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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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Getting on my nerves

This chemo (Taxol) is literally getting on my nerves.

One of the major side-effects of chemotherapy treatment with Taxanes –  Taxol (Paclitaxel) or Taxotere (Docitaxel)  – is that as well as hair loss, nausea and all the other usual side effects you hear about,  they cause peripheral neuropathy which is that they damage the nerves in your extremities such as your fingers, feet and toes.

It builds up gradually and at first you dont notice it other than the occasional little tingly feeling in your fingers or toes.

How much peripheral neuropathy I get will be one of the deciding factors on how long I stay on Taxol.

It has been getting worse over the last month and especially in the last couple of weeks.  I lie awake at night with a tingling burning feeling in my toes and the balls of my feet – its ‘tingly burning’ to the point of being painful.  I can feel it in my fingers as I type these blog posts with each key stroke feeling simutaneously slightly numb and slightly more painful.

Holding a pen to make notes at uni on Tuesday was another time when I realised it was getting worse, and it made me wonder how well I am going to be able to write in my upcoming exam (middle of June), as well as having quite a lot of work on an assignment to type up in the next week.

I struggled to do buttons up on OH’s work shirts after I washed them – I dont tend to wear things with a lot of buttons myself –  thank goodness.

What it comes down to is whether I am getting enough benefit from the Taxol versus the quality of life while I am on it.

My next oncologist assessment appointment will be the first week of June, and I know it is going to come up for discussion then.  Ordinarily my next appointment would be on the 30th May but because of OD’s wedding on the 1st of June we have delayed the oncologist appointment and taken that week off chemo as well so we can concentrate on the wedding and family.

 

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In case of emergency

While I have been in treatment for  the last 4 years I have carried a business card holder in my purse with all the hospital contact cards such as this one

card for getting hold of Acute Oncology when I feel sick while on chemo

as well as the contacts for the appointment scheduler, my oncologist, my nurse specialist, my cancer society liason nurse…etc…etc…etc

On Tuesday I had an appointment for counselling at the Cancer Society in the afternoon after attending my uni class in the morning.  I had taken the train up to uni and AW dropped me in Newmarket on her way home after we had attended class and had lunch, so that I could kill time until my appointment at 2pm.  I decided I would be ‘good’ and not  tire myself out by wandering around the shops too much before catching the bus for the short trip to my appointment so I bought a magazine and went to the mall foodcourt and ordered a ‘Tank’ Juice and sat and read at one of the tables.  As I sat there I started having one of my ‘cold & clammy’ dizzy spells.   Dr H says they are caused by the large tumour in my liver -according to him as it has got bigger the inside of the tumour has started being starved of blood supply and has started to break down and every so often it releases the toxins from this cell breakdown into my blood stream which causes the ‘cold clammy spells’

Now usually when I have them when I am sittting down they pass very quickly and I feel capable, even if still feeling a little off colour, of doing what I need to do.  Tuesday was not like that…  As I sat there over a period of quite a few minutes the dizziness got worse and even putting my head down on the table did not remedy the situation.  I had to end up asking the man sitting a couple of tables away from me to go and get someone to help me.  He got one of the foodcourt cleaners to get hold of the centre management who come to help.  I was lucky I was still coherent enough to tell them I didn’t need to go to the hospital I just needed to lie down and help them find OH’s number on my cell phone so they could ring him.  He had to leave work and come and pick me up.  The centre staff were very kind and took me to the management offices where I lay down until OH came.

Quite frankly this episode scared the h*** out of me.  I realised that I needed to have something on me that people could read and understand the situation if I passed out and couldn’t tell them anything.  My solution?  to put a bright sticker on my card holder so that as soon as someone looks in my purse they would be able to get the information to be able to help me.  I composed a card to add to the others explaining what to do in case of emergency and what was wrong with me and added it to the front of the holder.  I know the time is coming when I won’t be able to go out on my own if I continue to get sicker but this at least helps in this interim stage.

the sticker on my ‘cancer card holder’

 

MD was angry at me for not going to the hospital to get checked out but I knew that there was notheing else they could have done for me other than let me lie on a bed until the dizziness passed.  I checked with doctors on Thursday when I went in for chemo whether I should have gone into the hospital and they said probably not but to ring them the next time it happens.  They also checked me out including some motor skills assessment to check that it wasnt anything more sinister.

The one thing they did find that was different from normal was my blood pressure was a lot more elevated than normal and they are wondering whether that contributed to Tuesday’s episode.  I have had to go to the GP’s on Friday and Saturday to get it checked to see if it remains elevated or whether it is falling back to more normal levels. So far it is remaining elevated.  This shouldnt be a chemo or other medication side effect but if it remains high it will need to be investigated and controlled.

Mixed results

At my oncologist assessment appointment on the 8th of May to get my latest scan results – I burst into tears.  Why – because of bad news? No, because there was no official scan report from the radiologists.  When you have psyched yourself up to deal with results, good or bad, getting no results is actually worse because you are left in a state of suspended anticipation, ‘ not knowing’ the ‘what ifs’ crowding your mind, which as I have said many times before, does my head in far more than knowing facts and figures even if the facts reveal bad news.

The Radiology department of Middlemore hospital  ( the local hospital where I have to have my CT scans vs Auckland Hospital where I receive my cancer treatment) has some major issues around scheduling and reporting.  While I can’t fault the technicians and nurses that actually facilitate the scans, I have always had issues getting the scans scheduled within the timeframes that my oncologist wants them and we have always had to wait longer than necessary for the official radiologist report.  I do not think this is good enough when you are talking about people’s health.

To make it worse, at my oncology appointment I saw a new registrar Dr KN who didn’t know me at all and so could only go on what she had quickly read in my notes.  It was a slightly weird consultation as we were discussing what options I had around continuing chemo without knowing what the scan results would ultimately show. She promised to ring me as soon as the scan report came through and let me know as well as posting a printout of the results out to me.

I got the phone call the next day.  My larger tumour in segment 7 of my liver has now grown to be 9.4 cm x 7.1 cm up from 6.7 x 5.2 in my February scan.

the outer pink ring is growth since February scan

Dr KN then went on to talk about the other tumour they had measured which now measured 1.1 cm.  I think I surprised her by asking her what segment it was in.  My second tumour, in segment 2, had been measuring 2.5 cm so I thought she was saying it had shrunk.  But no… this is a  third, new, tumour in segment 6.  She went on to say that they had not been able to get an accurate measurement of the segment 2 tumour.

I decided not to do a blog post about this until I got the written report so I knew exactly what they said, and I also wanted to get my head around what the results might mean, which is part of the reason this blog post hasn’t been written before now.

I got the printout a couple of days after that.  as well as the measurements I have reported above, it says that segment 2 is ‘difficult to define due to perfusional change in the left hepatic lobe’ ( meaning the way blood etc is flowing through that part of my liver is partially obscuring the definitive boundaries on that tumour) they also say ‘ there are other small foci which are indeterminate for liver metastases or focal fatty sparing’  – this means because I have got fatty infiltration of my liver that until tumours grow to be about 0.5- 1 cm it is hard to differentiate them from fatty globules.  What this means is at the moment we know that I have 3 definite tumours but possibly quite a few more. We wont know until they start growing a bit more.  We actually don’t know for certain where or how many ‘spawn of Gertrude’ there are

To put these measurements in perspective I investigated what an average liver’s dimensions were,  – me being my usual investigative ‘facts and figures self’.  I know my liver is slightly enlarged and that also my larger tumour is pushing out of my liver by a good couple of centimeters at the least so all of its dimension isn’t taking over within the liver itself but the average adult liver is 20-23 cm transversely and 15-17 vertically and 10-12 front to back. So especially the largest tumour is fairly significant in relation to the size of the liver as a whole.

That’s the bad news… the good news is that my tumour markers continue to fall, from 557 to 249  which reassures me there aren’t quite so many cancer cells circulating in my blood looking to ‘set up home’ elsewhere and my liver function tests remain stable.

What does this mean for carrying on treatment.  I will discuss more in a following blog post some other factors that have come into play but in the discussion on the 8th and subsequent phone discussion with Dr KN we decided to carry on for at least this cycle and hopefully another couple and then scan again. as we don’t know how much of that growth between the scans on the 1st February and 2nd May happened in the month I was off chemo in February and how much has grown while I’ve been on the Taxol.  At most the Taxol is keeping it stable, it isn’t shrinking it at all.

 

Pacing myself

Later today I get my scan results as to whether this chemo is working so will do another blog post tomorrow to catch you up on the results but I thought I had better do a blog post to catch you up on the last couple of weeks.

The cold I mentioned that I had in the previous blog post came back in full force after my subsequent chemo and I ended up going on antibiotics to get rid of it.  I missed my university class that week and generally felt miserable.  My eyes are reacting badly to this chemo – harder to focusand I  need my glasses on to see anything at all and with the cold I found I couldn’t read or see much of anything which made for a very boring week.  I even struggled to play facebook games as the screen would go blurry…and you know how much I rely on facebook games to keep myself sane.

I have only just got back on top of my health, coldwise, this last week and have been trying to catch up on things.

But I have had to pace myself.  If you know me in real life you will know I walk very fast, and I find it hard to convince people that I’m sick when my normal walking pace is still 4 kms/hr.  OH notices I walk a lot slower and so do my daughters but many of my friends dont pick it.  I still have to walk at a fast pace as when I dont I actually get pain in my hip from walking slower as my hips and body are used to a certain pace.  I just cant walk as far.  I also cant walk up stairs, ramps or hills easily and feel very breathless.   I sometimes forget that I need to sit and rest frequently and when that happens I have a dizzy spell such as I did last Tuesday after class when I went to lunch and a  little wander round the shops with AW and MH.  I suddenly went all cold and clammy and they had to take care of me – with AW not prepared to put me on the train home so drove me home (completely out of her way by direction and distance)  Thanks AW.

I actually got very upset later that night because that episode  brought home to me just how dependent I am on others.  I have always been an independent sort of woman capable of doing things my own way and in my own time.  I no longer drive myself much further than our local town and feel frustrated by the limitations chemo and cancer put on me for doing things on my own.  And unless I get my spontaneous miraculous remission it will only get worse.  I find it really hard to ask for help and feel guilty for accepting it because thats just the sort of person I am, and I am angry that cancer is taking my independence away from me.

I have to figure out new ways of doing things so I can keep on doing the things I love for as long as I can, and maintain as much independence as I can without jeopardising my health.  I am grateful to my family and friends for ‘keeping an eye on me’ – Such as yesterday when I went shopping with MD – she had to head to her part-time job so I was catching the train home, but I was feeling a little tired and sore so unbeknownst to me she had rung her father to get him to check that I had got home safely.  It feels weird to me that they have to do that but I am grateful for it at the same time.

I will continue to learn how to pace myself , OD’s wedding is fast approaching and I am doing a few little jobs for that, I have an assignment due for university just before the wedding and I am also working on a couple of other projects that are important to me.  I will get them all done as long as I pace myself and allow myself time to rest as well.

As one of the old ads on TV used to say ” dont worry I AM looking after myself”