December 23, 2012 § 2 Comments
I’ve just had a little holiday break after my treatment. You don’t realize how fantastic a holiday is and how much you need it until you take it !!! Even though the last few months have not involved much hard work, the ability to just get away and change the routine is itself refreshingly therapeutic. While of course not much happens when you are unwell, I never felt quite comfortable doing nothing – not being pre-occupied with something ‘meaningful’. For some reason being on holiday gives you permission to escape from all the things you usually worry about. If nothing else – this is why holidays are a MUST !!!! Let’s face it, the worries will be waiting when you get back (as I have found out all too quickly). We really need to stop being so hard on ourselves.
Anyway my list of the ten best things about holidays:
- Eating fresh fish and chips
- Being anonymous
- You can’t get an internet connection
- It doesn’t matter what the weather is – you can relax whatever happens
- Reading the papers – from front to back over more than one day
- Going out for breakfast
- Walking along the beach
- Slowing down – literally !!!!
- Going to bed late
- 10. Not having to clean the house
By the way – am still bald !!!!!
December 15, 2012 § Leave a comment
Well my apologies. I have without a doubt been missing in action. It has been a busy time for me of late – my daughter finishing school and all the various celebratory events that go with that; my last chemo; then my last two does of rituximab (sorry forgot how to spell it); my visit to the haematologist; trying to find some work and in the last week, taking a short break with my family on the western australian coast. So it has very much been facing up to trying to manage all the other realities in my life and not feeling bombarded. So maybe the best thing to do is to just reflect on some of these over the course of a couple of blog entries.
Well Katherine finished school a couple of weeks ago. What a milestone that was for us all. I am very proud of how she has managed her own issues to get to the end of the year. It has been a tough one for her as well. I have to say that there were several times – dating back to the start of the year – that we didn’t think she would make it through the year having to battle the demons of anorexia. As I have said before it is such an awfully insidious disease. Anyway, through sheer strength, determination and courage Katherine made it through and while her final results are not in yet and we won’t know which university course she gets admitted to until the new year, she has done exceptionally well. Her determination to work hard and get terrific results constantly surprises me – and for someone so young, her strength and focus is inspirational. She is working hard to beat the anorexia and I am sure that with the focus she has – that will happen. We would all like it to happen quicker than it will of course, but these things take time. She is also working in a local cafe these days – since just after her exams and is really enjoying that. It is giving her a sense of achievement and, of course some cash, so that all goes some way to help her feel better about herself. I say that while also wondering why it is that such a beautiful girl both in character and looks and with so many wonderful qualities, could ever think otherwise. Her beautiful red hair, fine features and pearly pale complexion which I treasure so much and which make her the beautiful girl she is – are not features that she values. Life is cruel sometimes. It plays tricks on all of us.
November 17, 2012 § 5 Comments
Yesterday I went to this fund raising lunch to support research into depression. The guest speaker was a relatively prominent member of a national football code. His talk was interesting, a good speaker and personable enough but to be honest the content was pretty shallow. While I have no doubt he suffered from a depressive episode his recovery sounded as simple as waking up one day, deciding not to be depressed, going for a jog around the block, changing his diet and getting back on track with his professional football career. Thankfully for him, he only had to see a psychologist 4 or 5 times and he didn’t require any medication. Of course the audience ( most of it) found his talk ‘inspiring’ and his honesty in ‘outing’ his illness similarly inspirational.
Perhaps I am a sceptic but having suffered multiple episodes of depression throughout my life (including years of medication), two incidents of anorexia nervosa (including a three month hospitalisation), domestic violence/abuse at the hands of a partner, several failed relationships, at least two failed businesses, significant financial loss, cancer and a daughter who herself suffers from mental illness (depression and anxiety) – I couldn’t help but think that neither he nor the audience had any real insight into the reality of depression and mental illness more generally. I know that people look to celebrities as sort of role models including as evidence of strength against adversity, but there are so many more of us that really experience very serious life challenges and who manage to get through them pretty much by ourselves and with our families, whose efforts go unnoticed. This is not to say that I think we all need this kind of celebrity attention, but that there are many of us who should simply give ourselves more credit for facing and overcoming the challenges we face – sometimes on a daily basis. I say this because I know there are many people who read this blog who deserve that acknowledgment and who should be proud of the simple achievements they have made. You guys are the real celebrities. Cheers to you !!!!
October 27, 2012 § 5 Comments
Well things this week haven’t been too bad. After chemo 4 I felt pretty awful for the following couple of weeks so after chemo 5 I was expecting pretty much the same. Thankfully it hasn’t been as difficult as I anticipated. My mouth is a lot better and while I get nauseous quite a bit, it is currently manageable. I also managed to get through the week taking the dreaded steroid meds – I hate these tablets most of all and for the last couple of days have left them sitting on the bench until I built up the nerve to finally take them. If you don’t manage to swallow them all in one go they leave a dreadful taste in your mouth – so the build up is really about making sure I can get them down in one go. Hopefully that is the penultimate dose – only one more 5 day treatments after the next chemo.
The chemo smell is pungent. It has got to the point where I think I smell all around my house. I think it is going to be one of those smells I never get rid of. God forbid !!!!!!
With the weather warming up my body is starting to feel a bit more energised – at last. I went for one decent walk this week and while it was pretty sedate, felt exhausted the day after. Needless to say I haven’t done quite so much walking for the rest of this week. Although I did do a short one today to go to my daughter’s school fete – it was about my limit though.
I’m hoping things continue to be ok over the next week – with only one more chemo to go I can see light at the end of the tunnel. After that I’ll get a rest from al the meds for a couple of weeks and then the tests will start again to see where things are up to. I’m almost nervous to be too positive. I have no reason to be otherwise but given how the year has played out so far, I’m a bit cautious when it comes to thinking things will work out just as I planned. I guess we’ll see in a few weeks.
Also – got some more hats this week. They really are terrific. I must take some pics and share them with everyone.
October 25, 2012 § 4 Comments
I was having a really great coffee in a little cafe in town and on my way out heard someone call my name and say hello. I have to admit I had no idea who it was but said ‘hi’ and obviously looked sufficiently dopey and vague for them to remind me of who they were. Well even that didn’t click immediately but we started a short conversation – with me madly trying to remember who this person was. Thankfully it finally dawned on me, but not until they reminded me that I gave them their first permanent job some 21 years ago. And so now I remembered. He went on to remind me that he was just out of school at the time and was engaged in the organisation I was in as a very young trainee. On reflection I remembered him as a really nice, friendly, motivated guy and yes did recall helping him out with a job for all those reasons. Anyway in the course of the brief conversation he went on to tell me that he is now doing consulting work in the IT industry, earning an excellent executive salary. He concluded the conversation thanking me for helping him on his way – in fact said that that was the important break in terms of getting him on track for a decent career in the IT industry. I felt very proud and very humbled.
Why is this story so important? Well for me its important because it reminded me that despite the ups and downs of this year (of which there have been plenty), that I have made a difference that counts to someone. For me it was a reminder to look at the good things that happen rather than the things that are bad or don’t work out. It made me realise that the impacts we have we may not realise until years later or may never even know at all – but notwithstanding that, the impact has been made and someone has been touched. It was a sobering conversation at a time when I am thinking abut my future. I think we all have these moments. This is the one I am sharing with you.
October 23, 2012 § 13 Comments
When I was in the hospital the other day, I was looking around at all the obviously ill people, and I thought, dear god I would
NEVER IN A MILLION YEARS
have thought I’d become one of them, one of those ill people, people who look ill and weak, who hobble along because they are in pain, or have weakened muscles, or have tubes coming out of their noses, etc.
But I have, I’m one of those ‘ill people’ you see on hospital visits: Sometimes the whole horrible episode just HITS you!
Then, the other morning, just for a couple of hours, I could almost taste better. It was like a brief glimpse at what I was, before…this ‘thing’ hit me, this alien thing, this disease, this interloper. It is not me, it is not who I am, but it feels sometimes that I am becoming it.
I have had symptoms for almost a year now and been very unwell since late April, which seems such a long time, but now I’m ready for better please.
Bring it on, enough is enough.
…Watch out non sickos…if it can happen to me, non smoker, fit and healthy, 30 years vegetarian…it can happen to you
October 22, 2012 § 4 Comments
So today . . . well I’m glad that’s another one out of the way – even the smell of walking into the hospital this morning started to make me feel ill. I think it is all the smells I am starting to associate with illness and chemotherapy. I keep thinking about this time last year when I kept thinking about all the things I had to look forward to with work, travel, relationships etc – how wrong could I have been? I actually do find it hard to think how wrong I could have been – makes me wonder about my own judgement sometimes.
Anyway, the chemo – feel quite sick this afternoon and very tired. I also think I sort of ‘worked myself up’ for this one – anticipating that it would be a bit more difficult. The nurses are all so lovely and supportive and have explained that it is just the build up of the chemo in my system. They have assured me though that it is really good for the cancer, ie it kills it !!!! I’m hoping it has and that it won’t come back – don’t want to do this again. The funny thing about the cancer I have is that it shows signs of both slow and fast growing cancer types so until we get through the chemo and subsequent tests I don’t think I will really know where I stand. And then, assuming I go into remission, the next 18 to 24 months will be important in terms of monitoring how things progress. Hopefully it won’t ever come back !!!!!
So tomorrow the community nurse comes to give me my neulasta and then its predisolone (high dose0 for the next five days – all hopefully for the second last time. At least now there is a light at the end of the tunnel. I’m looking forward to feeling better and getting on with my life. I am hoping that all the good things that I anticipated this time last year, present themselves again.