Me and Michael Douglas…..

August 28, 2010

It has been in the news this week that actor Michael Douglas has been diagnosed with cancer. In an interview he reportedly said that, looking back at his life, he regrets that he has worked so hard and has had too little fun. I thought that was incredibly sad. I hope his treatment goes well and he has many more years to have lots of fun….

There is one taboo I haven’t touched on yet in my blog, the big one – death. It isn’t because I’m afraid to write about it, but because it isn’t something that preoccupies me at the moment – I’m not planning on dying on any time soon. But during the 10 days or so between having my biopsy and getting my diagnosis, 10 days where I was fairly sure I had lymphoma but had no idea which kind (some lymphomas are incurable) I did have sleepless nights thinking about the possibility that I may die sooner rather than later. Like Michael Douglas, and probably every other person who has ever been diagnosed with cancer, I evaluated my life so far. Unlike Michael Douglas though, my conclusion was that I have no regrets. No regrets at all! I have had a pretty damn good life so far, a richer life than many double my age! Regardless, I also decided that I wasn’t ready to die just yet. At 46, I reckon that I am only about half way through…..

 I think it is a shame that it often takes something like a cancer scare to evaluate our lives. There is no real reason why we shouldn’t do it regularly – a kind of life health check! I’m hoping that some of you will feel inspired to do it as a result of my cancer scare – much smarter than having to have your own! You haven’t asked for my advice, and normally I try not to give advice unless invited, but have decided to offer some snippets of advice based on where I am sitting now (metaphorically speaking!) for you to take or leave as you please!

  • Live a healthy lifestyle without being obsessive! Stop smoking if you smoke, eat a healthy diet (but allow yourself treats) and exercise regularly (you don’t have to be as extreme as me!), get enough sleep etc. It doesn’t guarantee that you won’t get ill, but it does improve your chances!
  • If you are unhappy with something in your life, then take the first steps to do something about it…. don’t end up with regrets when it is too late to do anything about it.
  • Most importantly – remember to have fun! Also when you are in chemo… (OK, that last bit was mostly for me! And for Michael Douglas……)
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Half Way….

August 22, 2010

Friday was blood test day and this time I went off quite confident that it was going to be OK, only to find out that my white blood cell count was again very low. Obviously my white blood cell count detector doesn’t work properly! However, my Doctor consulted with his big boss and they decided to take the chance and go ahead with my chemo on Monday. It means, though, that I need to be even more paranoid than usual about avoiding infections etc which isn’t that easy since my husband has gone down with a cold. There’s nothing to do about it except keep my distance, frequent hand washing all around and gallons of hand disinfectant being splashed around the place. And so far so good!

Monday will be chemo #5, so today I am half way through my chemo hell. A lot of people have mentioned this to me as being a source of good cheer, and if you are one of them I apologise for not being as upbeat about it as you probably were expecting. I am usually a “cup half full” kind of person, but I’m struggling on this one. Instead of feeling “wow I’m halfway” I’m actually feeling “good grief, I’m only halfway”…. I can’t help it. The last two months have been awful AND interminable. It’s hard to be enthusiastic about having to go through as much again.

Before I go for my chemo tomorrow I first have to go for a PET/CT scan. I had one of these at the diagnosis stage and this one mid-way is to see if the treatment is working as intended – so fingers crossed! I guess I won’t get the results until my next Doctor consultation though, but will keep you posted. The worst thing about having a PET/CT scan is that you need to lie completely still for ages. To start with you get a radioactive drug injected into your arm and then you have to lie still for an hour while it spreads through your body. The last time I went armed with my iPod and a book, but nope, that’s not allowed…. you have to lie completely motionless and listen to their piped new age “relaxing” music. Then you have to go into the scanner room (after downing a half-litre of water with contrast fluid in it) and have to lie still on the scanner with your hands over your head for about another 45 minutes during the scan (oh and they inject you with some other radioactive stuff at this point in case you haven’t had enough already!). This part is really unpleasant because you get moved back and forward inside the scanner in some kind of random pattern which is very claustrophobic. I’m normally not claustrophobic but had to work hard not to panic the last time.  Mind you, I suspect all this lying still for ages will be a bit easier this time, now that I have turned into a chemo-zombie!

So it’s going to be quite a day tomorrow being injected with all this radioactive stuff and then my chemo cocktail afterwards!

As promised…..

August 18, 2010

Wow – that went fast! Thanks a million to those of you have donated to Leukaemia and Lymphoma Research in honour of my bald head! If you are sneaking a peak here and haven’t already donated, it isn’t too late! Just go to http://www.justgiving.com/KirstenEjlskov and click “donate now”.  The page will remain open indefinitely so you can do it whenever you feel like it – or have saved up enough!

So here you go!

 

And a few more shots…..

 

In this one you can see a long forgotten scar – I think it makes me look pretty tough! It’s actually the result of falling and bashing my head on a radiator when I was a kid. I clearly remember getting it stitched up by my classmate’s Dad in their laundry room (OK he was a Doctor!) and the copious amounts of blood down the back of my school shirt! You can also see how shapely the back of my head is. By some bizarre coincidence, the day I shaved my head there were news reports here in Denmark about the increasing number of people wanting surgery because the backs of their heads are too flat because they were laid on their backs as babies. I obviously didn’t spend much time on my back during my early years!

In the week since I shaved I have actually dared to bare more than I had expected. The first time I went out of the house bare headed was a bit scary – beforehand I was dithering around trying to decide if I could do it. But my sweet husband said I looked great, took me by the hand and came with me to the local annual “country fayre”.  I actually forgot all about it once I was out and to be honest people don’t really pay much attention. A few people glance an extra time, but that’s about it. And since then I can’t be bothered with the hat, and haven’t had one on since.

I had a strange moment the other day when I was strolling up our main street and chanced upon my daughter’s (age 12) school class sitting drawing. I wasn’t sure how she would take it and for a second contemplated turning and running the other way. I stood my ground though, and greeted her like there was nothing strange and she was totally cool about it. I’m proud of her!

There have been some weird practical issues around shaving my head that I hadn’t anticipated! The first was that my scalp was so white it was almost blue (a skin shade particular to Scots!). Since it is summer my face is quite brown at the moment, so it looked totally bizarre. So I had to head off to the shops to buy some fake tanning lotion (probably the first time the shop assistant has been consulted on the best self-tanning product for heads!).

I had also fondly imagined that, since the hair everywhere else on my body has stopped growing, this would be the case also on my head. Wrong! Those few hairs left seem to be alive and well and I quickly had a layer of stubble! My ancient ladyshaver definitely wasn’t up to regular head shaving, so it was off to the shops again. This time the shop assistant admitted that it was the first time anyone had openly consulted him about the best shavers for heads, but he took it pretty well!

So a word of advice – if you are thinking of shaving your head to save time washing and styling your hair, think again – shaving and tanning are just as time consuming!

Here’s the challenge!

August 17, 2010

As announced in my last post I am launching a little sponsorship challenge whereby if you donate to a charity of my choice and we manage to hit a pre-defined target I will publish photos of myself without hair both here in the blog and on Facebook!

I have decided that we are raising money for Leukaemia and Lymphoma Research.   I have chosen this charity because I do not know why I got Hodgkins Lymphoma, I wish I hadn’t and I hate the treatment. So far the thinking is that this kind of cancer is triggered by a combination of genetic/virus factors. More research is needed and I hope that sometime in the future they will understand what causes this disease, be able to prevent it and, when it does strike, have better ways to treat it, so that others won’t have to go through what I am.

THE TARGET IS GBP 100 (approx. DKK 900 or USD 150), though it would be great if we can exceed that!

It’s really easy to donate. Get your credit card ready, go to http://www.justgiving.com/KirstenEjlskov and hit the “Donate Now” button. On the page you can also follow how much we have raised and how close we are to hitting the target!

Once we hit the target I will publish the photos, so it is over to you!

P.S. I am also open to new challenges after this one is finished so if you have any great ideas then let me know!

More Hairy Stories….

August 12, 2010

Hairy Story nr. 1

For some time now I have been working my way through all 6 series of Sex and the City and on Monday afternoon, feeling rather fragile after Chemo # 4, put it on for a bit of a distraction. Or so I thought, but as the episodes unfolded I witnessed my favourite character, Samantha, being diagnosed with cancer. It was like seeing scenes from my recent life as she blurted out the news to her friends, lost her hair, went wig shopping with friends, had chemo etc. Well, OK, it wasn’t exactly like my life – I didn’t blurt out my news at my friend’s wedding, the circumstances when I noticed my hair was falling out were, ahem, somewhat different, but most of all, Samantha seemed to sail through her chemo without any interruption to her red-carpet, party-going, cocktail-drinking lifestyle, albeit accessorised with a variety of funky and fabulous wigs!  I laughed and cried at the same time for Samantha and her friends – and for me and mine. Very therapeutic!

Hairy Story nr. 2

Every family has them: those stories which get trundled out from time to time, usually at the expense of one of the family members! My sister reminded of one of our stories last week, it goes like this. When we were little girls (I think I was probably about 5 or 6) we were visiting a pair of elderly sisters who lived in our village along with our parents. The ladies commented that they thought I resembled my Dad. I apparently looked crestfallen and when asked blurted out “But I don’t want to be bald!”.  You can judge for yourselves if you think I resemble him because this is a picture of my Dad who died of cancer 5½ years ago.

Hairy Story nr. 3

A few weeks ago when I was at the hospital for blood tests I saw two incredibly glamorous women in the waiting room. This was remarkable partly because, to be honest, you don’t see that many glamorous people hanging around the cancer blood test waiting room (except me of course!), but mainly because they were both completely bald! Of course, there are a lot of bald women hanging around there, but these two are the only ones I have seen who don’t cover up with a hat, scarf or wig. I was impressed! Then last week one of my friends sent me a link to an article in a newspaper which was about these two.  And then on Monday I saw an interview with them on the TV! They are sisters, age 43 and 44 called Josephine and Josine Bergsøe, who were diagnosed with cancer a month apart and are now undergoing chemo.  They have decided to use their situation to do whatever they can to explode the taboo about women and baldness. As they say, 18,000 women in Denmark get diagnosed with cancer each year and a large proportion of them lose their hair due to chemotherapy. Yet how many bald women do you actually see out and about? If more of us dared to bare, it wouldn’t be such a shocker and a cause for staring when we did. I salute you Josephine and Josine!

A Hairy Challenge!

My own hairy story has been dragging on a bit more than I expected when I started this journey, but by yesterday I had had enough of looking in the mirror and seeing something that looked like an inmate of Shutter Island staring back at me. I shaved the remaining sorry straggles off and am now officially a baldy! And inspired by Samantha, my Dad, Josephine and Josine (not necessarily in that order!) I feel quite empowered by my new non-do! And while I don’t think I will go to J&J’s lengths, I like that I have the choice to go bald, behatted or bewigged depending on my mood. Now, I’m sure you are all desperate to see what I look like sans-hair, and you are going to get your chance. Within the next few days I am going to launch a little sponsorship challenge whereby if you donate to a charity of my choice and we manage to hit a pre-defined target I will publish photos of myself without hair both here in the blog and on facebook. So get those credit cards ready and watch this space for more information!

Friday was blood test day. I was pretty sure my blood count wasn’t going to be good enough so tried to persuade my husband to agree to a bet with me! Unfortunately he was also sure it wasn’t going to be good enough so refused….. But somehow he changed his mind at the last minute…….

Now, I should add here that I can’t really decide on blood-test-Fridays whether I want the blood count to be good enough to go ahead with Monday’s chemo or not. My head says “yes, yes, yes, I want this whole chemo episode to be over as quickly as possible and every week of delay means a week longer before I get my life back.” But a little voice inside me keeps screaming “give me a week’s reprieve – I don’t want that poison on Monday”. So, if you are inclined to positive thinking (which I normally am) it is a win-win whatever way you look at it!

Well, my husband won this time, so it was a detour on the way home to procure his winnings and tomorrow I’m off to Herlev for my 4th lot of chemo (soon half way – yippee!).

I also FINALLY got the stitches taken out of my catheter on Friday – an even bigger YIPPEE! Because it takes longer than usual to heal when you are on chemo AND because of the added risk of infection – the stitches need to be in for minimum 3 weeks. However because my first catheter didn’t work and I got the second one in before the 3 weeks of the first one were over, I have now had stitches for 5 weeks. Actually, it wasn’t really the stitches that annoyed me but the fact that they were covered by a big dressing, which I had to change every 3 days under sterile conditions.  My chest looks quite naked now without it!

I’ve had a few questions about the catheter – exactly where it is located and what it looks like, so thought I would post a photo.

As in the photo, I usually tape the end up – otherwise it dangles down to my waist, which in itself isn’t a problem, but I’m worried that it gets caught on something and gets yanked. In theory, it shouldn’t be able to fall out though. There is apparently a bigger spongy thing on the inside so that it doesn’t. You can probably just see it in the picture, but the tube runs up under my skin to my neck (you can probably see a red mark where there has been a stitch) where it the end goes into a deep vein.

I think I mentioned it before, but they use the catheter both to give my chemo AND to take blood. They can just screw the drip or the syringe into the end of it. No needles! By the way, I don’t think everyone who gets chemo has one of these. I have it because one of the chemicals in my chemo cocktail (ABVD) is pretty toxic and is very hard on the veins (the vein in my arm where I got it the first time round before I had my catheter was sore for 14 days afterwards and still gives me a twinge now and then).

I have always eaten reasonably healthily (with the possible exception of my student years!) but for the last few years – particularly since I started on the marathons – I have been very interested in nutrition and healthy eating. Therefore, when I first got my cancer diagnosis, my reaction was to find out what I ought to be eating to help me best fight the nasty aliens. In truth I was probably already eating the optimal anti-cancer diet with lots of fruit and veg, wholegrains, lean proteins and healthy fats.  But I was taken aback when every health professional I met during those post-diagnosis/pre-treatment days told me to forget about so-called “healthy eating” and focus on getting as many calories for the least amount of food, particularly lots of fats and proteins, such as high fat-milk products. I honestly didn’t get what they were talking about and was really quite shocked!

But it all became startlingly clear to me immediately after my first chemo treatment! Since that day, getting those calories in has become an ongoing daily challenge. Even more so because 1. I’m not supposed to lose weight and 2. you apparently need MORE calories than usual to fuel recovery (I had imagined it would be less since I am MUCH less physically active than usual).

There are a number of different side-effects to chemo that all affect my ability to eat and the combination of different problems is what makes it a real challenge. So here is a little overview…….

Lack of appetite.  I think all of us have a mental picture of chemo patients throwing up all the time. However these days they are able to control the nausea with medication. I take 3 different kinds of anti-nausea medication just before I get the chemo and for 3 days following. In addition, I have another anti-nausea medication that I can take on an ad hoc basis if necessary. So for the most part I don’t feel actively nauseous, but for the first 7 days of the cycle I feel what I would call “almost nauseous” all the time. Thinking of food is disgusting and the thought of certain foods can make me gag. In addition, I can’t eat very much at a time. This eases off during the second week of the cycle and towards the middle of the second week it is a lot better and I can eat a lot of things that would have made me sick the week before – even a small glass of wine!

Dry mouth. I also have a dry mouth most of the time, though it peaks around day 5 and 6 of the cycle (where it is so bad that it is actually painful) and eases off towards the end of the cycle. If you have never had a dry mouth/throat it is difficult to imagine, but interestingly it bothered me a lot during the first treatment cycle, but I have kind of got used to it (unlike the appetite issues). I also have a very good mouth spray (Zendium Saliva) which helps a lot. But basically it makes it very difficult to eat anything that isn’t soft/fluid.

Sense of taste.  This is difficult to describe, but basically things taste different than usual – and this one is a constant and doesn’t improve during the cycle. Therefore, some foods that I used to like, taste really disgusting now! Drinking plain water is difficult because it tastes horrible, so I mostly drink sparkling water which is better (full fat milk is best!). The taste issue took a drastic turn during this latest cycle when I developed a really disgusting taste in my mouth which was so bad it was making me feel sick all the time. This has eased off now, though hasn’t completely gone. I’m hoping it was related to the fungal infection (see below) I had and isn’t going to be a regular feature…

Digestive problems. My whole digestive system is struggling and I suffer from every kind of digestive issue that you can imagine from one end to the other and everything in between (I won’t go into details here, I’m sure you can imagine!).

Other mouth issues: The mouth is particularly susceptible to infections because of the lack of saliva and generally because my immune system is suppressed. My gums are soft and sensitive and so far I have had a throat infection and this weekend I got a fungal infection in my mouth. This doesn’t really help the eating situation!

You are probably getting the picture now of how difficult this is! I cope through a process of trial and error and being inspired by others experiences. It’s complicated by the fact that I can go off something that previously I enjoyed from one week to another. If I eat something when I am feeling “almost nauseous” then my brain sometimes starts associating that food with feeling bad and I can’t eat it any more. This is a particular issue with foods/drinks that I consume just before/after/during getting my chemo.

The good news is that despite all this I am managing to consume the calories I need and in fact I have put on a couple of kilos! The bad news is that I can’t even say that I am looking forward to this being over so I can enjoy a good meal – the very thought of it makes me feel sick!