The lost days – Friday, the lost weekend and beyond……..

Sleep was even more elusive on Thursday night.  My arm and the IV line were really quite tender and when I did sleep I was woken by discomfort in the IV site.  That triggered more scary thoughts.  I got myself in a particular tizzy about the vein swelling or clotting and imagined that my arm was really swollen.  Then I had those really irrational “I can’t phone the Dr in the middle of the night” thoughts and that led to me wondering if I should try and remove the IV line myself if I got really worried about and what stage would it need to be to warrant me removing it.  And of course total reluctance because that would mean finding another vein in the morning.  All totally irrational stuff, typical for the middle of the night.  Switching on the light and looking at the arm provided a bit of relief.  It was not visibly swollen and once my thoughts became more lucid I realised that it was not as painful as I thought it was, although it must have been bugging me to wake me up.

Finally dawn came, and before long it was time to return to the clinic.  I was again slotted in before the start of the regular day, adding further to the workloads and hours of the Dr and her PA.

The Dr told me that she had had a good discussion with  Dr W2 the previous evening and again between them, they had identified the treatment path.  My temperature was lower, though it had raised again the previous evening so I was along way from 48 hours of being afebrile.

Then it was scary time again.  Time to see if the vein would accommodate the antibiotic.  It was by now terribly tender so I half hoped it would not work, although the thought of another needle seeking out another vein in the leg still grossed me out, as well as scaring me.  My arm was again unwrapped and the Dr started to have a look at the site.  She was concerned that it was really bruising but there is no surprise in that.  With gentle coaxing she was able to flush and clear the entry point and with my eyes tightly shut, willing more than anything, I waited to see if the infusion would go in.  Can you believe – it did!!  That amazing, exhausted vein was coaxed and persuaded to allow another dose into my blood stream.  This time was without doubt the most painful.  The bruising around the site made it incredibly tender, and the fact that the fluid has to go in “in a slow push” meant that every second was really tough.  Finally, finally it was in and the infusion over.  The needle could be withdrawn, with great relief.

The final irony of this vein was that when the needle was taken out, after clotting so quickly each time before the infusion, it refused to clot and close up!!  This meant it required quite a bit of pressure to get it to stop bleeding.   Not easy to be cooperative when any pressure results in the arm retreating in the opposite direction!

The relief was enormous.  Now I could move onto oral antibiotics exclusively.  This meant a change from the antibiotics I was taking and starting monsterbiotics.  This was in the form of 2 types of very strong antibiotics particularly for people with suppressed or compromised immune systems.

It was nearly 9 am when all was finished and we left the clinic, exhausted.  My grand finale had been to walk back into the waiting room, so relieved at the removal of the needle and prospect of no more vein hunting – that I totally forgot that my hat was in my hand and not on my head!  Luckily, there was only one other person there and, bless him, he didn’t even react to the sight of a bald woman tottering towards him!  Clutching my monster pills and with instructions in my head of what to do I could finally head home.

And so to bed.  I am not sure what else happened on Friday, the third lost day, except for spending most of it sleeping!

The lost weekend and beyond – Saturday/Sunday……….. to today

To be honest, the last days have probably been the most difficult so far of this breast cancer road.  I feel weakened, nauseous (monsterbiotics?), constantly exhausted and the cough of the pneumonia has started to take hold.  I can’t stand for long, nor walk for any distance and of course my beloved swimming is out of the question for now.  I am sleeping for hours, and most of the rest of the time I spend lying down.  While my fever is much lower and within acceptable limits, my temperature is more raised than normal, adding to anxiety.  I just want to feel better and heave energy again.

I am not even thinking ahead to Sunday.  We will travel as originally planned tomorrow to Bangkok and see Dr W2 on Sunday.  It is unusual and strange, but chemo 8 is just not on my mind.  I have to get over this hurdle first and Rocky might be ready but I am not sure if will get the all clear for the next battering.

The Lost Days – Thursday

It is not easy to sleep with two arms which are awkward and not comfortable.  It is also difficult as typically in the middle of the night, the scary thoughts come back and all sorts of scenarios play out, including some pretty scary diagnoses.  It is also difficult to sleep with the thought of another scary infusion session to start the day and the possibility of another vein hunt.

So I was still pretty tired and anxious when the time came to head back to the clinic on Thursday and face the next stage.

My appointment was schedule for before the first patient – partly to get the next infusion in promptly and partly so minimise my contact with other patients in the waiting room.

The Dr and I were both fairly quiet as the arm was unwrapped and the IV area examined.  I was willing the line to be open and was very relieved with the Dr said she had been able to flush it.  Again though, it closed in the few moments between preparation and infusion. I lay there, eyes closed, willing it to free, imagining the blood coursing and flowing.  I know it sounds crazy but it is hardly going to do any harm, is it?  Desperate times call for any desperate measure.

Finally it worked and the infusion slowly fed in and my arm all wrapped up again.  My chest and breathing were also checked and I found it a little uncomfortable to inhale deeply, my breath catching a little and my chest feeling a little irritated.   It was time to head back to the lab after checking four or five times what time I was to return in the afternoon.  My brain is having problems retaining details and 3 o’clock was a particularly hard one to grasp.

This was my first visit to the lab when I knew that they were not going to stick a needle in me!  Although I didn’t want to tempt fate, I could not imagine that an X Ray could possibly require needles!  The Lab reception staff met me with the greeting of “Oh Complete Blood Count” and were surprised when I handed them a different referral form.

With Twang Arm in charge and right arm immobilised and now pretty tender and sore it was another challenge getting prepared for the X Ray.  The Radiographer had plenty of opportunity to puzzle over my scar and before long was asking questions.  “Was it a biopsy?”  (A biopsy???????  A scar and lesion that big????), what was the diagnosis (err – all on the referral form) and treatment?  (also on the referral form) and which site was having the chemotherapy??  (try to explain systemic treatment as opposed to localised….).  So maybe I have learned quite a lot in this whole experience.  Glad I can share it!

After the X Ray and a short wait to make sure the image was clear enough to analyse I was free to head home – and I was well in need of a lie down and my morning nap.  Being unwell and the antibiotics were making me really tired, so the best thing is to spend the time horizontal.

I don’t remember much between then and time to head back for infusion 3, but that is probably because I was dreaming for most of the time. We dropped off at the Lab, picked up the X Ray and report and headed back to the clinic.  Red alert – there were children in the waiting room so I was ushered out of the clinic and asked to go and wait downstairs.  It is such a thoughtful and careful environment – the Dr and her PA think of everything and do not want me to run any added risks.  Another example of how extremely fortunate and well cared for I am.

Soon enough, the children had been seen, I was back in the clinic and handed over the huge envelope to the Dr.

She spent a few minutes looking at the images and report.

“I thought I heard a bit of a rattle”, she said!

I had no idea what that meant. She explained.  I was stunned to hear the word “pneumonia”.  Stunned and pretty scared.  However I was a quickly reassured by her analysis.  Pneumonia is treatable, and more importantly, treatable by the GP, although of course Dr W2 would be closely involved in the treatment path.  Additionally, it meant that this infection was not a complex or obscure (or difficult to treat) infection.  There are clear treatment protocols and guidelines for chemo patients with pneumonia, as well as the immense experience of my two wonderful Drs .

So that was the “good” news.   Now it was time to see if the IV line was going to cooperate enough for the next infusion. I could see the Dr looking at my legs again……..  The experience was almost identical the morning – it seemed to work, then clot, and finally with a lot of persuasion it finally allowed the infusion to run.  Again I closed my eyes and imagined everything running smoothly and the Dr said she was also willing it hard to work!

However we knew that the chances of the IV line lasting much longer were very slim.  The Dr said it would come out in the morning irrespective of whether it worked or not.  The fact that the leg would be used was unsaid, but very much on the minds of us both.

Again I was all wrapped up and headed home, arm throbbing and aching and feeling pretty awkward.

Time for a nap. And so to bed.

And that was pretty much what I remember of Thursday – the second lost day.