Final chemo - I made it!

My last chemo didn't happen when it should have....

On Christmas eve I was getting ready for a family get together and looking in the mirror, noticed my neck was swollen.  Initially I thought bloody hell, even my neck is getting fat now!  But then realised it was just on the one side.  Oh man, what was this now?  I showed Will, who agreed it was definitely there.  Oh well, nothing to be done now, I would keep an eye and get it looked at after Christmas.  I managed to put it to the back of my mind.

I called the chemo hotline the day after boxing day and they didn't really have much to say about it.  It was obviously not a common, chemo complaint.  They said to try and get a GP appointment or go to A&E.  It didn't seem like an A&E thing to me and I managed to get an emergency GP appointment for that afternoon.  The 'chemo card' can be pretty useful sometimes!

The GP said it looked like a thyroid issue.  Thyroiditis?  That's about all he said.  It was probably totally unrelated to breast cancer or chemo.  He sent me for blood tests and organised an urgent ultrasound. 

I was worried about going for my final chemo in a few days time though, I didn't have a scheduled appointment with my oncologist before then (due to stupid Christmas) and really wanted her to see it and advise me on what to do.  I had to go for pre-chemo bloods the day before the originally scheduled chemo, and they very kindly slotted me in to see Oncy (my lovely oncology consultant) whilst I was there.

She was flummoxed.  She had never seen this as a reaction to chemo.  Was it infection? Possibly.  An abscess?  Unlikely as it wasn't painful.  She was unhappy about putting me forward for chemo whilst it was unclear what it was so it was decided to hold off for a week.  I was disappointed.  Just wanted to get it all done.  I was looking forward to starting the new year with that part of treatment behind me.  Now I just had something else to worry about.

Oncy fast tracked me for an ultrasound the following day (thank goodness, as I got my appointment through via the GP for 30th January!!)

The sonographer could see no sign of infection.  This was worrying.  I was hoping for something simple.  She said it looked like nodes and cysts on  the Thyroid.  It is apparently common in females and is hormone related.  Bloody hormones have caused me a whole load of grief in my recent past!  My thyroid bloods came back normal.  The sonographer seemed to think this was a good sign.

I was now a bit worried and made the dreadful mistake of googling nodes on Thyroid on the train on the way home.  Cancer kept being flagged up!  Shit.  I was doomed.

So New Years day was not the celebration I was hoping for.  I was feeling pretty sorry for myself to be honest.  The wind had been knocked out of my sails and I felt cheated.

Fortunately I had another meeting with Oncy scheduled for the following day.  I went in there expecting the worst.  It felt, all over again, like the day I was to be told I had breast cancer.  HOWEVER, magically, it didn't end up going the same way.  Oncy said it didn't look like cancer.  And she was CONVINCED it wasn't secondary breast cancer.  Huge relief. She said the cysts could always have been there and have just become inflamed for some reason. She was still in the dark as to what may be causing it though, and had spoken to the rest of the team who have never seen it happen during chemo.  

I will be referred to the thyroid experts, who may want to do a biopsy, but they would wait until chemo was over.  This was also good as there is no sense of urgency which is in itself reassuring.  We talked briefly about Thyroid cancer and I was happy to hear that it is totally treatable, should the worst come to the worst.  But I came away from that appointment feeling like I'd been given my life back again.  What a high!  What a rollercoaster.

In light of all this, Oncy was happy for me to go ahead with chemo the following week.  Happy days.  I never thought I'd be so relieved and so looking forward to a chemo.  Just one more set of blood tests to make sure my white blood cells (which had now become raised would you believe) had gone back to normal.  They had.

I was able to enjoy the rest of my day with my nephews Hamed and Yousef, who were overnighting with us on their way back to uni after holidays.  We had a great day showing them Greenwich and surrounds.  Being out of towners (actually, out of country'ers - they come from Bahrain) they think of London as Oxford Street and Piccadilly Circus.  They seemed pretty impressed with our scenic and quiet side of the tracks.

Greenwich Park with my handsome boys

And back when I had proper hair and the boys were cuter

I had a make up session with the Look Good Feel Better Charity at a hotel in Soho the other day and it was a real treat.  There were about 10 of us ladies there and a very flamboyant, male professional make up artist showed us how to take care of our skin and apply make up to turn us into glamour pusses.  It was a fun and very light hearted afternoon.  Will thought I looked like a drag queen when I got home.  Hmm... not the look I was after.  I must admit I would never wear half that amount of slap even on a special occasion, but I did pick up some useful tips and came away with a great haul of make-up to top up my very meagre supply.  So a big thank you to this great charity.

So all in all yesterday, final chemo day, was a good day.  Despite the fact that I had a poison dunking and also that it was probably the least smooth chemo experience I have had.  I was there an hour and a half before anything started, my slot had been triple booked for some reason.  Then the Herceptin contraption didn't work so this had to be sent down to a pharmacist to have a look at and dispense another and get it through the clunky hospital system. 

It then took 3 attempts to get a cannula in.  My penultimate chemo had been a dream in this respect.  The lovely Sophia had slid the cannula into a nice chunky vein on the side of my wrist and I barely felt a thing.  I was confident this time.  I asked the nurse to use the same vein.  It didn't work.  She called in the cannula queen.  She tried the same vein, but it blew.  We asked for Sophia.  "Bring in the big guns! " Sophia arrived  - my saviour.  She found another big fat vein and slid the cannula into it like a hot knife through butter!  Hoorah!

I could relax now.  This would only take an hour then I could go home.  Except I still had the Herceptin to go.  A new Herceptin dispenser arrived on the ward.  Good start.  Once my Docetaxel had finished running, they administered the Herceptin.  But then came the good news that I was supposed to be monitored for 2 hours afterwards (which is why they always give it before the chemo).  It was after 6pm by this time and I should have been all done and dusted by 4.30, in theory.  We managed to talk the nurse down from 2 hours to 1 hour of observations.  Will went home to cook dinner and the nurse held me ransom and relayed me the story of how her boyfriend had recently done the dirty on her with her best friend.  It kept me entertained.

My lovely chemo cyber buddies made this for me.  They're the best!

I know I still have a shit few weeks to get through the side effects of this one, but I'm on a high (helped by steroids!).  I sincerely hope I never have to go through this again.  I sat next to a lady at chemo yesterday who was having chemo for the third time for recurrent breast cancer.  She was very matter of fact about it.  If she had to do this every few years, then so be it.  It gave her life.  I guess I would be the same, but I'd rather not have to find out.

I had a sneaky glass of white wine last night in celebration and in the knowledge that it is going to taste vile for the next few weeks so I had to get one in whilst I could!  This morning my mouth is already feeling burnt and the taste buds are disappearing.  Energy levels are good though so I'm heading out to brave the cold, windy streets of Greenwich. Guess I'll be seeing quite a bit of them as I shuffle around for the next few weeks.....

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.

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!)