Life after the Bell… what next?

Well active treatment is over now so what happens next?

So many of you reading this blog are probably asking the same question? Does the blog end now you have finished treatment? Now it’s all over?

The answer is no bloody way, absolutely NOT!

In fact I know this blog is going to help play such a big part in me coping with the next part of my journey and I know it will help so many others through theirs, as well as helping family and friends of others going through this.

Active treatment aka Surgery, Radiotherapy (aka Rads) and Chemo are only part of this bloody roller coaster

I am told the toughest bit starts here……

Well Lenny if you can hear me from your jar, then you best get ready cos this Yorkshire lass is stronger and tougher than ever before!!!!

“Oh yes I am”

“Oh no you’re not”

“Oh yes I am”

Sorry had to get a bit of Christmas panto in there!!!

So why is this is this next bit tougher?

Well let’s start with what’s happened the last six months.

As I’ve said previously it’s been a whirlwind of treatments, appointments, life changing decisions and all this time I’ve had my medical team by my side, particularly my superhero the Prof. After you finish that your “comfort blanket” is taken away and your pretty much on your own with the exception of the odd review.

Shit bollo£ks what happens now? Panic can start to kick in!

The fact is the person who started this journey isn’t the person who stands here today and the outside world can feel like a scary place.

I know I am not alone with my worries and anxieties going into the next bit, even the strongest and most positive of us have apprehensions……

How will I cope with the side effects of the 10 year tamoxifen?

Will I turn into full on little miss mood swings?

Will I drive my “Rock” away?

Will I ever get over this fatigue?

When will my hair grow back?

How will I cope going back to work full time?

Will I ever be “great” at my job again?

Will I ever be able to run 10k again?

And last but not least

What IF the big C returns?

Pretty scary list right?

The truth is I know for a fact I am a much stronger person coming out of this. Over the past few months I’ve done everything I could to give me the best possible chance of coming through this journey in the best physical and mental state in preparation for this next phase.

Yep planning and preparing is what I do best!

It’s the main reason that I saw two important people this week, my gp and my clinical psychologist.

They won’t ever be my comfort blanket in the same way as the Prof but I know how much I am gonna need them over the weeks, months and potential years to come.

For me it’s all about being proactive with this, at the moment I feel on top of the world, ready to tackle anything but there are little voices that came inside my head at times, yep we call them “wobbles” and I want as many tools and tricks to help ensure those wobbles keep low on that bloody wobble-o-meter.

Right – time to finish writing those christmas cards!!!

 

lifeafter

 

 

15 sleeps till Santa!

It’s beginning to look a lot like Christmas and only 15 sleeps till Santa!

15sleeps

It’s Sunday morning, day 7 since my last chemo and there is snow on the ground, it’s a perfect scene from a Christmas card.

I feel like I have been waiting for his weekend to happen for so long, having our little family all together again and decorating the house ready for Christmas.

When I first began Chemo we didn’t know if I’d be done for Christmas and we were waiting on my Onco Dx test. But here we are, it’s the 10th December and all though the side effects are still looming, as Yazz said in the 80s “the only way is up”

To be honest, it’s been a bit of an emotional week, I still feel like I’ve got a lot of “release” to get out.  I am not ashamed to admit there have been a few tears, I’m finding it’s a bit like a grieving process although I can tell you for sure, I have not grieved Lenny the bloody lump for 1 minute!!

The last few months have been a whirlwind, there has literally been no time to “think”, to “digest” to live.  I’ve been on auto pilot for months and now I think reality is just catching up with me and I’m now actually starting to process in my chemo head what has happened.

The Chemo drugs obviously play a part on your emotions and at the start of the week I had the “high” from finishing Chemo combined with my steroid mates!

Actually, the insomnia hasn’t been so bad this time and I really believe it’s the essential oils I’ve been using. I’ve been taking a natural herbal complex 30 mins before bed and it has worked wonders!

On Thursday, I took my last ever steroid……I hope no one was listening to me “talking to myself”, I was in fact saying goodbye to those little basta$ds who have tried to mess with my body and mind for weeks!

Truth is I had a little leaving speech for the steroids, not that they deserved something so grand but it was all about “closure”!

On Friday the steroid slumps began, Yep it’s that day I feel like I am drunk without the booze!

Thank the lord that Super Nanny and Super Papa came to the rescue and took the little man to his Christmas fayre!

Originally I had planned to take him to both, I was gutted as I’d been so involved in organising the fayre but I knew I could not put myself amongst 100 little people’s germs this close to Christmas.

I will make up for it next year, little man, I promise!

Bless – He brought me back loads of goodies and Papa made me a video of his visit to Santa! – It really melted my heart and it was the next best thing to being there!

Saturday was when the full on steroid slumps took effect and to be absolutely frank I was such a horrible moody cow in the morning.

It hasn’t helped that this chemo cycle I’ve been having constant and I mean constant hot flushes and night sweats that have got me down and worn me out   I also know this could be my life for the next 10 years. Sometimes it feels a bit overwhelming but hopefully they will get better and on the grand scheme of things it’s a small price to pay for being here!

I was so grumpy thought that so I was “advised” to go to bed before I did damage, that Rock of mine has taken some crap off me over the last 24 hours!

The little man has been an absolute pain in the arSe and I have zero patience from the drugs. I can’t help but feel guilty, but I know it’s my worst weekend and strong gem will start to return in a few days!  As I actually write this blog it is like deja-vous of the last cycle and I struggled the same on exactly the same part of the cycle.

But this time, there won’t be another cycle and omg that feels sooooooo good!

So as me and little man sit snuggled up having cuddles at 6am, waiting for the other half of our little family to get up, I look up to the snowy sky and feel so blessed to be here with my beautiful little family.

Ring that Bell, I’m a Chemo Graduate!!!

 

Christmas jumper – check

Reindeer antlers – check

Huge cheesy smile on face – check

Cancer Survivor book -check

Yes someone is a bit “de mob” happy that it is my last Chemo today!!!  Just gotta pass these final bloods today.

I’ve written my list for Prof too, top of it “Can I have a letter so I can have spa treatments again?”

Yep, getting my priorities sorted! No more questions about these lumps, it’s about moving forwards and we desperately in need a little spa break next year!  I’ve missed them so much and Spa’s don’t seem to touch you with a barge pole when you are labelled with the big “C – yes it does pi$$ you off at times but hey, soon I will have that magic “Yes I CAN  have a treatment” letter – take that to cover your ar$es!!

Amazing how cancer makes you less tolerant to Shit, I am still a nice person….honest!!!

We are the first as always to arrive at the Chemo ward and I am literally skipping down the ward with my Christmas jumper, reindeer scarf and antlers.  Hubby says people will think I am a weirdo but quite frankly I don’t give a monkeys!!! No one is taking the smile off my face today!

I unpack my bag, and get my bell out ready.  There is a story behind the bell, my Dad got it Hubby as a wedding present so he could “ring me for attention”!!!! Yes my Dad likes to wind me up but thankfully Hubby has never rung it, he knows better!!! It may be small but boy is it loud!!!! Bit like me really 😉

Well an hour later and bloods are back and we are all set to go!  Being an “analyst” I have asked to see them, oh you can’t take the numbers geek out of me.  You know to say I am on my final chemo by bloods are still pretty damn good! Must be those oils!! – what a bit a frankincense does for your system!

Nurse does my assessment, we have a laugh about this month’s side effects and my calls to the chemo line, oh you really do have to laugh it off!

Then the Prof makes an appearance, he’s early today, good job I am prepared!!!

“It’s my superhero the Prof” I shout!!!

And no Rosie I didn’t not ask if he was wearing his super hero pink pants although I did opt for pink pants today – it had to be done in celebration!

A few months ago I would never had made the “Superhero” comments but Prof knows me and I know the Prof.  Feel so thankfully that to Prof and the team I am certainly a name and not a number!

I thank him for arranging the CT scan and for calling me so promptly with the news, it has helped me more than I can ever imagine!

Then I ask him whether he will sign my cancer survivor practical handbook – he isn’t the author it but I feel it right that he signs it for me.  I don’t look what he has written, I will save that for later!

We agree I will start Tamoxifen early in the new year and I need to make an appointment to see my GP – good job I am so organised and have arranged it already!

I will see him again in Feb, wow seems like a long time, a tad daunting in fact but I’ve prepared for the brief goodbye.

Time only for one last thing – a team photo.

 

Team “we kicked Lenny’s butt photo”. Prof, Me and the 2 amazing nurses! It’s a keeper to cherish!

His smile is almost as big as mine today and then we say goodbye ☹

The chemo bit passes quick, at the end of the first lot, the nurse tells me I am not having the second lot today – Prof has taken it off, probably due the to CT scan results and I have read that actually 3 cycles of the same drug are typically the most effective.  I am so pleased as the second drug always does weird things to my head and sinuses when it goes in!

In no time at all I am packing up, given my thank you cards and gifts to the Nurse’s

Time for the grand finale……. RINGING THAT BELL!!!!!

I rang it hard, hopefully you all heard!!!

I pack up the bell and get out my book…. I turn to Prof’s writing….

“It has been a pleasure looking after you”

That comment really did mean so much….

Thank you Super Prof, love your very proud and happy Chemo graduate!!

ringthebell.png

 

 

I’m a survivor!

Well it’s been a roller-coaster week but I can now officially say I have kicked Cancer’s butt!

I’ve had one of the most nerve racking weeks of my life even though I have “played the nerves down” at times!

On Monday, I went to see my superhero the Prof about the bloody lumps on my neck.  Yep I am now known as “Alice the camel”.

I told him how I just could not move forward without knowing what these lumps were, it was supposed to be my last chemo on Monday, I should be ringing the bell proud but at the back of my mind was a niggle about these 2 lumps.

He still believed the lumps were reactive in my neck but he also got how worried I was and so he suggested I had a full body CT scan so we could rule out any unwanted “guests”, guest meaning Secondaries which would mean my cancer could no long be cured. It is the last thing any cancer patient wants to hear.  I knew it would be then a waiting game just like when I was waiting to hear about Lenny.

During the week I’d been trying to forget about it as I thought it would be Monday when I got the results, but on Wednesday I got a call from hubby reminding me that the Radiographer would be reviewing my scan today and asked if I had chased for the results.

I knew that meant indirectly he was anxious, of course he was anxious, I know all my poor family have been on the edge of their seats.  Part of me wanted to go away and hide but the other part of me wanting to face the truth whatever it was.

So I called the Prof’s secretary who is an absolute legend herself.  She always pushes for results and when she says she will do something I know she will.  Its all about Trust, life is all about Trust.  I trust her and I trust the Prof.

It’s 4:30pm and she says the results are usually reported after 5pm, Prof was in consultations until 6:30 pm and then she would get him to call me.

6:30 came and went, yes I am so impatient but I know he is always running late, not because he is inefficient but cos he genuinely cares about his patients.

I talked myself out of him calling.

“Maybe it’s bad news” I thought…… “he doesn’t want to give me that kind of news over the phone” said the little voice inside my head……… Yes even Little Miss Positive has negative thoughts, I’m human after all….

Then at 7:15 the phone rang, unknown number, I ran as fast as I coulc, it could only be the Prof!

“Your CT scan is clear”

It took a few seconds for it to sink in what he said – not sure if it was chemo brain or I was in shock!

“The lumps are showing on the scan but they are normal lumps” he continued

“Thank you so much for calling me, it means sooooooooo much and now I know I can now move forward”

Apparently, there is some inflammation on my left lung but that is from the Radiotherapy and is nothing to worry about.

The superhero Prof saves to day again!

The timing could not be better, my mum and sister-in-law were here.

“It’s clear”, I shout, my mum came running up and gave me the biggest hug then we both burst into floods of tears!

“Team Kicking Lenny’s butt” has declared victory!!!!

I am now officially a Cancer Survivor!

Bring the last chemo on!

survivor

Winter is coming!

Omg it’s bloody freezing outside! It’s Sunday afternoon and I am feeling very thankful for a warm and cosy house!  We had the chimney sweep man aka Dick van Dyke come over in the week and hubby has just lit our first fire of the season. Nothing beats a real fire 😊

fireplace

Winter is definitely here, although my 4 year old keeps correcting me and saying “winter is on its way, it’s not winter yet Mummy”! Ffs he is his father’s son, “technically” he is correct, bloody perfectionist, always correcting me!

So thankful tomorrow I am seeing the Prof, I have been trying hard not to “think” too much and have been a good girl and stayed away from my enemy google!

We’ve had a lovely family weekend, we had breakfast out yesterday and little man managed to not “create” which always makes things so much more enjoyable when you don’t have to deal with a 4 year old having a strop in public!  He even behaved having his hair cut and we seem to have got over the phobia of visiting the hairdressers – hats off to my amazing hairdresser, Fatu!

I even managed to gather some energy to play a game of monopoly with little man. I think I shocked him when he asked if I could play a game with him and I said “go on then”.  I have however discovered though he is a cheat and makes up what the dice says so he can land on “Community chest” or “Chance”! He also reckons you can just add a hotel and not have to buy it. I think not little man and if you want to play again then there will be no cheating!!!! Mummy does not like a cheat!!

I did have to make a call to the Chemo line, not bowel movements this time but a fricking rash on my cannula hand!

It started as something that resembled a burn but seems to be travelling up my vein. After “consultation “with my hubby that I wasn’t imagining it, we decided the best option was to call the chemo line.

“Oh I think I have spoken to you before, aren’t you the one with all the December birthdays”

Ffs I can’t call anywhere these days without getting recognised 😉

I explain the situation and she says she’ll get the sister to call me back.

I was actually in the middle of cooking dinner and have already got my tactics sorted to avoid going down the hospital!  I could do without a Saturday evening visit there, it’s an hour to get there and Strictly starts in an hour!

I do put a “plan b” in place though and my friend has already said it’s ok for little man to go for a sleepover if we need to go to the hospital , it’s at times like these you realise who those special people are in your life!

Thankfully when the nurse calls back she agrees to accept a photo rather than us make the 60 mile round trip and after reviewing the rash decides I can just keep an eye on it.  How technology has hanged the world eh? And saved my sat night tv watching!!

I’ve decided I will “plan” for my Prof visit in the morning.  I’ve got a stew waiting for me and cuddles to have after that with the boys.`

Credit card battering

It’s Black Friday which could be very dangerous especially with these recent spending habits! I’ve had a good week side effect wise and apart from fatigue which is expected I have felt “normal”. No throat infections this time but I still have these 2 neck lumps, yes they are still bloody there and unfortunately still “messing” with my head although failing to produce a big wobble on the wobble-o-meter but enough to be messing with my sleep!

Thankfully the voice of reason Nanny Noble is here and we agreed I would call the chemo ward to let them now my anxieties and see if I could get in with the Prof at his next clinic.

Once I made the call I felt a lot better, like I could “park” itup and enjoy our girlie day, all booked in for Monday.   I tell you nothing is gonna stop us having some Black Friday retail therapy!

creditcard

I really don’t need any encouragement these days! By 7am I had already spent a small fortune online at John Lewis. I was only supposed to be buying a soup-maker with vouchers, I really don’t know how 2 dresses and 2 pairs of shoes “magically” ended up in my basket!!

I’d decided to have a sneaky “peek” at dresses, it is actually well over a year since I purchased my last dress. We are also going for the last (chemo) supper on sat night and of course I need a new dress, obviously!!!

I have even allocated funds from the birthday / Christmas money pot do it’s all been budgeted for, see the accountant in me is still there!!!

I was so distracted and slightly ocd about needing to place the order before they ran out that I failed to notice that my 4 year old had snuck 2 “snacks” into the bed. ffs I hope they were “crumbless” snacks and not biscuits otherwise hubby is not gonna be happy when he gets in bed later!!!

In my defence, I seem to use that so much lately,  I’m not even in court and there is no lawyer in sight to protect me, actually I take that back my 4 year old is the world’s best negotiator, mostly down to the fact that he asks for what he wants and doesn’t give a shit about hurting anyone feelings or offending them with his requests !

……Where was I? Oh yes in my defence I ordered 2 sizes of each, need to edger my bets that one of them fit so half the order will be going back!

This is all before Mum and I have even got out the door, infact Mum is still in the Land of zzzzzzz !!!

Mum and I visit our favourite shop, a little boutique type shop which is so reasonably priced in the next village. We come out with quite a few bags, best thing of all they are hot pink bags, you know me and my pinkness.  On the down side, they are not the easiest thing to hide from the hubby 😉

I don’t know why I say that, in reality he doesn’t mind what I spend, I think it’s the Yorkshire “tight with money” in me I am certainly not right with money I just like value for money!

Mum and I then head to the garden centre for a spot of  “ladies that lunch” and grab a few festive pressies before she heads back for the train.  We’ve had a lovely 24 hours and as drop her to the station I can see she has tears in her eyes. I’m fighting hard to keep them back, instead I phone Rosie as she needs radiator advice, multi-talented I am, accountant by day, plumber by night!! Hopefully the call will distract me (for now)

That evening hubby brings home fish and chips, I’ve been dreaming of them all week and he’s even brought me a can of shandy. It is the law in this house with fish and chips to have a can of bitter shandy!!

Mine also come with mushy peas, unfortunately my hubby does not share the same tastes ( bloody southerners) and the little man is following suit . “Yuk mushy leaves” he says!!!!

Omg that felt good, I am stuffed and I’m fading, fading fast, hubby prompts me to go to bed, by 8pm I’m in the world of zzzzz, Black Friday has worn me out!

Time to forget about the neck lump and focus on getting some energy for a family fun weekend!

Never smile at a Crocodile!

Well Little Miss Sleepy hung around into Sunday but was joined by Little Miss Snappy, the snappiest crocodile in town!  They say sleep deprivation does crazy things to you and I sure have been snappy especially with the boys!

crocodile

Little man really wound me up at the weekend and it wasn’t his fault ☹ The excitement of having Auntie J stay made him turn into a one hyper 4 year old which normally I would “take control” over but I was so exhausted that I had so little energy and zero patience.

I can’t help but feel guilty, guilty for shouting and guilty for not being able to be the mum I usually am.  I know the “logical” Gem would tell me to not be so stupid and as Rosie reminded me the other day “Gem, most people are in bed in the first week of Chemo”

I know she is right, it’s just some days are so emotionally hard especially the weekend when you want to do “fun stuff”.

I really hope little man doesn’t remember me being like this and all the times he asked “Mummy, will you play with me” to which I have had to reply “Mummy is too tired right now” ☹

I have to remember that this is short term, I’ve only got 1 more round of chemo, 1 more round of this shitty poison in my body then I am done!

I’ve also snapped at my “Rock”.  I did apologise straight away and I know deep down he knows it is the fatigue talking and not me.

I was determined though not to over-do it and if I felt sleepy that I would “Nanna Nap”.  I only had 3 things to do on my priority list on Sunday.

  1. Sleep
  2. Iron Little Man’s school uniform (yes still determined he will not go to school scruffy as the Governor’s son)
  3. Go to the Pharmacy

Yep, another  bloody trip to the pharmacy for constipation remedies!  Honestly these days I think I have the body of an 80 year old – Just call me Nanny Davie!  The side effects are worse this time as far as that is concerned and I had to call the Chemo line for advice.  OMG it is soooooo bloody embarrassing having to talk about your bloody bowel movements!

I thought I was done with talking about sleep and poo when little man got potty trained but this takes it to a new level!

Cancer, you are the gift that keeps on giving!

I really can’t complain though, things could be so much worse!

I know I owe my “Rock” big time for putting up with me over the last few months and once Chemo is over he has the joy of dealing with me being “slam dunked” into a menopausal woman!  Poor guy, he didn’t sign up for that when he married his “younger” lady!.  But as our marriage vows say “For better for worse, for richer for poorer, in sickness and in health”

This cancer journey certainly is a traumatic event and it does put a lot of strain on relationships.  Over the years we have had ours “tested” which thankfully has made us so much stronger dealing with this.  The one thing I have learnt is the importance of communication, communication, communication!

This rollercoaster is so bloody hard, for both of you.  I know it is hard for hubby especially balancing me, work and all the other stuff that we deal with in our life.

Thankfully I know that my Rock recognises Little Miss Snappy is only here for the short term and the Yorkshire brunette he fell in love with will be back soon.