Gaye’s blog

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Okay, came home yesterday – back to real life, sort of!  While the care in St Andrews was good and I had lot’s of people coming in to keep me company, I’m glad to be back at home and for that stage of treatment to be (hopefully) over.  Francesca made me lunch yesterday and then cooked tea for the family, so I’m being spoiled.

Getting used to the new me is going to be a bit of a struggle.  While on one hand I don’t care, it still feels “wrong”.  Maybe it will get better as things heal.  At the moment, it’s hard to move my right arm due to the pain of the axillary dissection and it hurts constantly.  There’s also very odd pains across that side of my chest (obviously the wound site healing and I think bruising, muscle strain and nerve pain).

Time to recover from this first step of treatment and get ready for the next one.  Whatever it will be, it will have it’s own challenges so the stronger I can get, the better I’ll be able to face them.

Thank you to everyone who has been in to see me, called or sent messages.  The breast cancer diagnosis and treatment seems to take you out of the real world and put you in some sort of breast cancer vacuum.  It’s nice to know that I have a link to a normal life out there and that people care enough to reach out across that space, even when I’m hiding.

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I was bored yesterday and my mind was wandering down many odd paths… I was thinking, for some obscure reason, about the myth of the Amazon women and how they were supposed to cut a breast off so it didn’t get in the way of the bow.  Does that mean I can be a pretend Amazon?  Gaye – Warrior Woman!  Much cooler than a pink lady (I don’t even like pink!).

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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!

 

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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.

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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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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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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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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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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