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