May 2009
During the past month (from 22 April) I have had three chemo reviews with the last one being 11 May. My doctor was happy that my blood levels are back to "normal" and he has (as he put it) washed his hands of me now unless something dramatic happens.
I have had one radiation review in the past month and my next big review will be in June when I will get another PET scan to see how I am progressing. I just hope it doesn't show anything "growing" (Jun update - this PET scan didn't happen)
I have had one speech/diet review in the past month and they were extremely happy with my weight and swallowing etc. The speech pathologist plans to do monthly reviews by phone for the next couple of moths but like Chemo if nothing dramtic changes I should be right.
All in all I am feeling extemely well. I am getting stronger each day and feeling good within myself. I now look forward to the radiation review.
June 2009
During the past month I have had a few problems but nothing serious. I was due to have my Radiation review on 05 June but this was delayed to 12 June which was delayed to 19 June. I finally got to see the Doctor and everything appears to be going fine. The doctor will schedule a PET scan in a couple of months and then wishes to see me about a month after that. I have also scheduled a return visit to my ENT specialist for mid July. I mentioned above that I have had a few problems. One that is concerning me is my face and neck have started to swell and I seem to have a growth under my tongue. My Radiation specialist doesn't think that I have anything to worry about but any new symptom, be it a cough or blemish or lump now has me worrying that something is coming back. When I went to see the maxiofacial surgeon for a review she thought my swelling was due to a thyroid problem and suggested I see my GP. Luckly for me I already had an appoint booked for later in the week (26 Jun 09). On visiting my GP he wasn't concerned but gave me a referal to have an ultasound done just to make sure which gave me no end of relief that I shouldn't worry. Here I was two months after finishing treatment with swelling to my face and neck nobody could explain being told not to worry.
On the 29th I went and had the ultra-sound done and the technician reckons there is no mass or lumps he could detect. maybe I haven't got anything to worry about. I have an appointment booked with my ENT in mid July (after the U15 State hockey titles - I am managing a team - an not even cancer could stop me attending that) so I will bring it up with him.
July 2009 Firstly my apologies for being slack and not having my July update on the web before the middle of August. No excuses just slack in taking it from draft to published. Thanks to those who have e-mailed asking where the report was. Health wise the past month has not been to bad. I went and had my first review with my ENT on 16 Jul 09 and he seemed pretty happy. After the obligatory fingers down the throat and a few uummms and arrrhs he decided that all was good and he would see me again in six weeks. He then gave me the sobering news that this would be an ongoing thing for the next five years as it takes that long for the “official” all clear.
The lump under my tongue and the swelling in my neck is nothing to worry about (according to the ENT) as the lump is just from having the dry mouth and rubbing/sticking of my tongue against my teeth when I sleep. Normally saliva would lubricate this action. The swelling is just fluids moving from one point to another in my neck and should get better over time.
Hockey wise the representative Brisbane U15 team I took away to <?Cairns came second in their Division which is a one position improvement on the team from last year. Young D played some very good hockey and was co-captain of the side. M also went up with a couple of his mates from school and spent a fortune on nothing. I imagine I can expect the “…… dad can I borrow $xxx.00 for ……………..” over the next few weeks as he gets his cash reserves back on track.
More news at the end of August. ~
August 2009
I have been finished treatment now for four or so months and am feeling pretty good for an old bloke.. I had my second review with my ENT on 27 August and he once again seemed pretty happy. After the standard fingers down the throat decided that all was good and he would see me again in November as I have a Radiation review in early October which would have coincided with my next review with him and he doesn’t see the sense in two people telling me the same thing. Last month I mentioned the reviews would be an ongoing thing for the next five years as it takes that long for the “official” all clear. I had further clarification that the next two or so years will be at the six week interval and then it blows out to 3 monthly. I will keep you updated on this
Hockey wise the Club teams are doing well. The boys are both in the top division grand final on 5 Sep for the juniors and in a couple of senior grand final appearances as well. In fact the Club had four junior teams in the finals and five senior teams. A very good year for the Club.
More news at the end of September. September 2009
It has now been five or so months since finishing radiation and chemo treatment and I am feeling pretty good. I have a Radiation review on 16 October which would my normally six weekly review with my ENT is put off for another six weeks as there is no sense in two people telling me the same thing. The dry mouth is continuing (more so at night) but if I keep sipping water this helps. My weight is remaining constant and taste is starting to come back. Eating is sometimes a little difficult because with the dry mouth I need to sip water to wash the dry mass down. I also take twice as long to eat things as I used to do but I think this must be because I only have half the teeth I used to have.
Work has been as busy as normal but no great challenge to my health in any way. I think I have mentioned this before but I sometimes wonder if there was really anything wrong with me.
Hockey wise the season has finished and both M & D were in the premiership winning side for juniors and seniors (only one of our junior sides made it to the big one out of four and only one of our senior sides did the same out of five). The boys also won a stack of awards at the presentation evenings for both juniors and seniors.
More news at the end of October
October 2009
I had a Radiation review on 16 October which went well. The specialist poked and prodded my throat and used a (thingy) to peer down my throat to my socks (that’s what it felt like.) and all was good. He is going to organise a PET scan for mid November so that will finally tell if there is any shadows where they are not supposed to be. I am looking forward to this as, to my way of thinking, if I get through this one it is plain sailing with just reviews to do. Like previous months the dry mouth is continuing (more so at night) but if I keep sipping water this helps. My weight is remaining constant and taste is starting to come back.
Work has been as busy as normal but no great challenge to my health in any way. I think I have mentioned this before but I sometimes wonder if there was really anything wrong with me.
More news at the end of November when I will be able to tell you how the PET scan and my next review went
November 2009
On 18 November I had a double appointment. In the morning I had a petoncology (PET) scan organised by my Radiation Oncologist and in the afternoon my six weekly review with my ENT.
The FDG PET scan was similar to my initial one. I arrived at 0730 at the QLD PET Services at RBH and was taken into a treatment room where they administered the radioactive glucose mix. I then had to stay reasonably stationary for the next hour so that the mixture would head to any cancer cells. For those who don’t know cancer cells like glucose, so when they administer the substance (and you don’t use your muscles which also use glucose) it goes to the most active area (the cancer).
I then went into the PET scan room and the actual scan took about 30 minutes. They did both a CT Scan and a PET scan. The FDG PET scan is used to differentiate ‘active lesions’ from dead or scar tissue.
That afternoon I went to see my ENT and as per the psat few visits he was pretty happy that nothing has developed and my progress is good. He said once he had the results from my PET scan he would let me know.
On 27 November I got the confirmation that the PET scan was “perfectly okay” and there was no sign of trouble.
My next visit for a review is in January but December is the anniversary of me deciding to have “Herbert” investigated so my December update will concentrate on the past 12 months.
I wish you all a happy and safe Christmas and New Year. The boys and I are off to Melbourne to watch the Champions’ Trophy in Hockey during the first week of December.
December 2009
It has now been twelve months since my first fateful encounter with the Ultrasound and fine needle aspiration that was to change my outlook on both health and the upcoming 2009. to recap the events of twelve months ago –
I first noticed something different in my neck in about October/November 2008. I had just gotten over the flu and both sides of my neck were swollen. The right side went down but on the left side the lump seemed to have stayed. The lump to me seemed to be in the lymph node and I assumed it was from the after effects of the flu. At the time I remember feeling a similar thing in the same spot on the right hand side of my neck. I noticed over the next week or so that the lump on the right had completely gone but the left hand side remained and didn’t seem to be getting any smaller.
Over the month I kept expecting it to disappear as the other had. By about mid December 2008 I realized that it was not going to go away. I decided I would bit the bullet and go and see a doctor. It was about this time I told H about the lump and we named it Herbert.
The doctor assumed, as I had, that it may have been related to the flu that I had had (which was a relief to me). He suggested that if it hadn’t gone down in about two – three weeks to get an ultrasound of Herbert and he gave me a referral.
I remember about two weeks later Herbert seemed to have diminished in size but after three weeks it was still there so I went in for the Ultrasound on 17 December 2008. When I went in for the results on 22 December 2008 the doctor told me that the ultrasound had found three lumps a couple of which were over 1cm in width, which was concerning and that I would need to go for blood tests and secondly a fine needle aspiration (FNA). The blood tests were done the same day and an appointment for the FNA was made.
The FNA was scheduled for midmorning on December 24rd 2008 - yep what a way to spend Christmas Eve. As I lay on the table the Specialist told me that they would take a tissue sample which involved having a fine needle inserted into Herbert, with the guidance of ultrasound, for the purpose of taking a biopsy for analysis. Once this was done he would take the sample to the attending pathologist to see if there was enough sample to do all the required test. The pathologist ascertained this by having a quick look under the microscope at the sample. The specialist came back to me within 15 minutes and told me that on first appearances the pathologist was not sure what the sample contained and that he would probably need more sample to run the entire range of test. I remember thinking that the first FNA didn’t hurt too much but when he went in the second time I am sure he used an apple corer to get the sample, although when I got home there was little sign of any hole in my neck.
On arriving home the doctor rang with the results of my blood test, Negative. I was relieved nothing was wrong with me but worried that I had gone through getting my neck punctured for what I assumed was no good reason.
On 08 January 2009 when the doctor rang with the test results from the FNA my life changed. The results showed cancerous tissue in the sample and the doctor advised he had pre-empted the phone call by booking me into see an Ear Nose and Throat specialist for 09 January 2009.
The rest, as they say is history, and I now write this update having been through a little bit of hell (the chemo) and some experiences that I will never forget (both positive and negative). My life has changed a little, in that I am now more prone to worry (not the right word but it conveys a feeling) about every little niggle, lump or sore spot. I am still myself (I think) and am even a firmer believer in “mind over matter”, I mean by this that I want to believe that I had no real sickness out of the Cancer because I kept a positive attitude and was not going to let it get to me. My only regret was I had to give up study for 12 months (but that was the only thing I gave into).which in the big scheme of things is pretty piddley to have a regret about.
Over the past month things are going well, I have been in good health and looking forward to the New Year, when I will update you again on my progress. Until then have a Happy New Year and safe time with your families.