hmmm

I recently bought a new Apple iMac as I’d heard everyone saying how wonderful they were, reliable, easy to use, better for graphics, website and design etc – something I figured I’d be doing more of for the event. And another ‘good point’ Apple customer service are excellent! So I invested. It arrived. I set it up. Within a couple of days I got fed up with the keyboard randomly typing kkkkkkkkkkkkkkkkkkkk or just shutting down. Apple said it’s faulty and are going to swap it out. 😉 I couldn’t take it into the store to swap as I’d bought it online. I hadn’t set everything up yet (including the backup) – due to the difficulties when keyboard types random letters. Thought I’d do that when new keyboard was here. Noticed that email had downloaded to Mac and deleted original messages from hotmail account – haha read small note about ‘unchecking’ a box on set up. Thought I’d sort when new keyboard arrived. BUT DIDN’T account on entire Mac dying yesterday! Apple have agreed it’s faulty and are going to swap it out. BUT my email however may be irretrievable and if I were to ask Apple to attempt retrieval they a) can’t guarantee it would work and b) would only be giving me a fixed iMac not a new one in replacement! Mac-friendly friend coming over tihs weekend to attempt recovery view their lappy. Now let’s recap – “reliable, easy to use” “excellent customer service”. I’ve now got past angry and now upset and worried that all my hard work at contacting people for the conference via email is now gone… Apple didn’t seem concerned that I’d be using their computer for anything more than surfing the net… so far not a great loving feeling for Apple!

Oh and me – boob very ouchy and bruised today. But hahaha, realised that if they do many more biopsies I’m not going to have a booby left. Thank heavens for my silicone inserts – I’ll just have to get bigger ones! GoAnna Proverb – Many biopsy = mastectomy!

New office antics?

Ok so after a sleepless night at Millies we’ve shopped, wandered, occupied and generally taken my mind off it (although I did beat the kids at Scrabble!)… then the appointment at the hospital loomed. Quickly taken through to the scanning area to discover that I was the only person being scanned this afternoon – a bit eerie as usually its packed with nervous women in strange hospital gowns. Did wonder if it was a ruse and another radiographer joke! I had been dreading the mammogram and threatened the mammographer with a bop on the nose if it hurt – that told her who was boss!

Actually didn’t hurt that much – or perhaps just not as bad as before – but half way through I decided that the mammography equipment was a modern day alternative to the photocopier at the office party. Instead of copying bottoms at the Christmas party, you can have a picture of a boob! And yes I did ask the mammographer where I could get a glass of lambrusco or a rum punch!

Next the biopsy… Ultrasound to find the area, anaesthetic injected (ouchy) and then the biopsy gun. The third ‘shot’ hurt but probably because it was deeper and beyond the anaesthetic but they now have three slices of me and many mammogram photos to examine and test. Fingers crossed will just be some scar tissue which was obscured by the seroma (fluid).

Right now, am feeling fine… anaesthetic with wine – hurrah! Results next Wednesday.

Questions (a bit self-indulgent so feel free to skip!)

How do you find the resolve to keep on fighting? I hadn’t put this one out there for me to consider as an option. It took a lot of me to get through it before, to find reasons for the what if or when? How or why? Where or who? So many questions that I answered once and struggled with at the time and now I don’t know if those answers or reasons are good enough a second time round.

This weekend has passed in a fug (that’s a phrase that Mum would use but I think you get it). I don’t know what I did or even if I managed to finish any task I started. I look around the flat and there seems to be 100 things that are undone but need fixing… a bit like how I feel. Broken.

I don’t know what is worse – not knowing or thinking the worst.

The really annoying part is I don’t seem to be able to get myself in a good frame of mind and consider a) that it really is a radiographer’s joke; b) that it really is scar tissue; c) that it’s just me being Miss lumpy bumpy but nothing untoward; or d) the previous scan they compared me with belonged to someone else; or e) the radiographer didn’t have her glasses on! Right now I have only one question for me… where’s Miss Blinking Positive gone?

This probably reads as the most self-indulgent entry ever – possibly; probably but always honest.

But tomorrow is Monday and it’s a working day. I have heaps to do, to organise, to write, to create. Calls to make, emails to return, websites to design, research to be done… I don’t have time for this…

Gosh I hope tomorrow is a good day.

(part II) Update

Well that didn’t quite go according to plan. Was going to pop in, get covered in that weird ultrasound gel, have a radiographer poke and prod at my boobs (all sounds a bit jolly perverted but honestly it really is for medical purposes!). I was then going to run from the hospital to do a little retail therapy before a Apple Mac lesson… (yes, finally I’m iMac positive!)

However (drum roll), the first bit was according to plan. Well the turning up at the hospital, the appointment being late, dressing up in weird cotton dressing gowns that don’t quite fit (an interesting look on some of the attendees), getting covered in gel and the poking and prodding bits anyway. The bit that wasn’t quite according to plan started when the doctor insisted on working out if it had been 12 months since my last mammogram and mentioned that they’re better at picking up signs of phyllodes than ultrasounds… hmmm clue number 1. Next was the questions about exactly where the excision site was and if there was a lot of scar tissue… hmm. clue number 2. And the final clue when she left the room, told me to wait and then I heard hushed voices outside the room… all so comforting!

Anyway, the upshot is that she found the previous scans and has noted that there is a new suspect area. She said that it may just be scar tissue but even without any medical training, I suspect that scar tissue doesn’t appear 8 months after surgery has completed!

So, I’m booked in for a mammogram and biopsy next Wednesday. These will then be examined/tested and the results presented by my lovely oncologist on 11th August.

OR conspiracy theory… The radiologist is playing a jolly little jokette on me as pay back following the fuss I made about my appointment being cancelled last week… oh how I’ll look back at this and laugh (right after I bop them on the nose!)

And yes Millie has once again rearranged her schedules and farmed out her lovely children so that she can come with me to both appointments and look after me.

Note to self: Must invest in waterproof mascara and packet of tissues… blinking ridiculous behaviour today to even think about attending the hospital without backup!

Where does all the time go?

Well apart from moving, decorating, cleaning and sorting in the garden, I’ve also been hard at work getting to grips with the huge goal that I set myself of the UK conference next year. I will update you more when things are firmed up but it is sooooo going to happen!!! I will, of course, be looking to you all for help, contacts, names and numbers so that I can get to the right people I need. I will also need help nearer the time with all sorts of tasks and at the event itself, will be looking for volunteers to help out with guiding attendees to the right places and generally helping out.

All this has been hindered and frustrated by my new phone/broadband provider managing to lose the network for 3 days. Do they not realise how much I need to be online or able to use the phone? aaagggh

Scheduled follow up appointments

I was due my ‘promised’ 12 week scan in the middle of July. I had a note in my diary but no appointment date/time. As it was due right in the middle of my moving to London and the million and one things that I had to do at the time, I figured that I’d chase it up only when I had a minute however should the appointment card appear, I’d rush to my scan. You guessed it, no appointment card appeared.

I have however been having little sharp pains which I’m hoping are due to moving and lifting so much stuff or perhaps I’ve bashed the wound. I’ve also been extremely tired and my mind tells me that I was like that before but I’m trying to override it by telling it that the ‘Lazy Gene’ is pushing for attention!

So I called them up. After having to dial a squillion different numbers within an automated system and getting frustrated when having pressed 1 for this and 4 for that and 2 for this and 8 for that, the options dried up and I couldn’t get to the hospital unit anyway! So I ended up with the PALS team (patient liaison) who, as usual, a) understood my frustration and b) managed it and found answers.

The answers however were not what I wanted to hear. They were told that ‘it had been decided’ that I was now only to be getting an annual mammogram.

Errr I don’t think so.

I was livid, upset and felt, once again alone. How can all my follow up scans be ‘cancelled’ and I not be informed or the issue discussed with me? My consultant it appears is also unaware of the radiographers decision as I have an appointment to get my results from him for the scan that they’re not going to give me!?!?

I’m really not sure medics understand the need for a follow up schedule for cancer patients. To have an agreed date in the diary of the next appointment, be it next week, next month or next year, means there feels there is some support and should there by any problems, we know that we’re seeing someone in x days. This reduces the anxiety and stress of the individual but also, surely makes easier planning for the medical teams.

After a lot of to-ing and fro-ing I was eventually ‘granted’ a scan. So 30th July is my next scan.

K&C LINk Cancer Sub-group meeting

Today I had the good fortune to be invited to attend this meeting. I recently attended the AGM of the whole group and had a good understanding of the LINk program. I perhaps hadn’t understood how influential however this sub-group could be and to be a part of it, is amazing.

We discussed new projects and programs to be implemented in West London – ideas I understand that had started at this sub-group. We also discussed awareness issues around breast cancer screening and self-examination for the community and suggested many ways that perhaps this could be improved. Another topic was also the importance of follow up schedules with cancer patients (ironic given what happened the following day with me!). Also discussed was how a patient can be assured throughout treatment that they are being supported and know what’s happening to them. Again suggestions were made.

I’m very much looking forward to being a permanent member of this sub-group and watching our ideas, feedback and experiences perhaps changing the way things are being done or simply an understanding of these issues being taken back to the medical teams and NHS.

It never makes any sense, does it?

A friend said to me at some point in this journey I would realise that not everyone makes it and that I’d find it hard everytime we lose a friend.  Will I ever be able to explain it or understand it?  Today I heard of a friend I met in Atlanta who passed away today.  Lisa fought breast cancer bravely and with a smile on her face.  I met her online before I went to Atlanta, she took the mickey out of me and my English ways!  Lisa volunteered for a special job which was to make some ‘bling’ to attach to our name badges, as she thought she wasn’t going to make the conference and wanted to contribute.  She did make the conference and I wore my ‘blinged badge’ with pride throughout the conference and have looked at often since I returned – it reminds me of someone who is full of life; Lisa.

Will anyone ever understand Phyllodes?

When I was first diagnosed with a Phyllodes tumour, all the information I could find related to the tumours affecting the breast tissue.  Indeed the association is that Cystosarcoma Phyllodes is a breast cancer – it isn’t it’s a soft tissue sarcoma.  However there was always some comfort in the belief it was a breast cancer, surgeons know how to operate, support networks know how to relate, friends and family can compute what this means etc etc.  And for me, I believed the ‘rumours’ that it would only ever be in my breast tissue and therefore could be treated surgically.

As you will know from posts earlier this year, my comfort blanket of information was shattered when a friend from the US (Lynda) passed away when a new Phyllodes tumour grew in her brain.  My knowledge of phyllodes told me this was impossible but there was another part of me that knew that due to the rarity of Phyllodes, no one really knows.

This week another dear friend (again from the US and again whom I met in Atlanta) has had surgery to remove a Phyllodes tumour from her mouth.  She has undergone an 8 hour surgery to her mouth and jaw. She has just been woken and has a tracheotomy and will remain in hospital for 10 days or more.  She is unable to talk or walk and will be sent home with a feeding tube.  All this for someone who is 24 years of age and was told when she first saw the doctor that she was too young to have cancer.

Jolene is an incredible lady who has endured so many surgeries, treatments, drugs and trials but somehow always manages to laugh or joke around – Jolene’s tumour humour is legendary!  It’s rare that Jolene isn’t smiling broadly.

I tell you this for two reasons:

1/  Please keep Jolene in your thoughts and prayers.  She’s a fighter and the first thing she did when she woke from the operation was to ‘give cancer the bird’.  Feel free to shout out the war cry “Phuck Phyllodes“!
2/  The conference/event in London is for breast cancer survivors, not Phyllodes.  However as the surgeries, support and emotional and physical affects are the same, I would love the conference to also be a source of new friendships and support networks for my fellow rare Phyllodes survivors.  If it is at all possible, I also aim to have a keynote speaker at a workshop discussing Phyllodes.

I am reminded at times like this however that I’m blessed to have found such a wonderful support network of people affected by Phyllodes and whom support each other through our journeys.  As you know they were so terribly important to me during my difficult times and I’m now able to help others through theirs.  This website has been found whilst trawling the internet, by a number of newly diagnosed ladies and I’m so proud that I put it together to help, even just one.  On the other hand I am always saddened when I receive an email from someone else newly diagnosed.  The most common things I hear are that their doctors haven’t taken them seriously; have told them their too young to have cancer (sometimes sending them home previously); that Phyllodes isn’t Cancer; that they don’t know about Phyllodes; that they can wait for surgery despite the tumour’s quick growth; and more… Sadly the stories are often the same and incredibly hard to equate when newly diagnosed.

If you get the chance to ever mention Phyllodes, please do so… I’d love to think that sometime soon, someone will be newly diagnosed and hear the doctor say ‘I know about Phyllodes’.