Winning together

It’s day four and I have NOT had a single cigarette!

I can’t believe it. I also can’t believe how bloody hard it is! So far my biggest struggle is when I have a coffee. All I want is ciggie and a cup of coffee. People have said to change my drink.

I’m sorry what??

I love a good cup of coffee. I tolerate an instant cup of coffee. Either way I will drink several a day. Change my drink. To What? A green tea?? Sorry, shall I now call my blog acupofgreenteawithkirsty? Not quite as catchy really is it! Also. It tastes like crap. So no . I won’t be changing my drink.

Here’s one I made earlier!

I will instead carry on trying to not think about smoking. So if everyone could hide any reference of smoking at all that would be great. Yes. Please do move the kiosk at the front of the supermarket, and yes all the lighters in the world. They can go. My neighbour who’s cigarette I can smell from in my bedroom with the window cracked open a tiny bit at night. If you could please smoke elsewhere. The adverts on TV advertising the whole Stoptober thing. STOP. Every time I see any of those things I would gladly trample over small children, my husband and a little old lady just for one puff.

Am I angry? I don’t think so. I don’t think I have lost my temper any more than I usually do. I hope not.

I’m going to do this for my hubby and my kids and myself. I’ll fight my battle with nicotine as hard as hubby fights his with cancer. Together we will be winners 🙂

The Good and The Bad

Clinic day today. It was good. Dinner in the slow cooker so no rushing around when we get home if we are delayed. No traffic jams to sit in..good music on the radio..an almost empty car park so found a space straight away. Perfect 🙂

We had the usual waiting around scenario in which we people watched ( note to husband ; sit somewhere where you can see properly next time so your neck isn’t on a constant pivot and you don’t give yourself whiplash ) and listened to other peoples conversations.

All hubbys SATs are spot on. Called into the consultants room to discuss..um..all the normal stuff. How are you feeling? Any rashes? Energy levels ok? How’s the GVHD?  Sent away with another prescription for more steroid mouthwash to keep said GVHD under control in the hope he can have another DLI soon to blast those remaining pesky cancer cells away. The best bit. BCR-ABL is still under control. Not dropping massively but not going up massively either . Perfect. Then to top it off…We don’t have to return until the end of October!

That’s almost a whole MONTH!!!

That man of mine is a superhero ❤

That was the good.

The bad?                           Me!

I started really well. No smoking. Im sort of hoping that most people will of got bored and stopped reading by now so I can hang my head in shame alone. I’d love to say it wasn’t my fault but lets be honest. I had a choice. Dammit!

We popped in to see a friend on the way home. He is giving up alcohol for October. https://www.gosober.org.uk/ We decided between us ( in the way that someone who doesn’t drink or smoke wouldn’t understand) that as he had some booze left and I had some tobacco left that what we should actually do is finish everything that we collectively have today and start afresh tomorrow. I , in my moment of wisdom decided that actually that would be fine because the tobacco cost me money and the booze cost him.. that’s a massive waste of money. Also Stoptober is a 28 day challenge.https://stoptober.smokefree.nhs.uk/

October has 31 days! Therefore if they really expected people to succeed immediately then they would of made it a 31 day challenge. ( logical to me )

So together we will start again tomorrow. Don’t judge me. I am at least trying. And if my superhero can achieve everything he has, this in comparison should be easy!!

I promise 🙂

My D Day!

So tomorrow is the 1st of October.. Already. How did that happen??

It is also the beginning of Stoptober…for those that don’t know its a national English thing to encourage smokers to quit.

I’ve signed up. I have my pack. I have my email alerts set from my new best friend Al Murray to give me encouragement. I have a massive bag of mints and many packets of chewing gum. I have my Vapour device.

In theory I’m all set and ready to go. What I don’t have is copious amount’s of gaffer tape to tape up my mouth and to wind around my body pinning my arms to my sides to stop me from picking up the ciggs!

When nothing else  works!

I also think I’m running pretty low on will power. But this time ( I’ve tried loads like most smokers) I’m determined!

So to prepare for tomorrows first day of being a non smoker I have done absolutely nothing! The one attempt that I thought would smugly put me ahead of everyone else has failed miserably. I tried to cut down..then realised I should probably try and smoke the rest of what I have because otherwise what a waste of money ( smokers logic ) so actually all I have achieved over the last 48 hours is to actually smoke more than I usually do.

Never mind..tomorrow is a new day. Good luck to me. More importantly good luck to my nearest and dearest. I’m a moody cow at the best of times. They are going to need more luck than me.

Chit Chat

Isn’t it funny that no matter where you go people are having the same conversations that we all have with each other.

Clinic ,football, local shop, supermarket, school gates, village Facebook pages. We all chat and repeat the same things.  At clinic it is so reassuring though. We listen in to other peoples conversations shamelessly. Im not even embarrassed. Im nosy. Always have been and always will be. So if you see me sitting there quietly be assured I am most definitely listening in to your chat ;).

Hubby finds it good to know that he isn’t the only one still feeling tired, the only one who worries constantly. Last weeks listening sport was all about how one of the ladies in the same clinic as him discovered that she had leukaemia. She was tired, achy etc.. etc…  and another one who just put it down to working to hard. God don’t we all. I ache and whinge most days but I think that’s probably more to do with being incredibly unfit and my age. Still I’ll take that over the big L any day.

Anyway what’s new I hear you ask. Or not as your probably bored s###less by now Here’s the good news. Nothings new! Still tackling the gvhd in the mouth with various mouthwashes and drops etc.. but that’s it. How lovely! When its boring and nothing is happening that’s the best thing we could hope for. We should hopefully find out this Thursday hubbys latest BCR-ABL results so keep your fingers crossed for him that its still going in the right direction.

The kids are growing at a stupid rate. Must be all that food they put away. They are walking talking waste disposals. I just don’t know where it all goes. The boy child drives us mad with his grunting, messy, deodorant spraying till we all choke, leaving homework till the very last second, at least one email a week from tutors way. The girl child rarely leaves her bedroom apart from for food or to argue with the boy and likes to snap and roll her eyes at us every time she does.Who doesn’t love a teenager!!

I continue to write lists and ocd tidy and clean everyday ( when im not reading or watching the latest reality TV show) I look after my garden and have started getting it ready for winter. I’m already planning next years flowers although I’m going simple and easy to look after as I’m hoping very much that I will be in some sort of gainful employment by then and wont have as much time on my hands!( Which will mean that my lovely hubby will no longer need me so much which is also a good thing for him) I’m also determined that I will somehow learn how to do the cat eye flick that every woman I see is wearing these days. Seriously how hard can it be and why do I look like I’ve been in a fight after each attempt! 

More importantly I am determined to give up smoking. I’ve even signed up to Stoptober…I’ve had one failed attempt but I’m reassuring myself that its not yet October so that’s not a complete fail yet. Lets face it I have more reason than most to quit..and this time I will.. I hope! So in the meantime I will stop pretending to myself that I’m gonna diet and embrace the extra curves I have for now. One step at a time I reckon. Also its nearly Christmas so lets be honest,the diet will start in January along with every other person in the world.

Donor Cells and Sweetcorn

So the new school term has well and truly kicked in. I miss the kids not being here all day but I quite like the peace. The only problem is the days seem so long now. This getting up at 6.50-7 am every morning is a killer! How am I ever going to cope when I have to go back to work 😉

This whole Cancer thing keeps on keeping on though so I guess that’s enough to keep us occupied for now.

Last week off we went to clinic feeling pretty happy that it would be an easy simple in and out affair…we should of known it wouldn’t be that simple really shouldn’t we.

The first appointment of the day was hubbys pulmonary test. Completely standard procedure and luckily one of the non painful tests. Of we trotted up stairs along winding corridors to go and sit in a hallway until it was his turn.

Now I don’t know what goes on in there but hubby makes it sound hilarious! Contraptions that should only be used for deep sea diving put in your mouth . Blowing air out continually while they shout at you to “keep going, keep going” ( this I can hear from my chair in the corridor ) And when your certain that you cant possibly blow out anymore they still yell “Keep going”! How these people walk out of there looking completely normal and not like a deflated balloon astounds me. The human body is an amazing thing!

Out he comes smiling and telling me all about it. Apparently it was easier this time round than pre transplant,gotta be a good thing right! Little moments like that make me think yep..he’s winning this that amazing hubby of mine.

Our next appointment wasn’t for an hour or so, so we headed to the hospital Costa to sit and do some people watching for a while. We chatted about the next part of our day and how we’d be home in time for lunch.

See this next part we knew all about..DLI procedure. Or if you like Donor  lymphocyte infusion; If a patient who has had an allogeneic ( donor ) bone marrow transplant has a relapse they may be given lymphocytes from the same donor. This may eliminate the leukaemia cells. In my hubbys case it isn’t that he is having a relapse at all just that his wonderful consultant has decided that because of the amount of complications that he has had that the throwing everything they have at this disease is the way to go. And boy is it working. So having a DLI is a good thing in our eyes.

There are some drawbacks to it..the dreaded GVHD is the worst. Although as we are continuously told a little bit of GVHD is a good thing…fine..you itch all day long and have a beautiful looking rash all over your body! The other drawback is the smell..yep SMELL.

It is the most bizarre thing we have come across throughout this treatment. The donor cells are frozen after transplant so that if more cells are needed in future they have them there ready without having to ask for more (we have one more dose before the hospital go back to the donor asking for more please…hopefully not in a little wooden bowl like poor little Oliver ).

They are frozen in a preservative which unfortunately once defrosted and given to hubby as an infusion stinks like an open can of sweetcorn that you’d forgotten about that’s been left in the back of the fridge for at least a month..Its not a disgusting make your stomach churn type of smell..but it’s just there..lingering unwantedly. Permeating through everything..breath mints don’t help..air freshener doesn’t help..body spray doesn’t help..nothing at all helps! (Well maybe a closed door between myself and hubby would of but not for long I expect).

I’ll never forget the first time..the kids came home from school and the first thing they asked was what’s that smell?? Poor hubby..not horrible for him but knowing it’s a bit pongy for those around is probably a little disconcerting.

The good points are obviously that it blasts away those remaining cancer cells giving hubby even more of a fighting chance of beating this thing..and..it gets delivered to the ward in a darlek type contraption…there’s dry ice..special gloves..it’s all pretty cool to be honest!!

That’s the bit I was looking forward to. Now we seem to be through the worst of the treatments I have to take my entertainment where I can. (Today was watching his stitches being removed from his line site )….and then back to earth with a bump..all the forms were signed..the darlek arrived..just the pre checks to do before the infusion. Which ruined the whole day. He once again has GVHD..in the mouth. I mean for goodness sake..can someone please give this man a break!

I hate the way everything seems to be going swimmingly then BAM… nope..your poorly again..it puts a hold on to any treatments ( not safe with GVHD ) and back to weekly visits just as we had been put onto fortnightly.

So there we are..another clinic..anther new diagnosis..another spanner in the works..Here’s to this weeks clinic which hopefully wont involve 7 hours of sitting around just to be sent home again..fingers crossed eh 🙂

Oh also. Needless to say. We very rarely eat sweetcorn in this house anymore 😉

Money Talks

It’s a common but completely unjust problem that I believe affects every person and family that has cancer in their lives at some point.

We are lucky now-we are on the very last stage of claiming all of the benefits we are entitled to ( although I know for a fact that I will have to give regular updates and proof that we are still entitled for however long we claim for ).

We are lucky that we live in a country where there is a system in place to help us.

We are lucky that for the times when we didn’t have any money we had friends and family who were able to help us.

The benefits system is an absolute minefield. I have filled in countless forms for these people to claim from different department’s. I have spent hours and hours on hold to these people.

I have told them my incomings ( zero ) and my outgoings ( to flipping much! ).

I have told them who lives in the household.

I have told them the reasons for the claims.

I have told them that No, my husbands, mothers, aunts cousins daughter is not in a position to help us financially!

I know that these processes are in place for  a reason. I completely understand that the reason for the questions is so that we are not mistaken for somebody less deserving and able to work. But why oh why do I have to repeat the same answers to the same questions over and over again to different departments which I’m pretty sure are all under one roof!

I know some people looking at my hubby ( strangers ) might not even see that there is anything wrong with him. Might be angry that he claims certain benefits when he can walk, talk, fend for himself. Wonder why I, his wife, doesn’t work and claims carers benefit ( which to be entitled to you have to care for said person 35+ hours a week to get the paltry sum of £62 per week-try working full time and doing that! It also definitely falls below the national minimum hourly wage! ).

What they don’t see is the nausea from the tablets and oral chemo daily.The extreme fatigue which some days stops him being able to get out of bed. The frustration at not even having the energy to tie his own shoelaces some days. The fact that he has to be driven/accompanied everywhere because of the seizures caused by the leukemia that spread to his brain.

This is why I claim everything I can to keep him and my children in their home. Heating , hot water and food on the table, and me here to look after them all.

The help is there, you just have to look really really hard. You have to research and scroll through pages and pages of government websites. You learn that one benefit may cancel out another and make you worse off. You learn that one benefit might open the door to another to help make life a little easier.

The most frustrating thing is why should anyone with cancer have to jump through hoops to be helped. Why do they need to know the entire background history of the whole family.

One day I really hope that someone with a little sense realises that people who are ill from cancer shouldn’t have to prove that they are in fact ill.That there will be one set of forms to fill in with all the relevant question and that they are sent to one department that sorts it all out.

That’s what I really hope. In the meantime I will continue to send proof that shows my hubby is ill. Will continue to fill out forms each time they end us a new one.

And I hope that the people we know will continue to understand why we are having to claim benefits and be a part of the “system” .

I hope more that people we don’t know maybe learn to be a little less judgemental and maybe not judge a book by its cover.

He is ill.

He does have cancer.

What you see is him laughing in the face of cancer and living his life  ❤

Goodbye Summer

Hi! I’m back.

Wow, it’s been a long time since I’ve written. The summer holidays are over. The children are back at school. The exercise bike is out to combat summer indulgences!

So what’s been happening since my last blog…well..not a lot really. Which I have to say is wonderful. We are still going to the hospital regulary for hubby to have his check ups. His counts continue to stay stable. His BCR-ABL is now down to 0.004%… AMAZING! And he has finally had his Hickman line removed. That in itself is a major step up in his recovery process. Another step towards normality. He continues to drive me mad with his eating habits (completely not his fault and I try not to stress ) and we have just 6 days till we do our 5K walk. Hmmm that should be interesting seeing as the daily walks quickly went to pot. Lets just say torrential rain in August is not a winner for a stroll.

In other news I finished watching all 8 seasons of Charmed and had to forcibly remove myself from the sofa so I could do things in the real world.. like cook, clean, speak to real people 😉

We have been told that hubby should be able to return to work in January next year so in preparation for that I have started to de-clutter my house ( it gives me something to do other than watch TV ) I have to say im impressed with myself..so much rubbish has gone. The kitchen cupboard’s now only have in date food in not flour that went out of date in 2012! Even the garage got cleaned out. I can see floor in there and could even fit a car in there now if I wanted to!

The de-cluttering and cleaning also enables me to have to NOT think about WHAT I AM GOING TO DO WITH MY LIFE. Hubby has a job to go back to whenever he’s ready thanks to the great company he works for. I on the other hand have nothing. I’m sure I will get a job..it doesn’t matter what I do as long as we have the money coming into the house but my problem is I have NO idea what I want to do. Im sure that I will find my way at some point but for now I will carry on my with my spring clean (yup just a few months late) and possibly start thinking about Christmas ( Im lying… I already have a list 😉 )

I’ll also finally get round to typing up another blog that I scribbled down on some scraps of paper ages ago..

Once You Pop

I’ve not written much for a while because of the normal life distractions. Namely in my case (also in order of importance) Harry Potter films, my birthday and the school holidays.

I can’t believe that finally at the grand age of 36 I have watched ALL the Harry Potter films..in order..in just a few sittings (about 19 hours of viewing for those that are interested). Unfortunately it has now ruined my normal TV viewing. I fully expect Danny Dyer to whip out a wand and start throwing curses around in the Eastenders Queen Vic! I can say though that I completely enjoyed them and I’m not sure why it took me so long.

The reason I decided to start watching them is because it was my birthday and these days celebrating things like that definitely go on the back burner. Honestly though it was brilliant. I stayed in my pjs all day, ate whatever I fancied and gorged on movies. To top it off I woke the next day without a hangover and completely relaxed.

We’ve had a couple of hospital visits recently but nothing to out of the ordinary ( is any of it normal) Some intrathecal chemo for hubby, some blood tests and some (more) talks of possibly removing his Hickman line.

Then before we knew it the children’s summer holidays were upon us. Six and a half weeks of freedom for them. Six and a half weeks where I for the first time get to be at home with them (anther silver lining ). We have no plans, no holidays booked but the knowledge that my alarm won’t be set for some ridiculous time each morning lifts a weight of my shoulders. I can be here to make sure that the cupboards aren’t repeatedly ransacked by 2 non stop eating teenagers (and their friends). I will have all the time in the world to make sure they have everything ready for next term (I’ll try not to leave it till the last min as I usually do). On hubbys good days maybe we will venture out locally. I hope so.

In the meantime I am trying to do something about my weight. Not for anyone else as I really am past caring what the majority of people think but I’d really like to fit into my favourite jeans. 1. Because I really like them and 2. Because money is to tight to keep buying more clothes ( I’ll rant about that in another post!! ) Though most things I’ve tried so far aren’t shifting the pounds. I fear I might actually have to do some real exercise. I blame hubby. All that comfort eating has to be someone’s fault (eating a whole tube of salt and vinegar pringles in bed while he was in hospital was pretty much the normal for me at that point ) and until he’s recovered I can blame him as I can still outrun him for now , even if it is a slightly wobbly run  😉 

Every cloud and all that….

Apparently 10.30 pm is the best time to start a conversation about all different types of cancer according to my daughter! Questions like…Is it something to do with genes? Can men get breast cancer to? Agghhhh!!

The thing is although I’m no expert ( I pretend I am sometimes, feels like I am most of the time ) I’m glad that what’s happened to us as a family has enabled her and my son to be able to ask whatever they want any time they want. ( Although if either of you are reading this a few minutes before lights out is probably not the best moment, maybe ask in the morning? 😉 )

So there are definitely some good things to of come out of this. I get to spend so much more time with my family, just what a teenager needs! I get to read loads.

I also amazingly have started gardening. Sounds silly but honestly its given me so much pride. I have a beautiful, colourful garden for the first time in my life! Not only that but I grew the majority of it from seed. I’ve never been that person, I’ve not really taken any kind of notice of it unless the grass needed cutting ( which I would then get hubby to do ) But these days I can spend hours a week pottering around out there .( and taking pictures, there’s about a million on my Instagram!) It calms me ( when I’m not being chased by bees wasps butterflies etc…ugh! ) and gives me a sense of achievement. It also gives me something to do in the many hours we are stuck at home because of the cancer.

As well as the garden I’ve spent more time in the kitchen (much to my family’s horror) Again I’ve never shown much of an interest in cooking, eating yes! I LOVE to eat. Food is amazing and I wish I didn’t eat quite so much but hey ho! I’m not saying I’m any good now compared to before the cancer ( amazing how everything is always before and after these days! ) but I’ve certainly experimented haha. Some were complete disasters and went straight in the bin others were ok ish but a few things have definitely become new family meals.

Pinintrest has become another new thing I like to scout around on for ideas. My newest thing is to save glass jars and wash and reuse them. My daughter now has a dressing table with a row on all to hold her many, many make up bits and bobs, some have been turned into display jars for photos, ones even been used to display my own home grown flowers!

I’m not sure if this is a good thing..my levels of sympathy for people have become seriously compromised. I quite honestly couldn’t care less if you have a cold, man flu, a bit of a scratchy throat, a hangover!! Sounds awful doesn’t it? Don’t get me wrong. I have empathy..by the bucket load. But unless you have something properly wrong with you I am truly short of sympathy. After watching my hubby battle his way through pneumonia, transplants,treatments I can’t quite find it in myself to ask if your ok there with your cold.

And I guess this leads me to the best bit. I have stopped caring what other people think. Not my family or my children, but that person that looked at me funny because I was wearing shorts out in public and I’m not anywhere near skinny enough to pull it off. That person that stared at my hubby because he was wearing a face mask out in public ( he’s wearing it because of your germs not his!! ) That person that stared at him when he was completely bald after chemo.

None of it’s important anymore. As long as I am honest with myself and those I love and me and my family are happy..nothing else matters.

They say every cloud has a silver lining….and it’s true.