Monday, 30 December 2013

Better the devil you know

I've got a bit behind with my posts because of Christmas.  Hope everyone had a lovely one? Ours was pretty good under the circumstances but I've got to say that I'm glad its all over, sorry to be a bit bah humbug.  It inevitably buggered up hospital appointments and although getting out and about and catching up with people was great (probably a good distraction) it also wiped me out a bit.  Anyway, I'm not grumbling.  I don't like grumblers and I won't let cancer turn me into one.  No sir'ee. 

So getting back to my fourth chemo...,  Blimey, that was way back on the 20th of November, I have been a bit lax haven't I?!

By now the FEC was done with.  The next three chemo treatments would be a drug called Docetaxel.  I've decided Docetaxel is the sneaky member of the chemo clan, but more of that later. 

I was also to start Herceptin at this stage of the game.  This was the drug I would need to take every 3 weeks for the next year, and the one for which I had entered a clinical trial.  The first dose needed to be given on a different day to the chemo in case I had a reaction to either drug.  I also needed to be monitored for six hours post administration.  It can have an affect on your heart herceptin, although it seems to be very uncommon.

My appointment was for 10am and by 11.30 the Herceptin still hadn't arrived on the ward.  My Docetaxel was there, but I didn't need that until tomorrow!  It was going to be a long day.

Waiting patiently

Finally, the little bottle worked its way through the hospital system and I was taken off to a private room to drop my trousers (made a change from flashing my boobs!) and a gadget about the size of a mobile phone from the 1990's was stuck to my thigh.  One nurse was showing another how to use it as it is obviously still new on the street.  Not many of them have seen one as yet.  She pressed a button on the contraption and a split second later I felt a sharp sting as the needle went in.  And that was the discomfort over.  It took 5 minutes for the contents to be administered and the most painful part was peeling the sticky contraption off my thigh at the end.  All very easy.

I then had to sit for 6 hours in the chemo ward, whilst they made sure my heart didn't start doing weird things, or something like that.  I was sat on a different side of the ward to normal, with the chemo patients who have chemo drugs that take most of the day to administer rather than the 2 hours for breast cancer.  This meant I wasn't hanging out with the usual breast cancer patients, but with people who had other forms of cancer.  Most of them seemed to be suffering their second or third 'hit' of various forms of the disease.  But they were still a cheery bunch.  Quite incredible really.

I amused myself by chatting to fellow patients, reading, crocheting, facebooking.  Will brought some lunch in and sat with me for a few hours, disappeared off to buy a bicycle, as you do, and then came back.  Occasionally a nurse would wander past and ask if I was ok, but for the most part I was ignored.  They were busy with the patients who needed them.  5.30pm came round surprisingly quickly and I was given a quick blood pressure and temperature check and sent on my merry way. 

I was back again the following day for the Docetaxol.  I had been given steroids to start the day before as it is common for people to react to this drug as it is given, and the steroids help to stop this happening.  I had the usual problems getting a vein, the nurse hit a valve and I ended up with a massive bruise, and there were more tears.  So not like me!  But I guess I can forgive myself for being not like me at the moment.  Soon a cannula was successfully in and yet again, the nurses were right, this drug was much easier on the veins and once it was going in I felt no discomfort.  It only took an hour this time and before I knew it I was done and on my way home.  Another one done and only two more to go.

I took it easy for the rest of the day, but felt no ill effects at all.  The steroids kept me awake for most of the night, and the following few nights.  But apart from that (and the usual steroid flushed red face that I get) I felt fine.  This was weird.

I gather Docetaxel is especially good at wiping out white blood cells so on day three I had to start Filgrastim injections which boost production of neutrophils.  I had to do this daily for the next 8 days.  You can get a district nurse in to do this for you but I decided I'd rather handle it myself  (it's only self administered sub-cut injections into my belly) than have to wait in for somebody to turn up.  It was pretty simple to do and, to begin with, not very painful.  As the days went on though, my belly started to get quite tender with all the stabbing and I was very relieved to finish them.  It was manageable but not particularly pleasant.

The injections can give you bone pain (something to do with the bone marrow working overtime I think) and sure enough this started pretty much immediately.  Most of the time it was relieved by taking paracetomol.  I did have one moment in the middle of the night when my whole pelvis was spasming and I didn't know quite what to do with myself (again normal apparently).  Others have likened it to labour pain.  Not having gone through labour I can't comment, but it was pretty severe for a good few minutes.  Luckily, I've not had a repeat of this episode. 

I had repeated hot flushes through the night from day one of Docetaxel, but apart from that, the bone aches and the steroid induced sleeplessness, I was feeling pretty ok.  When was this chemo going to hit?  Was it going to hit? 

It lulled me into a false sense of security.   Instead of getting better by day 8/9, these were the days when I suddenly felt flattened.  I had no energy and felt a bit like I'd been hit by a truck.  I became emotional and just generally 'unwell'.  My nose was constantly bleeding, my throat was sore and my lips and mouth felt burnt.  And the shitty feeling just didn't seem to want to lift.  I finally started to come back around about 4 or 5 days before I was due the next dunking.  I was beginning to think I preferred the FEC.  At least there was a feeling of gradually getting better on that.  Oh well, this was the new regime I guess. 

The filgrastim injections did their work and my neutrophils were at an acceptable level when I had my blood test prior to the second round of 'tax' (Docetaxel) on 10 December. And it pretty much followed the same pattern as the first.  I was well enough on day 3 to go into London and attend a medal ceremony for my sister Sas for her recent tour to Afghanistan with the RAF.  It was great to be there for her, along with another sister Phil and my Mum.

I even worked up the energy to go to the Blue Cross Christmas party, a vet hospital where I used to work as a nurse.  I haven't worked there for a year mind you but they are a great bunch and were very welcoming and seemed genuinely pleased to see me there.  Thanks lovely people, it was fantastic to see you all again (not sure about those hideous Chrissie jumpers though!).

The following week was busy as yet another sister (I have many) who lives overseas, came to the UK for a weeks break before xmas, along with my niece Faye. 

We managed to go down together to see my Dad with whom I am doing synchronised chemo.  He is suffering his third bout of lymphoma and was just starting out on yet more chemo.  He's a trooper though and at the age of 82 seems to be taking it all in his stride.  I hope I'm half as strong as he is at that age. 

We had an early Christmas with my family before Fiona and Faye headed back to Bahrain.  Everyone made the effort to gather in one place from their different corners of the country/world and we had a good fun evening together.  After 6 days away Will and I headed home for a much needed sit down on the sofa.  I had suddenly hit the wall towards the end there and the tears came out of nowhere once again.  It was comforting to hear from the oncologist a few days later that this is a well known side effect of low white blood cells - uncontrollable tears! 

I rested up in time to head down to Folkestone to spend Xmas day with Will's side of the family.  We had a lovely day, ate bucket loads of food, played games, exchanged presents and I even managed to celebrate with a few glasses of wine.  Happy days!  Thank you Bryant family.

Xmas day

Will and I walked down to the beach on Boxing Day where they hold an annual dip in the sea for charity.  We spectated only, I was far from tempted.  Will was mildly tempted as he was sitting in the warmth eating Christmas lunch, but soon changed his mind when he stepped outside the front door the following day!  It was a beautiful day though and a good excuse to get out for some fresh air.

The eyebrows and eyelashes are hanging on in there, just. But I was very happy to receive some eyebrow make up for Xmas.  They are beginning to need a little help.  The hair on my head keeps trying to grow but I'm still very much a baldy, with a bit of fuzz.  My periods have finally stopped this month.  I wonder if I'll ever have another?  I'm thinking probably not.  Not sure how I feel about that.  Nothing much at the moment. 

Shockingly I had a weigh in today and have put on 4 kilos!  I think its a combo of the steroids and the fact that my taste is not really there at the moment and I seem to be missing the 'I'm full now and starting to feel a bit sick' sensation.  Plus I'm a bit bored and eating is fun.  My face is taking on a nice football shape and the jeans are becoming downright uncomfortable.  Round and bald is not a good look and I had to delete a good few xmas photos so that the wider public never comes across them.

So my next chemo on 31st December will be the final one!  I am very happy about this.  Then its off for a little sunshine break in the Canary Islands before starting out on Radiotherapy.  I really feel like I'm getting somewhere.

Monday, 9 December 2013

The lifeline that is cyber world

Sharing of information has never been as easy as it is these days and is something I am very grateful for in my current situation. Going through breast cancer treatment before the advent of the www would have been a much lonelier and far scarier journey for me, and I think I can speak the same for many thousands of other women out there too.

Now you do have to be a bit selective about what you read and don't read. There are some loonies out there as we all know and also a lot of very complicated and in depth medical information and statistics that could have you reaching for the razor blades if you're not careful.

There were two main websites that I was directed towards by my friendly breast cancer care nurses -
Macmillan Cancer and Breast Cancer Care. These two sites offer a wide range of information on all aspects of living with and treating cancer in an easy to understand format and without being dramatic. 

It was through these websites that I came across two of the most helpful links which have been a lifeline for me. The first was the Young Breast Cancer Network which is a private Facebook page for women under the age of 47 going through breast cancer treatment.   It provides a forum for women to chat about whatever is bothering them, compare notes, get information about treatments, have a good old rant, or more importantly, just a laugh. It's so comforting to know there are others out there having the same issues and to know that we are really not alone.

I contacted a lady via this network who had opted for the same surgery as me, but had had it about six weeks prior. I can't tell you how great it was to chat online with her and get her viewpoint and experience of the procedure. We got to messaging fairly regularly and when I was in hospital and struggling with my recovery, she was just brilliant.  She offered tips, positivity, relayed her fantastic progress and generally made me realise that my discomfort and worries were all only temporary and that life would go on. It's difficult to relay here what that meant to me at the time without sounding like a weirdo, but believe me I will be eternally grateful. Thanks C, I know you will be reading this.

My lifeline through chemo treatment has been another Facebook page which I came across through Breast Cancer Care and is for women going through chemo at the same time.  There are around 38 of us on there who all started chemo in September.  Our ages range from late 20's to late 60's and some are going through treatment for the second or third time.  It is comforting to chat to them on a daily basis. We discuss side effects that would make your toes curl and talk about stuff that others just wouldn't understand, or be interested in. My cyber mates are an often rowdy and fun bunch of ladies who are able to lighten the mood when necessary, but offer support and compassion when one of us hits a low point.

We are hoping to meet up for real at the end of all this. We've been through too much together not to. Nothing can replace the support we all get from friends and family, but I think it's also very important to connect with people who totally get it because they have lived, or are living it.

I found a link on Twitter tonight to a study done on the benefits of blogging or online journaling in any form. The results showed that those patients who had written about their experiences through treatment showed fewer signs of depression and were able to maintain a more positive outlook.

I knew there was a good reason for my wittering on. Thanks to everyone for reading and encouraging me to keep blogging. I really appreciate it. Creating and writing this blog has been more helpful to me than I ever realised it would be.


Sunday, 24 November 2013

And the FEC can FEC off!

So my third and final FEC was on 29 October. I was getting to grips with this now and was pretty confident that it would go the same way as the previous one, as I had the fabulous Emend to help me through again. 

The actual infusion was pretty painful this time though. The chemo is taking its toll on my poor veins. I had a little melt down whilst the nurse was pushing yet more of the pink stuff through. I didn't want this anymore and my body (and mind) was starting to protest.  What to do though, I didn't really have much choice. I was assured that the next lot of chemo was easier on the veins so I just had to get through today and then things would improve.  Suck it up sister.

It was a relief when it was over. I was celebrating a milestone today - halfway through chemo!  THAT was a good feeling.  I celebrated in style, with a glass of water and a good sit down on the sofa. That made a nice change!!

Thankfully this FEC followed the same pattern as the last. I think I felt a bit more wiped out by it but I guess the effects are cumulative so it was not really surprising. I also started to feel a bit low at this point which I had been warned about. I was just getting a bit fed up with the whole ordeal to be honest. I wanted it to be over. No real surprises there!

This round of chemo coincided with a busy time for Will at work.  I didn't see much of him for about 10 days.  He would leave the house before I got up, and arrive back in the middle of the night.  But it kind of suited me, as I just wanted to sit quietly.  I'd get out everyday for a walk, usually up to greenwich where I would sit in a cafe looking, I'm sure, pretty vacant. A hot chocolate would bolster my energy for the walk back home. 

Eating seemed to help with the nausea and by day three or four my appetite was back with a vengeance. I guess that was the steroids talking. I got into the habit of having two breakfasts!

The heartburn was still a constant companion but didn't seem quite so bad this time. I'd been for an acupuncture session and the therapist, who was also a nutritionist, had advised me to try following a more alkaline diet. This meant cutting out grains and eating as many raw greens as possible. She said if I couldn't manage doing that full time, at least to try it on the three days around chemo. 
Breakfast was the challenge. I'm a porridge, toast and cereal girl. But I actually started to enjoy the change and began to start my days eating omelettes, avocados, spinach and cucumbers. I also got a taste for spelt pancakes (spelt is apparently less acidic than wheat?) and quinoa salads for lunch. As I say I think it helped a little with the heartburn, but it also just felt healthier and my digestion felt better for it. I haven't gone strictly grain free, but have cut down hugely. 
Loving the spelt pancakes

Day nine was again the magical day when the fog lifted and all was well with the world. As soon as I started to feel better, my mood lifted too and I was back on form.  I had a big day planned, so it was fortuitous that I was feeling so well. 

First off I had an appointment for a wig trim, back at the patient appliances dept of the hospital of course.  A hairdresser visits once a month to do this and she shortened the fringe and thinned it all out a bit. It looked much better. 
After that I had a Headstrong session which is organised by Breast Cancer Care. I had two ladies show me and let me try on a wide range of head coverings including hats, scarves and bandannas.  They also demonstrated a few different ways of tying scarves.  They were lovely and it was a pretty useful session.  I think I'm definitely more of a scarf person than a wig person.  The wig doesn't feel like me.  I still get freaked out when I catch myself in the mirror with nothing on my head.  Who is that cancer patient staring back at me?  It ain't me?  My eyebrows and eyelashes are hanging on so far, but thinning by the day.  That is not going to be a good look. 

Later that afternoon I met up with an old and very good friend Mel who was in London to attend a Children in Need dinner.  We had a catch up over coffee and then a wander round Oxford Street.  We found ourselves in John Lewis and managed to wangle ourselves a makeover at the Bobbie Brown counter.  Now Mel is the last person I would ever have imagined myself undertaking this type of activity with.  She's more of a 'chuck your sports gear on and go for a bike ride/run/swim' type of person.  Neither of us is particularly make-up inclined but she fancied getting dolled up for her evening ahead, and I just fancied looking like a human being.  The lady who looked after us was very patient with our cluelessness and did her best not to make us feel like a couple of no hopers. 

The following week I had to head back to the hospital for some tests on my heart - echo-cardiogram, ECG and chest x-ray.  The reason for these is that I have entered a clinical trial for the sub-cutaneous form of the drug Herceptin.  The NHS has just started to roll  out this method of administration of the drug, as opposed to the intra-venous version used up until now.  But it is not, as yet widely available.  I was pretty keen to avoid the IV route so was very happy to be offered the clinical trial which guaranteed me the sub-cut version. 

The clinical trial is basically to test out side-effects from the administration method.  It is given via a contraption that is strapped to your thigh, which punches a needle in and slowly administers the dose over about five minutes.  Being in the trial does mean having a few extra tests along the way and a bit more follow up afterwards, but I think this is a small price to pay for the convenience (a five minute, pretty painless injection compared to a half hour IV infusion) and also has the benefit of helping others in the future.  The idea is that patients will be able to administer the drug themselves at home.  Considering it needs to be given every three weeks, and some people can be on it for life, I think this will make a huge difference to some people's lives.  But I won't lie, I was really doing this for me.  Leave my veins alone!!!  No PICC lines, no portacaths, no more cannulas.  Thank you. 

Later in the week it was back to the oncologist for my three weekly meet to prepare for chemo number four which would be a different kettle of fish altogether.  I would be starting the Docetaxel.  And good riddance to FEC is all I can say!  My current favourite lady in the whole world, Oncy as I will from now on call her, prepared me for what was to come.  Little to no nausea with this one - YAY! But aching muscles and joints was the order of the day - BOO!  Although, as usual, there is no way of telling how much I will be affected.  Some she said, get very little pain.  Some can cope with just taking paracetomol to relieve the discomfort.  But for others it can be a morphine type pain!  Happy days.  She dispensed panadol, ibuprofen and tramadol to cover me for what I might be hit with.  Also, your finger and toe nails can be affected and slowly peel off.  Well, how delightful!  Can't wait for that. 

We ran the idea past Oncy of going away on a short break in between chemo and radiotherapy.  She said this was a great idea.  We are thinking southern Europe, not too far away but hopefully enough sun to warm the bones.  So that will hopefully be at the end of January. 

Will also wanted to get her opinion on a little idea we've been developing for the end of the treatment (apart from the bloody Herceptin obviously which will not be done with until this time next year).  We are hoping to go off on a little bicycle trip, heading off from our front door in about April and heading to the warmer climes of, perhaps Istanbul?  Oncy's face was a picture!  She clearly thought we were crazy.  But we explained further and she began to warm to the idea.  Obviously, I need to be back here every three weeks for the Herceptin, so the idea is to plan our route via airports along the way so that we can lock the bikes up somewhere, fly back, get the needle, sit on the sofa and enjoy some home comforts for a couple of days, or even weeks if we feel like it and then carry on on our merry way. 

If it happens, it happens.  It gives both of us something to look forward to and I think it will be a great way of sticking my finger up to cancer, getting my body back and feeling like me again.  Travel insurance might be a bit on the hefty side, but I'm avoiding looking into that at the moment because I don't want it to put me off!

After my appointment I had a lovely catch up and lunch with mates from a dim and distant past at college, Lu and Claire.  Joycee and Nic you were missed but that's your fault for living too far from where the action is man.  If there is one bonus to all this cancer business, its having the time to spend with friends who have been long absent in the past, mainly due to geography but also due to lack of time.  I could get used to this not-working business I reckon. 

The other thing I do to pass time when there's no one free for coffee
(these are for a baby by the way, not for me!)


Tuesday, 19 November 2013

A 'big-up' for the NHS

Griping about the NHS seems to be a very British thing to do, much like moaning about the weather is.  The woman who was in the hospital bed next to me when I had surgery responded to my comment on the weather by saying, ‘oh but we haven’t really had a summer this year have we’.  Now I don’t think anyone would disagree that the summer we had in the UK this year was pretty fantastic, yet comments like these just seem to roll off the tongues of the archetypal whingeing pom. 

I tend to talk about the British in a ‘they’ sense.  I guess I am British, but having lived out of the UK for longer than I have lived in it, I do tend to look at things more like an outsider would.  I grew up as an expat brat in the Middle East but have also spent the best part of my adult life living overseas, mainly in Australia.

When Will and I made our choice to come back and live in the UK after so long away, we did so with our eyes (and minds) wide open.  We knew that living here would have its drawbacks but we also know that nowhere is perfect.  Living in Australia I always felt like a foreigner, which came as a surprise to me.  I thought that culturally our two countries were so similar that it would take no time at all to feel Australian.  It turns out we are quite different.  The differences are subtle but none-the-less they are there and it did take me a long time to realise and appreciate this.  Don’t get me wrong, I love Australia and I made some great lifelong friends there, but I didn’t ever feel Australian.

Since arriving back in the UK just over two years ago I have realised I am more British than I ever thought I was.  I appreciate the sense of humour, the pub culture, the stiff upper lip, the guardedness, the history, the amazing architecture.  Everything feels so much more real here.  I read an article today about Britain written by a US expat and a line in there really hit home.  It said ‘The myth that the British are unfriendly stems from the British culture of avoiding superficial relationships.  Once you have made a friendship it is sincere and has depth and permanence.’

Anyway, I digress.  The same article also talked about the ‘magnificence’ of the NHS, and although I already knew I was going to write a post about the NHS, reading this compelled me to write it today!

Since the start of this cancer journey, I have felt in safe hands.  I have been picked up and set on this path of treatment to cure me of this potential killer disease and so far, everything has run like clockwork.  I have been given time, compassion, guidance, a listening ear and at no time have I felt like I was just another number on the list. 

Each and every ‘professional’ I have come across in the last few months of treatment has given me as much time as I needed to chat things through, ask questions, understand the answers and take it all in. 

There are specialist breast cancer nurses who I can contact at any time with questions or concerns, and I’ve never been made to feel that any question is not important.

The nurses who looked after me in hospital were brilliant.  Some stood out more than others but they all worked hard to make me and my ward mates as comfortable as possible. 

I’m being given drugs that cost thousands of pounds, yet I get it all for free. 

So when people complain about the NHS, it kind of gets my back up a bit. Now I do know that the system is far from perfect and I do know that we pay for it in our taxes.  And I’m not saying that there aren’t people who have every right to feel let down by the system.  It doesn’t always work.   Those same nurses who looked after me so well work bloody long shifts  and one of them told me they had recently had their 15 minute morning tea break taken away from them, leaving them with just a one hour break in an 11 or 12 hour day.  Now that is not great people management and is an example of why mistakes happen, mistakes which can be fatal. 

BUT, it is a system that is there for us!  I’ve travelled through third world countries and it really makes you appreciate the infrastructure we have.  What happens for example, when a woman living in a village in Nepal finds a lump in her breast?  I dread to think. 

I guess what I’m saying is, we need to appreciate what we’ve got.  It is too easy to jump on the band wagon and be an NHS-basher so I just wanted to big ‘em up for once.  They, those British, need to be reminded of what they’ve got.  I’m going to start a campaign to drop every Brit into the third world for a week.  It would be interesting to see if attitudes changed?

Monday, 18 November 2013

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.


Saturday, 9 November 2013

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

Monday, 4 November 2013

Recuperation, reunion and results

I was given 4-6 weeks to recover from the surgery before the onslaught of chemo began.  Time for wounds to heal and for my body, and mind, to get over the trauma of surgery.  But the body never ceases to amaze me by how quickly it fights back. 

So I gradually went from slowly shuffling round the block a couple of times a day, to reaching tescos (5 mins away) before I reached the heady heights of walking into Greenwich itself (10 mins walk).  This has now become my marker of how good I’m feeling, whether I can get to Greenwich and back. 

Sadly I did miss out on going to my 1 year old niece’s naming day down in Bournemouth as I just wasn’t up to sitting in the car for the 3 hour journey down.  This was unfortunate as Will and I had been asked to be godparents.  Not a good look to be missing from the big day.  Oh well, we wrote a little poem for Chloe which was read out at the ceremony, and I’m sure she will understand the reason for our absence when she’s old enough.

With perfect timing, our very good friends from Australia visited as part of a European tour and bloody hell it was good to see them.  We’d been apart for more than 3 years and as they’d more or less been our family during our twelve years in Australia, this was a long time to be apart.  We had 3 great days with them in London, visiting the sights and generally just hanging out.  I was so happy to be feeling well enough to enjoy it and it just felt so normal to have them around.  Thanks Ben, Lou, Alfie and Lola, we love you and miss you xx


Although the doctors had some idea of my type of tumour from the initial biopsy, they needed to test the mass when it was removed in order to fully identify its characteristics.  Also, as they’d found at least one lymph node in my right armpit affected by the cancer, they’d had to remove the whole lot (15) in order to test them and see how far it extended.

The good news was that it was just the one lymph node.  I felt a bit miffed that they’d had to remove all 15 in order to find this out.  It has left me with a numb upper arm which will probably always remain that way, and I will now always be at risk of lymphedema.  This is swelling of the arm due to the lymph fluid no longer being able to drain away, and can be chronic.  Realistically, I know this is a small price to pay for getting rid of the cancer but its just another thing to worry about, amongst the long list of worries.

The doctor didn’t make a big deal of my results as he gave them to us, and I have to admit I did do a bit of googling afterwards just to find out what it all meant.  Forgive me if I get a bit technical for a minute, you can bypass this stuff if you like! 

The tumour was

·       hormone receptive (apparently good as this can be treated with hormones to stop it returning),

·       Herceptin positive (not so good as is fast growing, BUT there is now a wonder drug available which I will take for a year, again, to stop the b**stard coming back

·       3.5mm in size and grade 3 (again, fast growing)

Since finding out about my cancer I have been one of those that has listened to the doctors but not really sought any further information myself.  To my mind it’s just too easy to scare yourself by looking into things out of context, so I just trust that they will tell me what I need to know, in order for me to make the decisions that I need to.  Some may call it blind faith but its just the way I feel happiest dealing with it. 

The doctor laid out the rough details of my treatment plan.  I would have 6 sessions of chemo with 3 weeks in between each to recover.  I would then get a month off before starting daily radiotherapy for 3 weeks.  Then there was just the small matter of 5 years of hormone therapy.  Oh, and not forgetting the Herceptin injections, currently only offered via intravenous injection which need to be given every 3 weeks for a year.  Great.  There went mine and Will’s plans for buggering off on a 3 month trip next spring! 
As I started to feel better, I was keen once again to get on with things.  Everyone has heard the horror stories about chemo and I knew that this was definitely going to be the hardest part of the whole treatment.  I didn’t feel particularly scared of it (ignorance can be a wonderful thing!), but I wanted to get stuck in and get it done.

Wednesday, 30 October 2013

Going for the chop

I wasn’t particularly nervous about the surgery.  I’ve had numerous anaesthetics before and come through ok.  In fact I quite like an anaesthetic.  Is that weird?  I like the feeling you get just before the lights go out, that feeling of complete abandonment.
Plus I was just excited about getting on with the treatment.  I’d had a month’s build up to all this and the anticipation was messing with my head.  I just wanted to see what it had in store for me.

So at 8.00am on 7 August, I found myself sitting in a hospital gown, Will by my side, waiting to be taken through to theatre.   Various people walked in and out of the room asking me questions, getting me to sign bits of paper, then leaving again.  The anaesthetist burst in, full of life.  How was she going to be able to sit still for 8 hours?  She was so hyper!   As well as being in charge of keeping me alive, she was apparently to be the DJ for the duration of my surgery too.  She asked if I had any requests for recovery music.  My mind was blank.  ‘A bit of chillout?’ I replied.  How naff.  Oh well, I’m sure I wasn’t really going to be aware of much at that point.  
The plastic surgeon also appeared briefly and drew all over my chest with a black marker pen.  I don’t think it was just random scrawlings, I guess it would mean something to him when he was later standing over me, scalpel in hand?

All of a sudden it was time to go and a nurse whisked me away to do the walk of doom along grim looking corridors to the prep room where I was asked to hop onto the trolley and the anaesthetist cum DJ starting plugging me in.  We chatted about Australia, she’d lived there for a while, and suddenly I was feeling woozy and then I was gone, disappointingly quickly I must say. 

The next thing I knew someone was telling me it was 4pm and that the surgery was done.  I had a rotten recovery.  I felt like I couldn’t breathe properly which was terrifying.  The recovery nurses told me that my SATS were fine but that didn’t really help me to calm down.  I found out later that this is quite common with the surgery I had because they’ve had to break a rib to get to the necessary blood vessels which can make it feel like someone is sitting on your chest. I was given an adrenalin nebuliser which seemed to do the trick. But once I’d recovered from that little episode I started to vomit.  I was feeling hugely sorry for myself by this stage and remember just sobbing, very loudly.  Not one of my finer moments.

I was eventually taken to the ward at about 9pm after delays for one reason or another, to find Will waiting for me.   How lovely.  By this time I was high on drugs and feeling much happier. The first night was long.  I had to be checked every hour for 24 hours to make sure the blood supply to my new boob was still flowing.  Except it seemed I no longer had a boob, it was now a flap?  Every time the nurse came in, she would say, ‘just need to check your flap’.  A flap?  Surely they could think of a more flattering name for it? 
I’d heard stories of blood supplies failing and women having to be whisked straight back into surgery.  The idea of this was just too much to bear.  So it was nerve wracking every time the nurse came to put the Doppler on my ‘flap’.  Some would find the right spot straight away and you could hear the comforting whoosh sound of a healthy blood vessel.  Others were less practiced and when they couldn’t find it straight away, I would have a mild panic. 

I was in hospital for 6 days in all.  Recovery was pretty tough I must say and by day two I was wondering whether I’d made the right choice of surgery.  I wasn’t allowed to sit up because of the large wound on my bum and found this incredibly frustrating.  Thirty degrees was the limit of propping up allowed.  At first I was told it was just for 72 hours, and then suddenly during ward rounds, the plastic surgeon said they didn’t want me sitting for a week!  I was starting to get pretty depressed by this stage.  The days were long and the nights even longer.  I was beginning to have dark thoughts about what it would be like to be paralysed.  I hope that doesn’t sound flippant, as I was obviously far from paralysed.  But having my movement so restricted even for a week, felt interminable to me.  My diagnosis and the implications suddenly started to feel very real.  Blasé had left the building. 
What made things even worse was the indigestion, nausea and wind I suffered from the various medications and from having to eat without sitting up.  I was burping and farting like a trooper.  Apologies to my ward mates!
I was allowed to stand up after a few days, but had to get into a standing position without bending at the hip.  Not easy, but I soon became well practiced at it.  Thank goodness I had a bit of core fitness.  Standing made me dizzy though so I could only manage it for a minute or two.  I started to hate the sight of that bed. 

My lovely family did a grand job of looking after me, bringing me presents and Marks and Spencers dinners so that I didn’t have to force down the rank hospital food which, by the way, does not seem to have moved on since the dark ages.  I find this hard to get my head around when so much study has gone into the importance of nutrition.

My nine year old niece Faye really impressed me with the way she handled the whole hospital situation and seeing me not looking so great, with numerous drains and catheters hanging off me.  She just wanted to help, and help she did.  She was a great tonic.  Thanks beautiful girl x

Will would do the graveyard shift from 6-8pm when I was feeling too pooped to do anything much but for me, at least, it was a nice peaceful time of day.  I’m sure Will found it very dull but he was what I needed at the end of the day.
I did have a pretty spectacular view from my bedside, overlooking the Thames.  I only really began to appreciate this after about day five.  I didn’t get any great photos of it but will include one anyway.

And as for the ‘flap’, I finally had a proper look at it on the day I left hospital when one of the nurses took me into the bathroom to look at it in the mirror.  I’d had many compliments about it from all the nurses and doctors who’d checked it out over the week.  To me it felt pretty alien and not really a part of me.  I had to agree the shape was good, but having bum skin in place of a nipple I have to say detracts a little from the overall look!  In fact on my first night after surgery, one of the nurses kindly had a giggle when first seeing my 'flap' saying that I must have a very white bum bum!  She happily pointed this out to anyone who would listen.  Thanks lady.  Thankfully, further plastic surgery, nipple creation and tatooing will happen once all the rest of my treatment is over. 
My recovery was rapid once I left the hospital and I was walking about and sitting up after a couple of weeks.  I was no longer regretting my choice of going for the full monty .  I'm happy with the results and how it all feels and the difficult times were short-lived, in hindsight.  I've even been able to get back on my pushbike again.  Happy days.