Where the FEC has my hair gone?!

The time for FEC (the type of chemo I was having) number two was upon me before I knew it.  I had an appointment with the oncologist the week beforehand.  She asked me how the first FEC had been for me and tapped  some notes into her computer as I relayed the story of my terrible ordeal. (I may have hammed it up slightly, but I was determined to get me some better drugs!)

She was great, this doctor (and continues to be great.  In fact she is rapidly becoming my favourite person in the world!)  She seemed to think that it wasn’t the steroids that had caused me the terrible agitation, but the metoclopramide.  And it turns out she was correct.  She wrote me a long list of prescription drugs to collect from the pharmacy, including the Rolls Royce of anti-sickness drugs – Emend.  They don't give it out first time round because its very expensive and not everyone needs it.  You have to earn your stripes so to speak.

I had a blood test the same day to check red and white blood cell levels.  They will only go ahead with the next chemo if the levels have reached a certain point.  I got the results back before I left the hospital and my neutrophils were too low.  0.5 when they need to be at least 1.5.  The doctor didn’t seem too concerned, she just said to go home and rest up for the weekend.  She was confident they would have increased by the time Tuesday and my next ‘dunking’ was due.  It did mean that I would need another blood test on the day.

Will had to fly to Kuwait that weekend for a job and would be away for the next treatment, so my lovely Mum came down from Lincolnshire to play nurse and see me through until Will returned. 

My hair was now beginning to shed rapidly.  I had it in my head that I wanted Will to shave it all off once it starting falling out in large clumps, but Will had now gone away for five days!  Could I hang on until he got back?

I told Mum that she might need to do the big shave instead and the look on her face told me that she’d really rather not!  By this stage I had decided I could no longer afford to wash my hair as too much was falling out and I was worried about blocking the drains.  I started wearing a head scarf in a vain attempt to hold the hair in but also to cover up the fact that it was starting to look very lank and thin.

You’ll be pleased to hear that I made it though.  I hung it out until Will got back and it was the first job on his list.  It was driving me nuts by this stage.  My head was itchy and sore and I was finding hair absolutely everywhere.  From reading other chemo victim’s accounts of losing their hair, most of them felt the same as me at this stage.  They just want to get rid of it.  I didn’t feel particularly emotional about it, it was just a relief in the end. 

So this was what my hair looked like just prior to shaving it off.  Still plenty there but way thinner than it used to be.  This was taken two days post FEC number 2.  Note the steroid induced red flush of the cheeks, very attractive!

Post shave with attractive bald patches

We did a closer shave in the end as it was more comfortable and I wasn't digging the bald patch look

And this is my mate 'Lou' the wig.  Looks ok but is not really very comfortable so only comes out for special occasions.  Sainsbury's isn't what I call a special occasion, I was just trying it out at this point!

                                                             

By this stage I’d had chemo number two.  Mum came with me to hold my hand.  When we arrived at the chemo unit I was asked to pick a seat and chose one next to the window.  We settled ourselves down and waited for my drugs to arrive and to my horror, the woman opposite who was all hooked up to her chemo, started vomiting.  Now obviously I felt bad for her, but I was feeling pretty nervous myself about what was to come knowing how bad I’d felt last time, and I really couldn’t cope with the sight and sound of someone else up-chucking at this moment in time.  I couldn’t even offer her a sympathetic smile.  I was just desperate to get away. 

Thankfully, I’d noticed that my reclining chair was not reclining.  This would never do!  Mum and I did the very British thing of tactfully removing ourselves from the situation by making a big show of the fact that the chair was faulty and that I should probably move.  We rapidly scuttled off and re-situated ourselves away from the barfing stranger.  

The rest of the visit went very smoothly.  I had a very efficient nurse who got the cannula in first time with no bother at all (I still had my arm dunked in a bucket of warm water) and within a couple of hours we were on the train back home.  I made sure I had dinner earlier this time so that I could at least get some food down me before I started to feel sick.  I had a small meal and it went down ok.  So far, so good. 

I started to feel nauseous about the same time as last time but, fingers crossed, no vomiting as yet.  The evening passed uneventfully.   I woke in the middle of the night feeling not quite right but a ginger biscuit sorted me out and when I woke in the morning to my huge relief, I felt ok.  A little bit ‘sicky’ but nothing that a ginger snap couldn’t solve.  There was no feeling of a wet blanket on my head and no fuzzy vision.  I didn’t want to speak too soon but maybe I was going to get away with it this time?

As the days went by it really did seem like I was going to get away with it.  Emend, I LOVE YOU!  What a difference it had made.  And no metoclopramide either so I didn’t get that horrific agitation and restlessness.  I still felt pretty wiped out but I could function and best of all, I had an appetite.  Hoorah!  I do love food, so I find not wanting to eat a bit depressing.   My main issue this time seemed to be heartburn, something I’ve never suffered from before.   It was pretty constant and no amount of Rennie would shift it.  In the end I contacted my GP who prescribed some Omeprezole and a gallon of Gaviscon and this combo gave me some relief.

After about a week I decided I was well enough to tackle Westfield shopping centre.  Why I thought this I really don't know, and quite why I wanted to go there was also a mystery.  Clearly my brain was not functioning as well as I thought.  It was a Tuesday so I thought it would be quiet, this was my first mistake.  It was rammed!  Why were these people not at work?  I had a reasonably valid excuse for not being at work, but what about all these hundreds of others?

My second mistake was making Primark my first port of call.  I wanted to buy some cheap hats and scarves so it seemed the sensible option to me.  As soon as I got in there though I began to feel claustrophobic and a bit sick.  Not sick as in nauseous, just sick at the mad frenzy of buying 'shit' that was going on around me.  It was like a mad trolley dash in there.  I made a hasty exit and then wondered what to do next, whilst being knocked about like a pinball by the hundreds of shoppers milling around. 

Body Shop looked nice and peaceful and I wanted to buy some eyebrow make-up in preparation for losing my own so I ducked in there and had a sneaky sit down at the make up counter as I started to feel a bit odd all of a sudden.  I was clearly going to have to abandon this whole idea.  But I still had to get home.  A tea and cake in Starbucks gave me the energy I needed to face the journey home on the DLR. 

Day nine seemed to be the magic day when I woke feeling properly me.  My walking went from old lady speed to my normal pace.  On my final weekend, before they hit me with the third and final FEC, I even managed a 12 mile return cycle ride to Brixton, where Will and I had a wander round the markets.  I really hadn’t expected to be able to achieve that so I was well chuffed to be feeling so well.

                                                                                                                                                          

Setting off on the chemo train

I have a feeling this post may be a long one.  You might want to grab yourself a cup of tea and a digestive or two before you board the train with me.  I’ll do my best to make it entertaining, but under the circumstances…...

I was given an appointment to have a chat with a chemo nurse the day before my first treatment.  This was helpful not only in terms of understanding what to expect, but also just to be in the cancer day unit and see what it was all about.  I still couldn’t get my head around the fact that I was here in the first place! 

I was nervous as I waited at reception with Will, expecting to walk in there and be thoroughly depressed and to be honest, downright scared.  I imagined it would have a very sombre air with sick looking people lying around looking, well…. sick. 

The reality was surprisingly different.  It actually appeared quite a cheerful place.  Nurses buzzed around being nursey and upbeat whilst patients relaxed in reclining armchairs, most with a companion by their side.  People were chatting, eating lunch, some were listening to music.  Others cruised around attached to a drip stand.  There was a tea trolley being pushed around and a general, soft hubbub of activity.

I felt myself relax immediately.  These people didn’t look like they were about to die.  I wouldn’t say they were necessarily loving the experience but they were making the most of it.  They were here to do what they needed to do, and then get out and on with their lives.

We met with a male chemo nurse who ran through the general gist of things including the long and seemingly never ending list of side-effects that I may or may not suffer.  Everyone reacts differently it seems so they really use the first session as a bit of a trial run to see how it’s going to go.  It seemed the only sure side effect was going to be hair loss.  Fortunately I wasn’t hugely bothered about this.  It would grow back and it was time for a change of style anyway, I’d had long hair for a good few years now!

The one thing the nurse did stress was to keep an eye on my temperature.  I was given a thermometer and told that if it reached 38 degrees centigrade, I should get myself straight to hospital.  Chemo affects bone marrow and reduces its production of blood cells so you are at quite high risk of infection whilst going through treatment.  The message was clear here – Don’t try to tough it out, seek medical help.

My main worry at the moment was my veins.  I’m a bit queasy about veins and this was made worse by the fact that I’d had problems since my surgery with a vein damaged by catheterisation which had been aching and now had a fibrous lump in it.  And this was in my good, left arm.  Knowing that they could no longer use my right arm for access due to risk of lymphedema made me even more concerned.

I asked about the possibility of having a PICC line (semi-permanent port which they can insert to save them having to catheterise every time), but he checked out my veins and pronounced them useable.  It seems they’ll only insert a PICC if absolutely necessary.  I’m not sure if this is due to cost?  Could be?  PICCS do have their drawbacks in that they can be a possible route of infection but I did like the idea of not having to be stabbed every time. 

As we left the unit that day the nurse said to me, ‘hopefully it will all be an anti-climax for you’.  I remember thinking, ‘that sounds a bit dull’.  Err….hello! Crazy lady.  Why would you not wish for an anti-climax in this situation?  48 hours later I would be cursing myself for such thoughts. 

I was feeling reasonably relaxed when we arrived back the next day.  I had a lovely Irish nurse come and give me a number of different tablets to take including steroids to combat the sickness and give me a bit of a high to carry me through the first few tough days.  She then had a look at my veins and decided they could do with some encouragement so my arm was stuck in a bowl of warm water for five minutes.  Very high tech.  She then had a go at inserting the catheter, stuffed it up the first time, but got it in the second time.  This didn’t bode well.  Chemo number one and they were already having problems. 

The first lot of drugs had to be given via syringe rather than drip pump.  Scarily, the reason for this is that they can do serious damage to tissue if they leak out of the vein so the nurse has to be able to monitor it constantly.  Two different drugs were administered this way from a total of 6 syringes.  This took about half an hour which passed pretty quickly as we chatted about her life in London.  I was then attached to the drip pump for the third and final poison (I hadn’t realised there were so many different types of chemo drugs).  This didn’t seem so bad at all.

My only issue at the end of it all was the desperate need to pee!  I’d been drinking gallons of water in a vain attempt to flush the shit through so what with that plus copious amounts of fluids being pumped into my veins, my bladder was fit to burst by the end of it all.  I was finally unhooked and made a mad dash for the toilet.  My pee had already taken on the pink hue of the drugs I’d been given.

Just a few tablets to take when I got home!

It was 4 o’clock by the time we left and as the nurse had said, I felt exactly the same leaving the hospital as I had coming in.  That was quite weird in itself.  I’d had so many drugs pumped into me in the last few hours it felt strange to feel no effects.  Will and I caught the train home.  It was a rainy afternoon so I cracked open the first of many jigsaws I’d stocked up on for these very occasions, and waited to see what would happen. 

Will cooked some dinner whilst I sat on the sofa trying to ignore the signs that the nausea was beginning.  By the time he put dinner in front of me I could ignore it no longer.  Yep, definitely feeling sick.  I tried a few mouthfuls.  Not happening.  And then the vomiting began, very suddenly and very violently, as only vomiting can. 

The relief was that I felt better afterwards.  Ok, maybe this wasn’t going to be so bad. 

But an hour later and it was happening again.  This wasn’t good.  The nurse had told me to expect a bit of nausea, but that I shouldn’t actually be physically sick.  Will called the chemo hotline.  A doctor was paged and called back within 2 minutes.  Will was told to get me to A&E if I vomited again as it would start a whole world of trouble if I became dehydrated.  Oh man, this was starting to feel a bit miserable. 

I took myself off to bed and thankfully crashed out.  I was aware of being awake several times in the night but for the most part slept through.  What a relief.  No hospital visit required.  I woke feeling weird and definitely nauseous.  I tried to eat but nothing much would go down.  I think I managed half a banana and a piece of toast all day.  Will went to work, satisfied that I was out of the danger zone and I sat staring into space most of the day. 

I forced myself to get outside for some fresh air and made it to the nearest bench overlooking the river where I sat, feeling a bit like an alien being.  I was sure I must have a visible toxic haze around me and was surprised when people didn’t feel the need to give me a wide berth.  My head felt heavy and very much like someone had placed a big, wet, heavy blanket on it.   

That day and the next passed slowly, and nothing much changed.  The nausea continued but at least I wasn’t being sick.  I moved from bed to sofa for a change of scene but couldn’t concentrate on anything.  Reading was a no go, even watching TV could not hold my attention.  Knitting was really the only thing that passed the time.  The days lasted an eternity! 

The hat I knitted! I'm amazed it turned out as well as it did.

On day three I woke up feeling very agitated.  I’d been hallucinating through the early hours of the morning and when I got out of bed, things definitely weren’t right.  I’d sit for a second and then have to get up again.  I moved from kitchen, to sofa, to bed and back to sofa, all in the space of a few minutes.  What was happening?  It was like I had a million ants in my pants and I thought I was going mental.  Was it the steroids?  My morning dose sat on the kitchen table but I couldn’t bring myself to take them.  I read the side effects leaflet for the other anti-sickness tabs I was taking.  Hallucinations and agitation were mentioned.  Ok, I won’t take those then, but I will take the steroids because I feel sick. 

When I found myself on all fours on the sofa because I’d run out of positions to put myself in, I asked Will to call the hotline again as this was really not right.  Will explained my symptoms and it sounded like the doctor on the other end had heard it all before.  It was the steroids she said.  Shame, I’d just popped four of those!  Will mentioned the metoclopramide (anti-sickness) and she said I should definitely take those to quash the nausea

I found myself dusting (dusting, me??), just to keep moving, even though I was feeling sick and all I wanted to do was lie down.  I dragged will round the block a million times which we had to do at snails pace because I just didn’t have any energy, but I needed to keep moving.  All very bizarre and downright uncomfortable.  I was relieved to know that my course of steroids was finished for this treatment.  We’d have to work out something different for the next one as I couldn’t go through this again.  Thankfully, the agitation slowly eased and the ants disappeared but it took a good few days. .  (I later found out that I was given the wrong advice on the phone, and it was the metoclop giving me the jitters).

Every morning I’d wake up and pray that this would be the day I’d turn the corner but although I did see small signs of improvement, I still felt pretty ropey and fragile.  My vision was blurred and I found it hard to hold a conversation, it was like my brain had gone on a go slow.  Words just wouldn’t form properly.   How was I going to get through five more of these?  It was a very depressing thought.

It was day 9 when I first woke with no nausea.   Hallelujah!  The hangover was gone!  I went into town that day for a wig fitting and my old college mate Joyce came with me for a laugh.  Will also came along, I think to make sure Joyce didn’t talk me into getting anything too outrageous! 

We were directed to the patient appliances department of the hospital.  How lovely.  Were the wigs going to be stacked on the shelf next to the toilet seat extensions and zimmer frames?  It didn’t strike me with great confidence that I was going to find a wig that I was happy to be seen out and about in I must say, but it was free so I couldn’t complain.  And I was pleasantly surprised when I saw the selection on offer.   All three of us tried on a variety of styles (obviously) and I finally selected a ‘Lou’, a shaggy type bob in a shade very similar to my own hair colour.  I wasn’t brave enough to try anything too drastically different.  We all agreed it looked pretty natural.  But I still had a full head of hair at this point, why was I getting a wig? Weird!!!

From that day on I just felt better and better until by the end of week three, I was pretty much back to normal and ready to take it on again.  If it was going to be 1 horrible week out of 3, I felt happy that I could deal with that.  Bring it on!  I reaslised that that’s why the Chemo ward had seemed so buoyant, the patients are feeling the best they have in a few weeks!

A terrible photo but its part of my hair diary. 

This was 16 days post first chemo, still very much there