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.