mastectomy and wait for approximately 9 months – to go through Chemo, Radiation and for my body to be well enough to heal after a reconstruction. The implant would react with Radiation so that’s a no go. Don’t really want no boob for that long.

We had to ask the hard questions too.
Is it going to be feasible for me to stay in London, am I going to be able to work? Because financially it would be impossible to not work here as I have not right to benefits although everything is covered under the NHS. Would you recommend I stay or leave? They said that people who go through Chemo are generally able to work throughout the treatment. Chemo only occurs once every three weeks and I would have to have between 6 to 8 cycles so it would last 5 to 6 months. They said that with work generally they could get me in for treatment on a Friday afternoon I would have to rest for the weekend and should be right by Monday to be back at work. I still need to speak to the school where I have been offered an amazing opportunity to teach Art starting in September but I feel that they will be understanding. Fingers crossed.

A few people have asked me if I am going to go back to New Zealand.
The answer at this stage is no. I have discussed this with Mum and we both agree that it makes sense to stay here. I am so close to the hospital with highly experienced doctors and surgeons, the research and development for breast cancer treatment are advanced here and there are breast cancer specific drugs that are avaliable at no cost. Many of which are not government funded in New Zealand – the main one being Herceptin. Considering that this has all happened in the last month and I feel like the health system here is very fast moving and efficient it is evident I am in the best possible place to be treated. I also feel settled here, have a great support network of friends and still want to work and travel if I am able to.

So the next month will be interesting.

Hormone injections, eggs banked, lymphnode biopsy, clip inserted into the lump……..
The plan is to hopefully start Chemo at the end of July, beginning of August.
I’m hoping that I may be able to sneak in a trip to Turkey but at this stage Summer is pretty much a write off…..it’s all a game of wait and see and things could change. The sooner I get my eggs frozen the quicker I can get this process started and get it done. I have been advised that “Lumpy” will stay put and should’nt move or grow before treatment.

This is all the information that I have, any questions or concerns you have for me please get in touch. Obviously I am not broadcasting this to the world so emails, texts, private facebook and phone calls are what I need to keep me going. Keep the positive vibes and prayers coming too! Any knowledge and information you have on this little problem I have please share it I want to know everything.

Please try not to worry. I am feeling well and I am in a happy space at the moment despite the shock of all this. It is an odd surreal feeling and I sometimes feel like I am almost in a dream, because of the pace in which it has happened. I have an incredible group of friends here in London that are looking after me and the support networks in New Zealand are keeping me going. The most important thing for me to come out the other side is to stay positive and get as many positive thoughts and vibes from all of you.

A special mention must go out to Kate, Heather, Haley, Dani and Clint….I would not have got through the last two weeks without you. Your friendship means the world to me. I love you all.

All in all I am treating this as a learning experience so please all of your do regular checks (Men can get breast cancer too!) and if you are unsure about something get to a doctor immediately.

I’m going to fight this and I am going to beat it……Just as well I like a challenge!

Until the next update, love and hugs…..

Jess xxxxxx

Blog Time…The Beginning!

Hello! Welcome to my blog….

I have been thinking about doing one of these for awhile. It seems like a great way to communicate with friends and family as well as being an outlet for me to share my experiences while I am living and working in London, England.

Life has been a bit crazy since I arrived here at the end of January.

I have taught in a lot of schools in and around London from Reception to Primary through to Secondary. Current count is around 38 schools…..Its been great to see how things work and deal with a wide range of “interesting students” from a massive variety of cultures. Teaching over here is a lot different to NZ and I really miss the organisation and efficient smooth running of GEIS. Teachers over here don’t seem to do much if any planning so I have learnt to accept that I have to wing it on several occasions!

Travelling has been epic. I have done a wee bit in the UK and plan to do a lot more – Windsor Castle, Stonehenge, Oxford, Bath, Bristol, Brighton, Cardiff along with a few London sights – Portobello Road & Borough Markets, Tower of London, Westminster Abbey, V&A Museum, London Eye, and had an attempt at Wimbledon (we got in the queue before 7am on the first Saturday of the tournament and we still in the queue at 1230pm).

Europe has been amazing so far. Have experienced Iceland (Reyjkavic), Amsterdam, Belguim (Brussles, Gent & Brugge), Poland (Krakow & Warsaw), Berlin, Croatia (Dubrovnik, Hvar & Split), Bosnia (Sarajevo & Mostar), Austria (Salzburg & Vienna) and Slovakia (Bratislava).

For those of you who have been in touch the last couple of weeks (for those who have not are about to get a bit of a shock) I have recently been diagnosed with early stage Breast Cancer.

I am completely fine and in good health and am about to go through fertility treatment to get my eggs frozen (to preserve fertility) before starting Chemotherapy at the beginning of August.

Its all been a bit of a shock but I am taking it in my stride and just trying to live as normally as I can. I will use this blog as means of communication as well as the odd email. If you want to follow my story I would appreciate that and if you find it to difficult to read then that is cool too. This is my way of coping and because it is helping me so far I am going to continue writing…….

It’s not all going to be doom and gloom! and there will be more travel stories to report about.

Who says I can’t teach, travel and have cancer!

Thanks for all your love and support so far……

Jess x