I recently heard this quippy, catchy little phrase; all you need to be happy is 3 things:
- Something to love
- Something to look forward to and
- Something to get out of bed for (purpose).
It feels so long ago now, like another time almost. A surreal dream that begins to fade from memory. It's hard to revisit this period; the nightmarish paradox of receiving a life saving treatment that could kill you. Except it was not long ago at all as my physical limitations like to remind me!
It wasn't until the day before I was to head back in that it hit me hard. I had been living the last few weeks as though they were to be my last. Last time I’d see my cat, my house, my everything. I'm no stranger to anxiety, but the countdown to going in to the ward I knew far too well was a living hell. I don't know quite how to properly emphasize the terror I was feeling. I read somewhere that one’s priorities sharpen when in life and death situations; it was my family that kept me going. The thought of leaving them so early filled me with such intense panic and I would see the three of them at Christmas, on birthdays, just the three of them. The fourth gone.
In my less lucid moments once the pain started and during moments I thought I couldn't carry on I’d remember I was needed. As the weeks dragged on and the pain remained I found it becoming harder to think of the outside. It was too torturous, and I was jealous of everyone who wasn’t in hospital, going about their lives. So I tried not to go there.
I adopted tunnel vision and focused on those 4 walls. I tried to block out everything except little routines every day. I’d set little goals for the day each morning like have a shower before lunch, then listen to music then nap, etc. I'd rehearse what I’d tell the Dr's on their morning rounds, and resent the monotony of their questions and back tapping, usually forgetting the questions I wanted to ask. I began to hate the constant coming and going of the large volume of staff. Dr's and nurses and cleaners and food delivery. Mobile X rays, various specialists, the list goes on. God I can feel myself getting more and more depressed by revisiting it! It's one thing to get flash backs, nasty little jolts that remind you what has happened, but it feels quite another to purposely go back. I guess there’s still a lot to sort through.
It wasn't all totally bleak and I like to think that sometimes I managed to make the best of a bad situation. I was grateful for the showers; so much nicer than mine. I looked forward to my favorite nurses coming in and having a laugh with them. My family were in all the time and nothing was too much trouble to bring in. I even had a coffee machine set up! I had some great friends visit, and I had the biggest TV in the ward which meant I could escape reality quite a lot (the Friends theme song forever etched on everyone's brains).
Whatever helps you cope. Laughter helped me (yes friends STILL makes me laugh!). Plus any reality TV show you can think of, I was likely in the middle of watching. Except the cooking ones. It was a long 6 weeks till I felt fresh air again but it felt amazing.
Day +111 (Monday). The area the Hickman was inserted is healing well, albeit with numerous scars and discoloration, and I'm doing more and more each day. The best thing about not having a line is going swimming again, hands down. It feels incredible and on top of being great exercise, I just find it so soothing. My mum usually comes, we could easily be mistaken for professionals what with us being kitted out in the paraphernalia: ear plugs, nose clip and goggles, the works. It's a good look! We draw the line at a cap as well, that's too far.
A blood test last week revealed a liver reading either not improving or getting worse (not sure why I didn't ask?). Professor Carter himself said he isn't too concerned at this stage, however up your immune suppressant medication to 75mg twice daily. #booface I already had the shakes on 50mg. Anyway, I thought I'd share a bit about the regime I've received this year, before the transplant could even occur.
My first round of chemo FLAG-IDA (fludarabine, cytarabine and idarubicin and G-CSF) was pretty horrendous. It was given while I had 80% leukaemic blasts, and my counts were already dangerously low (which was how the relapse was diagnosed). Do I totally sound like a doctor at this point? So, when you spike a temperature, the protocol is they take blood to grow cultures - to see what if any bugs grow in the sample, so they know what antibiotics to slam you with. They also send you for a chest x-ray. Most of the time they never grow anything or find the cause of the infection (Dr's words).
Two days after I had finished 5 days of FLAG-IDA, I was readmitted with temperatures. The temperatures quickly escalated to a 4 day trip to ICU. This time I actually grew something - a nasty little bug called
Enterobacter clocae complex, who happens to be immune to lots of anti biotics. Unfortunately he was not found before I stopped breathing and passed out, a whole lot of people having to revive me a few times while my family watched on in horror. This asshole bug had it in for me - I couldn't breathe, and needed a mask. I had to be on a machine to keep my blood pressure up. It tried to give me liver and kidney failure and despite my best efforts, I was given a catheter. I lost all sense of time or day, as there were no nearby windows or clocks. I was propped in the same position and could barely move for all the tubes coming out of me. I couldn't drink or move my bowels without asking the nurse first, and I had to plead with them to allow me to use a commode instead of a bed pan. I could go on, but let's not eh?
Suffice it to say I am without dignity 100% now. That hospital stay would last 2 weeks and would probably be the scariest time of my life. It was also a revelation to me, as I told my brother later. I realised I actually didn't want to die, I actually DID care what happened to me and death was not an option. Depression, anxiety and the trauma of already having been through cancer before had confused that for me. So, to 'de-escalate things', my haematology specialist removed the IDA (idarubicin) from the second round. The infection this time was managed quickly - 2 days of temperatures, and 6 days inpatient. They did however find that same nasty little bug again. This time it didn't stand a chance.
Entered remission after the first round.
What an insane few weeks it's been. I am +100 days today, and this week is the week I should in theory be having +100 day tests like a bone marrow aspiration, loads of blood tests, Hickman line removal , lung function test and dental check up. The lung function test did actually occur this week, plus the removal of stitches from where the Hickman had to be cut out. It was definitely back to reality with a thud after 4 incredible nights away in the South island. Everything else has already happened, frantically rearranged appointments to accommodate the bone marrow biopsy being brought forward by 3 weeks.
Having it all done early obviously meant less waiting which is a great thing. I just wish I'd had more notice than 1 day to emotionally prepare! Whatever that means. It was due to the fact that I need sedating for it, which they only had space for that next day. Blunt delivery, but hey unsurprising coming from a Dr right? It for sure gave me less time to freak out and get my anxious Annie on. Pro’s and cons for both I guess. It did mean I got to go on holiday without a line sticking out of my chest, and go in the hot pools in hanmer springs which was amazing. Having had a line since April, that small sense of freedom? Priceless. Was the removal awful? You bet it was. Probably not making much sense here, I guess because I'm still sorting through what's happened in the last few weeks. Waiting for the world to stop spinning on its head.
Mum and I got to go away with the (preliminary) knowledge that my biopsy results were fine, and once we got back, even better news. My CNS (clinical nurse specialist) rang 2 nights ago to confirm the results; Hans has officially taken over. Complete remission she said. 100% donor marrow observed!
I wish this meant it was over, that things can back to normal. I wish I didn't need a blood test next week, or more bone marrow clinic appointments with the specialists and 5 more years of monitoring. I wish my liver would sort itself out so I can stop taking immune suppressant drugs, and that my lungs hadn't taken such a big hit. I wish I hadn't woke up this morning feeling as though I’d been hit by a bus, or that I found it so difficult to leave the house yesterday. I appreciate it's going to take me a while to put the stuffing back in, I've just got to take each day as it comes and remember to allow myself grieving time too. I still can't believe it worked; a part of me thought I wouldn't see this end of the process and when I stop and think of the enormity of it all, I can't catch my breath. I would never say I was lucky, but I'm sure as shit grateful to that generous German out there – my perfect match.
All day I've struggled to put my finger on what was bothering me. Deciding what to write about today; My head has been a mess of racing thoughts, jumping from one thing to the next with often no connection. Much to my frustration I started a number of entries in my head until they got lost in the mess, then I'd forget to fish them out. If I had to label how I felt today, I’d say it was frustration. This conclusion took all day to reach.
Frustrated With what?
It's a very weird feeling to be frustrated in the present moment of your life, yet be so grateful for it at the same time. Frustrated with the lack of energy, ongoing nausea and bowel issues, having had no hair for 6 months and the frequent trips to hospital, I could go on but I will spare you.
However I feel grateful in a way I never experienced when I was first recovering 2 years ago. I kept waiting for the elation that never came, but what I lacked in elation I made up for in guilt and shame. I didn't understand what was going on; I’d survived! Smile! Be happy! No?? Well, on anti depressants you go then. I'm still on them now. I stopped fighting against my own prejudice around medication and what that meant for me as a ‘fighter’ and ‘survivor’ and being a mental health worker at the time, and accepted help. So glad I did. I mean you wouldn't refuse a cast for a broken leg, right?
I can admit (and others will verify I'm sure) that I was bitter, resentful and depressed. I was a nightmare, I felt insane, and that I was an unnecessary burden and drain on others. Turns out it's actually very ‘normal’ for people to experience depression during and after treatment! Who knew? I definitely had no idea until I mentioned to my specialist that my GP had prescribed anti depressants. I'll never forget how shameful I felt admitting it to the Dr's I should have been so grateful to. What I realize now is I was actually grateful, and that it was OK to not be OK after all that had happened. It doesn't have to be an either or situation.
I guess I'm talking about this to bring awareness to an area less discussed, acknowledged or understood. For me it's useful to talk about it as I approach the ‘end' of treatment ( day 80 ish note), I think (hope!) I can recognize the signs this time.
I assumed I’d emerge, like the others you see in magazines, beating the odds and then I would run marathons, with renewed positivity on life. They are the exception not the rule I later discovered, and while even I'm trying my hand at things like meditation, yoga , mindfulness and ‘thinking positive’, it's exhausting. Not feeling those bubbly positive vibes today. It's not realistic to be ‘up’ all the time. But that does not mean I’ve stopped feeling grateful. It just means I'm having an off day. I'm saying this more to myself I think; survivors can have off days too.
Has anyone experienced anything similar? Comment with your story.
So the second blog is here. The first one was relatively easy in terms of topic, introduce myself and give a brief overview of my brushes with the big “C”. This one's proving a little harder for some reason. I mean it's not like I'm short of topics, it’s more like over whelming thoughts of ‘where do I begin?’ so I thought I'd share a little of what it’s like as an out patient: a day in the life of a hospital visit.
I'm currently sitting in the Wellington blood and cancer day ward where it's very noisy. It took my nurse 25 minutes to coax enough blood out of one of the 3 lumens on my Hickman to fill the 3 tubes required for today's test (full blood count and the level of the immune suppressant drug cyclosporin in my system) .
They always ask me what lumen works best and no matter which one I say, I'm wrong every time. Fickle fiddly lines. The source of so much stress and anxiety yet they're infuriatingly impossible to live without.
When I was first sick I was so grossed out with the PICC that was put in my arm. I found the procedure pretty traumatic actually, as most things were that year. I hated it Until it got a bug in it of course then I begged and pleaded and cried to keep it. To no avail, the Dr’s were determined; out it came. From then on I was much nicer to it and ‘affectionately’ called it Mr PICC. I figured if it felt less unwanted maybe it wouldn't get sick again. Whatever coping mechanism helps right? I had 2 that year and 2 this year. Plus my current Hickman. Which of course I love….
It's the last place you’d come for Peace and quiet. Various machines beep, people's call bells signal loudly to nurses that assistance is needed and to my right a patient is trying to privately cry to one of the palliative care nurses (they provide support during the transplant process so it's not necessarily end of life stuff). Another across from me sounds sick , coughing and spluttering, and the eye contact made with others in the room conveys a unity of fear; please don't let me catch that!
Then there’s all kinds of conversations. I heard a guy of a similar age who had a transplant at the same time as me being told her was getting admitted to the ward. Gulp. A joke is shared with my favorite nurse; we both laugh. Another patient is vehemently denying having received a blood test card last time he was in. The chase is usually on mute; but today has the volume up. The lovely cancer society volunteer is making his hot drink rounds. I’m impatiently patient as I check the time for what feels like the millionth time; 2 hours 15 minutes.
Then I hear the Dr approaching and its finally my turn. He has good news too; I'm free to go as my blood counts are all fine (meaning I don't require any transfusions) and, I only have to go in twice a week from now on, instead of 3.
You might imagine you'd then hear me scrambling to get the hell out of there.