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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

Head Games

Subtitled: S.A.D., L.A.C.A.D., Life and laughter.  I am a definite believer and think I’m a sufferer of S.A.D. (Seasonal Affective Disorder) I’ve had a very bad case of the winter ‘Blahs’.  The weather is starting to improve now with a few more sunny days so I’m hoping that my mood will lift along with the weather.  I also hope to stop the cravings for starchy carbohydrates and sugar.

Coupled with this I have also been dealing with L.A.C.A.D. (Life after cancer affective disorder) a self made up term for the phychological minefield you are left to navigate after dealing with cancer.  In my first post about our cat Gemma’s near-death experience I mentioned my own hip and head pain.  I was awaiting a CT scan on my hip to rule out bone metastases.  And I also mentioned a headache that I had that I was reluctant to tell the drs about because I knew they would do a head scan as well.  After having two dizzy spells on the train (while sitting down) and having continued pressure to the left of the back of my skull I reluctantly told them at my last herceptin appointment (19th August). After talking to the nurse and them talking to the Drs – I got told to report to ‘Acute Oncology’  – those of you that have read my blog from the beginning will know that I have had several visit to ‘acute oncology’ most of them ending up with me being admitted to hospital.  Thankfully this was not one of these times –  after testing my reflexes and getting me to do some finger tracking and balance tests – I got told that I could go home but they were definitely going to book me in for a head scan. 

 I have just had my CT scan for my hip yesterday and an MRI on my head today.  I get the results at my next oncology assessment next Tuesday 7th September.  Here’s hoping for the all clear. 

This is where the L.A.C.A.D comes in – having pain and lack of sleep because of pain gives you a lot of time to dwell on the ‘what ifs’ and also as I mentioned in my Post-Gertrude paranoia post it is hard to let go of your worries when your oncologist are more paranoid than you are.  I know they have to check every unexplained pain but I hate …Hate …HATE living my life with the possibility of Gertrude coming back hanging over me.  I have found it really hard to concentrate on my uni studies outside of actual lecture times and have neglected my study at home.  Its hard to motivate yourself to read dry academic wordy articles when you are tired and headachy.   I did manage to write a 1000 word essay in Tongan for an assignment due last week though.

And then of course two weeks ago I tripped and sprained my left wrist  so more pain ensues.  This when I had been proactive and convinced my Uni friends we should walk round the block on Wednesdays between lectures to get some exercise  – wouldn’t you know it?

I am on Uni semester break now and I am still trying to get the motivation to start studying I have decided I would give myself until tomorrow to rest and then get into it.  Tomorrow we are meeting at uni in  a group to work on taping ourselves  – for individual assignments and I am hoping once that is done I will feel more like concentrating at the job at hand.  I have one essay assignment due on the 13th of September and then two bigger report type assignments due at the beginning of October (- while that seems to be a fair amount of time away I know I cant afford to not get started on them during this semester break.)

Life hasn’t been all doom and gloom for the last month though.  OH and I have made the effort to go out more regularly.  We had always thought when YD left home that we would go out more but with treatment for Gertrude often intruding we haven’t made use of weekends etc for having ‘datenights’.  We found (thanks to OD and her R) that a restaurant in our town which is under new management now serves food of fine dining standard with a wine list to match.  If you are wanting a nice night out I can definitely recommend Element Restaurant and I also found a new favourite wine  there.  Last week I felt even more spoilt as I had three nights out – two dinners (both OH work related) one here and the other here and a trip to the movies to see ‘Inception’.

I’m trying to not feel guilty for not seeing YD some weekends,  After my primary role being her mother/caregiver for 18 years I am still not used to putting myself first.

I also have been finding joy in things along the way – a niece’s engagement, SB’s achievements, to name a couple of things that have made me happy in the last month.  One of the contrary things about this last month is at the same time I have been feeling down a lot I have also laughed a lot.  I have had two Uni friends on completely seperate occasions say they can find me by my laugh (across the cafe or in a classroom down a hall)  that’s not saying that I have a loud or a weird laugh, which I was a bit selfconscious of when they told me, but that they can recognise it.  I talked to OH about it and we came to the conclusion I laugh more and and less selfconsciously than I used to.  I guess I find more joy and laughter in the ordinary things of life than I used to and that I laugh possibly more freely than someone who hasnt had the same life-altering experience.

Oh well – roll on next Tuesday where hopefully I will get the results of all these scans – although if they are negative for metastases I may still need to see other doctors about the headaches and hipaches. I will keep you posted.

Even when I don’t write a post for a while you can keep an eye on the twitter feed at the top of the page for things that happen in between posts

Transmission interrupted

Transmission of blog posts will resume as soon as I can type two handedly again. 

While I was trying to be pro-active and get some exercise during break between lectures on Wednesday – going for a walk round the block with Uni friends AW and AE – I managed to trip on uneven footpath and graze both palms, and right shin just below the knee and sprain my left wrist.   I am grateful to both of them for looking after me -getting me back to uni – cleaning me up – thanks Dr AW ably assisted by nurse AE.  As my wrist started to hurt more – a trip to the Uni med centre ensued, followed by a trip to the closest medical clinic for xrays and consult. Conclusion -sprain not break thank goodness.  AW was wonderful driving me to med clinic and then driving me home instead of just putting me on train.  As left hand is the one I use to carry bags or pull my wheeled bag, I gave Uni a miss on Thursday before herceptin treatment – caught train to and from hospital.  Photo below is how I looked on Thursday bandage on left hand, lymphodema sleeve on right arm. My right hand was slightly swollen from the fall too.

Which hand to use?

The nurses had fun on Thursday finding a vein to put my herceptin through – finally deciding to put it very gingerly in my left hand. 

I have quite a lot of other things to write about but they will have to wait until I can type two-handedly again.

Gemma Update

Just a quick note to update you all on Gemma’s progress.  She is still struggling a lot with the pain and uncomfortableness and has been pretty lethargic all week but is definitely on the improve.  All systems are “go” if you know what I mean from the worries the vets had about paralysis of bladder and bowel.  Montie has finally got used to this ‘strange -looking’ cat with cone collar, shaved bum and no tail, after hissing at Gemma for first half of the week.  We are keeping them seperate just to be on the safe side – we dont want Gemma to be too disturbed when she is still not feeling 100%.  She is still sleeping a lot and today we have let her sleep without her collar on to get a good rest.  She will get her stitches out towards the end of this week,  but we will keep her as an inside cat until she has fully recovered.  She is usually a cat that prefers to spend the day outside if we are not home.

I have lots more to tell you about what is going on with me but no time left in my weekend to write a long blogpost so hopefully that will get done on Tuesday.

Prosthetic tail?

Couldn’t help thinking after I took this photo to send to the daughters

Tail-less cat

 

Poor Gemma – at least I get to wear a foob. She doesn’t have the choice of getting a prosthetic tail.  Read more of Gemma’s dilemma in my ‘the uncertainty of life’ post

The uncertainty of life

This week two years ago 4th of August 2.30pm to be exact I was sitting in a breast clinic being told not only did I have breast cancer but I had Inflammatory Breast Cancer the ‘worst’ form of breast cancer to get.

My first blog post was on the 10th August 2008.  Two years on I am still dealing with both the after effects of my treatment for the initial diagnosis and then the recurrence but also the uncertainty of my future – is it going to be no more recurrences or more recurrences and therefore more treatment? 

Something happened this week that made me think about this a lot – and it had to do with our pets.  We have 3 pets living with us at the moment.  Theoretically two of them are OD’s and one is MD’s but they have stayed with us rather than move out with  their owners especially OD who over the last few years has had many and varied flatting situations – not all of them pet-friendly.  Our pets are OD’s rabbit Morpheus aged 8 years, OD’s cat Gemma aged 6 1/2 years and MD’s cat Montie aged 13 years.  Now Morpheus is getting pretty old for a rabbit and Montie has had allergy problems that have required her to be put on steroid shots which have affected her health, so it is these two that we have expected to not be around for very much longer and we had prepared ourselves for those events possibly happening in the next couple of years. 

But this week it was Gemma who had a near death experience and life – threatening condition.  As far as we can work out she was hit by a car and got her tail caught at the base by the tire.  Her tailbone(sacrum) was shattered and the vets said there was a possibility that she might be paralysed in her bladder and bowels due to nerve damage in which case she would have to be put down.  I am happy to report after a very nerve-wracking couple of days it looks like she is going to pull through although they have had to amputate the tail as it is too badly damaged. 

Gemma before amputation operation

The emotional effect this has had on us has been huge – we had not prepared ourselves to lose Gemma and had thought even if the other two pets died within the next couple of years we would still have Gemma around for another 10 years or so. Even YD said Gemma was too young to die – that she had to live to be an older cat.

 I think it is more emotional for us because of my situation.  When I got my diagnosis one of my main thoughts was I’m too young to die, and one of the reasons I got so upset about the thought of Gemma dying was the fact that I thought if the worst happened to me and I died in the next few years at least OH was going to have at least one pet to keep him company. 

It doesn’t help that my hip is still hurting and I have had a splitting headache for the last week – it developed on the Friday afternoon after I had written my last post intensified over the weekend to near migraine status on Sunday including nausea and vomiting and continued as a band at the back of my head for the rest of the week – I had no other symptoms other than headache so I don’t know whether it was another virus or what I’ve managed to keep it to a dull roar by dosing myself up with pain killers and going to uni but it worried me that I had got over the flu of the week before but kept this headache.  Now of course because of my pain and lack of sleep I have now got sick with another flu/cold this weekend.  I have been in bed every Saturday afternoon for the past three weekends needing a sleep and frankly I’m sick and tired of being sick and tired.  I even wondered whether I should be cutting back my uni papers – I don’t want to if this is purely just a pack of opportunistic viruses causing these problems and that in a couple of weeks I’ll feel on top of the world again but the trouble is I know I am still recovering from the vinorelbine (Navelbine) chemo treatment aftereffects and that might take me another couple of months to shake off.  It is making it hard to be as on top of my uni papers and assignments as I would like to be.

One of the other thoughts I had when we were waiting for news of Gemma was the whole aspect of putting her to sleep if we had to because it was the more humane thing to do.  Of course this made me think about what would happen if there came a time when we had to make decisions like that about me – not put me to sleep although I am in favour of euthanasia if it is the patients wish – but if it got to the point where we had to decide whether it was worth continuing with treatment versus quality of life .  I know these are more morbid thoughts but I actually think it is better that I think about them now when it isn’t a necessity and tell my family my wishes than them to have to make those sort of decisions for me.  I have already decided to have an  ‘allow natural death’  similar to a DNR (do not resuscitate) order to be put on my file if my cancer is ever terminal – I know I would rather die my own way with dignity than with tubes in every orifice.

I’m not as down as this post seems but all the same it is stuff that has been in my head the last few days.  I am still awaiting a CT appointment to rule out bone mets in my hip and I am a little hesitant to mention my headache to them in case they decide to go for a brain scan too.  I wish I could totally dismiss the possibility of metastases but as much as I think it is unlikely, there is a chance it is and that is why doctors will check every little ache and pain I have for  the next  2-3 years…

 Hopefully my blog post in August 2013 will be one of 3 years cancer free and nearly finished my degree.