So much tired.  How much tired can one person have.  I have all the tired.  Five and a half months post-chemo and still I am shattered.  I sleep a few times in the day – half an hour to an hour at a time, and then again, I sleep at night.  I used to go to bed around 11p.m. but now I can’t make it to 7 p.m. without needing a pre-sleep sleep.

My recovery is still frustratingly slow.  Very slow.  I have fatigue, chronic neutropenia, tinnitus and pain.  The muscle and joint pain leaves me wanting to lie down and cry some days.  But I get up and try to get on with life because there is no other choice.  I do my exercises, I go to work. I tell people I am fine.  I cannot give up.

I see my surgeon again early next year.  I’m going to tell her I don’t want to deal with D, my oncologist ever again.  There has to be someone else.  My last appointment with him was so upsetting and stressful it left me feeling there was no point to anything. I don’t want to feel that way.

We do what we do, because we have to, for ourselves and for our loved ones.  We try, we fall, we get up and take another step forward, one foot in front of the other, some days it works, some days it doesn’t, but we persevere.

I struggle with the weight of people’s expectations, against how I am actually feeling. I know full well this is my problem, that only I can change this. But knowing this doesn’t make it any easier.

I go to work when I can, not because I feel well, but because it is so important to me to try to have some bits of “normal” in my life, however brief. There are times when I feel consumed by cancer and chemo’s side effects, and I hate this. However, through no fault of their own, others don’t often understand. They assume that because I am at work, I am fine. They assume because I have had my last chemo treatment I am fine. They will ask how I am. Sometimes I say I’m fine, but when I go, they express surprise “going already, are you okay?”; sometimes I tell the truth – actually I’m feeling pretty rough, but I just want to try to get a few hours’ work in – only to be met with “but you’re looking so healthy”. What do you answer to that?

I have updated everyone on the advice I have been given by my oncology team, how long to avoid the risk of infection, roughly how long it might take to return to base level normal etc. I have tried to explain how my last chemo really floored me (what part of cumulative are you not understanding). Of course being in the middle of my neutrophil low, doesn’t help my mood and I am depressed and irritable. I know however that this will change, my blood count will increase, my mood will improve and slowly I will start to recover from the side effects.

And still, I feel I have to make that bit more effort, I ignore the signs my body is giving me (stop, take a break, rest) and think I can do this. And of course I pay for it afterwards. Over the course of my chemo I have struggled to get the balance right, and still I have not learned to do this. I want so much more of myself. I know in time it will happen, but, in the meantime, oh, the frustration!!

Six of six.  I can hardly believe it.

T dropped me off at the hospital in the morning, and when I checked in the receptionist smiled and said “it’s your last chemo!”.  Yay!  My nurse greeted me with “it’s your last chemo!”.  Yay!  I just had 7 hours to get through then I could go home.  K, H and M sent me good luck messages for my last treatment.

All went as normal through the day, and my last bag of meds went in.  I knew then I just had a 3-minute flush through and I’d leave the hospital.  At last, I could hardly believe I’d got to this point.  The nurse set up the flush through and almost immediately I got the most terrible pains in my hand and up my arm.  I called her back, fully expecting her to say, oh, it’s okay, and to make a minor tweak and things would be fine.  But instead she got a look of panic on her face.  She switched off the machine, took the drip bag and tubes to the floor and made me hang my arm down.  She asked more questions and examined me and then called another nurse.  More questions, more examination and then she put a needle in the canula and started drawing out fluid from my arm.  I was slightly in shock, and so doped up from the meds that I just watched blankly.  After a while they agreed they’d need to call the consultant.  He came over and further questions and examination followed.  He said I’d need to stay a while longer under observation.  In the meantime T arrived, having expected me to be waiting outside.  “There’s a slight delay” I told him. It turns out I had a collapsed vein.

Unfortunately this last minute turn of events completely took away any elation I would have had at finishing chemo.  All I could think of was thank heavens this happened with the final flush through and not with the meds. 

Finally the consultant agreed I could go home, but had to monitor myself for any changes etc. and so we left the hospital.

Sometimes with chemo side effects it is difficult not to get paranoid, and find the balance between what really needs attention or what might just need further monitoring.  Over the course of treatment I became a bit more relaxed about some of the issues, but remained nervous about others. Needing to call the Accute Oncology Services was a stress in itself as, through no fault of their own, they were so over-run and it was hard not to feel you shouldn’t be taking up their time.

So my final chemo is done, but the story is not over.  It has been a crazy eight months from the time I first went to my GP to this point.  Due to a combination of shock, medication and side effects, time took on a different aspect.  I found it hard to know which day it was, weekdays and weekends all flowed into each other.  Eight months – where did they go.  I can pretty much write off the rest of this year as Dr D has told me to allow a minimum of 6 months for all the effects to wear off before I return to my base level of normal which leaves me with my chronic pain.

My experience is, simply that, mine alone.  What anyone else may experience over this process could be similar or completely different.  Even if we have the same stage, grade and cell type cancer and the same chemo dose and drugs, our experience could be different.  It has been an education for me, in terms of learning about cancer, my body, what I can (and can’t) survive and cope with, other people’s knowledge (and lack of) and behaviour.   I have documented my experience as a therapy for myself as there is only so much you can dump on other people, and one can only go for so long saying “it’s not too bad” or “yes, thanks, I’m good” before you have to acknowledge no, it’s bloody awful.  I am fully aware that many people have a far worse experience of treatment than mine, and many have a far better experience.  It is what it is.  I am in awe of those that have survived in the past, the progress with research and increased knowledge has made treatments far more sophisticated and targeted, the knowledge of different cancers has helped treatment. Things that weren’t known then, and weren’t possible years ago.  How much more difficult it was for patients then.

I have tried at times to see the funny side (dark humour mostly, because let’s be honest, not much is funny) of this process.  But in all that there have been some desperate, horrible lows, both physical and mental.

People say things with the best intentions and it is difficult not to be frustrated at times.  Ultimately I believe unless you have gone through the process yourself, you can never fully understand.  It is important not to assume, not to be patronising, it is important not to treat the person like a total idiot, it is important to acknowledge – not deny – what is going on with someone.  If you truly mean it, offer support and be there for it, don’t just say “I’m here for you” and walk away because that is not helpful or supportive.  Don’t change who you are – have normal conversations, the ups and downs, be yourself.  It is so hard to have bits of “normal” during this crazy time, and if friends won’t talk to you other than to ask how you are, it makes any conversation difficult.

Those who love you are going through a different part of the same battle with you.  They can be easily forgotten in the process.  Hold on to those who love you, they are your lifeline. Don’t forget to stop, and breathe.