A goodnight message

Every night before i go to sleep i send hubby a goodnight message.
I know he won’t see it or even know that I’ve sent it but what I’m hoping for is that by some miracle he will somehow get better and be able to read them.
It’s like a diary of the things that have happened every day. Of how proud i am of him. Of how me and the kids miss him.

Its been 4 weeks and 1 day since he was admitted again. Its been the longest weeks of my life. The transplant was a breeze compared to this. I can tell you anything you want to know about CML but this whole brain thing has got me stumped.
Google has not been my friend. Its so stupidly rare that all i seem to find is medical papers ( one from Japan so that was helpful! )
All i want is a tiny bit of understanding but it seems that this time even that is being denied to me.  The brain is a complex crazy thing!

So all i can do is sit there and try and help him. I watch him for hours and hours every single day trying to anticipate what he needs.

He’s bedbound. He struggles to communicate. He cant feed himself. He cant see to grab his bottle of water and if he does by some stroke of luck then he cant drink by himself. He needs help for the loo. He needs help to turn over in bed.
And on top of all this he is in constant pain. We all moan when we have a headache but this certainly puts that into perspective.
If he can get through this i fully expect him to be hooked on opiate medicine.

People/friends/family ask how i am on almost a daily basis. I say I’m fine. It’s the done thing isn’t it? I know I’m not fine and so do they but what can anyone actually do if i was to say I’m not ok.
It just makes the conversation uncomfortable for everyone. And on a very basic level i am fine. I look after myself as well as i can so that my children and hubby still have me to look after them and then when i can finally fall into bed emotionally drained and physically exhausted thats my moment when i don’t have to be fine.

I know i normally pepper my blogs with pictures but today i don’t feel like looking for a funny anecdotal picture..

I hope all the people that know me will forgive my lack of communication and that I’m doing what I have to to get through each day.

And more than that i hope everyone enjoys Easter and never takes for granted the time they get to spend with the people they love.

If this has taught me anything it’s that you really do only have one life. Take a moment to think about those less fortunate then go and grab life with both hands.

Xx

Endurance

It struck me today as i was driving towards the hospital that the human body is an extraordinary thing!

We all walk around not thinking of the effort our brain has to put in to enable us to put one foot in front off the other.
We breathe freely without thinking how we know to draw the life saving oxygen in.
We eat freely savouring the flavours over a fancy dinner or if you’re more like me stuffing whatever comes to hand to satisfy our hunger.
We use our eyes every single moment of consciousness but most of
us arent even really seeing what we are looking at.

We take our bodys for granted every single day without a thought of how we would cope if we lost control over it.

I hope no one else i know ever has to find out what its like to lose the control.

Hubby is still in hospital. Today is day 14. He’s angry. I’m angry. The kids are..well if I’m honest they are ok as it seems children are a lot more accepting of situations. But they miss thier Dad.

We are currently waiting for radiotherapy to zap these brain tumours into submission. We also still don’t have a name for the tumours although I’m thinking i might name them myself in the absence of the biopsy results. I’ll have a think 😉

The steroids that hubby has been put on are little short of miraculous. The pressure in the brain has been reduced enabling him to be able to walk with support. They have stopped the bone crushing headaches. They have reduced the tremors to almost zero.
Better than all that they have increased his appetite. Almost to the point where i cant keep up with the amount of food he wants.
We know that the steroids are just masking the symptoms and that the real medicine is the radiotherapy but i truly believe that feeling better in yourself is half the battle.
So whether this is ‘fake’ feeling better or not it’ll do for now.

The endurance that this man shows every single day truly amazes me. The battering his body has taken over the last almost 3 years shows a core of strength that most people can only dream of having.

The survival instinct is in all of us and watching him every single day is proof of that.

So if you think you’re having a bad day try and remember that someone somewhere is fighting to stay alive stuck in a room without fresh air or the freedom they desire and be truly thankful for the steps you take unaided the air that you breathe and the world around you.

🌅🌅🌅🌅🌅

Even in the dark times its possible to find the light. ❤

A Brief Respite

Hello 🙂 I’ve been away a little while now haven’t I!

So what’s been happening. Hmmmm i gave up the ciggies..I had a wonderful Christmas.. I stopped thinking about hubbys illness 24 hours a day.

And all of that seems like a million years ago. We are back in hospital 😩 Back on the same ward..and with a whole new ballgame to battle.

I stopped writing because life took over. In a really good way. Hubby was getting better and better every single day. I also got sick to death of talking about Cancer. I’m sure, as a friend in a similar situation said ,that people’s eyes would glaze over as soon as the C word was mentioned.

And now I’m back. Which only means one thing. He’s sick again. I find writing about it cathartic. It’s almost as if once i commit words to paper ( well screen in this case! )i feel like a small weight has been lifted.

As i type hubby is laid in his bed next to me hooked up to the ever present pumps and monitors. I can hear the nurses and other visitors chatting away outside of the little bubble we now live in. He sleeps mostly. He doesn’t eat. He doesn’t drink  So those common battles have once more returned to be fought yet again.

And i sit and wait for answers.

How did we end up back in? It was a routine scan..a nothing out of the ordinary day. A day that we should of been told that yup. You can stop the anti seizure meds. Only the day before ( 1 week and 2 days if we are keeping count ) we had been told that things were going ok. We had no idea.

He has numerous tumors in his brain this time. Are they related to the CML? I have no idea! Do the doctors know? Nope not yet..when will we get answers. Treatment? All of these questions tumble around in my mind while i sit. ( on quite frankly the most uncomfortable chair I’ve ever had the pleasure of sitting on )
All i know is that there were no signs this was happening. And now only a little over a week later he is unable to even walk to the loo. 
He has had a brain biopsy and is now stapled back together. So we will wait and we will see.. and as always. We will fight.
I hope i can be as strong a fighter as i was before with him. He needs all the help he can get. To have to face this once was horrible. To have to face this again is devastating.

For today i have no more words.
Tomorrow is a new day 🌅

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  ❤