Is it really a year?

Mum,

It was a year ago today that I received a call from Roli to ask me to come quickly.

I remember starting my day with an early text from Dunc to tell me that I had a new neice, Celeste and the joy that that new life will bring. Dunc asking how early I thought he could ring you to tell you the news that you’d asked for every day. I can remember also knowing that you’d been waiting to know that all was well with the arrival of your new grandchild. I remember being in my NLP training and somehow knew my phone was ringing in my bag despite it being on silent. I remember hearing the tone of Roli’s voice and knowing what he had to tell me. I remember wishing I’d been able to park closer and rushing to get to you. I remember driving at speed down an impossibly empty M4 motorway. I remember arriving at your house. I remember the house feeling calm and peaceful. I remember seeing the pictures that had been emailed from my little bro and that you’d been able to see of your new granddaughter and seeing you smile at the pictures. I remember the look in your eyes as you looked at me and you said your goodbyes.

During the next few hours before you left us, Roli and I sat with you, talked to you and also to each other – that was a special time. I remember the sound of comfortable silence and feeling of calm. I remember knowing that you had decided it was time. I remember knowing that you were now in control and, as in life, your death was going to be on your terms and in your own time too.

Thank you for making it easier for me (us all, I think) by telling us what you wanted to do when the time came. Thank you for being honest and open with us about your wishes should the Multiple Sclerosis progress. I remember when you gave us your ‘living will’ many many years ago feeling shocked and horrified that it would ever be needed but it helped to understand your wishes.

I hope we did it all right – you had ‘we look on the bright side’ as we left the church after your funeral (and yes there were a few of your guests aghast!). AND, as you’d longed for, and as I reasoned that they might not do, your grandchildren (all of them) did read ‘On the Ning Nang Nong’ in church at your service – and you were right, they loved reading something so ridiculous for a Granny that they adored.

BUT it’s a year since you left me. It’s a year since I’ve been able to talk to you and have you tell me not to be so bloody stupid. It’s a year and so much has happened and so many times I have reached for the phone to call you. I’ve needed you to hold my hand and tell me it’ll be OK or more than likely, ‘to just get on with it’. But I hear your voice sometimes as I do something or search for an answer and yes I still answer back!

Miss you Mum.

PS Are you dancing now and as you twirl and is that emerald green dress swishing and catching the light?

To Celeste

Your arrival into the world was so longed for by us all and so very much by your granny. Every day for weeks she’d been asking me if there was any news of you. Every time the phone rang you could see granny’s eyes light up with anticipation. When granny heard the news you’d arrived and were perfect she made her final preparations for her exit from this world. When she saw photographs of you which were emailed to her a few hours after your arrival, her face and eyes lit up with love.

Granny would also say that although your arrival in the world was shared, YOUR birth-day is your own day and you will make your life your own in your own special way. Be strong and be individual but always rememberer to smile and cause a little mischief!

Happy Birthday Celeste.

Auntie Anna
xxx

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!

Scans

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?

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

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

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.