It's been a long while... Life has been moving forward in it's indomitable style and there have been some major life events to mention.

1). My brother got married (again :) ). It was held here in Llysyfran so life was hectic planning and executing the event of the year.

2). G14 and I went on a summer holiday adventure and took in Iceland, Boston, New York, Toronto and Montreal (to name a few). It was amazing... dreaming of selling up and getting a camper van now.
3). G14 has carried the Cytmomegalovirus at some stage. We can't find out if this was so at birth because her Guthrie card (aka heel prick test) has been destroyed (this is normal as only kept for 5-7 years in England).  Nevertheless she was asymptomatic at birth (no symptoms presented) but now has permanent hearing loss and worryingly this could be progressive. I'm really concerned. G14 has to be kept under regular review with frequent auditory tests. To find out more about CMV click here. It's tragic that public awareness about CMV is so low as it's very common (betwen 50-80% of the UK will carry the CMV virus) and poses such a major risk to pregnant women. It causes more birth defects and congenital disabilities in children than all other well-known diseases, including spina bifida, Down syndrome and fetal alcohol syndrome.

As with regards my cancer, although a great reconstruction I still have body image issues... I just don't feel 'whole' and definitely not as sexy.  That's something I and my self esteem need to work on.

This post is a bit up and down, and that's how it's been during my near two year leave of absence.

Yikes... Christmas is nearly here!

Yet again it's been a while.

I'm on the whole feeling fine; had some leg cramps, hot flushes and felt a bit fed up, side effects of Tamoxifen I think.  The side effects are mild though and they don't really cause me any major day to day problems.

I've become continuously tired, a bit lethargic and 'slow' (mentally too - I didn't have much brain capacity in the first place.) This is the most debilitating side effect for me - although by no means extreme. Everything takes a bit of an effort - especially anything physical. I seem to get out of breath quickly now - which is a common side effect of Herceptin.  I had a second MUGA scan and my heart functionality has dropped by 10%.  I saw my oncologist on Thursday and now because I've signs of mild heart failure (i.e. the shortness of breath) I'm on yet another tablet (Ramipril) which helps to protect the heart. It facilitates a reduction in blood pressure (mine is naturally low) so I could become dizzy or faint - sensibly I must take it last thing at night, when I'm in bed.  I have to go back to the surgery on Monday and get my blood pressure read and then have it read regularly whilst on the medication. I'm not clear how long I need to take it.

I'm a bit fed up as Christmas is round the corner and I want to drink some alcohol!  In spite of the drugs I think I'll manage to sneak the odd beverage in - my brain capacity might not be firing on all four cylinders but I can always work out where my next drink is coming from ;)

Apart from the above news I don't have much to report - except we've had lots of visitors and little days out. I've had a continuous stream of cards, gifts, kind words and support from friends, family, professionals and strangers (somebody came up and gave me a cwtch outside the hospital).  In some ways I feel stronger than I've ever felt before in spirit and I refuse to let cancer break me - though I know I really am one of the lucky ones.  Give somebody a hug this Christmas, anybody. It's the greatest gift.

Happy Christmas \ Nadolig Llawen

Chemo done - check

Well it's been a while again... (where did August go?) The really good news is I've finished chemo - whoop! No more visits to hospital with high temperatures were incurred and the side effects remained minor (though I did have an outbreak of acne at about the exact same time for both the final cycles).

I've since had one cycle of Herceptin without the TC chemo. It's intravenously taken and so involves a hospital visit, but has a minimal list of side effects (they just monitor your heart). Herceptin blocks the HER+ receptors. It was a breeze.

I went to see my oncologist in August who told me I will also have to take a daily tablet of Tamoxifen for five years.  This is because they found I was ER+ in the nodes and I guess they want to throw everything in their armoury at it, just to be on the safe side.  Tamoxifen blocks the ER+ receptors. I got quite worried about this, Tamoxifen has been in the news a lot lately and it doesn't always make easy reading.  Still, like most things, once you start the regime many of the demons in your mind are pacified. I have been most worried about weight gain, depression and feeling nauseous.  I have felt a little sick (eleven days in), but I'm going to continue to take and monitor closely. Any worries and I will definitely be raising those in December when I see my oncologist next. 

Last Friday I went to Morriston Hospital to see the surgeon who did my reconstructive surgery. She is very pleased with her work; as am I. We've decided to add 'the cherry on the cake'.  This will entail stretching the skin so there will be some excess in the nipple area and then constricting the base to make a little protrusion. To complete the effect a tattoo will be added for the aerola and nipple colouring.  The procedure will be done in about six months when everything is completely healed and settled.  It'll be done under local anaesthetic and I'll have to return a week later to get the dressing removed, but that's it.  Simples.

Waiting for the cherry.

I'm feeling pretty good, not quite at the pre-chemo level of health, but not too far off.  It's a shame that autumn is drawing in as I'm really fancying some of those coastal walks, and that's a good sign.

The current state of my hair bum's fluff!

Addendum: Want to know what's involved in the NHS breast screening appointment? Have a look here; breast screening facts a balanced and complete tool you can use to find out more. I was one of the ones worried about over treatment (initially diagnosed with 'just' DCIS), but my life was saved.

Too tired to blog (much)

TC chemotherapy x 4. Herceptin x 12.

Me sporting the wig

I am in my second cycle (cycles are every three weeks) and it seems to be hitting me harder than the first, could be to do with the weather, it's very (very) hot and humid now. I feel tired and out of breath, but generally the side effects have been manageable, nothing overwhelming. More a feeling of a two day old hangover that continues for 5 or 6 days; nausea, tummy upset, acid reflux, dry mouth, weariness.

In the middle of my first cycle I ended up in hospital because of a high temperature. They believed this was due to the eight daily injections I had taken to stimulate the white blood cells in my bone marrow actually doing too good a job.  I am on a now more intelligent, (therefore probably more expensive) solo injection that just watches my count and kicks in only if needed.


Cold Cap

I've been trying the cold cap to save my hair, not sure it's really working... I'm on day 6 now of the second cycle and really it's been coming out since the day after the second chemo session. It still looks OK to the untrained eye, but I can see it's much thinner.  I have a 'Plan B' with my wig waiting in the wings, but it's still upsetting.

I ended up back in hospital for five nights this second cycle, again with a raised temperature. They now think that there might be an issue with my implant.  When my white blood cells are at their lowest the infection seems to head straight there. My silicone side goes pink, tender and enlarges (which wouldn't be too bad but the left side remains a C cup and I end up looking distinctly lop sided). Investigations will have to wait until chemo finishes.

I now definitely don't think the cold cap is working, it's day 20 of the second cycle and I've lost a lot of hair, especially on the crown of my head.  I've had it cut much shorter as I was continually picking up copious amounts of long hair all over the place, eclipsing the amount the dog sheds!

My short and thinning hair

I'm posting as Him Next Door mentioned today that it's been a while since I blogged last!  So I thought I'd better put something up, even if it's a bit incoherent and a jumble.

Here we go....

It's been very hard... I can't tell you. The decision to either allow the risk of cancer cells to float round your body (albeit a small one) against volunteering to poison yourself.

Adjuvant treatment is an insurance policy. No one can tell you whether if you take it out you'll need it, or even if you do it will stop the worst happening.

I've been in a state - though to be honest for as much time as possible I've developed the ploy of 'head in sand'. The only trouble is when I start to lift my head up out of said sand I'm rendered immobile by fear.  The what ifs, the whys and the wherefores whirl round my head, at ever increasing speeds.

In the end; after a week's holiday with all my family, I finally stepped back on to the NHS treadmill and have let the wheels of the hospital machine grind back into action.  I can always step off can't I?

Thursday I went to Withybush (my local hospital) to sign the consent forms and apart from wondering what the hell I was doing in a place full of sick people and then promptly blubbing all over the nurse, it didn't go too badly.  My BCN nurse there, Caryll was wonderful. Said all the right things and I did in fact begin to feel better.  Ahh, talking you see does help stop those thoughts whirling.

Whilst I was there I browsed through some wig magazines and chose four cuts all of different colours.  This felt surreal, still not sure they are actually for me.  I can try them on at home once they arrive and then choose the one that I like best, if it's the wrong colour way and I prefer another then they'll simply reorder for me.  I've gone for a slightly longer style so that it can be cut to suit.  My NHS Health Board will provide a £90.00 voucher towards the cost (they start at around £90.00).

I then tried the cold cap (this can save hair loss), for 15 minutes.  It gives you an ice-cream headache which isn't too bad at the moment because we're in the middle of a heat wave.  When actually having treatment you have to wear it for half an hour beforehand then up to two hours afterwards, (which lengthens your hospital visit – except for the first one which is a day anyway).  They wet your hair so will be colder still. Yikes. Think I'm already going through quite a bit of discomfort so not sure I'm keen to add to that. So I'll see.

Today I've just returned from having the MUGA (multigated blood-pool imaging) scan, which checks how well your heart is functioning.  Because I will be on Herceptin (which can affect the heart) this is a personal bar reading, they scan again at three month intervals to note changes, which ultimately helps detect heart failure.  The good news is my heart is strong enough to take the first dose of Herceptin.

Well that's it. Big day tomorrow. First chemo cocktail. 

Life is not a dress rehearsal. Live for today.

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.

Hospital Visit

Popped to Morriston (Swansea... a good hour's drive away) today, Friday. I was overwhelmed on arrival. It's such a big hospital, more a village; new, modern and in the throws of expansion.

Morriston Hospital

It wasn't a long wait until I saw my female surgeon. I immediately liked her... sadly (after squeezing my belly) she said I didn't have enough fat to make more than an A cup (I'm a C cup and it suits my frame.) It's the first time I wished I had a larger belly (I thought I was doing quite well in that department.)  So the DIEP is out, in fact any procedure that uses a flap of my own tissue is really not viable... I just don't have enough.  She also mentioned that I had very youthful breasts (just have to drop that in!)  Kinda sad now I've got to lose one.

So we're down the implant route. I have to get my head round this now, after being so set on the DIEP... all change. I was told I will look fine in a bra but when undressed there will be an obvious difference between the two breasts. The implant will not 'age' with me like my own transferred body tissue might have.  I've never been keen on the concept of silicone implants; they don't have longevity (so will need to be replaced in 10 years or so) and they can split.  Although I've been repeatedly reassured they are safe.  Later G11 made me chuckle when I mentioned I was worried about foreign bodies too, "...couldn't I get one from the UK?"

On to the positives.  I'm undergoing a relatively new technique using a surgical mesh (Strattice®).  The material is derived from porcine skin that has been treated and preserved so it can be used safely inside the body.  The mesh works like an internal bra, cradling the implant and allowing some of the natural droop of a normal breast. Apparently very few surgeons in the UK are able to perform this operation, two are at Morriston and one of those is my surgeon.  So I'm fortunate to be able to take advantage of this procedure.  She's going to save my skin too, though regrettably can't save the nipple. Another plus point is that it will be a much shorter operation than a DIEP would have been (down to 3 to 4 hours) and a much shorter recovery time (only 2 - 6 weeks).  As I'm always running around doing things and not very patient, bouncing back quickly is quite important to me.

My surgeon wants me in on the 28th, that's March. That's less than two weeks away.  Typically it's the Easter bank holiday weekend and the only time we manage to get away on a break as a family unit is on bank holidays. So I'm torn.  She's given me another date of the 11th of April.  I'm to chat to J and G11 to see what we all think.  My surgeon has to cancel other operations to fit me in so we have until Monday morning to decide.

The hospital suggested I have my pre-meds to save me coming back, it meant a bit of waiting around but as it's a long round trip it was well worth doing.  I got a bit upset when they said they were going to take photographs, (I could refuse of course.)  In the end though I ticked all the 'release' boxes; publications, research, training. My right breast WILL live on in all its youthfulness!

It's now Monday and after having the weekend to think about it and talking it over with J, G11 and with Jill I have decided to go in on the 11th April.  I'm going to have the best holiday at Easter and make it one we'll never forget.  Then from the 11th I can begin to start moving forward again.

DCIS

I'm writing this before I see the breast cancer nurse.  I might not publish it... but I probably will when I feel the time is right.  Some friends and family may not understand this but for me it's cathartic - this writing lark.  And if I can help just one person on a similar journey it'll be worth it. 

I went to my first breast screening really to get Her Next Door along.  After 70 a certain age you don't get invited automatically and I'd missed my original appointment because of tooth problems.

There was a Breast Test Wales mobile unit travelling round Pembrokeshire so we caught up with it in Pembroke Dock.  It was a more uncomfortable experience than I realised and I remember wishing that I didn't have to go through it again in another three years. Be careful for what you wish for.

I received a call back letter to attend an assessment clinic in Swansea - I postponed my appointment as it clashed with something else I had arranged (delaying tactics?) Eventually though my re-arranged date arrived. I had a second mammogram and they showed me some white dots on the x-ray known as calcifications, although some were 'suspicious' and were not the right shape\density (or something) in two areas of the right breast. I remember looking but not really seeing. The doctor could find no lumps and the long and short of it was I had a core biopsy taken.  A computer and mammogram were used to accurately find the calcifications that needed closer examination. It was a long process and the computer crashed, which meant I had to remain squished and in place whilst it was rebooted. They told me not to jump as the staple gun (that's what it sounded like as I didn't dare look) went off.  Hard to do.  The results would come back a week later.

Off to Swansea again - the drive is long.  I had a bad feeling. That feeling was confirmed when my breast care nurse opened the door. And with a sledgehammer that was backed up when I saw the doctor in the room.  I remember very little.  Except the word mastectomy, 8cm and I didn't have secondaries.  They've picked up Ductal Carcinoma in Situ (DCIS - I wish I didn't have to learn this lingo).  The positive is that it's contained.  So breast off, problem gone. 

I've gone through the remit of emotions; denial, shock, bereavement, anger, relief, sadness, feeling fraudulent (some people don't think DCIS should be termed a cancer - it's rather a pre-cancer) and of course why me! 

I've certainly wept in the middle of the long nights for the upcoming loss of a part of me that defines my femininity. It's always been a favourite play thing for J and I in the bedroom (sincere apologies to any relatives reading this, I'm sure that's way too much information) and I fed my daughter G11 with it for many months - I was so proud to do this. Both useful and fun!  Now it is to be cut off and discarded. I find it difficult to get my head round that.

I'm waiting for the nurse this morning who is coming to my home to discuss my reconstructive options, there is a lot of choice which is rather overwhelming.  They would have talked to me in Swansea for as long as I wished but at that time I just wanted to get out of there, run away.

The nurse has now been and gone. Think I need some time to digest what she has said... my cells are in grade 2 and 3 which means some are pretty active little buggers (the grades range from 1 to 3).  There is no desperate rush for surgery - I have weeks, but can't wait until next year.  So Jill (can't keep calling her the breast care nurse, I have a feeling I will get to know her quite well) suggests I talk to the surgeon. The operation I'm currently favouring is DIEP (stands for deep inferior epigastric perforators, which are blood vessels) and so it looks like I'll be getting a tummy tuck thrown in. The recovery time is longer but my own fat (which I have some of) and skin is used and this particular procedure also preserves the abdominal muscles.  After this meeting I will tell you more, there are a lot of reconstruction options and this is just one of many procedures.  I may change my mind yet... which I am given full licence to do. They are keen that I feel happy with my choice. 

At the time of the mastectomy they will also examine my lymph nodes and of course all the tissue will be inspected for any signs of invasive cancer.  What they have sampled from the biopsy is 'non-invasive' (i.e. in situ and contained within the milk ducts) but of course there is a large area yet to be looked at. That's a new niggle at the back of my mind.

I haven't hit the menopause yet and am not sure whether oestrogen is a factor. I also have a coil, but think I will wait now for the results after the mastectomy to decide whether to have it removed or not (at least the thought of that pales in comparison).

That's it for now, I'm feeling quite upbeat... course that changes from moment to moment. xx

Cards, messages and 'The Tree of Life' made for me.
Friends and family I love you! xxx

Snow

Our total whiteout...


Someone's loving the white stuff.




And we had to have a snow dog!

Thank goodness for our oil lamp too.

Led to a 24hr total blackout...

Luckily the Rayburn doesn't need electricity;
so we had hot water, warmth, cooking facilities
and with the wood burner in the snug we were toasty.

Them next door joined us for the afternoon & evening
as their home is totally dependant on electricity.

 

Nadolig Llawen

Christmas with bells on

What do I most look forward to at Christmas?

Well for one it's not receiving the credit card bill in the post...

My stress levels continue to rise throughout December whilst I glare and mutter at the grid locked car parks in town trying in vain to either find a space or leave the blimmin place.  Only when safely inside my metal box do I rant though - giving all the expletives I've ever known a right old airing.  The queues at the tills once inside the shops are the same, only a little more up close and personal.  A rugby scrum without the ball.

I find the challenge of trying to think of imaginative gifts that cost a fiver but look like I've spent £30.00 gets more difficult year on year.

I don't like wrapping presents either... I'm afraid it's cutting erratically, wrestling with the sellotape, slapping on a label.  Job done.  The quality is never very good but definitely degrades as time goes on. 

Other things that make my festive cup runneth over include unravelling the tree lights and then trying to 'artistically' wrap them around the tree without losing all the needles in the process.

Writing hundreds of cards, some with unreadable hand scripted notes and then going bankrupt sending them all.

Reading others' computer generated and generic round robins to find they are living the perfect life, with perfect homes, A* grade children and at least three exotic and expensive holidays to write reams about (photos included - just to prove it).

Smiling inanely as I open my fifth present containing notelets.

Playing the obligatory round of charades - I find it difficult to hold my stomach in so it looks flat(ish) from all the angles.

Strangely, removing all the cards, tree and decorations after the event. The house always seems so bare and empty afterwards and it hits me that there's only the rest of January to look forward to. Oh joy.

Why do we do it? 

For me, G11's smile is probably why.



I can't find a recent photo of G11 (I'm always too busy just watching her face)
so instead here is the smallest member of our family enjoying Christmas.

I wish I was a bear

Wow, it's been a blur. Dad's hospital, not the most local, was an hour away, so visits meant every afternoon lost for two weeks. Amongst this disruption to the daily routine J and I had to take up the reigns of G11's after school activities, which is no mean feat. Usually we tend to do two of the five but for a while when Dad was hospitalised or back home and recuperating we were up to the full quota, and everything in this neck of the woods is half an hour drive away!

Old friends coming to stay - and us visiting old friends. My friend's wedding in England to attend and J's Mum's 90th middle of November.  Between these two momentous celebrations we were trying to arrange a craft fair to raise funds for our local church, often an organisational nightmare... It took up a surprising amount of free time. I remember saying 'never again' at least once a day for the week beforehand. 

G11's homework is serious and nightly. We spend more time encouraging, supporting and providing the space to do it in than we have ever done before. It's tiring - and not just for G11.

Our own work too has become incredibly busy, which is a good thing, but when you work for yourself and the buck stops with you this can mean long days to keep on top of it.

They say Christmas is coming.

Please I wanna stop now and hibernate until January.
 

 

Dog cruelty?

G11 has made some rather delicious dog biscuits crammed full of bacon.  The dog knows this as she was present through the whole cooking process.  Topsy really can't fathom out why she can't wolf them all down now and refuses to leave the kitchen whilst the darn things continually tantalise her as they cool.

Unfortunately G11 and her BFF H10 are focused young fund raisers for the Dogs Trust and are baking in earnest to sell doggy treats at a local fayre.

So I'm afraid Topsy Dog, that one little taster titbit was your lot. 

Come to me, come to me.

Emotional Roller Coaster

An old friend of mine (old in the sense we’ve know each other for a few years) got married last Sunday 7th October (in Canada). Fortunately for my bank balance Nicky had a part deux in the good old UK, in her home town of Trowbridge in Wiltshire.  Nicky’s been out with some wankers unsuitable men in her time, but now she’s truly struck gold.  

Purely selfishly the only fly in the ointment is that her home is now in Quebec, so inevitably I won’t get to see her as often. Thank goodness for the Internet – it’s such a great way to keep in touch, especially with the everyday events of life that would be passed by in a letter. One day I will make it out there - but sadly, due to financial restrictions and work commitments it may not be any time soon.

Derek’s dad (Derek was the lucky groom) talked about octopi. He pointed out in his speech how the tentacles of one family reach out and entwines with another to make a new tentacle when a marriage takes place. Derek's dad also originated from the UK and met his Canadian wife after being stationed there in the war. History repeating itself (without the help of the war effort this time).

Even though I’m not technically family, I definitely felt welcomed into Derek’s clan and with open arms.  So much so the thought brings a tear to my eye even now.  It was a fairy-tale wedding and is a real love match.

Did you know, in Quebec married women keep their maiden names? (No neither did I).  Apparently saves on the paperwork if they divorce, (not that there is any chance of that happening in this case!

Quote of the wedding (you had to be there). Derek got up to do some thank-you's.  “I’d just like to thank (pause…), I’m not sure I can bring myself to thank Hitler.”

 

At the same time as the wedding Him Next Door had gone and got himself a bed in the local hospital, (well not so local but that’s another NHS story).  A previous operation didn’t go quite to plan and it suddenly hit home with some force that he’s not invincible. 

My emotions were a roller coaster all weekend, but all’s well that ends well.  Him Next Door is now enjoying the hospital Cordon Bleu and resting up (it looks like he might be home next Monday).  Nicky and Derek – well they are happiness personified and I wish them all the joy together that they truly deserve.