Still in hospital

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It’s Wednesday and the second full day in hospital since the op.  I didn’t really sleep the first night and I think I was running on adrenaline yesterday. I’m feeling a bit flatter today (ha ha…made a funny).  I saw Dave and the kids yesterday which was lovely and managed a walk in the garden here. Katy popped in, as did Jane who took the kids back to hers for awhile. I’ve had flowers, texts and phone calls.

Dave said to me on Monday when we were waiting for me to go to theatre, that he thought I was very brave. I don’t feel it, though and I’m sure I don’t act it.  There’s just no choice, really.  And while on one hand, I don’t really care about the breast being gone, it’s still very confronting.

Apparently, I will be here until at least Friday so I have time to get used to it by then!

 

Immediately post-surgery

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Came out of surgery a couple of hours ago. Dozing on and off and looking at the city lights through the window.  Apparently, surgery went well but no doubt there will be further results to come.  Very painful when I was in recovery but pain managed now.  Lots of texts with love from the kids. Dave waited patiently with me in the hospital room until they wheeled me out but this time I let him go home as it’s such a long drive so late at night.

I have been so fortunate with my family and friends. It seems from reading what other women post on the BC network that some people drop them like a hot potato after diagnosis.

I’m also very fortunate with my surgeon, Dr Kollias, who does a good job of showing a really caring manner as well as doing good surgery ( well to a novice, he seems to). Apart from all of the practical reasons for being disappointed about having to have the second surgery, it was such a shame to lose the breast as he had done such an amazing job.

Will update further later. Goodnight.

Short Update

I received a phone call from the surgeon  this morning.  Unfortunately, the results are not so good.  I don’t know any of the detail as yet – I have an appointment with him tomorrow afternoon.  The tumour was bigger than expected, which apparently is common with this type of breast cancer and I assume that means that there was not a good clear margin.  There is also node involvement but I don’t know how much.  I do know that I will be back in surgery sometime early next week.

Feeling a bit shell-shocked again.

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Still no results

I thought I’d get the results from the surgery late last week.  No joy.  I waited all through the long weekend, thinking that I would hear on Tuesday, but no phone call.  I guess they’re bogged down at the Path Lab due to the Christmas break but I want to know if I have to go back in for more surgery.  Or do I?  While I’m recovering from this better than I thought I would, I’m definitely not relishing the possibility of having to do it again.  I still can’t lift my arm, the whole area aches, I still can’t sleep, I think I’m starting to react to the adhesive on the dressings, and I’ve got what feels like friction burn under my arm (but could be adhesive reaction, nerve damage or the start of cellulitis).  And further surgery will no doubt mean not just a full mastectomy but also an axillary clearance which scares me more as it brings a big risk of lymphodaema and loss of strength in my arm.  And, of course, would mean that the cancer was on the move.

The GP said on Friday that I’m not to consider working at all in first term as I will almost certainly have radiation therapy as part of my treatment and that will knock me around.  That idea has been hard to cope with as I love my job, my colleagues are great and I really like working there.   But I’m not stupid – I agree with her that my health comes first and even before this happened, I was often so tired at the end of the day.

On the positive side, I am  healing well as far as I know.  The breast cancer kit that they hand out to everyone on this “journey” (hate that term and it seems that many other BC sufferers do too) says that regular exercise can reduce recurrence by 24% so I have started.  I was swimming in the short period before surgery but until I can go back in the water, that’s off the cards – not that I’d be able to stretch my arm out at the moment.  I am, however, trying to walk at least 5km each day.  I haven’t been able to do it in one go yet but taking two bites at it.  And when I get the go ahead to do more, I will.  I look at this as treatment for both body and mind.

Dave came home from the regular CFS training last night and gave me a card that had been signed by his colleagues there and told me that everyone had been asking after me.  It’s lovely that they are supportive and really important that Dave has that outlet and camaraderie.

With any luck, the phone will ring today and I will know what my immediate direction is – further surgery or meeting my oncologist.

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No results yet

I’m feeling very down today and can’t seem to lift my mood.  I went to see the GP this morning and everything is looking as if it’s healing well.  She’s given me stronger sleeping tablets because the others only seem to work for a couple of hours.  I’m dog-tired but the moment I lay down, I’m wide awake, can’t get comfortable and can’t stop my mind.

Plus, the special, free, Berlei Brunhildes have rubbed up the skin under my arm (the little bit that isn’t nerve-damaged and I can feel) which is really painful.

I’ve been waiting for the last 3 days for my results to be in – finally gave in and rang the surgeon this afternoon to find that they’re not and I have to wait until after New Year.

And why does this have to happen at the very best time of the year.  No, I don’t mean Christmas – I mean, SUMMER!  My very best, favourite time that I wait all year for and I can’t even go for a swim!  I know it’s small things but it just feels like an extra slap when I’m down.

Okay, whinge…whinge…whinge.  This too, shall pass.

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A quick update post-Christmas Day

I’ve been home from hospital since Saturday afternoon and while I’m much better, I’m still feeling knocked around by the whole experience.

Yesterday was Christmas.  We spent it at home, just Dave and me and the kids.  Our day was very gentle but a lot of laughing and excitement.  My beautiful children cooked the roast turkey lunch and decorated the pavlova.  They were a bit nervous about doing it but they went ahead willingly and we had a fantastic meal.  One of my favourite memories of the day is the three of them, lined up at the kitchen bench, peeling potatoes and laughing uproariously.

Now that the trauma of the surgery is over, I would also like to take the opportunity to say a big thank you to all of those around me who have been so caring and supportive.  From what I read of other women’s experiences, this is most definitely not the case for everyone.  I have been so fortunate with my family, my lovely friends, colleagues, and from others in my community who have offered practical and emotional support.

I know that this experience will be a long road and I’ve only taken the first steps on it.  I still have to wait for the results from the surgery so that is the next thing to face but I’m trying to take it as it comes and not focus too much on the whatifs that haven’t happened yet.

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Home from hospital

I’m now home from St Andrews Hospital and very glad to be.

I went in two days ago with admission at 9:30am.  Dave drove me in and I was doing okay (I think) until we got to admissions and then all I could think of was that 30 years ago, Lori was probably doing the same thing, with the same concerns that I have.

Admitted, then upstairs to do some more waiting.  Saw the breastscreen nurse and got some free Brunhildes (massive bras like the awful maternity ones) then more waiting.  Finally, after Dave went off to pick up his Dad from the RAH, they took me down to x-rays to locate the sentinel nodes with radioactivity.  Some incredibly painful injections, and more emotional tears, then Dave turns up out of the blue – very glad to see him.  Apparently, his Dad wasn’t ready to be discharged at all.  A number of x-rays taken, then some textra drawing on my breast, then more waiting to be taken by an orderly back to the room so I could wait!

Dave went off again to pick up his Dad and then came back.  Eventually, at 7:30pm I was taken down to theatre.  I was in the holding area for another hour and spoke to Dr Kollias and the anaesthetist.  I was taken to a crucifix-like bed in the theatre and that’s the last thing I remember before surgery.

Waking up in the recovery area, I felt extremely panicky and disoriented but they must have given me something to calm me down, I think.  The memories are very disjointed.  I didn’t remember until later the next day that Dave was waiting for me in my room – I remembered him being there just not the timeline.

Friday was spent mostly sleeping or coping with nausea, probably an aftermath of the anaesthesia – poor Sheryl came to visit and wasn’t there long before I sent her home ‘cos I was feeling so sick.

And so to today… I couldn’t wait to be let out into the real world again.  Nice to have a shower.  Lovely to be able to sit up without feeling erky.  I saw the surgeon this morning to be discharged.  No wonderful news (not that I expected any), just “we have to wait for the results – we both know it could go either way”.

I’m feeling sore and sorry for myself.  It’s so good to see the kids again.  They’ve been great while I’ve been gone.  Looking after themselves and sending me lots of virtual and verbal love.  And Dave has been great – even spent time during the night making this blog a happening thing.

I will get the results of the tests on the tumour and nodes sometime later next week.  In the meantime, it’s Christmas Eve tomorrow and fortunately, the whole Christmas thing is sorted, so we’ll spend time together and take it easy.

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The experience so far…

17 November 2017: Booked in before work at Unley Breastscreen for a screening Mammogram.  Just because I was making appointments for health checks – eyes, PAP smear, did the bowel screening…

Two weeks later, get a call from them asking me to come in for an appointment in two days time, on 1st December, as there was an area in my right breast that didn’t look right.  I was told that the appointment might take up to 4 hours.  I spent the next couple of days trying not to think about it too much.

Dave met me at work and drove me to the appointment.  I was taken in by a doctor for an examination.  As it was her first day at Breastscreen, she was partnered by another doctor who also examined me.  They both thought that they could feel a “thickening” but not positive.  Off to another room for a diagnostic mammogram of the area, then into another room for an ultrasound.  This was very thorough and included the underarm area.  The sonographer was no sooner finished than a man came into the room, introducing himself as the radiologist.  He told me that I needed to have a core biopsy under local and that it would be done immediately.  The sonographer got my glasses so that I could see the form I was signing, I was turned around on the bed and had an anaesthetic needle in my breast.  Then he took 4 samples of the tissue – the third one apparently hadn’t enough anaesthetic as he noticed when I just about hit the ceiling!  Very sore and sorry for myself and packed with ice to reduce the swelling, Dave and I were told by the nurse that I would need to wait until Tuesday afternoon(this was Friday, of course) to find out the results as there would be a multidisciplinary team meeting that afternoon and they would review everything then.

Tuesday afternoon eventually came and again Dave picked me up from work for the appointment.  We sat in the waiting room and saw women come out, one obviously relieved, the other not.  We didn’t have long to wait before I was called in.  The doctor introduced himself as a breast surgeon consulting with Breastscreen.  He then went on to tell me that I had a 2.5cm tumour that it was malignant – invasive lobular carcinoma – and the bottom dropped out of my world.  I honestly don’t remember a lot of what he said except that I would need to get a referral from my GP and that he was stressing that it wasn’t a medical emergency.  Although it was late in the afternoon, when the clinic rang my GP, Sue Boyer, she said that she would wait for us to get up to Gumeracha.

We picked up the girls on the way and drove straight to Gum.  By the time we got there, Sue told us that she had taken the liberty of making an appointment for the following afternoon with someone she considered to be one of the best breast surgeons in Adelaide, Dr Jim Kollias.  I don’t remember much about the consultation but she sent us over to the hospital to pick up some sleeping tablets and told me to take them.

The following afternoon, we went to see Dr Kollias.  Another examination, a discussion about the cancer (he said that the screening sonographer had done a remarkable job to pick up the cancer as it was very hard to see) and a recommendation that I have a partial mastectomy in the first instance but that I needed to have blood tests done and scans to ensure there was no further spread to bones or organs.  Blood test – easy.  Scans took almost the entire day at Calvary and not so easy, emotionally.  From the moment I drove up Strangways Tce, I was assaulted by memories of seeing Lori in the hospice there.

Another weekend spent waiting anxiously with an appointment to see Dr Kollias on the Monday night.  His first statement when we were finally shown into his office was that the scans were clear.  I promptly embarrassed myself by bursting into tears.  So, back to what he had originally said, partial mastectomy with sentinel nodes taken.  Based on whether there are clear margins of tissue around the tumour and if the nodes are also clear will determine whether I go back in for a full mastectomy the following week.  Then the tumour will be scanned so the oncologist can suggest a course of further treatment/s.  It could be hormone therapy, radiotherapy, chemotherapy or a combination of them.

This leads me up to tonight – my last night before treatment starts.  I’m feeling anxious about the surgery.  I’m feeling confronted and confused about the concept of someone cutting off part or all of my breast – not because of any aesthetic attachment to it but just that it’s a surface part of me that I can see.  Not that I’m feeling very partial to my right breast at the moment – we’re definitely not on the best of terms (and I’m feeling a little ambivalent about the loyalty of the left one, if truth be told).  And, of course, even though I’m trying to be positive and take one step at a time, sometimes the emotions overtake me and the future is too frightening to contemplate.

I can’t believe that it has only been just over two weeks since diagnosis.  It seems like this has been my reality for so much longer and I know that this is just the start of it.  I’ve had eight or nine appointments since this started and it has completely consumed not just my life, but the whole family.

Tomorrow, 21 December, I go in for surgery.  I should be discharged on Saturday, 23 December, just in time for Christmas.  At least all of my Christmas shopping is done and the presents wrapped.  I’m not sure how incapacitated I will be but I’ve already told the kids they’re cooking Christmas lunch!

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