I wonder if I’m placing too much emphasis in finding the answers at the Conference? My mind wanders off to a place that tells me that US manages Phyllodes in a completely different way to my experience in the UK. Will my attendance in fact confuse me further about my medical and diagnosis prognosis? But perhaps there will be some clarity. And will I feel able to ask the questions that I have without feeling daft? Ooooh help!

It’s with trepidation and excitement that I write this quick update. Only 4 days to go until the start of the Conference in Atlanta and, apart from the long flight to the US, I’m so looking forward to the Conference. I’m looking forward to meeting and having a hug with the Phyllodes ladies that have been such a strength and inspiration to me over the past few months. I’m looking forward to meeting up with a couple of old friends, one who lives in Atlanta and another who will be attending the Conference too. I’m looking forwad to learning so much more from others about managing their lives and moving on. I’m looking forward to the Conference for soooo many different reasons.

As you know from my story, I still have so many questions that I think about often, to do with being a survivor of Cancer and someone that hasn’t been told that I’ve got the all clear or someone who doesn’t know what her future holds – or whether she has a future. Last weekend I attended an NLP conference and one of the ‘tasks’ that we did early in the weekend was setting goals in our future – I went from my ‘relatively’ usual positive stance to someone that questioned if she had a future and when using an NLP technique could see only a black space when attempting to see into her future.

This affected me hugely and I nearly turned round and came home writing it off as a bad job.. but I didn’t. By the end of the weekend, I was able to see a future and importantly, a future that was positive, healthy, wealthy, fun and something to run towards and embrace. This was even when the pain was quite painful during the weekend… it always seems worst when I’m tired, cold or doing too much and the Conference was, as it should be, full-on!

So here goes… I DO have lots of questions and I DO have concerns about what I look like now and I DO wonder how I would handle a mastectomy, should the Phyllodes return… but what I do know is that if I attend the Conference and am ferociously curious about meeting people and learning from experiences, advice and attitude, I can draw only positives from my attendance and flourish from all that I am part of in this journey.

I figured it was about time I gave you a little update.

For the most part I’ve felt like a million dollars. Its difficult to explain how I felt that a huge weight had been lifted once I had received answers to my questions and queries and made the decision not to do anything else. When I’ve felt energised and rested it’s felt great, I’ve felt positive and wanted to move forward with my life AND grateful for having a life. I’m enjoying getting in touch and meeting up with friends again.

However when I’m tired or the niggling pain is a little more intense… or when I wonder how I’m going to move forward with my life when I don’t feel assured that I’m ‘safe’ yet.

How can I plan ahead or book anything in the future when I don’t know what will happen? Will the niggling pains be there forever to remind me what has happened? Or are they just a precursor to the cancer returning?
How do people deal with it? Do they just take day by day and hope that tomorrow is better than yesterday? Smile hard and hope that the good feeling people get when they see a smile rubs back onto me. When I was younger I don’t remember being told that growing up was tough… not like this… can I be 4 again please?

16 days until the Conference in Atlanta – I hope I find some answers there… maybe others who are going through/have gone through this will be able to help me.

I’m pleased to report that I’ve been busy… busy having a life and feeling that I’ve got a life to live. It’s funny but once I was able to make my decision and feel that I made my decision armed with information and support, I felt better. I felt that I had control. I felt I could breathe again. Things have happened since that moment that normally I would get angry at or at the least irritated… instead I’ve been able to laugh at it and remember that there really are worse things to worry about in life.

I have still got the niggling pains I had before and that I’ve been told relate to the tissue settling down… sometimes I wonder when it will stop but nothing that a few paracetemol won’t sort out.

Annoyingly though the pain is also meaning that I’m not sleeping well – the joy of being one of those unusual people who sleeps on their front! – and now I’m back at work, I don’t get to have a lie-in.

Although I’m feeling positive about my experience and my outlook, I’m still acutely aware of my remaining concerns – my body image changes, new relationships, possible recurrence, what next moments etc – but I’m also aware of others who haven’t been so lucky with Phyllodes and whom continue to fight for good health and even for some who have had metastases to other areas of their bodies. What’s strange is that sometimes I feel guilty that I’m feeling better. OK so there are lots of aspects I’m still struggling with and there’s also an annoying little voice in my head that reminds me I don’t have an all clear but the louder voice in my head tells me that I’m going to be OK. Then I hear about others, or the pain reappears and I start thinking. Probably to a lot of you this may sound ridiculous, weak and negative and I struggle with the positive attitude and these feelings daily. I wouldn’t however give up being in touch with my Phyllodes ladies or trying to reach out to others or learn more about this rare cancer and update the reference page on this website… I remember how much I desperately searched for information or help when I was first diagnosed or just needed someone who had been diagnosed with Phyllodes to tell me that I’m not alone and support me.

I sent the below email to friends and family to update them on my current outlook. I included the link to the fundraising page and I’m soooo very very chuffed that people have been so very generous when times are tough for everyone. You will know from this page how very much my attending the Conference means to me and I couldn’t afford to attend had I not received a grant from the Fund. I am so pleased that my fundraising page and your contributions may enable others to attend the Conference and for them also, it will be such a huge source of information, support and assistance. Thank you.

I am reminded every day by your actions how much I’m loved.

“Hello All

AnnaGoAnna
PS I was trying to complete this email and going to send it over the weekend… but hahaha the pesky blighters are trying to stop me and my get up and go… my car broke down and I spent Sunday evening/night being driven home in a breakdown truck with my car hanging off the back!!! Humph, it’s merely a blip!”

After a frustrating 2.5hr school run to drop off Millie’s children in the snow and ice, we decided it would be sensible if I went to the hospital alone so that Millie would be able to collect them from schools on time. As it turned out the journey was easier than usual and, for the most part, the roads clear of snow/ice/people!

My appointment with my surgeon and Macmillan nurse was on time, so far so good. After a quick examination my surgeon confirmed that the lump and pains were associated with the area that had been stitched internally and externally and will dissipate in time. He also examined my left breast and glands to set my mind at rest about the other pains.

Once dressed, we sat in the consultation room comfortably and my surgeon asked me ‘what do you want to do next? Surgery, Radiation, Re-examination of the pathology…?? ‘

‘Somewhat unusual’ the Macmillan nurse’s eyebrows said and my surgeon explained to her that he knew I had been doing research, asking questions and speaking with other Phyllodes survivors about my case together with yesterday’s consultation. I told him of my decisions that I had made before, during and after yesterday’s consultation which in summary was that I didn’t want any other surgery or treatment at this time. I was happy that my queries and concerns had been answered. I was also happy that the pains were manageable now that I knew it wasn’t a recurrence. He reconfirmed that should I have any concerns at all in the future or any new questions, I should call or make an appointment immediately. This once again assured me that I wasn’t going to be left worrying but am getting the very best treatment and care.

We also agreed the follow up schedule, as discussed the day before, would be every three months for the first year, six monthly for the second year and annually thereafter.

One question that I know will come up and one that I don’t want to fall off the radar is the evening up of my two boobs. After the two surgeries I have been left with scarring and a smaller right breast, although given what I could have been left with, I’m very lucky that the difference is not drastic and can be addressed without surgery. However I don’t want to do anything about it now and indeed if my own self image is better may decide not to do anything about it, ever. I know that I need to lose a lot of weight and that this weight loss may make the difference more or even less obvious (women often lose weight from their breasts but it may not be evenly lost due to the surgery). So my job – I need to lose weight and get myself to a ‘stable’ weight. At that point I may then be asking the surgical team what options are available to me to even out my right and left breasts. Until then I shall be satisfied with the assistance of Rigby & Peller’s magical inserts and, perhaps, some custom made lingerie to address the natural imbalance. But for now, I’m happy that the onus is on me and I don’t want surgery until I’ve done that. I would hate to have surgery once and then lose weight to need surgery again.

For now I need to look ahead, to plan, to schedule, to organise my life. I need to work out if I will have difficulties with mortgages, life policies, financial planning etc and how I manage this. I also need to come to terms with my new body image and how this will affect my emotional future. I’m hoping that meeting others at the Atlanta Conference I will be able to understand how others have overcome these issues too. So here goes… I will only update this website if I have more information or my healthy position changes or in the run up to the Conference… Well, I’ve got my life to restart and get back on track, so forgive me if I pick up the phone, turn up on your doorstep, push you into going out or coming round but I’ve got things to do…

But before I go for now… thank you for your support, emails, calls and positive vibes. They obviously worked and I know I couldn’t have gone through this journey with so few minor blips, without you all. Thank you.

Have to confess to being nervous about the next couple of days of medical appointments. Although grateful that the appointments are now and not scheduled for some time in the future and I have to wait longer for answers. BUT… Will they play nicely and tell me kind things? Will I remember to ask all the questions I have? Will the pain be there when I get into the appointment or will it be like when you get to see the dentist and the toothache is gone?

Yesterday afternoon there was jointly a little knock and a huge hammering on my front door. Upon opening the door I was greeted by my niece and nephew (of course), closely followed by my brother on the snowy pathway. They had forged their way ‘easily’ in their 4×4 with the sole intention of abducting me for 24 hours.

After a few challenges on the Wii by my 7 year old nephew (how do small children know how to work these things and navigate games I’d not yet discovered?), we drove off in convoy down the farm track. I’m grateful not to have been doing that drive on my own as I appeared to push the deep snow out of the way with my bumper and I’m quite sure the underneath of the car is now much cleaner for the scratching! Once out of the farm, I slipped and slid until reaching the main roads and was grateful to note these were much clearer. A lovely family time for 24 hours – cuddles from my niece and nephew, building lego, sledging, eating delicious meals and generally being looked after, not to mention injecting a little bit of Auntie Anna naughtiness!

I’ll be honest with you; I’ve struggled this past couple of weeks. Not particularly with the pain, I’m sort of getting used to that, but more with where my head has taken me. This probably isn’t helped by the relentless cold and snow which has meant that I’ve been housebound for the past week, with me, the internet, TV and my thoughts for company. I can understand now why they say cancer survivors may get depressed or feel isolated whilst to others the battle appears to have been won and their fight is over.

There’s also reference made on cancer charity sites and in the leaflets that unlike many illnesses, breast cancer survivors are just that…survivors. We don’t get the chance to say we’ve got the ‘all clear’ but to simply count days/weeks/months/years since our last recurrence to which we can mark our survivorship time. I’ve been asked by a number of people if I have the all clear and if I’m better and every time I hear that question, it breaks my heart just a little bit more. It’s hard to just put a smile on and pretend that you’re feeling grrrreat!

If I wasn’t feeling isolated enough this week I was also reminded that we’re all human and bureaucracy is everywhere. I registered with a support group that specialises in rare cancers and have been regularly searching for information relating to Phyllodes tumours on this site and also reading other survivors’ stories and questions in a search for answers for myself. In addition, where I’ve been able to, I’ve been replying to postings from others seeking answers.

In these postings I have, where I feel it to be a branch of support added that there are a number of us ladies on Facebook and saying if they’d like to friend us they may find the support helpful. As you know from my website witterings I’ve sought help and support from a number of different sites, forums and resources. I guess being diagnosed with a rare cancer has meant that there are fewer people with it and therefore less information available to us so we (certainly I) will take any help I can get. Sadly this week the administrator of the site deactivated my account on the basis that I was redirecting users to other online groups. I’m sad because I hadn’t realised that by offering a hand of friendship to others I was a breach of this website’s rules. I’m also sad because if sites like this continue to make the club exclusive we miss out on the opportunity of raising awareness to this rare cancer and thereby any research or publicity. But it’s their site and their rules. Personally I know I would have struggled thus far without these additional forums and resources.

I’ve read that I’m now classified as ‘disabled’ as a cancer survivor and to me that makes me feel like I’m never going to get better or be over it… I know it’s just a ‘word’ and it’s more about attitude but it does make me wonder what that will mean for my future with regards to financial planning, life policies, mortgages, insurance or my career. It’s daunting to think that this could determine my future in more ways than just the surgery or treatments. I wonder if I’d feel differently about this if I was married or in a permanent stable relationship whereby it’s not all down to me alone.

As most of you know I don’t have any children and have always maintained that it’s by choice. Those of you who know me very well will know that I was told at an early age (18) that I couldn’t carry full term and therefore wouldn’t be able to have children. The reason I’m saying this now is that it’s been very much in my mind recently. I sway from being grateful that I don’t have children or a partner who would be seeing me go through this journey or indeed that I may one day have to leave prematurely. The spin side of the coin is that without them, I don’t have the same drive to stay positive and fight. Equally I’m every now and then acutely aware that I don’t have access to that unconditional love, hugs and warmth that you get from children and partner or the comfort and safety as you fall asleep in the arms of a loved one.

Thanks for listening (well, reading) and apologies if this seems a little too much truth for one entry – thank heavens you can’t read my mind! I feel better for having put this down on ‘virtual’ paper. I do have some truly tremendous friends and family but some things are just too damn difficult to say face-to-face without sounding like a victim. I often never get to the reasons why my mind has reached a conclusion but on ‘paper’ I have a little more confidence to voice my thoughts and perhaps this written blog will help you understand my journey and I suspect other survivors.

Right-O – face on, lippy on and smile Wolbag… atta-girl.

Well I chased up what was happening and was eventually informed that I ‘had been overlooked’. I can’t tell you how many times my heart skips a beat or drops through my stomach when I’ve been told that or hear those all too familiar phrases ‘what is phyllodes?’ or ‘I’ve never dealt with one of these before’. I go from being angry and anxious to being tearful and feeling utterly broken. This really is a rollercoaster and those of you who know me well, know I hate rollercoasters! I so truly just want to get off now.

I’m going back to work on Monday and had hoped that this would have all been over by the end of 2010 and that I would have had a few healthy weeks to have fun and catch up with friends before going back to work. The company has moved offices this week to, so I go back to my old job in a new location and can’t help but feel that it’ll be like starting a new job but with the knowledge that I know what the job is!

This morning I received the call I had expected last week to set up the appointment with a senior breast oncologist at the Marsden in Chelsea on Tuesday. I presume that the results are in from the re-slicing and re-dicing of my pathology and once again wait apprehensively for Tuesday’s appointment to arrive. I also have a number of questions about my condition including whether the tumour was hormone receptor positive or negative, if clear margins were obtained and why the classification isn’t entered into the NHS database. And of course what the odds are of this cancer recurring or metastasing to other parts of my body.

So that’ll be Tuesday afternoon taken care of and on Wednesday I have my first follow up appointment with my surgeon. What a fantastic first week back at work and so much for moving on with my life. I am, however, relieved to be seeing my surgeon (and my Macmillan nurse) as I will be able to ask him if the pains that I’ve been experiencing really are the tissue reshuffling or the scarring of the previous surgeries twinging and not, as my mind tells me, anything more onerous. At least I know the drill at that hospital and am assured that if there are concerns they will do the tests and scans that are needed to check.

Well time to knuckle down, prepare to go back to work and once more wait for my appointments and any further news.