2013 is officially CRAP!

The giveaway is in the number I suppose.

The consultant at Singleton called (well his secretary did to be precise) and I was back there Tuesday morning, my head spinning. 

To stop the possibility of the cancer re-occurring it’s looking like TC chemotherapy and a drug called Herceptin – it’s like an insurance policy really. The outlook is pretty positive as everything caught really early… it’s just chemo will help to stop the likelihood of the cancer coming back, and with HER2+ receptors that’s a slightly raised likelihood. On the positive side, if I do nothing I’ve still got an 83.9% chance of being here in 10 years. The chemo and Herceptin together raise that to just over 91%.  Or, looking at it another way, a 1 in 5(ish) possibility of not making another decade, reduced to just 1 in 10 if I embark on the chemotherapy regimen.  I've tried to manipulate those figures! This information is from a personalised prediction score (based on UK cancer registry data). 

My adjuvant therapy is being transferred to Withybush which will be much better all round as it's my local hospital, and I get to see another consultant who may give me a different slant on my histology report.

To chemo or not to chemo? I'm like a rabbit caught in the headlights.

Results.... well almost.

Sorry my blog has been dominated by my health issues recently. I'm really enjoying all sorts of other activities at the moment too. Truly. But writing about my journey gives me some sort of therapeutic release, so here we go again.

I got my results from Singleton Hospital today (yes they'd been postponed; twice).  Though I can now see why they took so long examining and re-examining my tissue, (and to be honest I'd rather they were thorough). Apparently I'm a rare case (ha!) and they are not sure what to do now, so another 'expert' is going to look at my results (who knows more about these grey areas). I'm to see him in two weeks to discuss treatment options.

The report showed I had 72mm group 3 DCIS (contained but the most active of all - i.e. group 3). They also found three grade 1 Invasive Ductal Carcinomas (IDC) - so three small separate tumours and lots of micrometastasis which was waiting in the wings to form into tumours (they found some of this in one of my lymph nodes too). He left me in no doubt that the breast would have had to have come off, another year and the story could have been very different. Why I'm 'odd' (unique is my preferred term) is that they would have expected my tumours to be oestrogen or progesterone receptor positive but I'm negative in both (so the cancer is not fuelled by hormones), but positive for HER2 (that's not so good). HER2 is a gene which produces a protein that acts as a receptor on the surface of cells, if you have a high number of these receptors they can stimulate the cancer cells to divide and grow. This is known as HER2 positive and tends to be more aggressive and faster developing. I think (I wouldn't take this as gospel) that the combination of ER-/HER2+ is less common, and even more so for my age group. I think what was also unusual is that they found some ER+ in the nodes, but I'm not sure if it's enough to be significant. Chemotherapy might be on the cards. Possibly. Will need to discuss adjuvant care with next expert. The wait continues (whilst I busily Google in the mean time).

Drain Removal... ouchy

Off we trundled to Morriston Hospital in Swansea to have my drain and dressings removed. The drain was stitched in, removal of the stitch was easy enough, though the withdrawal of the drain itself was toe curling stuff. A nurse offered her hand to grip... I hope she’s now got her circulation back. They are pleased with progress and I just have to return in three months for a check-up, an appointment date will be posted. Julia (a breast specialist nurse) mentioned that I could consider having a nipple tattooed on… but that is something for me to bear in mind for the future. If I am not happy with anything at all I’m to ring them; this includes comfort and how my right breast ‘looks’ to me. They have made it clear that they will do anything to help me on this journey. The nurses replaced some of the dressings, not so much for practical reasons but they wondered if the ‘reveal’ may be easier in stages for me. I can choose to face the scar when I’m ready.


Similar area pictured as in 'Blue Boob' post.
Now much more swollen and a little black and blue.
The swelling and bruising will go down given time.

I’d rearranged my two separate hospital appointments so they were both on the Friday… Singleton hospital is about 20 minutes away from Morriston and is where I was to hear my lab results. Unfortunately we discovered that Singleton had not yet been able to have an interdisciplinary meeting. Although they actually have my histology report they will need to re-book an appointment in a further 10 days time (they only meet once a week on a Friday). The breast care cancer team had tried to call, but of course we were on our way. The waiting is emotionally wearing, but on the other hand I’d rather not be given any incorrect information.

Wednesday, after a request from Jill, I'm having the Mirena coil removed. Mirena contains levonorgestrel, a type of progestogen which is slowly released over a period of five years or so.

The big MX

The day before my mastectomy operation was just perfect. My friend Alex from West Wales Therapies came to my home to give me a Thai massage, it was a wonderful gesture and a perfect gift. Pure escapism for a couple of hours. Maggie from Magatha Bagatha also popped round for a coffee and a chat with us too. She produced a patchwork quilt, exquisite in its detail. Personalised; cameras, G11, Cath Kidston, L luvs J, Preseli Hills, so many more squares full of 'me' things. It'll be our new family heirloom. Overwhelmed is an understatement.

I'd had a call after lunch from Morriston Hospital who were asking me to go in Wednesday evening, instead of early the following morning. I agreed to ensure we kept the bed. J and G11 came with me and as it was 8:30pm when we arrived at the hospital it was like the Marie Céleste. Eventually we found our ward and I found my bed. J and G11 couldn't stay that long as way past visiting hours, not that they were ever made to feel uncomfortable. I had to see a number of 'official' visitors, including my surgeon who proceeded to draw all over my boobs with a large arrow pointing to the right side to ensure they didn't remove the wrong breast! There was also of course lots of the obligatory form filling. I slept pretty well, I remember having a few tears but not so many.

I had a lovely long shower early Thursday morning and it was confirmed that the operation was to be the first of the day, 9am sharp. I was walked up to the theatre reception and filled out more forms there. I wore a hospital gown and my own slippers and was carrying a pillow, a blanket and had brought up my own sports bra. Once the admin was completed I was led to an outer preparation room with a trolley in it which I laid down on and here they administered the anaesthetic. I could hear lots of bustling and busyness going on beyond the large double doors that led into the theatre proper. There was a clock overhead and I remember noting it was three minutes past nine - the next thing I remember was waking up in the recovery room. I really, really needed to go for a wee, that's all I could think about. I held on for what must have been half an hour, (my head insisted I couldn't mention my predicament there so I kept stum!) I think I was back on the ward at 1:30pm (ish) and once the bed was safely parked the first (urgent) request was for a bed pan, sigh. By the evening though I was walking myself to the loo.

The medical crew on their rounds Friday morning indicated that I could go home that same day, I was recovering so well. I didn't entirely share their point of view. I felt physically exhausted as I hadn't slept well for a while and not at all Thursday night, (not due to any pain, just hard to nod off on my back!)  I worried that I had a lot of advice to take in yet, (including what to do with the drain to save the district nurse coming out, exercises, general dos and don'ts). Would I be able to absorb it all? In the end I decided to remain until Saturday morning when J would come and pick me up and hopefully he'd be around in visiting hours to listen to some of this information with me.


You can just see my drain on the left hand side of the picture, draining my right breast.
Looks a little 'perkier' than the left boob - but not bad at all :)
I can't bring myself to look too closely just yet though.

I have to keep my sports bra on (day and night) and not get my top half wet at all (I'm smelling quite ripe at the moment).  Two weeks after the mastectomy I can return to Morriston and have my drain and dressings removed and will be taking antibiotics until then. I also have to talk to a new cancer care nurse (at yet another hospital) about the results regarding the analysis of the breast tissue. My surgeon mentioned that micrometastasis disease was found in one of the three sentinel nodes removed, but not enough to remove all the remaining axillary nodes so that was reassuring. I'm not looking forward to the visit for the lab results, but my priority is to fully recover from the op now, so that's what I'm aiming to do.

Since my mastectomy I've had lots of visitors (some travelled great distances) who've come bearing gifts and cards, too many to mention individually (and I'd be mortified if I left anyone out), but each and every one so very precious. Thank you all.

Blue Boob

We had a gorgeous time in Aberdovey, this is a view from our bedroom window and it was a lovely tonic for us all.  It was most definitely the right decision for my well being.

Then back to reality.  Into Neath Port Talbot Hospital on Thursday the 4th April at 7:30am.  It's an amazing place, reminded me of a five star hotel with a section carved out for shops, galleries and eateries.  A wide open space three stories high.  Amazing.

The nurses were pretty amazing too.  I was talked to firstly by a lymphoedema care nurse (Sue), who discussed the things I need to be aware of.  As I'll have fewer lymph nodes to fight infection I will need to take care of any damage to my right arm immediately; from something as insignificant as a paper cut or insect bite to anything more serious. From now on I always need to make sure I get blood samples and blood pressure taken only from the left arm.  Also if I'm considering flying I need to order a compression sleeve from Jill (my breast cancer care nurse).  Keeping my skin supple by moisturising is a good idea too. Sue gave me some exercises to do which so far I've been keeping up with and she measured both arms all the way up from the wrist round the circumference at 4 inch intervals. Sue told me that we all have a different number of lymph nodes, some people might only have 10 and others 40.  Funny what you remember.

I was asked lots of admin questions and repeats of those questions and many forms were ticked, scribbled on and completed. I remember speaking briefly to the surgeon and the anaesthetist.

I undressed and wore one of their hospital gowns.  Then I was walked down to the radioactive isotope area where the injection was given to me in my right mammary gland. It felt like lots of bee stings, being pushed deep in my breast. Not too painful really, more uncomfortable and probably only lasted 10 seconds or so (though felt like longer).

Then I had to wait awhile.  I think the time was about 10am.  All jewellery had to be removed and as I wasn't wearing cotton knickers I had to wear some paper ones provided. (Not sure why cotton is important, I'll have to find that out). I also had to put on some compression stockings that ran from toes to thighs. 

Again I was walked to the operation area.  I was getting emotional and I remember a nurse holding and stroking my hand and talking to me... it makes me want to cry now. She was lovely, they all were. Very gentle. I was at the point of no return.  I drifted off in a haze of morphine and other drugs.

The red squares are my biopsy areas.
Blue dye and isotope injected near the DCIS to locate path to sentinel nodes.
These nodes have been removed from my armpit and have been sent to a lab for further examination.

I awoke in a recovery ward and was wheeled back to my bed - this was about 2:30pm.  I felt OK.  I remember being very, very hot and had to lie on top of the bedding with the window wide open. I was due to go home that same day, but I later came over very nauseous.  I just didn't want to eat anything for tea and could only face sipping water. The nurses gave me an anti sickness pill at about 10pm but it had no effect and at 11pm after what had seemed like an eternity I was eventually very sick. At last - I then felt so much better. Somewhere along the line I remember being given an injection in my stomach for the prevention of DVT. 

I hardly slept... don't know what was keeping me awake as it was a very quiet ward. After a long night Him and Her Next Door came to pick me up at 10am the next morning. (Him Next Door just had to sample a breakfast in the hotel hospital, it looked so good.) 

Although I've been given post op pain relief I've not had the need to take any.  I'm really feeling fine... in trepidation a little for the mastectomy operation booked for next Thursday but still positive and at least the first hurdle is over. I should get the results of the lab analysis of the removed sentinel nodes in a week or so. I'd still like to get off this roller coaster but I have to deal with the cards I've been dealt. So be it. "Onwards and upwards" as someone who's been through the whole process said to me.

Pack up your troubles in your old kit bag

As you know things have been stressful during the last few weeks... but today the sun is shining and after a difficult decision we're going on our little holiday up to Aberdovey today and over the Easter break. Four long, luxurious days. The dog is coming too.  I have no regrets and can't wait to get there now.  We are planning to r e l a x and watch the world go by.  The weather forecast is similar to today's; bright, cold and dry. Perfect.


Today is a beautiful, promising day.

We've already lined up an evening meal, no expense spared. I think an Indian is the most popular choice, especially with G11 and J.  I shan't mind - I am rather partial too, I might even order champagne.  We shall potter, walk along endless beautiful beaches, eat, drink and be merry.  Bliss.

This is totally unrelated but just had to just show you a picture of our ripening lemons (we have a few on this tree). It must be very happy here in the conservatory. Handy for all those G&Ts.

Happy lemon tree

SLNB

I'm back down in the dumps and been a bit hysterical. Tiredness doesn't help. And I've been Googling, not a good thing.  Jill called to say I will need a Sentinel Lymph Node Biopsy (SNLB) before my mastectomy.  This has been booked on the 4th April.

It's where blue dye is used with radioactive isotope (both in my case - I'm not crystal clear on the exact procedure).  The sentinel node is the 'on guard' node and is the first node in a group of nodes in the body where cancer cells may move to after they have left the original cancer. 

The radioactive isotope is injected near the area of DCIS and then a device is used to track it, identified further by blue staining. The benefit of a SLNB is that the surgeon only needs to remove the first one or two nodes that the cancer is most likely to drain into.  Once removed they are examined by a pathologist.  I won't know the results on the day.

If cancer cells aren't found in the sentinel nodes, that's good news. If they are that's not so good.

It's strange. I feel so well. In fact I'm never really ill and this procedure might make my perfect (physiologically speaking) body less perfect.  There can be side effects and tenderness that can last a lifetime. This worries me.

I'm trying to stay positive, and most of the time I'm not doing too badly. But this is an honest blog and honestly, at this moment I wish I could keep the status quo.

Talking helps. Just been doing that with someone who's already been through a mastectomy and node removal. Thank goodness for wonderful friends. I must stop roaming round the Internet willy nilly.