Friday, 21 March 2014

Who am I now?

Every day I feel a little more like me. This is a good thing.  Definitely. But I have to confess to having some confusion over what I am supposed to do or feel now or indeed, be.

For 8 months I have been someone with cancer and have experienced all the thoughts, fears and emotions that carries with it. It's not that long in the grand scheme of things, but it has been a pretty intense 8 months.  Now it seems that part of my life has suddenly come to an end (thankfully!) and I need to pick up where I left off back in June of last year. Of course I am and will be eternally grateful that my treatment has been successful. Others I know have not been so lucky.

But shouldn't I be jumping for joy everyday?  I have experienced moments of pure elation that I am alive, like a few weeks ago when I was standing at London Bridge station in rush hour, waiting for my train. I was listening to music through my earphones and watching the hustle and bustle going on around me and had a sudden rush of emotion which made me tear up. I felt very happy and very lucky to be here. But its almost like I have to keep reminding myself. I'm back to taking life for granted and I feel like I'm wasting the opportunity that I have been given.  Maybe I'll come up with some brilliant ideas for saving the world when I've more energy?!  I can only hope so because I need a plan, a hook, something to keep me moving forward. 

Returning to work has been great.  Now that I don't have the constant round of appointments to go to, work gives me back structure and normality.  It wears me out and I'm certainly not ready physically to return to full time work, so I am grateful to the Blue Cross for allowing me the flexibility to do what I feel like I can cope with.  I am a locum so they have no contractual obligations towards me, they are just dead nice! 

I was a little over optimistic in regards to embarking on a running regime.  I didn't run before I had cancer, why did I feel the need to start now???  Despite taking it very gently, after two weeks my ankles were swollen and sore and my knees ached.  I thought doing a bit of exercise was going to relieve the aches and pains but it reminded me that I need to be respectful of what my body has just been through.  I'll give it another go in a week or so as I do fancy doing charity run at some stage, it just might have to be a little later in the year rather than May!

Getting back on the motorbike was another joyous occasion.  Will and I went out for a little ride in the Hertfordshire countryside and it felt amazing.  I felt like I wanted to just pack my bags and keep riding.  We got a bit over-excited and went home and started investigating riding from east to west across The States during the six weeks in July/August that we have free.  We tossed around different ideas of buying bikes there and shipping them back; shipping our own bikes over; cycling?  The excitement lasted a few days and then Will suddenly remembered and then reminded me that I will still be having Herceptin every three weeks until November.  Bugger.  Its not over just yet!  So we're back to planning a European trip, which is not a bad option either.  I just found it quite amusing that we could forget so easily.   

I had an appointment with the plastic surgeon a few weeks ago and we discussed putting the final touches to my new boob, ie. a bit of liposuction to make it match the other a little better, and a nipple tattoo.  He won't do this for another 4 months though, to give everything time to settle down after the radiotherapy.  

So back to hair watch.  I have finally ditched the scarves and wigs and it is truly liberating.

There are still a few baldish patches on my head and the few eyelashes I have are a bit wayward, but we're getting there.


The eyebrows make a hell of a difference and are courtesy of Karen Betts.  I had them tattooed again last week as a follow up treatment from my Caroline Monk makeover last month.  I love them! 

Friday, 28 February 2014

Reclaiming my body from the devil called chemo

Every morning when I get up, I check my hair growth in the mirror. It is a source of endless fascination and excitement for me. I'm constantly taking photos of my head, from all angles, so that I can see the progress.

If you will indulge me, I'm going to start a hair growth diary and take weekly photos so that you can also share in my excitement at moving on from being a baldy.  Maybe monthly would be better actually. Weekly might just be that little bit too boring.  A bit too much like watching paint dry?  I'm now feeling a bit sad that I didn't take more photos of my head when it was properly bald.  But it wasn't a good look so I guess it's understandable that I didn't feel like immortalising it.

So to start off......

Just before final chemo (hair had started to grow back as I had the week's delay )

2 weeks post chemo

6 weeks post chemo

The hair that has come through so far has a weird texture, quite coarse really.  There is definitely a lot of grey and it is very patchy!  I gave myself a number 2 all over the other day as I had quite a few wild grey strands giving me the mad professor look which I wasn't liking too much.

I started taking Tamoxifen on Monday, the final part of my treatment which is a tablet that I will take everyday for the next five years. (Except when I forget, like I did yesterday.  Oops.)  It is an anti-oestrogen drug which which is prescribed to women like me whose breast cancer is of the oestrogen receptive type. It switches off the hormone in order to reduce the chances of my cancer returning.

I was dreading starting this to be honest. I've had oestrogen in my body for a long time.  What were the effects of turning it off going to be?  Its a bit scary, knowing that I'm in it for five years, whatever the side effects. Ive purposefully not read much info about it until now as I didnt want to stress about it whilst everything else was going on.  So we will see what happens. Nothing drastic has occurred so far, five days in (with one day off!). I know plenty of women have been there before me and carried on with their lives so I'm not going to dwell on it.  The main side effect seems to be hot flushes, but I was having those already from the effects of the chemo. I don't like to think that they are going to last 5 years but it that is the worst of it then I guess I'll cope. 

It's 7 weeks since my last chemo, and the muscle fatigue is still there. I feel like an old lady every time I get up from sitting for a while. But it isn't stopping me from getting out and exercising as I'm determined to reclaim my body from those chemo demons. I cycled to about half of my radiotherapy appointments (12 mile round trip) and I started a 'couch to 5k' running program on Monday. This resulted in me exposing my bald (ish) head  in public for the first time. I experienced a hot flush whilst walking home from my run/walk and I just had to get that hat off my head!  I wont deny, i did feel a bit self conscious but it felt so good to have the wind in my hair (stubble). As soon as I get a full covering I am ditching those wigs and scarves. Freedom!

I had my final meet with the oncologist yesterday.  Sadly I didn't get to see my favourite Oncy, but the guy we saw was very nice too.  He checked my radiotherapy burnt chest which he didn't seem too concerned by, and answered a few questions that had been bothering me.  Will and I both seemed a little reluctant to leave.  This was it, the end of 7 months of intense care.  In some ways, I'm quite glad I still have the regular Herceptin  treatments on the horizon.  Otherwise it would feel a little like a safety net being pulled out from under me.

Nevertheless, I celebrated the occasion by meeting up with one of my online chemo buddies.  Our first 'real' meeting.  We had a great catch-up, not dwelling at all on the past few months but just having a good old natter about all sorts of things.  Talking to someone who totally gets it is very comforting.  I have met six of these ladies from the forum now, and we are planning a big meet up of about twenty of us in April.  It is so lovely to meet properly after going through the tough bit together.

The cycle trip down to Turkey has had to be put on hold sadly as Will has been offered a 5 month work contract and we felt that it would be silly to turn down such a good chunk of work.  So we have had to rapidly recompute - our heads were already on the way to France.  We are both quite disappointed but I'm sure we'll get over it.  We are planning a big trip next winter and will have some time off in the summer too so its not all bad. 

So I have decided I need to head back to work too and returned to the Blue Cross Vet Hospital last week to do a couple of shifts to ease me in.  Next week I do 3 days so will see how I go with that.  It will be great to get back to some sort of normality and going back has made me realise how much I have missed my job. 

Thursday, 20 February 2014

Mixing it with the stars

Its been a while since I blogged.  Life has felt a little more normal recently.  I’ve been feeling pretty well and consequently have been busier than I have in a long while.

The break in Lanzarote was great.   Only three days but it was long enough to chill out and catch our breath.  We’ve not done a package holiday before.  We felt we didn’t quite fit with the other holidaymakers.  But it didn’t matter.  The sun shone (a little) and we were away from it all.

Radiotherapy started the day after we got back and I now just have 1 more session to go.  I’ve been going every day for the last three weeks but to be honest, this part of my treatment has been easy and pretty painless.  The only real issue is the discomfort of lying in one position and not being able to move a muscle whilst they zap you. It’s harder than it sounds.  Sometimes this might be for just a couple of minutes and sometimes it can stretch closer to 10 mins, depending on whether they need to take x-rays too, which they do once a week. 

My poor ‘new’ boob is looking pretty red and angry now.  I feel sorry for it.  Since it was created back in August it really hasn’t been given much of an opportunity to settle in.  The chemo made it sore and now it is being fried with heavy duty rays.  Hopefully it will be left in peace very soon.

So the weird thing about coming to the end of treatment is the ‘what now’ feeling.  I’ve been warned by others that this can be one of the most difficult periods of all.   The surgery and chemo part was all about surviving and getting through it.  Now I’m feeling reasonably well and there is a certain assumption that life will go back to normal.  But my normal has forever been changed and it is going to take some adjustment I feel. 

To be honest, since the day I was diagnosed, I haven’t felt particularly scared, not for my life at any rate.  The doctors were positive about my prognosis and I clung onto this fiercely.  But as time goes on I am facing the reality that cancer will always be a part of my life.  It may be gone (I hope) but it will never be forgotten.  I am scared of it returning and scared of it spreading.  I think these fears will lessen as time goes on (that’s what I’m told anyway) and I’m looking forward to a time when my recent experiences are a distant memory.

Getting on to happier experiences, last week I had the honour of being part of Caroline’s Campaign Makeover and what a fantastic day that was.  Caroline Monk went through breast cancer treatment back in 2004 and has made it her mission ever since to give women in the same boat their femininity back.  She organises one or two of these events every year and does an amazing job. 

Before and after shots
There were six of us ladies involved, all at various stages of treatment.  We all met up at a Toni and Guy salon in Mayfair and were treated to an afternoon of pampering and generally being thoroughly spoilt.  New wigs were donated by Trendco and then styled by the staff at Toni & Guy.  We were all given new (tattooed) eyebrows by the lovely ladies at Nouveau Beauty.  Our nails and make up were done and then we changed into our outfits which were donated by Debenhams. I had spent a great afternoon at their Oxford St store with the personal stylist Alain in the week prior to the event.  He helped me choose my outfit for the occasion.  I wish I could permanently hire the lovely Alain.  He got me trying on things that I would never normally look at, and everything looked great.  It also did great things for my self confidence as I paraded each outfit and all the other staff members complimented me and told me how great I looked.  I know it’s their job and all, but it did feel good!

Once we had all been transformed from cancer patients to glamour pusses, we were picked up by a limo and taken to a club in soho where a party had been laid on for us.  A whole host of celebrities were there including Stephen Bowen from Blake who serenaded us and Next of Kin who entertained the crowd with a few songs.  Bobbie Davro stole the show though with his rendition of Elton John’s ‘Your Song’.

The paps seemed more interested in the celebs than us ladies which I thought was a bit rude.  Oh well, we certainly felt like the stars of the evening so I guess that’s what matters!  I can’t thank Caroline enough for what she did for us on that day.  She has an incredible energy and drive and has helped so many women get their mojo back.

Thursday, 23 January 2014


I've recovered amazingly quickly from my final chemo. Its like my body knows it was the last one and is jumping for joy. Now I really feel like I can celebrate the end of that nightmare. This makes me happy.

Happy that...
  • as I recover, this time I will be allowed to just get better and better, rather than having the sledgehammer hanging over me, ready to strike again
  • I can stop worrying about what I eat - sushi and soft cheese are back on the menu!
  • I don't have to be paranoid about infections anymore
  • food may actually start to taste normal
  • my hair can grow back (although in some ways I might miss my bald head, it's comforting to stroke especially now that there's a little bit of hair there, and is very easy maintenance)
  • I might soon be able to enjoy a glass of wine
  • I can make plans without thinking about how many days post chemo it will be and consequently what variation of shit I will be feeling
  • I can throw out all the medication that I have been relying on to manage those evil chemo side effects
These thoughts pop into my head several times a day, and I get that happy feeling.   Do yourself a favour and click on the link below.  As my sister Sas says, I defy anyone not to feel happy whilst listening to this song! (Pharrell Williams - Happy, in case the link doesn't work).

(I realise I've possibly overused the word happy in the last few paragraphs.  But that is after all what this post is all about.  So I think I won't worry about it.)

Seeing some hair growing back on my head is very exciting.  My eyebrows and eyelashes seem to keep disappearing sadly but luckily I started off with thick eyebrows so they're taking a long time to disappear altogether.  So the moral of this story is, don't pluck your eyebrows, you never know when you might need those extra few hairs!  Losing these has been far more distressing than losing my head hair.  A face seems to lose all definition without them.  I've never been one for wearing make up but at the moment, I can't walk out the door without applying eyeliner and mascara first.

Look closely, you will see some hair there somewhere

Radiotherapy starts in a few weeks. I went for a CT scan last week so they could line everything up to know where to direct the beam.  I've been given three little tattoos, one in the middle and two either side of my chest which I guess will be used as markers for something or other. These look like little blackheads, nice.

Herceptin continues of course, so its back to the chemo ward next Wednesday for number 4 of 18 and then the following day, Will and I will be off for 3 days of sunshine in Lanzarote. Hurrah!  Best get myself a sunhat.

Thursday, 9 January 2014

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.....

Complimentary therapies and cancer treatment

I’ve always loved a bit of complimentary therapy.  I find a massage or reflexology session a real treat.  Don’t worry though, I wasn’t about to ditch the conventional cancer treatment in preference for ‘positively thinking the cancer out of my body’.  I’m not that brave.  I know there are some that believe it is the way forward and have spurned conventional therapy in its favour.  I also think that cancer is as much a mental issue as a physiological issue so it is important that people have choices in how they are treated.  I happen to think that chemo, although not an appealing prospect, has a proven track record for blasting the shit out of cancer so I’m happy to go with it.
Fortunately, the NHS is beginning to embrace the idea that complimentary therapies can be useful in conjunction with conventional medicine.  They offer massage and reflexology in the cancer day ward at Guys Hospital where I am being treated.  This is brilliant, although waiting lists seem to be long and I haven’t yet been able to book a slot.
There is a fantastic charity in Fulham called ‘The Haven’ ( which has been set up for breast cancer sufferers.  It was founded by a woman who was concerned at the lack of emotional support and information available to those going through Breast Cancer treatment.   The Haven offers breast cancer patients 10 free therapy sessions tailored to each individual, and the range available is huge.  They also run workshops on nutrition, meditation and moving on after breast cancer amongst a host of other subjects.   There are two more Haven centres in Hereford and Leeds.
I have visited four times now and it is a very calming place to hang out.  I’ve had acupuncture to try to combat the side effects of chemo, as well as a counselling session where I just got to talk about what was bothering me.  After my reflexology treatment, I had the best nights sleep I’d had in weeks.  All good stuff.  You can eat a healthy, home cooked lunch there for the bargain price of three quid, or just hang out in the lounge area where there is tea and coffee and a whole library of books about cancer and its treatment. 

I am also fortunate that my sister in law Emily, has recently studied to become a Sound Healing Therapist, and has needed a guinea pig to practice on!  She uses all sorts of instruments to create sounds including Tibetan singing bowls, drums, tuning forks and bells.  As well as being extremely relaxing, I can’t help but feel the vibrations these sounds set up in my body must be doing some good.  The idea, I think, is that they bring the body back into harmony.  Whatever its doing, I love the sensation it gives me and can highly recommend it.

Emily has also taught me the Tibetan Medicine Buddha chant......

Tayata Om bekhanze
Bekhanze maha
Bekhanze radza samund gatay
The translation is:
May all sentient beings suffering sickness
Be relieved of that sickness
May all sickness go away and never come back
Direct and to the point I think you'll agree!  So I have been giving that a go.  Surely its worth a shot?  The idea is that you should chant it 180 times every day for 40 days!  I haven’t got the discipline or dedication to go that far, but I try to incorporate it into my yoga routine which I do a couple of times a week.
And on the subject of yoga, I have found that really useful, especially during the first week after chemo when energy levels are low.  I've done several courses over the years so know enough to be able to do a bit at home.  I make it as energetic as I can manage and it gets my body moving when I’m not feeling up to getting out and about much.  I did try going to a yoga class a few weeks ago during my good week, but the yoga teacher was so nervous about me being there.  I think she thought I was going to keel over without warning.  So although I felt fine doing the class, there seems to be a perception that chemo patients are a frail bunch.  It was an interesting lesson for both of us I think.