Some good news and some bad

Well another appointment passes us. I will start with the good news. Darrens white cells have dropped from134 to 84! Its really good news and means his responding well to the 2nd lot of chemo. We were really placing all our hopes on this drug as its our best chance of a fairly normal life living with cancer.
Bad news is Darrens liver function isnt good and is getting worse every week. :( The doctor doesnt know if its the drugs are not but looks likely as his liver test when first dianogised were good. They have said they may have to change his drugs, we really dont know at the moment. We have to wait another week and hope that his liver starts improving otherwise we have some tough choices to make :(

Oh and to top it off nicely, my sister had come over the watch the girls as Tanisha is still unwell so not at school. She parked at the bottom on my drive, slightly on the grass between drive ways and got a parking ticket!! I could have cried :( I have said i will pay the £35 as she was only here because she was helping me out.

So overall a crap day so far, I feel like crawling back into bed and hiding under the covers till this is all over. Anyone want to join me??

No more bugs please

Well another weekend has gone past. We have been stuck in the house all weekend, as Tanisha is now not well. She has a sky high temperture, complaining her neck and head hurts and being sick! Pleasures of living with cancer is I cant ask Darren to deal with it. I was up countless times in the night and am now wondering how to sort things for tomorrow, but thank goodness for sisters.

Darrens feeling so much better on this new chemo. He is no where near as tired and not as grumy either!
We are hoping for postive news tomorrow, as we need this chemo to work. Also need to know his liver and spleen are improving.
I didnt post yesterday as I planned an early night. Crawl into bed about 8pm, fell asleep and then the phone woke me at 8.40pm!! Then I couldnt get back to sleep. I really should unplug that phone!

So just to recap, we were not having anymore sickness in this house!!
POstivie thoughts and prayers for tomorrow people :)

crying?! why?

I went into work today. Was nice to see everyone and keep a little busy, although after doing a group I didnt get much done, I couldnt stop worrying about Darren. I have a wonder work and they have been great, I am so glad that they have been great as i couldnt deal with the stress if they werent.

I decided to get myself and Darren new mobile phone contracts. Our old one was up for renewal and we have terrible signal here so brought a great one on Tesco.com with great deal yesterday!!
However, I get a message today saying it was an error on their website and thet will not let me have the deal I wanted.
Well I called, I got stroppy, well as sproppy as I get which isnt great, they point blank refused to help me and I promtly hung up and burst into tears!! I then stood peeling potatos for dinner with tears that would not stop. Its seems so silly to be crying over a phone, but im sure thats not why :)

I went to a friends jewerlly party tonight and brought some pieces to cheer me up and was lovely to be me for a bit, as there was little talk of cancer.

Darren is feeling good today, alhtough his gone to bed early, he looks tired too. He keeps saying he can do thing and I keep telling him he cant over do it just because he feels good today, he may well pay for it tomorrow.
He has to go for blood tests tomorrow, I am hoping and praying we get a good result on monday. I so hope that he has started to respond to second lot of chemo, his long term one, so we can carry on moving forward. We need to move forward I cant bear the thought of going back to the start again :(

no more tea!

saw 2 loads of friends today and drank tea and chatted. Its so nice knowing friends are happy to listen. I know some people dont know what to say but all my friends and family have been wonderful.

Darren feels good today, again he walked to the school with me and even cooked dinner as I was at Tanisha at her dance class. Half way though she burst into tears for no reason. I had to explain to the teacher that there is a lot going on at home and that her dad has cancer and shes tearful some days. If anyone is going though this, I would truely recommend a charlie brown book called "why, charlie brown, why". Although it is about a child having cancer, its still helpful.

I have decided that once this is all over Im going to write a set of childrens books, with Tanisha's help, explaining to children about parents with cancer. There needs to be more done for them, its such a huge impact on them, especially for children with AS ect.

Im going back to work tomorrow. Im looking forward to something normal but am hoping I can hold it together. I rarely cry, but somedays are worse than others, and sometimes it just hits me like a train.

This cancer has taken over every part of our lifes in the last 2 weeks. Its feels so much longer. I want a day off, but never happens. Its taken over and is sitting next to me on the sofa, laying nexting to me in bed, and is follwoing me like my shadow.

why why why do i think too much??!

Today has been better. Darren feels better and has managed to walk to school with me this afternoon.
I re read what I wrote yesterday and noticed it could have been read very wrong. When I say Darren can lend a hand, I mean with dishwasher and wiping down sides. Little tasks the macmillian nurses said he is fine to do.

Today I recieve my hospital appointments for my heart tests, which i had forgotten about with all this going on!

I have been thinking today about where we go from here if Darren doesnt respond to new medication. His consultant explained that about 80% respond to the drug long term, but some gain a resistance to it later. Im really worried that Darren wont respond to it, especially as we are all pinning our hopes on it. There is one further drug if this one doesnt work for Darren but its not as good result. If that doesnt work our last chance would be bone marrow. Darren doesnt have a full sibling and also has thallasemia miner (not sure i spelt that right) and I dont know how that will effect the bone marrow matches. Its terrible to think 3 strikes is all we have! I try not to think like this too often, I cant, I have to stay strong for Darren and the girls.

Im going to work on Friday, Im looking forward to being normal for a few hours.

Thanks to all that read this, i know most of it as rambling, but it helps. xx

Lots done today!

I have managed to get on top of the housework today and to put together our new bed, with the help of my mum. I am knackered!
Darren has taken full advantage of being sick and sat on his bottom all day until I pointed out that he is able to get off his arse and help! I know his tired and understand when he takes himself off to bed, but when Im moping the floor around him sitting on his laptop, its too much.!

Jaz is still poorly and still has a temperture :( she wont eat and im struggling to get her to drink. Im meeting one of my best friends for a quick coffee tomorrow. I dont like to leave Darren for too long incase he get sicker. Im wondering how many times I'll call when i got back to work.

the phone just rang

White cells are down again to 134, which isnt as quick a drop as we hoped so he has to carry on his other chemo too :(

Jaz is sick too, she has a temperture of 38.2 and is grumpy as hell. Darren now has to spend as little time with her as possible so as not to pick up her bug, as it could be dangerous for him!!

Fingers crossed for a better day tomorrow

well results are half in!

We were left waiting for an hour and a half in the cancer unit. It is the most depressing place ever. Really could use some music, a tv anything to distract you from the worry of cancer. We saw Darrens specialist who has said Darrens liver results are still not great (results from thursday) but it has got smaller which is good. Its hoped the liver problem is caused by the first lot of chemo and not the cancer and should settle now his on new chemo. His spleen has got smaller which is great but because it is huge it will take 3-4 months to be back to normal size.

Blood results for today werent back but had a promise to call us this evening, but still waiting so dont know how well the new chemo is doing just yet. If we dont hear tonight I will call nurse in the morning.

Good news is they have caught the cancer at 1st stage so he has a good chance of managing the cancer with drugs for the rest of his life, as long as he responds to the drugs and doesnt have a relapse.

Its odd, the results have good points and bad but we are looking as them as positive so we can carry on moving forward.

Darrens new chemo is making him grumpy and its so hard not to say anything, so i normally snap back. Im trying not too but he is going to be on these drugs forever, so better get sorted asap.

Its odd, for some reason I keep thinking about the fact we werent given any chance to freeze Darrens sperm before he started Chemo, and that our family is now complete. We werent planning anymore children anyways but feels unfair that the choice wasnt our in the end!

Need loads of strength today

Darren has an appointment today. We find out how far advanced the cancer is. We also find out how well his responsed to chemo. I think they'll check his liver and spleen today, as they were huge a few days back.
We have a huge list of questions to ask today.
I have aknot in my stomach, i feel sick and cant eat! will update with results soon. xx

soo tired

Well Darren is shattered. His been back to bed twice today poor man. He managed to walk round the park with me and the girls but took himself back to bed when we returned.
I am run off my feet and only got back from food shopping at 10pm! Its so hard as the macmillian nurse explained Darren need to rest but do what he can. I dont want him getting used to sitting around doing nothing, it will just depress him and make it harder for when he is better.
Im finding it hard if im alone for too long, i hate having time to think too much. Im finding im doing most of my crying in the car :(
I think i need to get back to work soon, the bills are mounting and im struggling not having a routine. Im hoping Monday will give us a plan on what comes next.

This was Darren 2 years ago, Im still kicking myself that i didnt notice earlier. I was moaning about "man flu" for a while too.



Well today was a good day as far as the last week goes. Darren started double chemo today and his iron tablets. He is managing well without too much sickness. His is bed again before 7pm. His so tired.
I manged to get out for a bit and have a tea with really good friends Gemma and Cherie, it was nice to be normal for a while.
I have been worrying about money today as we spent so much on carpark and food out last week when at the hsopital. Someone droppped a card though the door with money in!! I was so shocked I cried. Im still surprised about the kindness of friends and of strangers, its so lovely.
Overall a good day. :)

His home again, now the fun really starts!

Darrens come home this afternoon, i think they get fed up with him asking to go home.
They have agreed that the infection has been caught early and anti bs have kicked in already. His red cells are getting lower which isnt great, but his white cells are lower too which is good. His enlarged liver isnt great news but the hope is it all sort itself out once he finishes first round of chemo.
They have decided to start his "normal" chemo again tomorrow, but are also starting his new chemo at the same time. His normal chemo will finish on Monday andthen carry on the new chemo, which hopefully will be the chemo he will be on for his life. They have also given him anti sickness drugs which is worrying about how much all this chemo will make him ill.

His very tired today, he went to bed before the kids. We are both so drained, some days are harder than others. Looking at him its hard to know his sick as he looks so well, apart from i know his face is slimmer and his eyes are slightly dark.
I have been asked by the girls from work to join them feeding the ducks with their little ones tomorrow, but I never know what mood i will be in, somedays im more tearful than others.

Darren before he got sick

Our beutiful girls

No more chemo for now

Darren has an infection and the doctors have decided to stop his chemo for the time being. I dont really know what impact this will have on the cancer as we are still waiting for specialist to pop down, but of course we are worried that this will leave the cancer to get out of control again. His not even on a ward yet as they have no insolation beds, so is still in A&E!!

Some silly doctor came and saw us at about 12pm last night and nearly got a mouthful. She clearly hadnt read his notes, as she was asking really stupid questions, and didnt even know what type of cancer it was he had!!
His started his anti Biotics so hoping the infection goes quickly.
His very bored and I have nipped back to collect a few bits and to get Tansiha from school at 3pm.
He seems well within himself but he really seems to struggle being there alone. I know its hard, I have been there a lot in my life but he needs to understand that I have to sort the children out too. They need me just as much.
Im going to pack him a bag, change a nappy, pick up Tansiha and head back to hospital.

very quick update

Well its 1.23am on thursday and Im giving a very quick update before I crawl into bed. Darren is still at the hospital, his had loads of tests and xrays, his all wired up to drips, lucky for us he has good veins :)
They think he has some infection somewhere, but are also concerned about how big his spleen is and how his liver is now enlarged too. They also said he could be at neutrapeanic stage, which means his really at risk of infection. His on an insolation bed on A&E as there are no beds elsewhere.
It was all a bit too simular to last week, same day, same time and even same bed as when he was taken in a week ago.

It feels like this is a huge rollercoaster, and I really want to get off now!!
Night x

Agggr

Darrens developed a temperture and diahorra, we now have to head to A&E as theres no cancer nurse on in the evenings!

Just when we thought we were ok

Darrens had a few palpatations and racing heart. I have rang the Macmillian nurse. They dont know why, so back to hospital we have to go tomorrow :(
Its been a beutiful day today, it been sunny and warm and Darren felt well enough to walk to the school and collect Tanisha. She was so excited to see her daddy and her teacher was nice enough to let him see her work. :)
We had a wonderful lunch with my family today, as it was my parents anniversary.
The girls are all tucked up in bed, Darrens not feeling 100% so his taking himself off to bed as i type this.
We brought daffodile pins today from the second hand shop, we have brought them before, but never have they meant so much. I dont think i will ever see a daffodile and look at it the same way.
Its scarcy sitting here tonight knowing that this evening last week was when it all started, its only been a week, and it feels like a life time :(

The tears are coming thick and fast!

I have no idea why, but feel like im about to break. I think its really hit home. Talking to the macmillian nurse kinda brought it all home. I think its a mix of tireness and stress really. I cant stop crying, and i dont want to talk to anyone.
Darrens very tired again and gone off to bed at 7.30pm. I think i might join him too. I cant believe this is all happening, and am so angry that life is going on for everyone else yet ours have stood still. I saw a dad with his little one on his sholders and took all my strength not to cry!

Im now stressing about Darrens appointment on Monday, they should be able to tell us how advanced the cancer is, and im so worried it all be the higher one as he had so many of the sysptoms, but trying so hard to stay positive.
I know Darrens the ones thats sick, but im strugling to be the strong one all the time.
Maybe sleep and lunch with my parents and sisters will help tomorrow.

Well his home, for now

Darren finally got home yesterday at 6pm. The girls were so excited to see him, Tanisha just ran at him :)

His Brother came straight to the hospital with his girlfriend Mandy, it was so nice to see them after so long. They stayed a while, and came back later in the evening once we were home.

Darrens parents finally got here at 7.30pm, and his mum was cuddling Darren and crying, she asked if he was better. I wish! I dont know if she knows how long a road we are going to be travelling. His dad was very cold towards me and I find it so hard when people are so rude in my own house. I know he blames me for the big falling out a few years back. I know if I hadnt married Darren he might have followed them to Wales, and I know he might not have found out his adopted by his dad, but its not my fault. Its also not my fault that Darren choose to follow a religon, his a grown man for goodness sake!

Everyone finally cleared out at 10.30pm, and Darren was shattered but hungry for the first time in days, so we enjoyed the loving meal our friend Michelle had sent over earlier! I dont know what I would do without my friends and family. I havent cook a meal since Thursday, and every night someone bring us something nice and yummy to eat. Im dreading having to cook again, so I cant cook as well, im going to miss the yummy food :)

Darren had a slight temperture last night of 37.7 and I told him if it goes higher im taking him back. Its down again this morning, slightly high at 37.5.

His very tired today, he woke at 7am when the girls came and woke us, his got up got dressed and now gone back to bed. He looks worse today, but im guessing the chemo has really started to invade now.

I spoke to one of the mums at the school this morning as I knew her husband had cancer a few years back and also she worked on the cancer ward, she was so helpful.

The macmillian nurse called this morning but i was at the school so shes ringing me this afternoon. I have so many stupid questions: Do i need to rehome our cats? What is the highest I can leave his temp at before taking him back? Can he change a nappy? Can he walk Tanisha to school? Is he allowed to visit others? What do i do if the kids are sick? Is he allowed to help with house work? How long will this round of chemo be for? When will we know what stage its at? oh the list is endless!

I think its hit me that Darren will have cancer for life! Chemo will be part of our everyday vocab and we will forever be asking questions!

Im surprised how hard its been to accept will we not have anymore children. We arent planning on anymore at all, due to my heart condition, but i think having that choice taken out of your hands is heartbreaking, Darren so badly wanted a son. But he loves his girls to bits

Before I was just worried about getting him well enough to get him home, and he is, Im worrying about him always.

Darrens coming home!!

I called the macmillian nurse to talk though a few concerns, she is so nice :)
I explained i was concerned about the nero virus on the ward, how his stuck in his room but cant have the kids visit, how some of the nurses took barrier nursing very casual and how i wanted to know what stage the cancer was. She said she would review with Darrens specialist and call me back.

Well she called back and told me he can come home. His stable and the chemo is working well. Also his safer here than at hospital. His body is used to any germs here, but germs in hospital are new and worse. So there I stood in the middle of Aldi crying! LOL
We know we still have a huge long road ahead and things are going to be so different from now on but having Darren home will be so nice. I cant wait to tell Tanisha!!
Im under strict instruction to take him back if he starts bleeding, has a temp, feels unwell or anything else!!
We see specialist again on Monday for more tests and results. Better start cleaning!!

My poor little girl and OMG we are going to be invaded

Tanisha is really struggling these last 2 days. She keeps bursting inot tears. She knows why she cant visit daddy but is hating every minute of it. I really dont know what i can do for her.
Im off tomorrow to buy webcams as Darrens work have given him a laptop to use. Atleast then she can see daddy, i hope the ward is open again soon and then they can move him to the cancer ward. Been told by nurses it will be atleast wednesday before they will consider it!

The inlaws (or outlaws as i call them) will be here tomorrow. Im so worried its going to increase his stress levels and i have no idea how the girls will react. I have only spoken to them on the phone once when i told them that Darren had cancer and since then I have had a few facebook messages and a text.

Darrens brother and his girlfriend are coming too, and cant wait to see them :) Darrens looking forward to that to.

Im hoping that his parents behave and dont stress him out too much. We had a huge falling out with the about 18months ago, and they haven't contacted us since. They even sent back all the photo's of the children, which was heart breaking. They have NEVER met Jaz and Tanisha was 2years old the last time they saw her (shes 6 now). Im praying all goes ok.

Darrens very positive today as his white cell count has dropped. All good so far, may it long contiue :)

baby steps

Darren had news today that his WBC count has dropped to 327! its great news but still a while to go :)
Platlets might be a little low as blood is flowing quick. Positive thinking though

Update today

Darren is in good spirts, but feeling quite emotional today. Theres a nasty D&V virus on the ward so Darren is in complete insolation. He cant leave his room at all and all visitors have to wear aprons and gloves :(
The girls arent allowed to go and see him now which is upsetting for all.

Bad point today was having Darren on the phone in tears and Tanisha in my arms doing the same. Im trying to be strong but really dont think its hit me yet.

Good point today, Darren is off the drip!

12 hours makes a huge difference.

might as well start from begining.







Our friend Paul grabbed me on the way out the door, asked me "Is Darren ok, he looks like his lost a lot of weight"! Well this was the 6th comment in as many weeks and my reply was always the same. He had not lost weight. I know he hadnt as he had weighed himself after so many comments. I looked at Darren as a i got in the car, did he look slimmer? I noticed his face looked slightly glaunt and his arms maybe a bit smaller. Maybe it was the bowel problems he'd had recently. When I told Darren what Paul had said his reply was "I havent, im sick of this, Im going to get fat just to show them"! my reply was "yes dear but I am making you a doctors appointment next week, best be safe".



Darren then spent the next week, googling all sorts, taking though what we thought it could be. Couldn't be bowel C, he wasnt having blood. Maybe a food reaction.







Roll forward to Saturday, after waiting for GP, finally saw him. He said he thought Darren had a wheat allergy, something like celeaic disease maybe. Do a blood test and stool sample, we'll go from there. Phew we thought, that we can handle.

WEDNESDAY 11am

Darren made an appointment for blood tests to be done today. He seemed in a good mood but did moan about the butcher of a nurse that took his blood.



Fast forward to evening 9.30pm, watching Grand designs when the phone goes. I answer as Darren moans the phones always for me anyways. "Is Mr Darren Dutton there please", ok odd "whos calling please" "Dr R from Herts urgent care". I felt my heart sink into my shoes.



I hand the phone to Darren, loads of questions asked and answered. When Darren comes off the phone he tells me that he has to make an appointment to see GP in the morning as his white cells are very high, according to his test. He asks me to google it! I read him pieces about, allergies, infection and leave the C word out of it as long as possible. I suggest we go off to bed to watch TV. Phone rings again at 10pm. We joke its the doctor again. As soon as Darren answers his face drops. I ask if its the Doctor again and he nodds. I hear him saying "I feel fine, better than most days to be honest, ok, ok, if he thinks its a good idea I will go".







Darren gets off the phone and tells me the doctor has told him to has to go to hospital tonight. Ok Im panicing now. His been told to pack a bag as he may be there a few days.



I call mum to come and watch the kids, I pack the bag while Darren looks lost.





We get to hospital at 10.50pm. explain to A&E nurse what we were told, and she sits us done to do BP, pulse and temp, all good :) She then looks at his blood results from earlier "Oh my, never seen them that high" she explains that White Blood Count, (WBC) should be between 4-11, ok Darrens was 382!!!


She takes us round to ward part of A&E and Darren is put into a side room. We sit, joke, laugh and text a few friends. John and Simon pop up but leave at 1.30am as Darren is taken for an xray. We notice on x ray form they are asking for xray to include spleen.





At 3am a doctor finally comes in, talks about white cells, bone marrow and waiting for someone to look at blood for us. He refuses to give us an idea of what they think and promotly leaves. The sister comes in and asks if all is ok and if the doctor answered all our questions. In short we say "no and to be honest his made things worse as we are now guessing". She asks what we are guessing, to which Darren replies "leukemia". The nurse just looks and my heart sinks. I know that look. She offers to walk me to the car. Jaz will want feeding at 5am. I tell Darren I will be back in mornign and they explain he will be on ward.





I cry all the way home. I get back and Dad promtly wakes mum. Its 4am. Mum and dad have gone home to get sleep but Dad has said he will be back at 8am to take Tanisha to school. I get into bed for all of an hour before Jaz wakes for a feed. 5.30am Kids wake up.
Tanisha asks where Daddy is and i have to explain that daddy has bad blood and his in hospital and doctors are trying to make him better. Dad arrives at 8am as promised and walks Tanisha to school. He then takes Jasmine to his house. I leave for hospital. Darren calls as I pull up at hospital to tell me doctor is there. I explain im trying to find carpark place and ask him to wait for me. I then spend 30 mintues trying to find a space!! In those 30 minutes I have shouted at the cars, beeped my horn and driven like a mad woman, but Im too late :(

Darren had been told he had Leukemia at 9.35am!!
In 12 hours our lifes have been turned upside down, and things are going to be so different from now on!

why am i doing this again?

I have decided to start this blog as so many people ask me "how is he today, how are you?" in one day the answer always is "we're ok, we are coping thanks". So many emails to reply to, so many texts, and answer phone messgaes. It seems easier to write it all here.

Im also hoping it might help me sort my thoughts out, Im sure its not all sunk in yet. Im still struggling to get my head round it, and have so many silly questions buzzing in my head.

I still find it hard to hear and say the "C" word, silly really after everything we are going though, to worry about a word!!

Tanisha has been hit hard today, I think she knows its serious. Too many calls, too many visitors in daddys room. Shes a bright one, and she even asked what is it called. My reply was Leukemica, see i cant even spell it right yet!

Well its only day 2 and im shattered and worried.

Todays update is: Chemo kicked in. Darren doesnt feel like eating. He was still quoting "I feel fine" until this evening. His temperture is up to 38.4, and as his white cells are so high and the Chemo is killing what little immune system he did have left, panic has now set in! Nurses are lovely but as his not on a cancer ward, not 100% sure they get it all.

Im going to write about how this all started asap, as it really does explain why I have called this blog "12 hours makes a huge difference"
thanks for listening, although not sure how many are listeniing :)

Lisa