Yesterday I went wig shopping!

When I first started telling people my cancer news one of the first questions quite a few (mainly men) asked was if I was going to lose my hair. This was accompanied by an assumption from all that I would be getting a wig.

This surprised me! The hair thing wasn’t really my biggest concern at that point. Moreover, my initial reaction was that there was NO WAY I was going to wear a wig – my aversion to the wig idea was much stronger than my aversion to baldness! I had visions of old ladies with things looking like birds’ nests perched on top of their heads.

But others apparently had different ideas. Particularly my teenage son was horrified at the idea of a hairless mother! And when the hospital gave me a requisition to go out and buy a wig of my choice at their expense (the Danish Health Service is amazing!), I realised that maybe the world is not ready for a bald Kirsten, so I decided to give it a chance.

So yesterday, accompanied by two of my fantastic friends, I headed to Frida Davidsens Parykatelier with an open mind (and still with hair on my head). It was a revelation! I was a bit worried when we walked in because there weren’t very many wigs on display, and none of them seemed particularly appealing. But once they got the three of us settled around a mirror, and having ascertained that I wanted something that looked pretty much like my own hair, the two ladies produced box after box with wigs, most of which, to be perfectly honest, looked much better than my real hair! When they didn’t have the style I liked best in the colour I wanted, they called the supplier who agreed to send over a couple more for me to go in and try next week. When I settle on the one I want they will cut it so it is perfect! Goodbye bad hair days!

 I’m still not sure that I’ll wear the wig every day. I’ve always loved hats and the reason I don’t wear them more is because they flatten my hair, so now is my big chance to indulge my hat passion. I already have some that sit so low that you can’t see whether or not you have hair, and I plan to invest in more. But I’m glad I decided to give the wig a chance. I’m honestly not sure anyone would realise it wasn’t my hair – except, of course, that I have now just told the world!

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Chemo #1 Day 4

June 24, 2010

Yes, I did manage to go for a run on Tuesday afternoon! Compared to my normal standards it was a very short, very slow run (though I think I just decided to give up on comparisons with “normal”) but I ran all the way without having to stop and walk. And I felt a lot better afterwards. So now I know that I can run even when I’m feeling a bit yucky.

But yesterday there was no way I could run – yesterday I was feeling VERY yucky! My head was so heavy it couldn’t hold itself up and any flat surface was beckoning me to come and lie down. And I didn’t try very hard to resist.  But it was a good day anyway! A surprise visit from my husband’s aunt cheered me up just when I needed it.  And in the evening I didn’t feel up to attending the Sankt Hans arrangement (Danish Midsummer celebration) in our town, so instead we had a bonfire in the garden and I snuggled under a blanket while the rest of the family toasted marshmallows and fed me with them. A good evening!

But I do have some things I’m struggling with (for those who don’t want too much info on chemo side effects you may want to skip to the next paragraph) – stomach issues. I haven’t had any nausea at all thank goodness. However I have totally lost my appetite and my sense of taste (though the thoughts of some foods – even things that are normally favourites – can make me gag). On top of that I have had problems with my digestive tract feeling very irritated. I think this is related to the serious dry mouth problem, which obviously makes it really difficult to digest anything –and particularly raw things, which isn’t great for someone who is used to eating copious amounts of fruit and veg. Plus issues at the other end don’t make it a good time to abandon fibre! So I’m experimenting to find out what works – an attempt with veggie smoothies wasn’t good, but I’m thinking soup might be better. Other ideas and suggestions gratefully received!  And if that wasn’t enough, several times a day my stomach just goes into a big gigantic cramp which makes me double over – not sure what that is about – I suspect it is just my stomach’s way of telling me it doesn’t like what I’m doing to it….

Today I’m back to feeling just a bit yucky, which compared to yesterday actually feels quite good! Lucky really because I have to head off the hospital soon for some more tests and this evening I’m planning to do a run with a bunch of friends. Another good day I think!

Cancer is the villain in this story, but you have to wonder why chemotherapy, which after all is the hero that is going to save me from the cancer, apparently gets just as bad a press!!! I mean it must be pretty dreadful if it has such a bad reputation???

Over the last couple of weeks I’ve been trying to explore what it is really like – I mean not only the technical details of it all, but experiences of others who have gone through it. And I have found a few bloggers – some describing their experiences with the same kind of chemo as me – which have been useful, but I’m not sure I feel any the wiser as a result! Here are some of the things I have learned from them:

  • Everyone reacts differently! Some feel bad on the first 1-3 days after a treatment, but for others it kicks in later.
  • The nausea isn’t as bad as people imagine, because they can control it with drugs.
  • It starts to feel worse the more sessions you go through….

But no-one seemed to be able to describe what “feeling bad” feels like! So needless to say I was facing my first chemo session yesterday with some trepidation….

You get the chemo as an outpatient and my appointment was scheduled for 10:15 yesterday. “My” nurse was excellent – she has run several marathons so we were on the same wavelength from the beginning! The ward is very comfortable with reclining chairs and drinks and snacks that you can help yourself to. The chemo is administered by intravenous drip and after a handful of anti-nausea pills it was time to get hooked up! The whole thing was supposed to take a couple of hours – but they hadn’t considered my pathetic veins in that calculation! Once she finally found a vein (with the help of a heated pillow) my arm was extremely painful unless the drip went really, really slowly. So it ended up taking 5.5 hours. The good news is that this is a one-time problem. I’m due to have a Central Line fitted before my next treatment – until yesterday I was truly dreading the Central Line, but now I can’t wait to get it!

So far I’m not feeling as bad as I feared! No nausea per se (thanks to the arsenal of anti-nausea drugs I am taking – don’t even want to think what it would be like without all that!) but a bit queasy and no appetite. I think I’m hungry but then struggle to actually eat anything. I’ve been warned not to lose weight, so I’m trying to eat as much as usual, but in small portions which pretty much means I’m eating non-stop, but that’s OK. My mouth and throat are dry, so I’m continuously sipping drinks too. And otherwise I just feel a bit yucky, but not really, really yucky! Apart from a nap after lunch I’ve been up and about all day and doing stuff, though in slow motion and only stuff that doesn’t require any serious thinking! I’m even thinking that in a wee while I will put on my running gear and go for a little run in the neighbourhood, with walking breaks if necessary.

So let’s see how it goes in the coming days. I’ve deliberately made no plans for this week – apart from some additional tests at the hospital on Thursday, so I’ll just to take each day as it comes – I’ll keep you all posted!

Here’s the plan…..

June 18, 2010

I’ve been feeling really great this week! A feeling I can only describe as a heightened sense of wellbeing – strange as it may seem. I’ve been trying to get some things done since I’ve no idea what I will be feeling like in coming weeks, but at the same time have NO GUILT (yes, it took me a while to recognise that one, but ladies – it feel s good!) about doing absolutely nothing if that is what I feel like. One sunny afternoon I just went out into the garden and read my book for the whole afternoon!

Yesterday I got the results of my staging tests and my treatment plan.  My Hodgkin’s is stage 2A – it is in both my armpits and both sides of my neck, but hasn’t spread below my diaphragm or anywhere else for that matter.  The “A” signifies that I don’t have night sweats, fevers or weight loss. (You can read more about the stages of Hodgkin’s here).

Relatively speaking 2A is good!

The treatment is 4 rounds of chemotherapy (ABVD), with each round lasting 4 weeks and two treatments in each round. In other words I’ll be having the chemo every second Monday starting from this Monday for the next 16 weeks until end September/October and then radiation therapy after that. I will be honest here and say that 16 weeks seems like a very long time…..

Once again the hospital impressed with their professionalism. They gave me a huge thick binder full of information – a lot of it about the potential side effects. I have to confess that I’m struggling to read a lot of this stuff – I start feeling bad as soon as I read it! So my heroic hubby has agreed he will read it and be in charge of side-effects! There is even a book in the folder for him “dit liv som pårørende” which doesn’t translate very well, but is something like “your life as the closest relation”. What can I say….

But it’s Friday afternoon and nearly weekend which I’m going to enjoy before Monday morning rears its ugly head!

Keep on Running…..

June 14, 2010

I ran a half-marathon on Saturday – Broløbet over the bridge from Copenhagen to Sweden to mark the 10th anniversary of the bridge’s opening.

I’d signed up for this race months ago – I’m always on the lookout for fun and “different” running experiences! I typically have one or two main running goals each season, but sign up for other races regularly just for fun or as training. This one was meant as a fun run, my main goals for this season being Etap Bornholm in July (a marathon spread over 5 days) and Berlin Marathon in September.

But the experiences of the last few weeks have seriously interfered with my training both physically and mentally and I was really in doubt about whether I could be bothered doing the race on Saturday. I should add here that even when I race for fun I can’t help but being a little bit competitive (with myself!) and I knew that there was no way I would be able run a good race. But in the end I decided to go for it and to forget about getting a “good” result and just to take my time and enjoy the experience, which I really, really did. And afterwards I feel so much better about myself! Those horrible aliens may have invaded and occupied my right armpit (and wherever else they may be lurking) but my body is still a lean, mean running machine and I’m going to show them…..

Have I mentioned that I LOVE running!

When I first realised that I might have cancer I started googling to try to find out if I would be able to keep on running if I did (I realise that for non runners this probably seems a bit weird). There is a lot of information out there about how good exercise is for cancer patients but most of it is about people who start exercising after they are diagnosed and I really struggled to find anything about people who are already in good shape. Then last week I stumbled across a series of articles written by a woman who was a serious runner and who also got Hodgkins where she describes her experiences running through her chemotherapy. They are truly inspirational. (I have added links to these articles in the right column in case anyone is interested).

I’ve decided I’m going to keep on running no matter what! I realise that it is going to be tough and I’m not going to be able to train like I usually do, but Saturday’s half-marathon taught me that I can enjoy running just for the joy of the moment, without having to have a goal other than that.

Fit for fight…..

June 9, 2010

Happily I can report that my first meeting with the Haematology Dept. at Herlev Hospital yesterday instilled me with a lot more confidence in the Danish Health Service than my last encounter (see my previous post). There is a lot of debate in Denmark at the moment about closing small hospitals in favour of so-called “super-hospitals”. Haematology is a specialism that has already been centralised in only 4 or 5 hospitals in the country and I can only say that I have no problem travelling a bit further if I can be treated in a unit where they are deeply specialised in exactly my illness. Everyone I met in Dept. LA121 had just the right mixture of professionalism, warmth and urgency which bodes well for the next few months!

It suddenly occurred to me yesterday that hanging out in hospitals has now taken over in my life from hanging out in airports/planes! To be honest I’m not that keen on hanging out in either, but choose to look on both as a necessary evil to achieve an objective! And I had a bit of a warm up for hanging out in hospitals when I spent 5 days in a Swiss hospital in February with my daughter who had broken her leg.  

Both hospitals and airports provide excellent opportunities for people watching which is a pastime I do enjoy.  The public you come across in each is a little different, but I can’t help thinking that the ones you see in airports (particularly in business class or the charter tourists downing the beers before their 6 am flights) are just gearing up to be the ones that will later hanging out in hospitals (of course I can see the irony that I have ended up there too!).

Bizarrely, though, hanging out at the hospital makes me feel a lot better about myself. My pulse and my blood pressure provoked exclamations of admiration from both nurses and doctors and I realised they are just not used to dealing with fit people! I felt very pleased with myself when the young (dare, I say cute?) medical student who was having trouble giving me local anaesthetic in my hip (to take a bone marrow biopsy) exclaimed “it’s because you are so amazingly slim!” And as I sat in the blood test waiting room and looked around I felt out of place among the wrinkled, wheelchaired whining flock.

 Yes, I do feel that it is deeply unfair that I got this disease when I am so fit and healthy, but I do also deeply believe that my fitness and healthiness are going to serve me well in enduring and recovering from the coming months of treatment……

That scene where someone gets told they have a serious illness is one that features again and again in films, and probably one that most of us have played out in our heads as some kind of subconscious insurance policy against it actually happening (I wouldn’t bother it doesn’t work!). The reality in my case was not at all like those dramatic scenes – more like a total farce!

I had had a lymph node removed the week before to see if it was malignant and to be honest had a very strong intuition that it wasn’t going to be good news. In the intervening week I had been reading up on lymph cancer so I had some idea what we were talking about. The more I read, the more convinced I was that I had it. So I took hubbie along with me for moral support.

When we finally get shown into the treatment room (after waiting about an hour) we get told that the Doctor who had been treating me was otherwise engaged so they had brought in another Doctor. There was also a nurse there and the atmosphere was…. well let’s call it tense… after all we all know what we are there for! I’m a girl who likes to cut to the chase so I wanted him just to get on with it, but he had other ideas. First he wants to check the wound and then he starts checking all my other lymph nodes, which was obviously just a time waster since they had been checked the week before and without a diagnosis there wasn’t really much point….

Finally that’s over and then my phone starts ringing in my bag and everyone starts looking uncomfortably around. I know it is my son and that he won’t give up until he gets an answer, so thrust my bag at hubbie and mutter that he needs to deal with it. So he goes into the corner and starts mumbling into the phone.

 Then the Doctor finally pulls himself together – sort of – and the conversation goes like this:

Doctor (looking at the floor): We are referring you to Herlev Hospital to the he….he….he (looks at nurse for help)

Nurse: Hematology

Doctor: Yeah, hematology, it’s a difficult word, the hematology department at Herlev because you have a blood disease.

Me thinking: What the heck is he talking about a blood disease???? As far as I know we’re either talking about lymph cancer or an infection……

Me out loud: A blood disease? What kind of blood disease?

Doctor: Ahem, it is called Hodgkin’s Lymphoma it is a kind of, ahem (looks at the floor for help), it is a kind of ahem, (looooooooong pause)……..

Me (I know about Hodgkin’s Lymphoma from my research): It is a kind of cancer, right?

Doctor (clearly relieved he actually didn’t have to actually say the dreaded “C” word finally looks up): Yes it is…..

I wonder if this guy actually was a Doctor, or just some poor Hospital Porter they shoved in a white coat to deal with the hordes in the waiting room??????

So tomorrow I’m off to the he…he….he…hematology department at Herlev Hospital for more tests, where hopefully I’ll see a real Doctor who isn’t afraid of the “C” word…..

PS. In fairness I should add that every other single person that has dealt with me during this has been professional, warm and friendly……..

What the heck is going on! If I had suggested to anyone 6 months ago that I was worried about the effect volcanoes or illness would have on my chances as a freelancer (bearing in mind that I am the fittest, healthiest 40 something I know!)  they most probably would have thought I was totally paranoid!  

And then what happens? I start my business on 1 April and the work is rolling in all by itself – 3 assignments lined up each for April, May and June.

I already wrote about having to cancel assignment 1 because of our friend the Icelandic volcano https://kirstenejlskov.wordpress.com/2010/04/21/night-sweats/.

Assignment 2 actually went off without a hitch last week, phew – invoice in the post today!

Assignment 3 was due to be a 4 week trip to Afghanistan in June. And then this week I find out I have a form of cancer called Hodgkin’s Lymphoma and now I have to cancel Afghanistan, plus any other possible trips in the near future….

This, my friends, is not the perfect start-up for a freelancer whose business depends on delivering advisory services out in the big wide world! But to be honest, this does not feel particularly important now that I have bigger fish to fry. It is a total shock to be told you have cancer under any circumstances, but as 40 something health and fitness freak with no symptoms other than a swollen armpit, it is close to surreal. It is not an exaggeration to say that it pretty much dominates my every waking thought at the moment.  

It’s not all bad news. If you’re going to get cancer then Hodgkin’s is a good one to get – it has one of the best cure rates.  Right now I’m waiting for an appointment to go for additional tests to find out the stage of the cancer so as to plan the treatment, which will presumably be chemotherapy. I’m happy to say that all in all I’m feeling optimistic and positive most of the time. The theme of my blog is going to be a little different than originally anticipated now though…