The end of chemo (for now)

I am always too scared to say that I have 'finished' chemo, or that this is over, like it would be tempting fate to say (type) that. So, I'll say that THIS round of treatment, for now, fingers and toes crossed, is done. DONE DONE DONE :) It's been 4 days since the last 4 bags of poison were dripped into my poor veins. It was the worst dose yet. I was so sick, no amount of anti-sickness pills could get it under control. It was 'swallow a pill and a mouthful of water and immediately up comes the pill and the mouthful of water' sick. Horrible. Nick says I had to go out with a bang, like the grand finale of a fireworks display. I say it's more like chemo saying 'right, if this is going to be the last time I get you I'm going to make it count'. Whatever it was, it was unpleasant. It will also probably leave me with a skewed memory of chemo. Not that I would have remembered it as NICE, just not AS bad as that last one was. Then again, I'm convinced women are born with an innate ability to forget how bad things actually are. This is why we have more than one baby and why I have agreed to travel to Peru and do the Inca Trail to Machu Picchu AGAIN with Nick. If we didn't have the ability to block out the extent of pain and suffering associated with these decisions, we would surely never agree to voluntarily go through them again?

So my next scan will be on November 1st. If it's clean, I get 3 months off hospitals until the next check up. If it's not I get 3 months of a higher dose chemo and a stem cell transplant. There are no words to describe how much I want it to be clean. In the meantime, I have nothing to do but sit around and wait, trying not to think about it. Oh and go on holidays. HOLIDAYS!!

My shopping list for this holiday has been quite bizarre. One piece swimsuits to cover blood thinner injection bruises and my extra huge belly, a shorter wig, a big floppy hat, flat shoes (heels make my calves cramp up...who knows what that's about), SPF 50 suncream, a large supply of medications and 5 stretchy maxi dresses since none of my other clothes fit me. Good times. Couldn't care less though, I'll happy sit by the pool looking bloated and bald with a big smile on my face. Like a big, grinning humpty dumpty. Poor Nick.

Maybe it's because today is the first day I feel even slightly 'normal' or even human, or maybe it's because it hasn't quite sunk in yet that I don't have to go there anymore, but I don't feel that incredible elation at being 'finished'. However, next Tuesday, when I'm on the beach instead of in the chemo ward, I'm pretty sure how I'll be feeling.

Onwards and upwards, it's all just recovery from now on...... :)

The end is in sight

It's confirmed, my last (hopefully) chemo is on Monday and they will also be pulling my PICC line that afternoon so after Monday there's just one quick blood test the following Monday and then it's holiday time! No more appointments then until my end of treatment scans at the end of Oct/ start Nov. I can't believe how weird it feels to think I'll have 3 weeks with no hospital visits. Having gone from not being in a doctors office once in the 5 years up to 2012 and even then it was just for travel vaccinations, to this was quite a leap. I think the leap back is going to be even more traumatic.

I've said all along that as much as I wanted chemo to end (and BELIEVE ME I want it to end) I think the hardest part of all this is going to be the day they say 'OK go home, see you in a few months for a check up'. But....but....but.... what if I get a temperature? What if another limb turns blue? Who do I get to check it if I'm not in the hospital every second day? Just how dangerous is a regular cold/flu? If I get one a month after chemo do I still need to go to A+E or do I just carry on as usual? How do I cope with the thoughts that I'm not doing anything to fight cancer? Surely I'm not expected to just go back to normal? Wait? Wait to hear it's gone? To hear it's not gone? To hear it's back? While I'm doing chemo I'm DOING something. As soon as I stop the ball is back in Pacman's court. I'm out of control. Ah who am I kidding, the ball was always in Pacman's court. I never had a single shred of control over this. So nothing's changed. After Monday I'll have done all I can do in terms of frontline treatments. If it hasn't worked, I'm in trouble.  If it has, for how long? Will this be the end? I know it's going to sound INSANE, but I feel like if that's the end then I got off too easy!! Don't get me wrong, it was far from easy, but I coped. Ok, enough. I'm going to assume it worked, enjoy my holiday(s) and not think about it. HA. I wish.

I have invested in a large tube of arnica gel in an attempt to curb the intense stomach bruises. They are really getting out of control. Pretty soon I'm going to have to start injecting my ass cheeks if some of them don't start to fade. I'm out of belly space. Even with the steroids. Turns out the smell of the arnica drives Louie mad, that beagle nose doesn't miss a thing. It's not a problem, but trying to cover your midriff in gel is pretty hard with 20KG dog jumping up and down beside you like he's on a mini doggie trampoline at your feet and doing everything in his power to grab the tube while barking. Louie is hereby banished to the garden for all future arnica applications. Just hope the smell of the gel ON my stomach doesn't incite the same reaction or he'll be living in the dog house from now on. It's a nice dog house in fairness, has a porch. Fancy.

Time to walk said beagle. 3 more days. So close I can smell it. Actually, that's probably just the arnica.

Strong Trees

Today I received the most wonderful gift - an old neighbour (as in someone who used to be my neighnbour as opposed to a neighbour who is old!) called in during a short visit to my parents house to give me a painting she had done for me. She called it 'Strong Trees', because you're so strong, she said.

It made me think of how many people have said this to me over the last 6 months. People have even gone so far as to say that seeing my 'strength' has made them worry that, should something like this ever happen to them, they would be unable to cope in a similar manner. Well, let me reassure you.

If somebody, a year ago, had told me I would be where I am now and I would be fine with it, I would have never believed it. I would have thought I would crumble, wallow, break. I haven't. Why? Who knows. My only explanation is that it doesn't all come at once. It starts small and grows. However, by the time you take the next hit, the previous one is already the norm and you've grown stronger from the experience. That's life. It's not a co-incidence that in general a 60 year old is going to be better equipped emotionally and mentally to cope with a traumatic experience than a 14 year old. Let me use my own short story of the last 6 months as an example:

Lumps in my neck, assumed to be an infection, I go to the doctor. They rule out one thing after another, lymphoma was mentioned but never ruled out. Over the 3 weeks of testing, biopsies, scans, appointments, I was scared, cried, panicked, worried and came to terms with the fact that I had cancer. By the time I was diagnosed, I was no longer scared. I spent a week researching and learning about chemo. I prepared myself mentally for the sickness, the pain and made the decision that I was going to have to drag myself up each time lest I spend the next 6 months in bed. By the time the day came I was no longer scared. On this day I experienced the worst sickness I had ever had and over the next few days I recovered. By the time the next one came, I was no longer scared. I knew that this was the point my hair would fall out, I was terrified. The day it started was a low point. Suddenly it was real, really happening. I cried again. 3 days later I shaved it off. From then on, hair loss didn't bother me, not once. As I watched it fall from my head, eyebrows, eyelashes, I was no longer scared. After number 3 my blood counts plummeted. I received the infamous shot of neulasta. This week was the worst yet, I was in pain that made me cry...all day every day for a week. By the next chemo, it seemed like a nice day out in comparison. By the time it came to another shot, I opted for the daily self injections. With that pain as an alternative, self injection seemed like a much better alternative. After the worst pain of my life, I was no longer scared. At this point my veins had failed. I needed a PICC line inserted into my arm, through my veins to my heart. This tube would hang 4 inches from my arm, held in place with a plastic lock stuck to my skin, for the next 4 months. This was unfathomable. I felt sick going to have it inserted. I couldn't look at it for days. I held my arm awkwardly, was conscious while sleeping, with sleeves, towels,  the thought of tugging it was terrifying. At the next chemo I realised how smooth it went, how much less painful it was than the vein game I had gotten so used to, how I had no aching, no chemical phlebitis. I realised this tube was my friend, I was no longer scared. After 4 chemos I had a scan. All clean they said, 3 more chemos. 3 days before the last one, I was called to the office. A mistake, it's still there, I need another 4 chemos. This drastically reduced my chances of PFS (disease progression free survival, the ultimate goal of all cancer patients). I could not have been more scared, depressed, worried. It took 2 days to convince myself that the only thing I was going to achieve by worrying, was ensure I was going to lose this fight. It was not over until it was over. I was no longer scared. The months passed, one day my arm started aching. I ignored it, having gotten very used to aching. A couple of days later it was also swollen and blue. I knew this must be a clot. I went for a scan, I was right. The PICC Line needed to be pulled, I would have to do daily stomach injections for 6 months and have another line inserted in the other arm. Having been through the previous events, new PICC line, stomach injections? Please. Piece of cake. I was no longer scared. Next month, 5 weeks after treatment 12, I will have another scan. This scan will determine if treatment is finished or I need to continue to high dose chemo and transplant. It will give a very good indication of my chances of PFS / relapse going forward. I am very, very scared. If it's bad news, I'll be upset, I'll cry, I'll be scared, I'll wonder why me, I'll go to the hospital, I'll get more chemo, do the transplant and wonder why I was so scared. If it's good news, and this is over forever, I'll return to life. Just with a different view of what's worthy of my worry.


What I have is not strength, it's a different perspective than I would have had last year. When you are faced with your death, are you going to worry about self injections? A tube in your arm? Pain in your bones? No. And you're certainly not going to worry about your hair, the embarrassment of talking at length about bowel movements and yeast infections. You wonder how people can worry about things that last year would have been normal concerns, can I afford this holiday? Someone scratched my car in a parking lot. My co-workers were bitching about me in the canteen. pfffft. Yeah right. The truth is that you never realise how strong you are until there is no choice. You don't face each obstacle thinking 'OK I'm going to be strong'. No. There's just no option. You have to get through and so you do. It's not bravery, it's not strength, it's survival and in my position, you would be exactly the same. It certainly doens't hurt to have an awesome family, awesome friends, a Nick and a Louie each time you get knocked down though to remind you of the reasons you have to get back up.

Strong trees don't become strong overnight. Each day, each event, makes them more resilient. More beautiful.... Thank you for painting this for me

Cumulative effects

They weren't lying - the effects of chemo are definitely cumulative. It's now chemo Sunday. A day where traditionally I would have been back to 100%. Not last time. Or this time. I woke up in pain, all over, my jaw, my shoulders, my face (who knew you're face could hurt for no reason?), my legs, arms, urgh. I got up at 1pm, went for lunch, to my amazing sisters latest stage spectacular and was back in bed by 630. Weak.

I've found accepting this new 'half' me really tough. Cancer is always synonymous with imagery of battles, warriors, strength. They make you think that if you're lying in bed feeling sorry for yourself and your aching body that you are somehow losing. Letting the cancer win. You start to feel like if you take those extra few hours sleep that you so clearly need and then hang about in bed for an hour after you wake up that you have lost your fighting attitude and you actually start to feel guilty. Like you're being a pushover, letting it get you and thus letting it win. Then, you start to feel guilty just for feeling sorry for yourself. Like you're being ungrateful for the fact that you're still even alive when so many aren't and cancer does nothing if not make you grateful right? Or guilty for moaning about the bad days rather than being thankful for the good. Guilty for letting those around you, who are already worried sick, see that it's beating you into submission, worrying them further. Guilty for those who have to pick up your slack.

I get how crazy this is, I know you're reading this thinking that I must be mad to think that anyone would blame me for taking a few extra hours sleep and not pulling my weight in terms of dog walking duties but for some reason it's there. Nagging me, shut up, get up and keep going. I'm starting to think that this unreasonable guilt may be what keeps people going. Whatever it takes. I have seven days until my last chemo. Sixteen until my holiday. Whatever gets me there!

The chemo truck

The chemo truck got me again. Everything hurts - bones, muscles, joints, skin, eyes, chest, stomach, mouth, head, bowels, back.....

I've been asleep for the best part of the last 24 hours, for the hours that I've been awake I've been unable to move. Lying here wishing it was over. Wishing that was the last time the truck was going to get me. Wishing I was one of the people on the tv I've been staring at since they don't seem to be in any pain. Even the idiots on Jeremy Kyle. You know things are bed when you're jealous of THOSE people. Or when trying to find the remote seems worse than spending 2 hours watching THOSE people.

Now I just wait for the next three days to pass. ONE MORE.

24 hours from one more

This time tomorrow, I will have one more chemo left. I have however felt sick all day thinking about tomorrow. This is a great lesson in willpower. Come September 25th, nothing will ever require this amount of willpower. Want some cake? Nope. What would you like to do today? A jog. Anyone for wine? No thanks I'll have some water. Easy. Very easy. Anything is when you compare it to dragging yourself into that chemo room. All in the name of life though. I hope I can apply the same conviction to everything else I want to achieve once this is all over. Now that I know it can be done I have no excuses. Something tells me however that all I will ever want to achieve is having fun and not having cancer. I probably had more ambition before this happened. Then again, 'not having cancer' seems like a fairly sensible life goal right?

So this has been a relatively uneventful 'good' week. No major health scares, no clots, extreme pain, crazy numbness or unexpected side effects at all. Mr. Extreme Fatigue is alive and well and other than that and the lingering clot issues and the usual GI issues it has been plain sailing. I'm kind of hoping I've had all the 'in rare cases' side effects and that there will no more surprises. Then again, I've gone and had that thought now which mean's fate will more than likely strike me down with something crazy this week. Blue limbs or something. Oh no wait, I've had that.

On the subject of blue limbs, the arm clots are still improving. The biggest clot related issue is now the stomach bruises at the injection sites. Each day and it's corresponding injection brings a 2-3cm bruise. I have a problem injecting into an already present bruise and am fast running out of space. Maybe it's a good thing that my stomach is double the size it was 6 months ago or else I would have run out of space much sooner. Nonetheless, I'm having to go higher and higher up near my ribs with the injections (even less pleasant than doing it near the belly button). I have however bought two one piece swim suits for the holiday though, so, like so many other things, only poor Nick gets to witness the full horror of the situation. Couple more months of injections and hopefully the only shots I'll be doing will once again be the alcoholic kind. (One day I should do a blog post about the new meanings some pretty everyday words now have to me, the list is growing!)

In other news, I'm pretty sure my new menopausal state is bringing with it hot flushes. I'm ashamed to say I've always brushed this menopause symptom off with a kind of 'oh get over it, so you feel warm for a minute, big deal' attitude that can only come from someone who has never experienced it. Allow me to describe a situation for the other 20 and 30 somethings out there who are yet to experience the joys of what we will all face in 20-30 years....

I'm sitting at a table of 5 friends. The room temperature is perfectly comfortable. I'm wearing a dress with string sleeves and a cardigan. I start to feel warm. 30 seconds later my legs are sweating (????) so I pull my dress up around my thighs under the table. Then my arms are sweating. Off comes the cardigan. My face turns bright red. One friend asks am I warm. Next thing I feel sweat dripping from my forehead into my eyes. I dab them with a napkin. Another friend starts fanning me with a menu. I feel sweat dripping down my back from my head. I lean under the table so nobody can see and pull my wig back to let some air at my head. I use my napkin to dry the sweat off my chest that is falling from the front of my neck. The waitress brings water. 2 friends are fanning me with menus. Within 3 minutes the sweating has stopped, the wig is back on, the dress is back down and I'm sitting with 4 very confused faces looking at me. Hot flush, I say. You need a shorter wig, they say. Good idea.

The next day I'm at the wig place, asking for a smaller, lighter wig. It happens again. The woman who owns the shop is wiping sweat from my head with baby wipes before giving me the wigs to try on while I strip to little more than underwear trying to cool down. I make a mental note to add this to the list of most humiliating cancer experiences. My mother and I are in stitches laughing at how ridiculous this situation is. I pay for my new, shorter, lighter, cooler wig and leave with a new found respect for women who suffer this for years. Never mind fertility, the hot flushes alone are reason enough to want menopause to be temporary.

So, tomorrow is number 11. Today 2 weeks will be number 12. One week before my 28th birthday. No more cancer in my 29th year please. Actually make that any year. I've had enough. Ok? Thanks.

Judging eyes

It happened again, another idiot with some sort of issue that they feel the need to take out on me. These last few days I'm very very VERY tired. My daily outing rarely includes more than a half hour trip to the supermarket in order to provide my other half with the gourmet lunches to which he has become accustomed since realising the benefits of a live in partner on long term sick leave, which he sees as 'stay at home wife with nothing to do but cook and clean'. He's disappointed on an ALMOST daily basis.

Anyway, today's outing brought me to M+S to pick up some lunch time yummies (see why I say ALMOST always disappointed?) where I met 'bitter that I'm working and not claiming benefits' lady. The conversation, started by her, went something like this. Lovely day out isn't it, yeah it's lovely. On a day off are you or did you call in sick for the sun ha ha ha ? No I wasn't supposed to be in work today. Oh, on holidays? No, I'm off sick at the moment. Ha ha ha and you're out, that's brave, what if they see you and know you're not sick? Well I'm on long term sick leave so it's ok if they see me. This is when she gave me THE LOOK. The ahhhh I see, a welfare scammer look and said under her breath, and far less cheerily, 'not too sick to be out shopping'. So I decided it was time to drop the C bomb. 'Well, I have cancer and I'm on chemo so it's good days and bad'. Her response? Oh I know someone who had that. Yes, genius, we all know someone who had THAT. Now, less of your judgement and more shelf stacking please. I still hope she'll never know what THAT is like.

This round has been tough for some reason, nothing big, no surprises, just some long lingering fatigue that I can't seem to shake. I haven't managed to accomplish much in my good week. I did get to catch up with some friends a couple of times which, in itself, can make a good week. I also, in an event unrelated to cancer, ran into the ER doctor who first tested me and told me it was looking like I had cancer. He had a good grope of my neck there and then, with no evidence of Pacman, and told me I looked 'remarkably healthy' for having had 5 months of chemo. One of the best compliments I could have had and yet one I wish I never had reason to receive.

The new PICC line is giving me some trouble, coupled with blood thinning injections my arm is looking a little worse for wear with all the bruising and bleeding. I remember however that I was quite unsure of the first one for the first couple of weeks too and grew to love it for the pain and anxiety it saved me from on chemo days, so lets hope his left arm counterpart (that my friends have named 'chewey', apparently due to the fact that it sounds like 'tubey' which begs the question why not just call it tubey?) grows equally in my affections. My right clotted arm, aka giant smurf arm, is also on the mend. The swelling is subsiding slowly but surely, the pain and aching is all but gone and it's looking a much healthier colour in comparison to the corpse-like colour it was a couple of weeks ago. I'm hoping that after a couple of months of blood thinner injections I will be done and that will be the end of my experience with 'extensive thrombosis'.

Speaking (typing) of blood thinner injections, these babies are not too bad at all. I am not bothered in the slightest by the self injecting which caused me so much anguish a few short months ago when they first suggested my blood cell boosting growth factor shots. The only problem is some fairly extensive stomach bruising at the injection sites. I've taken to living in dresses so that I don't have a waistband pressing on the site which seems to be helping, but lets just say a bikini on holidays will not be an option unless I want poor Nick to have to answer some pretty serious questions. Then again, with an extra 35lbs since my stomach last saw the light of day, it's probably a holiday more suited to a one piece either way! Not sure how I'm going to cope with the dress situation when the weather turns cold but it will work itself out like everything else. I'm sure someone somewhere manufactures and sells some sort of woolly moo-moo that will keep me and my newly large and blue belly warm in a non-bruising fashion.

What DOES feel good is the fact that I'm down to a countdown in days as opposed to months or weeks... 4 days until my 11th chemo, 17 days until my LAST CHEMO (I managed to convince them to give me the last one a day early so I have a better chance of being well enough to attend my friends hen party on the 29th by lying ....ha! And to think those crazy doctors are laughing at me thinking I don't understand the seriousness of my condition.... pppfffftt!) and lastly but by no means least, 25 days until I jet off on holidays to spend my final chemo recovery in the sun. I've said it before and I'll say it again...just keep swimming, just keep swimming. Eventually, I'll get there.