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.
September 13, 2012 § 4 Comments
Well I have to be honest and say that I am feeling remarkably well post my second dose of chemo earlier in the week. I might well have lost my hair (picture still coming) but the anti-nausea drugs have really worked. Not sure if it is just luck but I haven’t suffered from any sicky feelings at all. I hope this signals clear sailing for the course of treatment – but i can’t imagine I could be that lucky after hearing the horror stories of others. While not paid work, I have been able to do a lot of committee work for the various panels/committees/boards I am on which has also helped to give me both a focus and helps to keep my ‘hand in’.
It was my birthday yesterday and I have to say I was humbled by the attention and well wishes of all my friends, family and extended family. What touched me most was not just the birthday greetings but the wonderful, humbling compliments made by people and the support offered. While at one level I felt quite embarrassed on another I was reminded about how important it is to ‘receive’ and accept this sort of positive acknowledgement – indeed how important it is to ‘bank’ it for those times when you are struggling to find anything positive about yourself. So in the bank it has all gone – and I feel the better for it. I have no doubt i will be wanting to make a withdrawal sometime in the near future !!!!
September 12, 2012 § 16 Comments
The swellings in my neck and throat area, aka the marshmallows, have exacted their revenge and put me in hospital: Thanks for that, light, fluffy, glucose laden sweet , masquerading as some weird anatomical anomaly.
I have to admit to feeling extremely sorry for myself at this moment in time.
I am sitting in a hospital in Newcastle upon Tyne, the RVI. It’s a very nice hospital, with lovely staff, but it’s not home.
Before this whole dermatomyo-shite-is episode I had very little experience of hospitals – they were for those sad, sorry ill people. You know, those people with ‘health problems’ of which I wasn’t one. Since dermatomyositis took over my life, hospitals are part of my rich circle of experience. The smell of them is faintly reassuring. Walking down the corridor feels comfortable. I instantly took to my bed, on which I am now typing this post and settled in.
But it’s still not home. I want to be in my own bed, with my stuff around me.
But at least I am being checked out and looked after. The NHS at its best. I came into the ward and within an hour I’d had a CT scan and thorough body exam by two neurologists. The CT scan results have not been very helpful and I have to now have an ultrasound. But it doesn’t look like lymph nodes, which is good, as I was worried about non Hodgkins which has an association with dermatomyositis (be something if I ended up with the same illness as Suz wouldn’t it).
So now I wait for Ear, Nose and Throat to check me out to see if they have any ideas what the lumps are. I’m a medical mystery. I wish I wasn’t.
Oh and I HATE canullas, hate them, loath them. And I have to keep this one in overnight, arggggggg.
Here it is, if I have to suffer it, you may as well see it, in all its bloody glory (or is that gory):
I’ll update you on the marshmallow mystery once I know what’s going on. If only Scooby Doo was here.
August 30, 2012 § 4 Comments
I walked to the end of my road and back again, at pace…no less!
Read and weep, I’ll be back, oh yes I will.
Actually Im a bit knackered now, but it’s a good place to be.
Of course this is all down to my upped dose of prednisolone (prednisone in the US). I know I can’t stay on this dose and I know at some point I have to go back down, but for now, I’m making the most of my sudden energy.
Update on the marshmallow situation: The doctors think the swelling above the clavicle is most likely down to infection and they’ve put me on doxycycline. So we will see. Overnight the marshmallow has increased in size and now extends to the lymph nodes under my chin too, but hey ho, I had a load of CT scans and breast screening done in early June, so I feel quite comfortable it isn’t anything sinister.
August 29, 2012 § 1 Comment
First of all to put all this in context I have been diagnosed with Non Hodgkins Lymphoma. I have lymph nodes lighting up all sites in my body with big external lumps in my left groin – and more presenting in my right. Earlier in the year the glands in my neck were enlarged but after two needle biopsies some how managed to disappear – personally I think it is because they tried to suck them out through the needle. My cancer is rates as stage 3/4 – ie multiple locations, both sides sides of my diaphragm. I have had a bone marrow biopsy which showed some irregularities but currently (and thankfully) too small to be definitively identified as cancerous. In terms of the ‘grade’ of the illness, ie low or high grade with high grade being aggressive and curable and low grade slow growing, treatable and ‘less’ curable, my diagnosis is that I appear to have characteristics of both – follicular and large cell cancer cells. All this is to say that the treatment program is ‘aggressive’ with an all out effort to eliminate the disease. Having said all this, I am also pleased to say that the prognosis is good – in fact probably great given that when it was first suggested I had cancer the prognosis was for ‘palliative chemotherapy’. So in the scheme of things, all that I have heard since is positively positive!!!!!
So after finally having all the tests – at least 5 different needle biopsies, a core biopsy on the groin nodes and finally a surgical biopsy to remove a whole node for tissue testing – plus of course, all the other CT, PET etc scans – treatment finally kicked in this week.
HAZCHEM – that’s exactly how I feel in terms of all the drugs that have been fed into my system this week.
Here we go:
The first treatment required – over a two day period – around 9 hours of intravenous drug feeds, so pretty heavy going.
Day One was pretty good. Really didn’t feel too bad after that at all. It was just the Rituximad and thankfully I had no reactions.
Day Two was the heavy chemo stuff. I pretty much felt like I was literally ‘glowing’ from the drugs – not in terms of looking great but simply because of the toxicity of the drugs. That afternoon, not surprisingly, I felt very light and woozy in the head and quite nauseous. I love my cups of tea but to be honest couldn’t even face up to one – the thought even made me feel sick. Toast and vegimite (stable for many Aussie’s) was about all I could stomach. I went to bed with a headache but after taking some headache tablets managed to actually get a good nights sleep.
Day Three – yesterday – I woke up feeling much better than I expected. In fact started to feel like a bit of a fraud getting all this attention for being ill but actually feeling not too bad. Thankfully the day wasn’t too bad at all – just tired and a bit nauseous as the day progressed. I actually managed some rice with some spinach for dinner which tasted especially satisfying after the staple of toast the previous days. During the day I had to return to the hospital for the pregfilgrastim injection – in my stomach and which hurt like hell for some reason. I used to have a really high pain threshold but after all the biopsies I’ve had with no anaesthetic, I find I now have no tolerance for pain at all !!!!!!!!!
So today – feeling OK so far. Woke up and got up early. Thought I was hungry until it actually came to preparing breakfast – in the end toast again. I’m not complaining it’s better than nothing and its not like I’m vomiting or anything. It is just this underlying nausea that turns you off wanting to eat too much. Having said that it is something I am going to have to watch – I have already lost quite a bit of weight and can’t afford to lose anymore. In any case I have this fantastic wardrobe of clothes that I have to make sure I can still wear. It is a great collection of beautiful pieces that I have collected over time and that I have no intention of throwing out – so the goal, which is a good one, is to make sure I regain the weight to make sure I still get to wear them. I’ll tell you about my clothes another time – the one thing I have spent my money on. I love being a fashionista, mind you it is a bit of a struggle at present.
Let’s see how todays pans out………………………..stay tuned
August 29, 2012 § 4 Comments
Her first day was more of an ‘Introduction to Chemo’ or’ Beginners Guide to Chemo’ or even, ‘Chemo for Dummies’ – now there’s a book that needs to be written. So it wasnt too bad. A few hours of being hooked up to some evil poison and hey, ho, there you go.
But her second day was really the hard stuff, the, ‘Chemo Advanced Course: Hard Core Chemo’. All day hooked up and an evening spent feeling very sick and unable to eat anything but toast – good old toast.
Tomorrow she has to go for an injection to stimulate growth of white blood cells and hopefully she’ll get some respite until the next round.
In the meantime, the fashionista that she is, she has bought a load of lovely hats for when she (temporarily) looses her beautiful golden curly locks – here’s a preview:
August 26, 2012 § 3 Comments
It’s Sunday evening now in OZ and I know that tomorrow is your first day of chemotherapy.
I just wanted to write to say that I’ll be there with you through that, holding your hand, from 10,000 miles away (I’ve got very long arms).
You’ll get through it and there’ll be some more to do, but in the end you’ll come out of this as a well person, ready to take on the world, just like you did before.
You are such a strong and kind and loving woman, I’m so glad we met and just wish I could be there with you tomorrow to hold your hand for real.
I’ll be thinking of you
with love as always
p.s. hope you don’t mind me including this picture of you, that I nicked from Katherine’s Facebook page, but you look so happy: