5 words

If someone told you that you could choose 5 words to be written in a letter to you and that no matter what they were they would be true what would you choose? You have won the lotto? Here is a pay rise? Here is a new puppy/phone/TV/ car/mansion? Hands down, no contest, if I had been asked this question at any point over the last 18 months these are the words I would have asked for:

And, because I'm an incredibly lucky person, or because people have been wishing it for me with all their might, or because I had a super medical team from start to finish, or because I went through a year and a half of grueling treatments , or because drug companies want to make money and so they research diseases and the best drugs for them, or whatever reason it can be attributed to, today I read those words.

I've done scans before, I've seen those words before but for some reason this time feels different. It's time to really leave it all behind now. If I could just figure out how.....

Onwards and upwards hodge blog readers. I know from views and emails I've received that fellow hodgers are still reading these posts. You'll get there in the end and when you do, life is great.

Insecurity

We all have insecurities. Will I lose my job, will my mortgage interest rate go up so high that I won't be able to afford the repayments, will my partner leave me, will my friends like my new dress, will that person I haven't seen in 2 years think I look old/fat/tired? But nothing can compare to the insecurity a cancer patient, even one in remission, feels.

Will it go away? Will it come back? Is it already back? Will I die? If this scan is OK will I have enough time before my next one to get my wedding and honeymoon done and what are my chances of relapse in between? (My current dilemma). These insecurities are so powerful, so overwhelming, and yet so surreal, that at times they can take over your mind completely. Now is one of those times.

Yesterday I did my one year post treatment scan. Today I did absolutely nothing productive. Tomorrow I get the results. Somewhere, in some parallel universe they inflict this on people as a form of mental torture. Here, it's just a day in the life of someone who has been blessed with the big C. At least I couldn't care less if I look fat anymore.

From scan to scan

Someone else I know who is still in treatment for a different type of cancer and has been for many years, said this to me recently - that everyone who has gone through cancer treatment will spend the next while living 'scan to scan'.

I am now 10 months out of chemo. I have a great head of hair, and hair in all the other places I never wanted it. My lungs are very much improved. My neuropathy will still wake me up at night and the ear ringing drives me crazy at times but I will gladly and easily live with these reminders of the treatment that saved my life. However, there is not one day, or one hour that passes without thinking of relapse. That feeling when you remember something really important that you've forgotten and your stomach does that little flip - it's like that all the time. Working at a desk - stomach flip. Reading a book - stomach flip. Smiling at the dogs playing in the sprinkler - stomach flip. Don't get me wrong, I'm far from miserable sitting around thinking about it all the time and it certainly doesn't cause me to lose sleep (that's the neuropathy) but it's still always there making everything seem just a little bit worse but also a just little bit better.

How to really move on is the current dilemma and it's one that is not often talked about in the cancer world. I'm no fan of the cancer warrior/battle imagery as I have mentioned before but I am starting to think that the real 'battle' is what comes afterwards. Does it just dissipate in time? Will I one day be able to say that Mr. Hodgkins hasn't crossed my mind for a week? A month? Maybe. Hopefully. In the meantime though I am very conscious of the inclination to wish your life away - live scan to scan- waste that life that you worked so hard to keep. I'm 10 months down with 14 months and counting to be out of the high risk relapse danger zone. My next scan is in September. If someone has some suggestions for ways to not wish those 14 months away please let me know. On the other hand, being so conscious of time means you are more inclined to make the most of each day/week/month. Ever think 'wow I can't believe the year is over half way done, it's July already'?? Well if you were counting months away you wouldn't- I'm being extra productive and loving it!

So, mental anguish as above aside I'm doing fantastic! We have had a new addition to our crazy little pack in the form of a 9 week old springer spaniel X beagle puppy who jumps, eats, burps and runs like no creature I have ever seen. He must average around 4 hours sleep out of every 24 which means we average 3.  There are few things that can bring joy to the soul like a puppy. Joy to the soul, pee to the floor, holes to your clothes, scratches to your face, bags to your eyes and destruction to your house and garden. But I wouldn't change him for the world. I will never forget the comfort that Louie the beagle brought to 2012 a.k.a. the year of the couch. If I relapse I will now have double comfort, if I don't double fun.

In terms of this blog I am finding it amazing that it still receives 100-200 page views a day despite 3 measly posts in 6 months. There are plenty out there still enduring treatment obviously. Keep at it! There might be a bit of craziness at the other end but one day soon the wind will blow and your hair will fall into your eyes and a huge smile will cross your face when it occurs to you that it's been 2 years since that happened and it will be the best feeling ever...

6 month check up

It has been on my mind for a couple of weeks now to update the blog. But, as tends to happen when you have things other than cancer going on, I just never got around to it. I love having things other than cancer going on! The final push came in the form of a check in email from someone who I have never met, but who brought so much light to 2012 for me that it reminded me of my promise to keep the blog up to date and not become one of the cancer bloggers who disappear when there's no bad stuff to tell.

The biggest and most relevant news is that I had my 6 month check up (so 7 months post chemo) and my scan showed NED (no evidence of disease - oh how I love ned, my next dog has already been named, Ned is a great name). The week leading up to, and the 5 days post scan, were HELL. I literally imagined every symptom you can have with Hodgkin's including all the ones I didn't have on initial diagnosis and convinced myself it was back. The consultant puts my 'scanxiety' down to the turbulent time I had around the mid way check up scan that some of you may remember revealed remaining disease and bought me 2 more months of chemo and moved me into the 'least likely to be cured' box. My bloods last week showed a few levels on the upper limit of 'normal' but, the day after the test, I came down with the most horrendous flu/chest infection/everything infection that totally knocked me down for a week so I'm putting my high white cell count down to the fact that it was fighting off the mother of all viruses. So, I'm signed off from stabbing, scanning and poking for 6 more months unless I develop any symptoms. As that will be my 1 year post treatment scan they want to do a PET instead of a CT to make 100% sure and, all being well, it'll be CTs from there on out.

In other life news, during our holiday in Mexico last month while scuba diving, Nick proposed - wedding planning time! I joke that I tested out the 'in sickness and in health' thing a little early but at least we know we've got that one down. Pretty sure we can put the 'for better or worse' thing down as cancer too so that makes two of them. This marriage thing will be a piece of cake. One of my mid-treatment decisions was that I needed to do a round the world trip, ticking some of the bucket list places. Round the world honeymoon? Yes please!

It is also worth mentioning, while we are semi on the subject of scuba diving, that I had been told that scuba diving post ABVD chemotherapy may not be safe. As the Bleomycin (the B in ABVD) damages the lungs, there is an increased risk of lung complications at depth, breathing pressurized air. I had decided it was something I would just never do. As amazing as diving is surely it isn't worth the death risk? So, when we were in Mexico and Nick was so insistent that I went diving, I was a little concerned he was trying to get rid of me. After a couple of days of nagging, I decided to get in touch with the consultant to get his thoughts. He felt that as I had no specific lung issues during chemo (meaning nothing other than the shortness of breath that is par for the the course) that I would be fine, but to stay shallow (15m) and be extra vigilant. So, for all you ABVDers who long to swim with the fishes, don't write it off. You may still be able to go.

The hair is coming along nicely. Definitely looks like a very short haircut now as opposed to hair growing back.I have dutifully attached a picture taken FAR too early this morning for the purpose of this blog (I generally don't take early morning photos, or any other time photos, of myself) but you get the point:

I have taken to wearing hairbands - helps with the 'butchness' of my hair. The flowerier the better. Butch people don't wear flowers in their hair right? Sometimes I feel like one of those baby girls whose parents have stuck a bow to the side of their head so people know they're a girl. But hey, I'm not complaining, my hair is growing and growing, I HAVE HAIR. I have learned my lesson a hundred times over - I will never again complain about hating my hair.

So that's it, no more news. Life back to normal. Work, home, dog, holidays, weekends, housework, car troubles, laundry, I love it. There is a lot to be said for the mundane. And for Ned.

Milestone Haircut!

So, it has been another month, almost 2, since the last post and life carries on. Work is normal, home is normal, life is normal. Normal but different.

Last night I had my first haircut in about 16 months and for the first time in that 16 months my hair is longer than Nick's again. Albeit more to do with the fact that he had a haircut also the day before me and they were a bit over-zealous with the razor than it is as a result of my own hair growth but a nice milestone nonetheless.

I was also at the doctor last weekend, nothing to do with the hodge. During chemo I got quite bad ear ringing that was put down to nerve damage. Towards the last month a kind of crackling was added to the ringing. This has continued, along with the ringing, since then and has gotten worse over the last week. A couple of days ago I had had enough and decided that it was obviously unrelated to chemo and to go to the doctor. Two interesting things came of it aside from the doctors diagnosis of 'its nothing, put these ear drops in, you'll be grand' in true Irish style. Firstly, when looking in my ears he announced that my ears looked healthy. That's good. Then that they looked clean. That's nice. Then that overall my personal hygiene was excellent for a teenager. Hmmmm. At 28 years old and rocking a middle aged at best hair do, I'm not sure if this is an insult or a compliment. But, more importantly, I realised just how 'fine' I feel to even notice the crackling in my ears. 6 months ago it was the least painful/irritating/upsetting and worrying of a world of symptoms. Now, it's all I have to complain about. That's a weirdly nice feeling! And now that we have confirmation that my personal hygiene is up to scratch and that my hair is no longer the shortest, Nick has nothing to complain about either. Poor guy has had a lot to put up with.

The hairdresser asked me if I had been self conscious about going bald headed. I told her not around friends and family but I'd never been able to muster the courage to go out in public. She asked did I have a boyfriend and when I said yes she asked did I let him see me bald. I told her I lived with him and so it would have been hard to hide. Oh, she said. Silence. 'And are you still together'?? HA! Well, this is coming from the same person who said she always thought that it must be so hard to have no eyelashes because all the water would get in your eyes in the shower. Genius.

Anyway, so end of April is my scan with results appointment first week in May. I won't say that relapse doesn't enter my mind 125 times a day, because that would be a lie. It's 155 times a day. Rather than decreasing as time goes on, the worry seems to be increasing as it gets closer to scan time. I think the 6 month wait was too long. After April I'm planning on insisting that someone at least gives my neck a bit of a grope and stabs me for some blood tests every 3 months for a year or so. 6 months with no reassurance is torture. So, to take my mind off it, post chemo lovely holiday #3 is upcoming, 9 days to be exact. I'll be sipping Corona and eating guacamole while on a perfect beach in Mexico. Heaven.

I'll sign off for now, hope you're all doing super :)

Sx

Back to 'normal'

But what is 'normal'? It's been so long since anything about life felt normal that I've kind of forgotten what it felt like. One thing (aside from my hair - more about that later!) that is getting back to normal is the way my brain makes associations with certain foods, places and even words. The words is the most interesting to me - anyone who has never had chemo/cancer would never think that ordinary words can take on such negative connotations that they can make you recoil in a gagging ball at the sheer mention of them. For example: Shots (went from fun tiny alcoholic beverages to pain inducing, self injectable little needles of hell), Saltwater (went from sea, holiday, swimming to nauseating 4 times daily mouth rinsing), flush (the function of a toilet? Nope, little syringes of saline that are pushed into your veins 27 times per hospital visit), dressing (the act of putting on clothes? or the bandages that cover the cuts, scars, and permanent tubes hanging from your arms soaking up the blood that permanently leaks due to blood thinners?), drip (probably one of the worst, no longer something that happens to a tap but instead the little drip drip drip you watch for hours on end willing the IV bag to empty into your veins faster so you can get rid of it), alcohol (this is NOT as much fun to have swabbed over your open wounds as it is to drink. And the smell. Bleugh), piece (everyday word, or wig?) rads (radiators? or radiation?), mass (catholic church service or tumour?) and it goes on and on and on.... But nearly 4 months on (WOW!) the negative connotations are giving way to the old meanings again. When something chemo-ey pops into my head now I smile to myself. The same thing happens with the very words 'cancer' and 'chemo'. These words become a strange badge of honour, something to be proud of. I did that. I always did wonder is it possible to finish chemo and be proud as opposed to afraid? I'm proud of what I achieved last year. I'm proud to be out the other side. I'm still afraid that I'll be catapulted back into that world, one more mutated cell is all it takes. I guess you can be scared and proud at the same time.

In the spirit of returning to normality I ditched the wig this week. A full week of no wig. I think too little emphasis is given to the trauma of going through the hair regrowth stage. You imagine losing it will be difficult, and that having none will be difficult but assume that when you start sprouting again all hair and image issues will suddenly disappear. Wrong. I went from curls down my back to this. Don't get me wrong, I'm happy to have it, but it's still not me. The first time I tried to venture out without a wig/hat last week I cried in the car. I was only going to the hardware shop (surely this is somewhere a shaved headed woman wouldn't be too conspicuous?!). It was terrifying! Like I was naked. Then I came to the same realisation I came to the day my hair started falling out - this is just how I look now. For a while. And so, a whole week, no wig.

I am minus 20lbs of the 40lbs that I put on in the couple of months of pre-diagnosis eating and sleeping and the 6 chemo/steroid months. They fell off with very little effort for the most part. It's getting tougher though so I think some serious dieting and mild exercise (still too unsure of my lungs to attempt anything else) is in order.

I also have been back at work full time since January 2nd. I don't feel any more tired than I would have before I got sick. Overall I was pretty surprised at how well I coped and also how it instantly felt like last year never happened. Life as usual. The world carries on. And for this I am very grateful.

Hair picture anyone?! This is my new do. This week. Who knows by next week!

Goodbye for now blog world, I know from the stats that this blog still gets approx 200 views a day. I hope that means that someone, somewhere is benefiting from it. If you're in the midst of it, keep going, the end and normality IS near. Really soon, you're going to be very proud of yourself.