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  • All about Gertrude

    Gertrude is the name we decided to call my cancerous breast hence the title of this blog. Although I had to keep my breast through chemo and radiation due to the nature of IBC - once it 'blew up' it no longer looked like my breast and I couldn't wait to get rid of it. Calling it Gertrude was a way of seperating it from myself. This main page is where I write about the general goings on that relate to Gertrude, there is another page that are more a diary of treatments etc This blog is a public blog so although I am being very honest about my battle with Gertrude I have "changed names to protect the innocent" - because everyone can see it if you write comments on the blog pages please use the same abbreviations for other family member or friends that I do. Please feel free to ask questions if you want clarification because then other people who might have been wondering the same thing can read your question and our answers.
  • Abbreviations

    OH- Other Half (Hubby), OD- Oldest Daughter, MD- Middle Daugher, YD- Youngest Daughter, SB- soulja boi MD's fiance in the army (now ex fiance), OD's R OD's partner, BS- Breast surgeon whose initials just happen to be BS as well, BC- our GP (family doctor), Dr H- my medical oncologist, all other friends family etc will be referred to as initials etc
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  • SUSAN’S ARMY

    No Princess Alone button

Oh damn…Odema

My right arm has been getting  progressively more tender and achy so I rung my breast surgeons nurse yesterday to see what she thought I should do about it.  I can access lymphodema therapists through the Cancer Society but with mine and OH’s trip to Cairns fast approaching I really needed to get it under control. 

She put me in touch with a private lymphodema therapist but she cant see me until the 16th, the Tuesday before we go.  The reason she can’t see me until then is she is about to go to America for a conference and I was really impressed that she bothered to ring me on her own time – about 8.30pm last night – to see if she could help give me any advice or massage tips over the phone before she went and to organise to see me as soon as she comes back.  When I see her she will  tape my arm to give added compression for the air flight as well as me wearing the compression sleeve.  I  got the compression sleeve today and the difference it made to the ache in my arm  was immediate. I will wear it all the time for the next couple of days apart from the night times and also get OH to do a light lymphatic massage – he has to stroke my arm like he’s stroking a cat ….Meow….Purr…LOL.  Hopefully this will ease the pain a little bit and make sure the lymphodema doesn’t get worse. R, my friend, at the corsetierre’s said my arm might be quite achy for the next 6 months to a year

As part of the ‘Pink Pilates’ programme I also have lymphatic exercises to promote lymphatic drainage but even though I was doing them the odema/pain was getting gradually worse.   BS had warned me that I was going to be prone to it but I didn’t realise it was going to effect me quite so soon. 

I was thinking about the fact that I may be dealing with this for the rest of my life and I think it is a small price to pay  for having a chance to live the rest of my life.

Getting there…

Well, I have kept getting more active this last week.  The only major issue I have at the moment is a bit of tenderness in my right arm about half way between my shoulder and elbow on the underside.  The physio thinks it is to do with lymphodema.  I think if I have active days I need to lie down for a short time in the middle of the day with my arm elevated instead of spending all day upright with my arm hanging down collecting fluid.  I sent an email to my cancer liason nurse to see if she thinks I need to see the lymphodema therapists at the cancer society.  I am doing my pilates once a day on my busier days and twice a day on my not-so-busy days. The mobility /range of motion is improving gradually every day. 

Last week I achieved quite a bit  – I organised an appointment at the corsetieres for my mastectomy bra and prosthesis – this will be happen on the 9th of June.  They are also going to put a little pocket for a prosthesis in my existing togs so that I can swim in the resort’s pools while we are in Australia.  There is apparently seven different pools!!!  Can’t go therre and only look at them!

I also caught on a lot of little errands and while I was out doing them I made sure I got my cardio exercise by parking my car at one end of  town and walking to the other.  I am supposed to try and get 20-30 minutes cardio exercise by walking 3 times a week. 

On Wednesday I had lunch with sis M and niece S and afternoon tea and usual activities with YD.

On Thursday I had my physio appointment for my ‘pink pilates’ she is happy with my progress and is giving me a few more exercises to do each time I see her. Some of them are about regaining my mobility in my arm and some of them are about improving my overall strength and fitness.

On Friday I had my herceptin chemo in the morning at Auckland Hospital. I drove myself in (this last week is the first week I have driven myself around much – no longer have to use the squishy cushion under the seatbelt.) and on the way home I stopped off at Sylvia Park shopping centre to do a couple of errands and get my exercise by working the length of it and back.

After being a busy beaver for the last 3 days and having a few problems with my arm I decided to give myself Saturday off and just have a quiet day at home, as I had already made arrangements with YD to do stuff with her on Sunday.  On Sunday OH, YD and I went to Botany for lunch and had a wander round there and did grocery shopping.  On the way we stopped off at Manukau and bought me a new digital camera. 

Last night and today  I have been playing with it and installing the software on my computer to down load pictures etc.

Its official

The initial pathology results at my post-op consultation showed no evidence of cancer but my surgeon wanted a resection and recheck to make sure. I recieved the letter in the mail yesterday that I am officially NED (no evidence of disease – in remission or what ever you want to call it).

My oncologist says with these results the chances of recurrence are greatly reduced.

When I was talking to my hubby this morning after I had rung the surgeon just to clarify the way they had worded the letter – I said “the percentage chance of recurrence is now one I can live with” then I burst out laughing because I realised that was true both figuritively and literally.

It’s the little things

It’s the little things that are important to me in both positive and negative ways this week.

On the positive side my recovery is going really well but is measured in the little things that I can do. 

Little thing #1: I can lift my right arm up enough to get my t-shirts and jerseys on – don’t have to rely on button-up or zip-up tops

little thing #2:  each time I do my pink pilates stretch exercises, my right arm gets closer to the floor.

little thing #3:  I can cook, clean, and do some of the housework. Now is that a positive or not?  LOL

little thing #4: I can drive myself – this is a bigger thing than some of the others as it makes me feel more independent. 

little thing #5: I have taken the surgical tape off the scars and yesterday I wore a t-shirt but was braless all day.  I find I am really comfortable looking down and not seeing  anything there on the right side.  My overwhelming feeling when I am looking at it both clothed and unclothed is the relief that the cancer is gone.

I was talking to the mastectomy corsetier who I have an appointment with She told me I was a breast cancer survivor (she herself is a 17 yr survivor) and I realised I can’t quite get my head around calling myself that just yet.  I think I will feel more likely to call myself that when I have recovered a bit more. 

couple of little negative things –

little thing #6: every so often I overreach myself – for example trying to put something on top of the fridge – and then I realise that I can’t do the same stuff with my right arm that I can with my left.

little thing#7:  when I look down at my abdomen without the G-cup boobs above it to balance it, it is looking decidedly chubbier than it used to. Also my fat roll on the right side of my waist is slightly bigger than the left side due to the liposuction she did on the left side to balance the fat rolls beside my boobs.  Its funny because nobody else notices except me until I have pointed it out to OH and OD – definitely gives me the impetus to lose weight and tone-up.

little thing #8: I am still getting quite tired easily so if I have a day like today when I have a productive morning and early afternoon – pilates, laundry and  doing some errands downtown the exhaustion catches up to me about this time of night.

I am making sure I get up earlier about 8.30 am after a couple of weeks of sleeping until late morning and wasting the days.  I’m trying to get up early and go to bed earlier at night.. I have always been a bit of a night owl – my old typical bed time pre-Gertrude was always about midnight and I have been going to bed about that time since surgery then sleeping until midday. 

Because I am getting busier. time seems to be zooming past very much faster.  Its only 4 weeks until OH and my trip to Australia.  Hopefully my recovery is on track and I will be almost back to normal by the time we go.

Live long and prosper

I thought this was a very suitable title to the blog post as for the first time since I got diagnosed I feel like I really have a good chance to live a long life.  It also lets you in on a little secret – I’m a closet Trekkie.

OH and I went to see the new Star Trek movie last Saturday and it was excellent.  We have been on movie “dates” the last two Saturday nights (saw “Wolverine’ the first time).  This is because it is away of me having some time out of the house without doing anything too strenuous. 

 I am doing all my exercises and the mobility is returning and the pain easing.  I went to my first “Pink Pilates” session at the physiotherapists on Monday and that was very useful as she did a whole lot of measurements to gauge exactly what movement I have in my right arm.  I have a very mild touch of lyphodema – just a little bit of fluid collecting around my wrist so she gave me some exercises to do to counteract that and ensure it doesnt get any worse.  One of the most interesting things was that she noticed straight away that I wasn’t breathing properly – I was shallow breathing and probably have been ever since Gertrude “blew up”and became painful.  I need to retrain myself to breathe from my diaphragm.  I go back on Friday where she will give me a exercise plan and then I will probably see her once a week or so for her to revaluate where I am at and make any changes to my exercise regime.

I have been feeling very tired the last couple of weeks so I am just following my body’s lead as to what to do and when to sleep.  If I am not disturbed I sleep from about midnight til 10.30-11.30 am most mornings although last Monday(week and a half ago) the fatigue was so great I slept until 11.30 am, got up  then went back to bed at 2.30pm and slept til 5pm and then went back  to bed at 8.30pm.  Towards the end of last week I started to feel more energetic so have started doing a bit of housework, tidying, doing loads of washing etc mainly using my left arm for anything heavy.  The physio says to try to walk 3 times a week for 20-30 minutes but the weather is not condusive to going for walks around the block.  So yesterday I met MD at the mall at Manukau and we wandered round there for an hour or so.  I figure that exercise is better that sitting on my butt at home. 

MD is in the middle of planning her move to Christchurch to be with her Soulja Boi.  They have had their relationship officially recognised by the army and have put their name down for a army house.  If one is not available by the time she moves (first week of July) MD will board with one of SB’s army mates that does have a house until a house becomes available for them.  If it is going to be more than a year they may look at some other sort of flatting situation. 

With me having had such good pathology results means that MD can go to Christchurch and not worry about me – we had talked even before SB got posted to Christchurch and they had got engaged that I wanted them to do what was right for them and not change anything on account of me but it had been weighing on them about moving so far away if things weren’t good with me. 

It does feel strange MD moving quite so far.  Even when OD left home and went flatting while she was at university she was still in the same greater metropolitan area and we could see each other frequently without having to make elaborate plans.  YD and I are already making plans to go down to visit MD for her birthday in October.  We hadn’t told YD until this last weekend that MD was moving, because we thought it would be easier for her to process once my operation etc was out of the way.  MD and I had already decided that YD and I would go down then as we thought it would be easier for YD to accept if she knew that we would see MD in October and then again in December when MD and SB will come up for Christmas.

I am getting used to putting ‘Cushla’ in my bra everyday and most people think I have had reconstruction they can’t tell the difference between ‘new boob’ and ‘Cushla’. My left side with the reduction I call ‘new boob’ and my right ‘no boob’ .  It is about three weeks until I get my other mastectomy bras and silicon prosthesis – just in time for our trip to Australia (end of June).

When I was first wearing ‘Cushla’ regularly I would sometimes take it out while I was sitting in the lounge in the evening as even the pressure of cushiony wadding was painful on my new scars.  This led to me occasionally misplacing it when it had fallen off the coffee table beside my chair on to the floor,  OD said “Mum, you’ve really got to keep better track of your boob” which just about had me in hysterics as it is something you never expect to hear out of someone’s mouth.  She suggested if I kept misplacing it we may have to invest in one of those whistling key finder devises.

Life is different in so many  ways now – it is going to be interesting to see where I go from here.