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    If you have popped over here from my facebook page could you please add comments in the blog rather than on the link on facebook itself. I dont want to worry YD unnecessarily Thanks. You can now use your facebook log in so you dont need to enter extra details if you like
  • 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

Another week down

I have had an extremely good week post-chemo and have as yet not had a phone call from the hospital – it’s Thursday morning and I must admit I wont relax until about 10am because I know that the hospital will ring before that if my blood counts are too low.  But given the way I have been feeling this week I doubt that is going to happen.  I think starting off with a much higher number of neutrophils 4.9 and total white blood cells  7.6, it has set me in good stead for them not falling as far this week and me not feeling the effects so much.  I have had a couple of flatter days and Monday I had a headache and had to have a nap in the afternoon but on the whole I havent felt as nauseous or tired this time.  As I said in my previous post I had a very active Friday followed by a fairly quite weekend , Monday was a bit of a write off but then Tuesday and Wednesday(yesterday) I have felt really good.  Tuesday I tried the fitness program on OD’s Wii, WednesdayI had a day out with YD, the second half of which OD joined us to go to the movies. 

 I have decided as far as YD is concerned I am going to be a bit selfish.  Because the chemo is weekly and I never know from 1 week to the next how I am going to feel I have told her staff that I will regularly see her on Wednesdays (day before chemo – generally feel very good) but I won’t see her during the weekend on a regular basis because I can’t guarantee how I feel then.  YD would rather be at her house if we aren’t doing something interesting and I can’t know ahead of time that I am going to feel up to doing something.  It is better to prepare her to only see me once a week and talk to me on the phone lots than disappoint her and upset  her by changing plans at the last minute because I am not feeling well.

In other news I have  my university admittance interview next Monday so hopefully after that its just a matter of picking which papers I want to start with part time in the coming semester.  If all goes well I will increase the workload to a full time course load in the second semester. 

By my calculations I have another 15 weeks of this and I have a lot of people go “That’s such a long time!” when I say I am having weekly chemo until April.  I just concentrate on getting through it one week at a time.

I miss my mind the most

This is a blog post I have been thinking about for a couple of weeks now.  Someone wrote into the IBC mailing list with the subject heading “Have I lost my mind?”  talking about how her head still feels fuzzy 6 months out from chemo and her memory was gone. Wow, do I know how she feels!

This coupled with the furore over the facebook status bra colour message that went round made me think even more about it. 

When I first got diaganosed I came to the realisation that I was going to lose my long curly hair (-chemo)and my G-size boobs( – had mastectomy on one side and removal of a fibroadenoma and reduction on the other)  I had thought those were the things that defined me as a woman, as me.  And I mourned for the woman I was. 

Since Gertrude entered my life I have lost my hair and my breast but I have also lost my good vision (steroids during chemo had hardened my corneas and they never properly recovered ) and three teeth (chemo again) so now wear glasses and a more extensive partial plate.  While I am sitting here writing this I am wearing my glasses but not my teeth or my prostetic boob.  And I am, if not ecstatically happy, comfortable with this in my own home.  If I go out or know we are having visitors (in a more formal way – my sister and my daughters boyfriends etc know if they turn up they might find me gummy and one-boobed)  I will put on my bra with prosthesis and put my teeth in – unfortunately its the front teeth that have all gone.  But to a large extent that is to present an image to the outside world not about who the real me is.

Dont get me wrong I still miss my breast but once it became Gertrude it wasn’t my breast anymore.  It still makes me feel weird and I feel uncomfortable in a sexual situation with OH about showing him my no-boob.  At only 47 years of age I still want to be sexy and attractive (I know – too much information but this is how I feel)

But since finishing my first treatment and starting my second I realised the thing I miss the most is my mind.  I am no longer the same person I was.  My brain doesn’t work the same way.  I can still write a fairly articulate blog post but it frustrates me that when I go to write that the words dont flow as easily and eloquently as they used to.  I make a lot of typos and spelling mistakes and don’t pick them up when I am proof reading before posting.  Which makes my post look like they were written by someone less intelligent than I am or was.  I am hoping to start a degree course in Social Work and I wonder how articulate my assignments will be.

I’m not trying to be self aggrandizing but my IQ was officially tested at 136 when I was younger (not one of these internet/facebook test) but properly tested.  I can honestly say I don’t think my IQ is that high anymore. 

 I used have a near photographic memory for certain things: names, numbers, facts and figures but that’s gone.  OH used to call me his personal diary because he was hopeless at remembering that sort of thing but I would remember, neither of us used to write stuff down because I would remember it.  Now sometimes when he asks me I give him a blank look, shrug my shoulders and go “Don’t have a clue – sorry “.  My short term memory is even more compromised.  I don’t remember things that happened yesterday half the time.  I am seriously considering starting one of those “a year in the life of” journals and taking a photo everyday to remind me where I was and what I was doing.  My daughters will tell me about something that is happening in their lives and then talk to me later and I’ll look at them blankly. 

It frustrates me that I have to use a calculator for sums I used to do in my head and dictionary/spellchecker for words I  should know the meaning of or how to spell. 

This is the price I paid to live.  The treatment for cancer killed part of  my mind, and I have realised that is the most important part of me! No prosthetic brain  is available  to replace what I have lost.

It’s a conversation I have had with OH that the mets that I am most scared of are metastases to my brain.   Or treatment that stops me being able to think like me.  If I lose my personality along with the cognitive abilities.  I have said that is the point at which I will stop fighting this disease – mets to other organs /areas of my body  and pain I can handle but I dont want to lose me!

I wasn’t offended

This was my response/comment to someone elses (an IBC survivors) blog post about the facebook bra colour message that went round and thought I would share my thoughts here as well. You can read her original post here

“I understand where you are coming from but as an IBC stage IIIc survivor currently having a recurrence to my internal mammary nodes – only 5 months after original treatment finished – I took part in this facebook meme and forwarded onto my family and friends. From my point of view it was about showing that raising awareness or keeping awareness in peoples minds wasn’t always about having to have a pink ribbon on your profile picture or writing seriously – it made my daughters and their friends think about their breasts for a minute and that is not a bad thing. I was wearing a bra with prothesis – I had a single mastectomy and axillary dissection – because I had gone out that day but most of the time when I am at home I am one-boobed no bra person and am comfortable in that that was the only choice I had to have a chance to beat this disease so although I wrote a colour I could have quite easily been write none
As the first sentence of the message said it was a bit of fun and that was the spirit in which I accepted it and I passed it on in that context as well – I had originally been sent it by another breast cancer survivor who is just out of treatment so not all breast cancer survivors were insulted or upset by this
While I agree especially for those of us in treatment the causes or cure are the biggest thing, for the general populace awareness is the way to get money and support for research. And I think this message was in the same vein as the bra decorating competitions that raise money for cancer research or the race/walks that encourage you to dress in fairy wings in silly costumes. It is a scary serious disease but it does not mean we can only deal with it in scary serious ways. ”

I do consider this sort of fun awareness campaign more harmless than the “bucket list” flyer that I wrote about previously which was purely a real estate marketing ploy (the post of which I have now made private as it has served its purpose.)

In other news my neutrophils had bounced back up (4.9) before chemo on Thursday and i think that is had a real bearing with how I feel post-treatment.  I went to a funeral on Friday (cancer sucks) and had not made the decision to go until I woke up Friday morning as usually the day after chemo I feel a bit seedy but I woke up yesterday morning feeling quite chirpy. I took my antinausea pills as a precaution but had a really active  day yesterday. Feeling a bit tired today but that has more to do with the fact that OD had friends around til 2am than any chemo aftereffects.  I am hopeful that this  reaction to the vinorelbine chemo continues. I can handle this weekly til April!

Ok I’ve had my holiday season – bring on chemo!!

Well the last two weeks have flown past and no blog update – tut..tut!!

I haven’t had chemo for the last two weekly appointments as my white blood cell counts, neutropils in particular, were too low.  For my scheduled Christmas Eve chemo my neutrophils were only 0.31 and for my scheduled New Years Eve chemo they had only climbed to 0.75

It was sort of nice to have a reprieve from the slight chemo side effects over Christmas and know that could just enjoy my children being home – and also that I could do a lot of the christmas dinner preparation myself as well.  The hospital has been really good each time and rung me first thing in the morning to tell me not to go in for chemo as my blood results had come back too low and saving us a trip in.  The past two weeks have been enjoyable but slightly tiring.  We had MD and SB up from Christchurch with their puppy from the 18th of December until yesterday the 4th of January. YD was home for the 24th to the 28th December – I dont know whether it was a result of her being home or my low blood counts but when she left on the 28th I suddenly felt extremly tired and had a nap in the afternoons as well as sleeping well at night.  MD and SB went away for a couple of nights and left us dogsitting around that time as well.  The other ‘interesting thing that happened to me over the holiday period is that when I went out to lunch for my birthday (New Years Eve) I tripped over the curb and fell heavily on my mastectomy side.  My handbag dug in underneath my ribs and left me totally winded. A couple of bystanders thought that I was having a heart attack the way I was gasping for breath but we reassured them I was just winded.  I had a very quiet rest of the day – when we had finished lunch OD, MD, SB and YD went in one car and OH and I went to the movies.  I was very sore when I woke up the next morning, and closeted myself  in my room for most of the next two days as I couldn’t handle being ambushed by a puppy if I ventured down to the lounge.  By Sunday the pain had subsided and I could join in with things a bit more again.  We think I probably pulled and/or bruised some of the scar tissue in the fall – we were also very worried about how my lymphodema would be impacted by this but even though I grazed my palm I don’t seem to have any more lymphodema than usual.

I am hoping that the blood counts will be up in the appropriate bracket this time for me to have chemo because as much as I don’t enjoy having chemo I would rather the cancer didn’t grow or spread elsewhere.

My bone scan came back and apart from a small abnormality to the right of my breastbone everything else is clear.  Dr H said it isnt unusual to have a localised reaction in the bone by the node but at least it shows that it hasn’t spread anywhere else.  I do appreciate seeing Dr H as I know when I see him he usually has the answers as to what my treatment will be and doesn’t beat around the bush.  We talked more about the treatment plan which was good and put my mind at ease.  At the moment we are looking at me being on the vinorelbine /herceptin combo until April with another scan in February to see whether it has worked well.  If it has worked we will stop the weekly vinorelbine in April and I will continue on with Herceptin every 3 weeks  only unless something flares again.  I hopefully won’t be as tired now the house is quieter and my blogging should return to schedule now I’ve got the peace and quiet to write. 

 I am going to chase the University up this week as they still havent given me an replacement appointment for my admission interview that had to be postponed so hopefully within the next few weeks whether I’m going to be a uni student will be resolved as well.  I was talking to a friend of MDs whose mother is also going through cancer treatment at the moment that the key is to focus on the positive things that are happening in the future to combat the times when Chemo and other treatments gets you down.  

Someone I know died last week and when I feel at all sorry for myself at the moment I kick myself and say “What are you so down about? you are still here!!”