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).