I know I’ve giggled a little at my ability to stalk the medical world and find out for myself information about phyllodes tumours and then attempt to relate my findings to my case. I’m also, although some of you may disagree, intelligent and literate. Thank heavens – I’m continually reminded that MY health is exactly that, mine. How do others cope when they don’t have access to the internet or are nervous of chasing up appointments or seeking other opinions – is this why some cases are caught too late for some?

Turns out that the referral to the radiation team appears not to have been sent/received. My chasing up yesterday worked – they’ve faxed it over today! Just as well that my research has told me that, if possible, radiation should only be done once the surgery has healed sufficiently. My nurse has said that if I don’t hear by Tuesday to chase again – oooh and I shall!

First evening out since October before Op No. 1 for the office Christmas party. Managed to stay until the end of dinner and now, although a lovely evening and a chance to catch up with colleagues, am somewhat regretting it. Exhausted and definate pinching pain now. Looking forward to a quiet day doing nothing tomorrow! I did however get to wear my Christmas tree earrings for their annual outing, complete with baubles.

Apologies for those of you who check in every day – no update yesterday. One big task organised yesterday – removals of the items I’m inheriting from Mum’s house into storage. Hopefully will be collected next week. My sister-in-law and I also managed to pack up a couple of boxes and clear out a few more drawers and cupboards – slow progress when I can’t lift weighty boxes and I ache and pinch. I collapsed in a heap when I got home, so apologies for no update.

Today though I’ve been Little Miss Proactive. (Is there a Little Miss book with that title? – Roger Hargreaves??)

I’ve sorted out lots of correspondence and paperwork for Mum’s estate and I’ve chased up the radiation appointment – will await a return call.

Excellent news (No. 1) – the clinician for the phyllodes trial returned my calls. She’s not yet received my consent form but explained further about the trial. All the data will be anonymised and I will not be told anything specific relating to my case however as I’ve said all along, if my case helps one more person, in any way, I’m all for it! The trial is essentially looking at the genetic makeup of each sample, looking at how the genes may relate to the type of tumour ie benign or malignant and also if this has any bearing on recurrence of the tumour. We talked further about the trial and I’m really hoping that they are able to publish a definitive paper following the trial.

The clinician and I also discussed my case. Although she has not seen any of the histology or scan results, I wanted to ask for her opinion with regard to what she considers a clear margin for a phyllodes tumour really is and also if she feels adjuvant radiation therapy is of benefit after surgery. She believes that adjuvant radiation is only needed IF surgery has not produced definitive clear margins and that a clear margin for phyllodes tumour is the same as other breast cancer. She is also of the opinion that phyllodes does not respond to radiation therapy!

We also discussed the differences of opinion between US and UK medical teams ie the US usually conduct a full mastectomy and radiation therapy for malignant tumours.
However the problem is, as we all know by now and was reaffirmed by the clinician, is that there simply isn’t the data or case reports that can be relied upon to say that this or that is the right thing to do or indeed not to do!

I need to, for my own peace of mind, understand totally that a sufficient clear margin has been achieved surrounding the entire cavity through the surgeries performed. I would also like to discuss, with someone who has seen and reviewed the pathology and histology results, the effectiveness of adjuvant radiation therapy.

Excellent news (No 2) – Another friend of mine has contacted a family friend who has agreed to review my case, histology, pathology slides etc and provide a second opinion. This will allow me to ask the questions that I need to ask and perhaps to settle my mind about what I should be chasing for or not.

Although I have absolute faith in my surgeon’s capabilities but am acutely aware that there is little information or guidance about phyllodes or indeed little experience in dealing with this type of tumour as it is simply so rare – a consultant may never see a phyllodes tumour. One thing that I miss with the NHS in the UK is simply that the time allowed for each patient is so small. As you will know having read my blog so far, it is usually after the consultations, when the shock or reality of what has been said sinks in, or simply after the long words have been googled and researched, that the questions then emerge – and then who can we ask? I do however, have to commend the job that my consultant and Macmillan nurse have done, and do every day with so many patients. An incredible job… just wish there was a little more time and a few less patients!

I’ve heard a lot of people say that once you’ve had cancer you will always be waiting, for something. Whether it be waiting for clues (hoping for none but checking and rechecking every day that it hasn’t returned), waiting for the next appointment and the letter of confirmation to arrive, hours waiting in medical waiting rooms (which inevitably will be a long wait, in uncomfortable chairs and a long way from the coffee machine or the toilet) and waiting for results (whilst hoping for the best and trying desperately not to think anything but the best).

I had, perhaps naively, thought that the waiting would be later in my journey but today I find myself waiting or should I say still waiting. Waiting for the pain to stop, waiting for the appointment with the radiation team, waiting to hear from the clinician with regard to the phyllodes trial and waiting to be able to sleep for more than a couple of hours at a time.

Those of you who know me well, know that I just love birthdays and Christmas and actually any celebration that provides me with opportunity to source and give nutty presents and to generally just be silly!. Althougth, I’m more comfortable quite forgetting my birthday and celebrate much harder for others – the joy really is in the giving! Mum was just the same and, probably, why I love it so much. Last year as Mum was so ill, I had the joy of shopping for both us – I remember sitting on the end of her bed and arguing over who was going to be giver of a couple of items that we both loved and we both knew would cause mischief and a giggle!!

Mum would give presents with notes on them such as ‘something to share with the children’ or ‘use only in your wokrplace’, or ‘useful for those really boring meetings’ etc and they’d be random, stick on tattoos or an office desk gadget, a wind-up pair of teeth, or a whistle that sounds like a steam train or a whoopee cushion etc. My first thoughts as I was woken up at ‘silly o’clock’ this morning by the usual nagging pain in my boob, ‘was what will Mum have found this year’, but she won’t, not ever again.

I guess though it’s the full circle of life thing and I am so very very grateful for my wonderful friends and family. I’ve received such wonderful messages, emails, texts and calls from all around the world today – THANK YOU.

As a wonderfully relaxing weekend draws to a close, I am grateful for H’s company, being looked after, being pampered, being able to catch up uninterrupted (thanks to grandparents for looking after H’s small people) being able to be totally comfortable just chilling in our PJs.

I’m still surprised though that even when I’ve done nothing all weekend I’ve still got some pinching and unable to sleep properly – when will I be able to do normal things? Have enough energy to do whatever I wish? How long will it take for the tissue to settle down?

Quick update to say thank you to the groups of visitors I had today.  Colleagues and ex-colleagues took time out of their days to catch up with a glass of champagne, cake and Percy Pigs (supplied by my guests) or escort me on a short walk.  Truly loved to see them all but am feeling utterly exhausted now with some little pulling pains… perhaps for now I need to restrict my activities and increase these gradually.