Well, it is now 14 days since I had my last chemo and I guess that in fact it is today that is really the last day – at least the last day of my last 14 day chemo cycle! For the most part I’m feeling good – and am really enjoying my weekend without the dread of having to head off for more chemo on Monday. The only cloud is that my right hand has decided to go to sleep… I don’t think I have mentioned the tingling in my hands and feet which I’ve had for a while (there have been so many side-effects I haven’t been able to mention them all!) but this has now developed into a full-scale feeling that my right hand is asleep. This particular side effect is due to the chemo affecting the nerve system. I’m quite annoyed that this has come up so late in the process and have my fingers crossed (at least I think I have!) that it is only going to be temporary.

Yesterday I went out for a longish (10 km) run in the forest. It was a lovely autumn day, yet there weren’t very many people around so for long periods I was completely alone. It was so very, very beautiful that I had to stop and take my time just to look around and soak up the views and I got tears in my eyes and a lump in my throat. Wow, I’ve got tears in my eyes again just writing this. It is so amazing to live is such a beautiful place and it is amazing that I can still run 10km! And it is just wonderful to be alive.

I have a great friend who has, during the last few months, regularly sent me quotes that he thought would inspire, provoke or sometimes just make me laugh. One of these quotes was:

“A man’s work is nothing but this slow trek to rediscover, 

through the detours of art, 

those two or three great and simple images 

in whose presence his heart first opened.”

Albert Camus

When he sent me this back in August, during a period when the going was very definitely tough, it struck me that while I was enduring chemo I was subconsciously avoiding “art” – and here I am interpreting “art” very loosely as being anything that communicates with/through my emotions. For example I had stopped listening to music (except pop music on the radio which I had on continuously as background noise/distraction). Instead I was anaesthetising myself with rubbish TV and “chick lit”. You don’t really need to be a psychologist to figure that I was avoiding anything that would open my heart or unleash my emotions. I had enough on my plate enduring all the physical stuff.

Yesterday, after my run in the forest, I was thinking about what happened and I realised that I have also, within the last few days, begun to listen to my CDs again!

 You know, Mr. Camus, I think I may have recommenced my trek…….

Well it is finally done. I am finished with chemo, I daren’t say forever, but at least for now. For those readers who aren’t facebook friends, then here is a little résumé of final chemo day….

8:35 Taking my pre-chemo meds: the big round white one is Allipurinol against gout, the three little ones are corticosteroids (binyrebarkhomron for the Danes) which work against nausea AND are part of my treatment, the two yellow ones are Ondansetron which works against nausea as does the big capsule, Emend and the two small capsules, Vogalene.  I don’t even want to think about what the nausea would be like if I didn’t take these…..

10:00 ish I got started. I took two nurses 3 attempts to find a vein that worked (this is not a record which is two nurses with 6 attempts), but in the end they got a really good one on the inner side of my arm and I didn’t really have any problems with the chemo.

10:45 ish Started the last bag of chemo. Took another two Vogalene for the nausea.

12:45 ish Finished!

Then hubbie drove me home and I spent the rest of the afternoon and evening in my sofa nest feeling rotten. To be honest, a bit of an anticlimax, but it’s not really like I felt like celebrating!

The strange thing is that I DO feel happy and relieved that it is finally over, but surprisingly the overriding feeling I have is sadness – NOT what I was expecting.

I’ve been really focused for the last 4 months on reaching this point, but in the last few days the Doctor and Nurse have been talking to me about what comes next and I have started to realise that I’m not quite at the end of the story yet.

The nurse yesterday told me about a patient who had described to her the same feeling. She likened being on chemo to being on a train – the chemo train. You have a general idea of the timetable, but in my case there were a few surprises and delays along the way which meant I reached the end-station 3 weeks later than expected. While you are on the chemo-train you only have the energy to focus on surviving the physical aspects, everything else gets set aside. The thing is that I was expecting that I was going to end up back at the same station I got on at. I LOVED my life and I didn’t really want to change anything about it – well actually I had just started my own business so had just made a major change which I was very excited about. But now I’m getting off the chemo train I am realising that there is no way back to that very same station. It looks a lot the same, but the world definitely looks different and it is going to take me some time to come to terms with that. It was such a rush getting on that train, that I never had a chance to figure out what was going on. I can say “I have cancer” to others (I don’t much like doing it because it always elicits a response of shock and upset), but when I say it to myself I still really don’t believe it is true…. But now I am off the train I’m going to have to come to learn to accept it…

The other thing is that I hadn’t really seen beyond the chemo-train, but now I’m realising that I get a little break at this station, but then I have to get on the radiotherapy bus and I’m starting to realise what that is going to involve. And even when I get off the bus, the journey doesn’t really finish there, but in fact will continue in some way for at least 5 years (which is when I will finally be considered cancer free if I haven’t had any relapses).

But hey, no more needles for a while. No more chemo, I hope ever, but I settle for now. And after this week I am going to start feeling better, and after about 4 weeks I will have a fully functioning immune system once more! And one of these days, within the next 2-4 weeks I WILL have that glass of champagne that I absolutely couldn’t face yesterday………

Last chemo in sight!

October 16, 2010

Finally……my last chemo is scheduled for Monday – albeit 3 weeks later than on the original schedule. It looked a bit touch and go for a moment. My white blood cell count was really low yesterday and the Doctor hummed and ha’d for a while before he decided that we should go ahead on Monday. I could have kissed him when he said yes – I would have been devastated if the last one had been postponed. Of course now I am totally paranoid – last time we went ahead despite a low count I ended up in hospital! But I have everything crossed……

Not that I am dreading Monday’s chemo any less than usual. The daughter of one of my Mum’s friends is an oncology nurse and she likened chemo to a boxer who gets knocked over and every time he gets to his feet gets knocked over again, and each time it takes him longer to get up again. That is such a great description of what it is like! So I am not at all looking forward to getting knocked to the ground on Monday, but I AM looking forward to being able to gradually get back on my feet without having to anticipate a new knockout in 14 days……

Of course I am not off the hook just yet. I get a few weeks to pull myself together and then I start radiotherapy on 15 November. I have to be zapped 17 times (I wonder how on earth they come up with such a bizarre number!) – every day Monday to Friday. I’ve started to be a little apprehensive about the radiotherapy now that it is approaching. The alarm bells started ringing when I was summonsed to an appointment with a dietician. Now, chemo has given me real problems with eating, but no one has suggested that I needed to talk to a dietician about it – so how much worse can it really get????? The issue is that, like chemo, radiotherapy doesn’t only kill the nasties, but also the good cells and since I am going to have my neck/throat area zapped I most likely am going to have difficulties with swallowing for a while. But I’ve been eating baby food for a while because of my dry mouth so I guess I just need to stick to the soft stuff for a while longer (and just hope it is sorted before my Christmas Dinner!!!!), not to mention enjoy that I have a diet sheet that suggests cake as an appropriate afternoon snack! A lot of people also report being very tired during radiotherapy. I don’t really understand why this is, but my fellow Hodgkins Blogger Colin, who has been an inspiration to me, reports that while he managed to keep on running through chemo he had to stop during radiotherapy – EEK – that has me worried!!!!

By my calculations the radiotherapy should be finished by 7 December (though I no longer expect anything to go according to plan). Then I will have another scan and a couple of weeks later see the Doctor for the results…….

I don’t know about you, but I know what I’m wishing for for Christmas!

Well, the remainder of Wednesday turned out to be a complete write-off. After posting on the blog I went and lay down and didn’t get up again for the rest of the day apart from for essentials like anti-nausea tablets, food, teeth-brushing etc. Needless to say I didn’t make it to Krop & Kræft, but the days where I would be annoyed with myself for not doing something I had planned to do are long gone. You learn to be very forgiving and tolerant with yourself when you are on chemo.

I didn’t sleep too badly last night. I still woke up every couple of hours with my mouth and throat dried out, but a sip of water or a squirt of my mouth spray sorts that out pretty quickly. I also don’t think I have mentioned my hot flushes, but I have also started having hot flushes – worst at night, but also during the day. I was warned that there was a chance that the chemo would provoke my menopause, and I think that is probably what is happening, though I still have my fingers crossed that everything will return to normal when I finish chemo. I guess since I’m 47 it wouldn’t really be considered premature, but still, I absolutely don’t feel ready for that… But then again, in the general scheme of things I suppose it isn’t such a big deal……

This morning I feel quite a bit better, though pretty wobbly. It is a bit like the feeling you have after a tummy bug or flu or something, when your legs are a like jelly and you feel generally feeble! However I have no big plans for the day. In a while I will go out for a walk – I want to go to the second hand shop and see if I can find a “80s” top for my daughter (age 12) who is going to a theme party tomorrow night – how I wish I hadn’t chucked all my old clothes out! Otherwise I will have a nap after lunch and a lazy afternoon and evening, though I will try to go for a wee run in the afternoon. This evening there is a farewell party for my daughter’s teacher who is going off on maternity leave, but I am going to give that a miss and let my husband do the honours. I try to go to things as much as possible, but my tummy isn’t stable enough yet to be able to face a pot-luck buffet…..

I’m crossing my fingers that I am feeling better tomorrow since I have a bit of busy day planned…. and I HAVE to go to the very last Krop & Kræft tomorrow!

Hmm, well feeling a bit rough today, but that has often been the case – Tuesday not so bad and Wednesday worse – I have no idea why!

The rest of yesterday went pretty much as predicted and was spent mostly in my sofa-nest watching TV or sleeping. I did manage to roll off the sofa in the late afternoon, struggle into my running kit and head off for a wee run. I only managed 4 km and to be honest the pace would probably be classified more as a shuffle than a run, but hey I did it and I didn’t walk or stop except to cross the road.  The timing is critical – if I run just before dinner my appetite improves and I can eat a bit more. It was Pasta Bolognese again – although the rest of the family had something else, something that I couldn’t face.

I ought to probably mention that on my “bad” days my hubbie does all the cooking, packed lunches etc. He also does more than his fair share on the “good” days, but I do contribute as much as I can. He also has done all the big food shopping since I started on chemo and masses of other stuff. Then again if you have been following my blog you have probably realised by now that I am married to a real hero!

Anyway, I didn’t really sleep very well and today I don’t feel that great. However I am determined to go to Krop & Kræft this afternoon although it does seem rather overwhelming just at the moment…. Normally I wouldn’t consider it the way I’m feeling, but today is the second last session….. I’m disappointed that I have missed so much. The programme was for 6 weeks and I missed two weeks when I was in hospital and then I missed last Friday because of my blood tests and then Monday and Tuesday this week because of chemo… It wouldn’t be so bad if it was just around the corner – during our sessions there is a lot of understanding for the fact that we have good days and bad days – and there is always a nurse on hand. But I need to drive into Copenhagen……

Anyway, now I am going to retreat to my nest and see if I can have a wee sleep and maybe then I’ll feel more like it…..

I thought this week I would try to do a bit of a chemo diary with a daily update. The pattern has been pretty much the same each time with small variations depending on infections, getting some of the side effects under control etc. For example after the first couple of treatments I suffered terribly from heartburn (believe me it can make life very miserable) but I now take medication to keep my stomach acid under control – similarly with constipation. The thing is that, once more thanks to the power of the brain, I kind of forget how it is in between times so thought I would quite like to keep a record.

Chemo yesterday went pretty much as I predicted. I have developed such a ridiculous trauma about this vein thing that I could hear that I was being totally hysterical about it when the time came. I even broke out in a sweat. This is probably a good moment to give a general tribute to nurses. I don’t know how they do it, but they seem to have endless amounts of sympathy, empathy, patience, warmth, professionalism – and all this while they are totally rushed off their feet. The nurse yesterday was unbelievably sweet with me. She started out by putting a heated cushion over my arms to get the veins to expand and when she found one she wasn’t at all infected by my nervousness and got the venflon in at the first attempt. She then adjusted, padded with little cotton wool balls and taped it until I was happy that it was comfortable. She then also left the heated pillow over my arm throughout the treatment to make sure the vein stayed as expanded as possible.

There was a little hiccup with my bags of chemo. The really nasty one needs to be more diluted when it is administered through a venflon rather than a catheter and the doctor had forgotten to adjust this when ordering it, so she had to get the lab to mix up a new bag for me. But she got started with the other three while we waited for that to arrive and it arrived in time to start it when the others were finished. Then we experimented to find the highest flow I could tolerate before it started to hurt my arm versus not having to sit there until midnight. All in all it took 5 hours to get all my chemo (versus about 2.5 hours when I had my catheter) so it was a really long day. In the days of  the catheter I managed to get home before I started to feel bad (and could drive myself home), but when it takes so much longer I start feeling bad while I am still there. They were very sweet and moved me into a bed when I started to feel bad and my hubbie came and kept me company for the last couple of hours – and to drive me home. For the last couple of hours I was just feeling really rotten and was so desperate for it to be over. I was looking at this huge bag of fluid and the slow little drops going through the tube and it felt like it would never be over – but finally it was!

The nurse had suggested that I take a couple of my extra anti-nausea pills prior to getting the last bag, which I hadn’t tried before and I’m not really sure if it helped. At any rate I had to take a couple more before I went home.

When I got home I collapsed in my nest on the sofa and put on the TV – though have no idea what was on, it just provides a distraction! And I stayed there dozing and sleeping for the rest of the afternoon and evening, apart from getting up for some dinner and to brush my teeth (which I do after every time I eat to try to avoid mouth infections). I was feeling rotten, very tired and sort of nauseous. I had only had a finger of twix to eat since breakfast (figured it wouldn’t matter if I could never face twix again in my life!) and I had a notion for raspberry sorbet when I got home, but couldn’t really get more than a few spoonfuls down. I then tried a nectarine which went down OK. For dinner I had Pasta Bolognese which has become my chemo staple. For some reason I can always manage to get that down and I haven’t sickened of it. Later I had some yoghurt before I went to bed.

By 9.30 pm I couldn’t manage any more so went to bed where I slept fitfully for the night – I woke up fairly regularly because my mouth and throat were dry (we are talking dry as sandpaper here!) and then, as often happens, I woke up about 4ish and couldn’t fall asleep again for a while – but I obviously did at some point because got woken up when my husband got up for work.

No matter how bad I feel I always make an effort to get up and have breakfast with the family and see them off to work and school. Breakfast consists of porridge and copious amounts of juice to wash down my 3 anti-nausea meds, my anti-gout med, my stomach acid pill and my usual vitamin tablet and omega 3 capsules.  

Relatively speaking (like compared to yesterday) I’m not feeling too bad this morning. I’m very tired and need to take a wee rest after every bout of activity, but I have hung out my washing (oops the neighbour saw me in my green wellies, my spotty pyjamas with an ancient fleece on top and of course my hat!), had a shower plus answered some emails and written this so it isn’t too bad. I’m not nauseous this morning – though no appetite either, but I do have a very dry mouth and a disgusting taste in my mouth. I can also feel that I have probably very soon used up all my energy for the day so after lunch I will retreat to my sofa nest again!

So now for some lentil soup…….

Well, here it is again….Chemo Monday. Time seems to have slowed down for these months since I started chemo that is except for the weekends just before chemo which rush past in a flash as I determinedly try to block the looming chemo from my mind. The dread I feel is difficult to describe. It is much worse than anything else I have experienced – worse than final exams at university and worse than my driving test….  

Before I started chemo I greedily read blogs where others described their experiences with chemo and was really surprised when they described how they started feeling nauseous on chemo-day BEFORE they went to the hospital. I put them down as being hysterical – it was total nonsense – or so I thought. I feel nauseous as I write this. During the weekend if the thought broke through my mental barrier I felt nauseous and I know it will get worse now as I drive to the hospital.

Usually I am a very rational person so I don’t much like that I have this seemingly irrational reaction, so I have thought a lot about it, and my conclusion is that it really isn’t that irrational after all. I put it down to the incredible power of the brain. I believe my brain has intuitively figured out that chemo is bad news – it puts my body under attack. Unfortunately this intuitive reaction doesn’t seem to be able to accommodate the idea that it is for a good cause, so my brain rebels – “chemo is bad news so if we make Kirsten feel sick she won’t take it”. This is not much fun because Kirsten really knows that not taking the chemo is worse news, so not only do I have to have the chemo and put up with the side effects, I also have to put up with the pre-chemo reaction!

So here I sit on Chemo Monday morning trying to pretend that everything is OK! I’ve had my breakfast and now I won’t eat or drink anything other water until a couple of hours after chemo because I have learned that anything I eat or drink in connection with chemo later brings on a violent nauseous reaction if I just think about it! In half an hour I will take my anti-nausea medication (3 different kinds) plus my anti-gout medication so that they have time to kick in before my appointment at 10am.

Today I have the added anxiety that I am now without catheter so am going to have to put up with the “search for the vein”. I have developed a bit of a trauma about this after my 10 days in hospital – my veins are difficult to find and generally pathetic and give up quickly so the whole business is really unpleasant for me AND stressful for the nurses. Plus it is generally much more unpleasant to get my chemo into a vein in my arm – one of the chemicals is very harsh and actually hurts – and takes longer.

So now I am going to go and pack my bag. My book and a magazine, my extra anti-nausea medication in case I need more to get my home and my phone so I can keep in touch with the world! And I am going to keep pretending that I am just going for a little outing and try to fool that brain of mine for a little longer…….