No news is good news!

Today’s chosen title is another little saying that I like and believe in, and which I seem to have adhered to since my last post.  I think we forget to tell our nearest and dearest when things are good, although we are perfectly willing to have a good old whinge to anyone that will listen when things are bad.

Well, I’ve forgotten to let you know that it’s been a great week. The chemo brain switch flicked off on the Tuesday morning in the end.  Most bizarre how it turns off overnight – just like that.

Papa is so much better, after a few days away with friends and an appetite which is slowly coming back, he even had a sherry the other night (no biggie, I hear you say… but when you’ve been off booze for nigh on 6 months, to partake of a sherry that tastes as it should is quite something!).

In keeping with the alcohol theme, one of my exciting moments was enjoying a cheeky glass or two of Prosecco (which tasted like Prosecco, not some dreadful, bitter medicine) with friends at a Sunday night impromptu BBQ (thanks A & P), and after minor panic the week before when my taste buds decided that Cadbury’s Twirls were quite revolting, I’m back on the chocolate… you can all rest easy now knowing the share price of Cadbury’s and Tesco’s hummus will remain stable for the foreseeable future.

Do you ever get the feeling and Dad and I are easy to please right now, funny how you become VERY grateful for the little things in life!

I keep forgetting that I am wearing scarves, or if not wearing one, forgetting that I look like your archetypal cancer patient… Quite funny when you make eye contact with someone who you catch staring at you – they look embarrassed, I look confused while I try to remember why they are finding me so fascinating, I smile at them and they haven’t got a clue what to do… makes me chuckle, worth a trip to the supermarket just for the entertainment factor!

As some of you may have seen on facebook, Joe and I have chosen the photos from our first “Chemo Collection” photo session.  I’ve popped a few on here to bore you all with, I love the fact that this is all about me, I do feel as though I have carte blanche on the bragging rights to do things like this now. The wonderful Nicky not only agreed to alter her “Baby Collection” product but has worked miracles (and is very clearly a master in ‘tidying’ up blotchy, red skin and wrinkles) and created some truly lovely shots for us. As soon as I saw them I was so relieved that I had done this as there’s no knowing how I’m going to look at the other end of our journey (I’m back to the hair issue again, it really has taken on a whole new level of importance..). I think it was important for Joe as well to have a reference point for how I looked for the first decade of his life.  We’re planning on having a giggle at the ‘during’ session and it’ll be interesting to see how long we have to wait for the ‘after’ session. Here’s her website if you need a brilliant photographer in the Bristol area – http://www.nicolajanephotography.co.uk/

I had such a lovely weekend with my boy. Simple days doing simple things. Walking the dog, gardening, Lego building, nipping out for fancy burgers for dinner, clearing out outgrown toys, etc.  Nothing that will set the world on fire, but when you get to that quiet Sunday night time and all is peaceful and your honey says, “I had a really nice weekend Mum”, it does give you a warm, cuddly feeling.  That and the fact that you managed to do something right, a whole 48 hours without any epic ‘mummy fails’ and no shouting!

Looking forward to a special weekend with family and Uncle R and K who are over from NZ, a well timed visit as they can help us celebrate Big Sister and my birthdays. Well, actually it’s her birthday celebration which I’m gate crashing as I’ve decided to cancel mine this year as I get the feeling it will be a bit of a wash out straight after chemo no.3 – one must feel like eating cake on ones birthday!

Notes from this week:

  • Itchy face started over the last couple of days – driving me mad.
  • Eating… lots – managed to get 3lbs back on.
  • Daily indigestion is a bit annoying. Apparently that’s because your gullet is made up of those pesky fast growing cells.
  • Walking – did 4.3 miles yesterday and today so back to where I want to be before chemo no.3.
  • Painful left boob – must ask Dr C about that at pre chemo appointment tomorrow.
  • Sorry to divulge the fact that the inevitable ‘blocking up’ of the system has started, don’t think the iron tablets are helping, so utilised some of the laxatives that I was issued with on day one – haven’t helped much.
  • Scalp has been painful again and a bit lumpy, was expecting the last lot of hair to fall out but it hasn’t yet – clippers are going to be required soon I think…
  • Eyebrows, eyelashes, nails are all still present and correct.

Bit of a gushy post this time, don’t worry, I’ll be back to normal next week.  I have to say though, it is rather nice knowing that it’s not all doom and gloom and good weeks do happen – I’m mighty glad that I have this so I can re-read it when I’m feeling crap.

 

It’s an isolating experience having cancer

The world keeps turning, you watch it happening around you, but it’s all been put on hold for you by something which is out of your control.

(Please Note: I wrote this yesterday, I’d decided overnight not to post it as it wasn’t up to my usual upbeat ramblings, just a muddle of grumbling thoughts.  Two people persuaded me otherwise (Sarah & Charity are the culprits…).  They said that this is about me and my journey, good and bad, and all should be documented).

Apologies, but feeling a smidge negative and frustrated this week.

Fingers crossed that tomorrow I will wake up and my eyes will have reconnected with their sockets and my brain will be back in the correct way round (seems to have been turning circles inside my skull since Monday), which will mean an end to the dizziness…

I’m bored, but don’t have the energy or mental capacity to hold a sensible conversation, therefore, I draw the curtains. Heaven forbid talking to two people at once in the same room as that would mean moving my eyes from one person to the next = feel dizzy = feel sick.

Decided to keep myself entertained today with some statistics:

  • 52,500 people are going to be diagnosed with breast cancer in the UK this year
  • 1 in 8 women in the UK will be diagnosed with breast cancer
  • 66 million projected UK population in 2017
  • Let’s go for a 50/50 split male to female = 33 million women
  • Let’s estimate that about 10 milllion of those are under 20
  • Let’s estimate that about 3 million of those are over 75 years

So – out of 20 million women aged 20-75 years, 52,160 women will be diagnosed in 2017 (taken off the 340 unlucky men) – that’s 0.26% (when you look at it that way, it’s quite an exclusive club) – and there are so many websites, forums, help groups – so why does it feel so very lonely? [Monday – not quite sure why I felt the need to resort to stats to try and work out why I was feeling fed up??] 

This is what I’ve been asking myself this weekend… WHY do I feel isolated?

Maybe it’s because I’m a single mum so to all intents and purposes I’m on my own with no one immediately there to rant at/chat to.

Maybe it’s because for the first week of the cycle which is when it hits me, I struggle to focus on my computer screen so online options are a no, no.

Maybe it’s because I’ve chosen to isolate myself and just get on with it in my own way? Right now that feels necessary even if it’s not correct, as all energy reserves have to be kept for Joe and Winston (oh, and getting up and washing each day).

Also, how come everyone you talk to who has a friend, relative, acquaintance, that has sailed through chemo… where are all these super human beings? Am I being a wimp?

Moral of this weekend’s story – stick to ONLY listening to the consultants and nurses, their mantra seems to be about the personalised service of drug treatment, everyone’s cancer is different, everyone’s drug regime is different everyone reacts differently.

Also, don’t get bogged down by stats – it’s dull.

There we go, rant over.  I think I’ve convinced myself I’m not a recluse or a wimp and I feel a bit better now.

Notes from this week:

  • Yippee yeay for more and new anti sickness tablets – wasn’t sick, just felt nauseous.
  • Chemo brain and dizziness has been worse this time, but as long as it stops tomorrow it will have lasted exactly a week again. [Monday – it hasn’t completely gone, but nearly there]
  • No signs of mouth ulcers.
  • Very tired, but not able to sleep properly.
  • Not such a hot face and skin this time.
  • Hair nearly gone, scalp not painful anymore and dropping the last bits very slowly – if we don’t go for the clippers soon then I’ll have to start doing a comb over… it needs to go I think, very aware that if I don’t have IMG_6993my hat or scarf on and I go to the door, then I am starting to scare the neighbours and delivery people!
  • Joe seems to be contemplating things more, but not feeling the need to talk about it.  Might be because my hair looks so rubbish so he has a constant reminder now.  Another reason to go for a ‘cool’ shave rather than odd/ill cancer look.
  • Plan to get back to walking 4 miles a day before next cycle is going ok – done just over 3 miles today. Had to focus on just walking as looking around at nature = dizzy.
  • Now just over half a stone down on original weight so not lost too much more this time

Final thought from today, Monday:

I realised something very important today, it was a proper ‘lightbulb’ moment – this isolation thing I was wittering on about yesterday is a mental thing, not physical.  The support I have around me is humbling.

I have so much contact with, and help from, friends, neighbours, family, son, dog, cat, postman (who, I might add, knocks on the window every morning and waits for a thumbs up to check on me).

I’ve had flowers, snacks, books, magazines, lasagnas arrive on the door step. 

I walk twice a day, I’m not shutting myself away (that much…).

The isolation is in the mind, sometimes I guess I just pop along to a dark place specially designed to overthink things, spend a little time in the doldrums and then dust myself off and type my way out of it.    

Chemo No.2 administered

Now we wait…

IMG_6970You see those red ones?  They are the DEVIL…they are the ones that wreck veins and make me sick.  But they’ve got their work cut out this time… I’m a bit more savvy to them now – different anti-sickness drugs have been taken in advance, water is being drunk by the gallon and I’m not walking the dog twice and having a cheese sandwich as soon as I get home (ie. not being my kind of ‘normal’ which was what was suggested I should do three weeks ago, I’ve amended my ‘normal’ to sitting, resting, chilling out – thank the lord that Wimbledon started today!).

Had a great time with two fab nurses (thank you Chloe and Charity) at the chemo suite, such an enlightening conversation about the brutal (their words, not mine) regime that I’m on and how else to manage it and what to expect. Can’t remember all of it right now as fuzzy chemo brain is starting to kick in. Gaggy was there though so she will be able to remind me in a few days. Found out that Dad’s regime was just as brutal as well so let’s see if I can beat him and do more than two cycles…

They said that I need to take it easy as my body is going into battle with the chemo drugs now for the next two days, and needs to focus on that rather than anything else.  When I told Joe he said “Like the French Revolution?”.

Other things to remember:

  • Flush the loo twice to get rid of poisons before Joe sits on it, as the chemo drugs are designed to destroy all fast growing cells within their reach – and according to them, a 10 year old is a mass of fast growing cells.
  • Eat healthily, drink at least 2 litres of water a day
  • Take as many anti-sickness drugs as possible
  • Don’t shut the sharps box before you’ve put all seven used syringes in it as it will lock… oops – small boy, bright yellow box stating “sharp objects” – shut and locked within 2 minutes of walking in the house.

 

Hair today, gone tomorrow…

It’s been a tricky decision about the title of today’s post.  Nearly went for “To wig, or not to wig: that is the question”, but decided against it after a rather amusing appointment with the ‘wig lady’ at the Oncology Centre at the BRI.  Thank you V for managing to keep a straight face as nylon hair pieces kept popping off my rather large head.  The poor woman was mighty relieved when I suggested we have another bash at choosing one when my hair had fallen out.

I don’t really want to wear one anyway as I think I’ll be a bit more of a scarf person… well, we’ll find out soon enough as it’s coming out in handfuls now.  I had no idea quite how thick my hair was, it seems impossible that I’ve got any left after the amount of drain/floor/clothes clearance I’ve had to do since Sunday morning.  I’m looking forward to seeing K’s wig from London which is on its way down to me – she’s been bigging it up as something rather different, let’s hope it’s stretchy! (She’s looking gorgeous now after her breast cancer journey so it’s surplus to requirements.)

I will persevere with the wig search in case Joe and the family would prefer to see me in one.  I am not sure about it and will still need a bit of convincing.  If my eyebrows and eyelashes decide to disappear as well then I think wigs can look a bit odd and I’m not quite sure how much patience I will have with drawing on eyebrows and sticking on flash lashes.  Its funny what you start to think about when pushed – how our hair is so much of our identity, but how our brows and lashes are even more so as they define our face.  I like to think that I will be proud of my baldness as it proves and shows that I am in warrior mode fighting this bugger, we’ll soon see if I still think that!

It’s pretty remarkable how my shaggy mop has hung on until now.  Joe and I had a photo session booked for last Saturday (a date on which I agreed with the photographer quite some time ago based on hair-loss estimation by the registrar at the Oncology Centre). After a chat with the nurse during my first chemo I had given up the ghost of having hair for our “before” shoot as she predicted I’d be as bald as a coot within 10 days – yah boo sucks, I made it to 13 days!

It has been a bit of a shock, I know I’d been rather blasé about it all going but when it happened I did in fact need to come to terms with it.  Joe was determined to start cutting it on Monday so I had to hide the scissors as I needed just one more day… Anyway, as you will have seen on facebook, he did a cracking job.  I’m glad we went a bit shorter as it’s put his mind at rest (and mine) that I won’t look completely peculiar with short hair.  To those who haven’t known me since the heady days of 6th form, I’ve had my hair this length since then, so it’ll be a bit of a change.011

The plan was a shave it all off and go for a No.1 straightaway, but the thought of having anything more than scissors near my scalp right now fills me with horror – my head hurts.  Whenever I move my hair it’s like someone is sticking pins in me… they didn’t mention that in the hair-falling-out help books.  Sorry P, you can take the clippers off charge.

So, judging by the length of this post – maybe this has been playing on my mind more than I thought it would.

Back to general business – since the chemo brain went away I’ve been feeling great – pretty much normal actually, just half a stone lighter!  I was slightly worried about the fact that I haven’t been able to put the weight back on, but after thinking a little more about it, it may be an indication of the amount of wine and chocolate I usually consume – those are the two things that have had to go as I can’t face them; wine too bitter, chocolate too sweet – that is probably what most normal people dieting lose when they have the will-power to cut back on calories (not a concept I’m familiar with).

There were lots of appointments last week; echo-cardiogram to check heart (it’s still beating), line care for the PICC (it’s still in) and marking of Lump 1 and Lump 2 so they don’t lose them for the op after the chemo is done (they were still there) Lump 3 had already been done.

001Had a distraction this week as our gorgeous little gluestick – Winston, I call him that as he keeps us all sane and holds us together – had his “Op” so he’s now in recovery and missing a couple of things that were making him chase his lady friends all over the fields of Olveston.

Looking forward to our first family outing to the Oncology Centre tomorrow. Papa is seeing Radiology to chat about options for him as his chemo wasn’t successful and I’ve got my pre chemo assessment in preparation for cycle no.2 on Monday.  Gaggy and Ali are coming along for the ride as well.

PS – can’t believe I’ve pretty much done three out of the 21 weeks already – time flies when you’re having fun 😉

 

Never thought I would get excited about headwear…

Today my pre-tied scarves were released from customs (ordered them from the US as the UK websites seemed to be designed for little old ladies looking for velour turbans).

Such a small thing, but just felt the need to share!

I am so happy… they are fab and beautiful and comfy and modern – I almost cannot wait for my hair to fall out!

Now feel prepped and ready for the next stage of my journey, still not completely sure whether this will be one of the more emotional sections of the road for Joe and I.

PS – Eating lots of hummus and breadsticks again, chemo brain has gone – I feel normal 🙂

First Chemo – first week…

Well, it’s been a blast, thank you you smashing little chemo drugs.  I have to admit I have been knocked sideways this week.

I actually had felt as though I was on the front foot, after all I had a head start in terms of knowledge, side effects, terminology, appointment schedules, etc.  We have just been through six months of diagnosis and treatment with Papa’s lymphoma (that’s my Dad by the way, and moving forward, if you see reference to ‘Gaggy’ that’s my Mum – it’s what Joe called them when he was finding his vocal cords as a baby – and they’ve stuck).

Well, there I was waiting for some feelings of nausea and tiredness, I had my super special anti-sickness drugs at the ready, and then… wham!  Five hours after leaving the chemo suite I felt VERY sick and then two hours later I developed a very close bond with the loo… for the next 36 hours.  The thing is, I’ll take my experience over Papa’s any day, he felt constantly nauseous, like a three week hangover, he could barely eat.  At least mine was done and dusted (albeit dramatically) in a couple of days.

Anyway, its a good way to detox – 4 days later – 5lbs lighter and I’m back on the food again.

Now the infamous ‘Chemo Brain’ has kicked in.  Papa went on about this for ages, we almost lost patience, we couldn’t work out what he was going on about.  The Macmillan nurses talked about it.  Now I understand.  It’s a strange feeling of wooziness, sometimes I feel as though my eyes aren’t connected to my head, it took me half an hour to write a 10 line email today – I knew what I wanted to write but just couldn’t get the spellings and grammar right.

I’m waiting for the supposed dip in energy as I stopped taking the steroids yesterday… so far today the dog has been walked twice, I’ve done some work and been to Tesco’s… still waiting…

All the above proves a point which the consultants have stated – everyone’s cancer is different and everyone’s treatment is so very cleverly devised and tweaked just for them by those remarkable scientists and their microscopes (and probably lots of other science-y type of things!) when they get their mitts on the biopsies.  There’s just no knowing how it will effect each of us.

It’s like having a personal shopper, except you get a whole new life not just a new outfit.

 

Silver lining moments

Just to warn you, I’ll mention these quite a bit.  I have always believed that every cloud has a silver lining – you just have to find it.

I’ve found a few recently;

  • Confirmation of how wonderful my friends are, near and far, regardless of when I last saw them or spoke with them.  How amazingly forgiving they are of my complete hopelessness to keep in touch properly.
  • If it was at all possible, I am now even closer to my Mum and Dad.
  • Potentially I am going to get a boob reduction – for free!

This post has come about because today’s silver lining moment is that I feel as though I’ve had botox in my lips… bizarre?  I guess that means I should get the mouthwash ready for the mouth ulcers.  All these lovely little ailments which I’ve been warned about.

 

A little clarification before I move on…

As some of my email will not have made sense

When I mention Joe, that is my deliciously, handsome little boy.

On Monday this week I had my first chemo.

IMG_6849

Since I sent the first email, I’ve had a sentinel lymph node biopsy which was clear (whoop! whoop!) which means I remain as Stage 2 breast cancer.  It’s all perfectly contained in the left boob, not trundling its way around my body.

The marvellous consultants at Bristol’s Southmead Breast Care Centre had thought I would need to have a mastectomy (only left), but they’ve decided to go back to the lumpectomy option when I’ve completed the seven cycles of chemo (increased from six), rather than the whole shebang of mastectomy – You’ve gotta love ’em, well I do!  I’m holding them to a very little mention they made that they’d still balance me up at and reduce the right at the same time…

My dear, dear Daddy is also on his own personal journey of lymphoma – seems a bit unfair to us to be both going through it at the same time – but at least I know one of the closest people in my life truly understands what I’m going through.

 

 

How I broke the news..

I think the best way to get started is to just copy and paste the first email which I sent, my first BIG off load, says it all really…

(Friday 5th May 2017)

“Hello there my lovely, lovely friends,

Firstly I am sorry for doing this by email, but I can’t work out another way to tell you all at exactly the same time (as you are all so very equally important to me) and as my world has got a little complex I would still be on the phone sometime next year trying to explain things in a coherent fashion!  I am so sorry to my friends who have been trying to suggest dates to meet up, I know I have been very evasive, but I have had a relatively good reason.

Always find it best to just blurt these things out… I’ve got breast cancer.

I had suspected for a little while and was diagnosed on 13th April (after 3 hours of scans, biopsy’s and mammograms) and then had to have an extra MRI.  Was back to Southmead for results and treatment plan, etc. which was confirmed at an appointment at Southmead on 3rd May.  Three lumps have been tracked down in my left boob.

I told Joe tonight and we are going to have a very chilled and quiet weekend, it would be great if there are not any conversations in his earshot over the next couple of days, that’s why I thought I’d send a more detailed email to try and head you all off at the pass!!

The next few months are going to be a bit of a grind, as soon as I get back from Chelsea it’s into six 3 week cycles of chemotherapy, followed by an op, followed by 3 weeks of daily radiotherapy and finished off with weekly Herceptin injections for a year.  Hair will probably be gone by the end of June, so if you feel the need you may want to prep children before then – I don’t want to go scaring all our little darlings…

I know the order of op and chemo sounds a bit odd, but as I’ve learnt, they do this with breast cancer to preserve as much flesh as possible, genius!  Shrink it and then have a simple lumpectomy as a day case.  I might still be a bit of a wonky donkey, but my consultant will also consider reducing the right so I will have a matching pair again – every cloud has a silver lining… I’ll get a free boob job and be able to run for the first time without giving myself black eyes!

And now for the science bit for anyone who’s interested or who may understand – it’s official name is B5b grade 2 invasive ductile cancer in the left breast – or as I call them Lump 1, Lump 2 and Lump 3!

Also, I am so very pleased to be able to work at Chelsea Flower Show as normal, but that leads to another request… please can there be no tagging of me on facebook with little hints/motivational sayings, etc. as some of the clients crew are friends with me on facebook.  I absolutely do not want the client to know!  It’s potentially their last year sponsoring, it’s special to them and to me and I don’t want a cloud hanging over the week unnecessarily.  After that, well heck, it’s open season – no secrets at all!

One last thing…(Gosh, I’m being very demanding aren’t I…?) The Chick/Cox family are running a bit dry on good news this year, the emotional stability tanks are pretty much empty – Dad and I to be going through this at the same time is marginally unfair we feel, you couldn’t really write the book.   We are yet to work out whether we will be able to synchronise our radiology appointments and have jolly days out together to the BRI.  However, we have decided that the only way we are getting through this is with humour, you can either laugh or cry, and we’ve decided to laugh.  So, if the smiles, normality and bad jokes can outweigh the sympathetic glances, it would be very much appreciated.

A special note for the Ladies…. I consider myself very, very lucky.  This little bugger is going to be stopped in its tracks early.  I found this, mammograms did not pick it up… Please check, check, check – not just the obvious that we are told about feeling for lumps, I noticed a change of shape and very slight dimpling (and only when my arms were above my head taking my pyjama top off!), even the consultant thought nothing was there at first.  Only the Ultrasound showed them and Sharon the amazing radiologist spotted two out of three of them immediately, the MRI got the third.

Lastly, when I get my ducks (or chicks!) in order all help will be gratefully received – dog walking, child collecting, hospital drop-offs – haven’t quite worked it all out yet, but don’t you worry, I know where to come!

There, got that off my chest… (excuse the pun)

BIG hugs,

K x ”