(part II) Update

Posted on 30/07/2010 by AnnaGoAnna

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!

Scans

Posted on 30/07/2010 by AnnaGoAnna

OK today’s the day I get to go for my 12 week check up scan that I had to fight so hard to get (despite it already being agreed!).

I found myself yesterday and last night in tears and feeling dreadful. Weird how anxious I get about the scans and yet I’m sure there’s nothing to worry about. I wonder ‘will I always be this anxious about my follow-up scans?’

I also can’t imagine not having them, as at least I get the chance to be checked again and to ensure that there’s no return of any Phyllodes but also to see if the seroma (fluid build-up) is dissolving. I hope so, because the idea of any more surgery (even to just put a drain in) is not on my to-do list!

Results appointment in a couple of weeks with my lovely oncologist who will no doubt call me Miss Lumpy Bumpy!! Awww bless him.

Where does all the time go?

Posted on 28/07/2010 by AnnaGoAnna

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

Jolene update

Posted on 27/07/2010 by AnnaGoAnna

My friend Jolene has today been travelling up to San Fran to see her team of doctors and hear about the medical trials they are proposing for her. She has done so very incredibly well after such major surgery however is now taking little steps (bone grafting was taken from her femur for her jaw) and has most of her tubes removed. She’s an awesome girl and an inspiration to us all.

Scheduled follow up appointments

Posted on 21/07/2010 by AnnaGoAnna

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

Posted on 20/07/2010 by AnnaGoAnna

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?

Posted on 05/07/2010 by AnnaGoAnna

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.

Thank you all – Jolene

Posted on 04/07/2010 by AnnaGoAnna

I’m soooo very pleased to report that Jolene is doing well. She’s out of ICU and in a private room. There’s lots of work yet to do, not least learning to walk again as the graft was taken from her hip. She’s been on highs and lows about what has happened but in a positive state of mind at the moment – as if Jolene was ever going to let Phyllodes get her! Thank you for keeping Jolene in your thoughts and prayers – a little bit more please.