12 hours makes a huge difference

2010-12-17T14:50:00.000-08:00

Well another month goes passed with nothing to report for Darren. His doing well, and the new drugs are amazing and with very few side effects.
The girls are doing ok. Tanisha has struggled to cope with the changes that come with xmas at school and we have been told Jaz has hyper mobile joints and now have to do nightly excersises to stop her leg muscles getting too tight, as she walks on tiptoes.
I think I might have to start a blog about our wonderful girls who are affected by Autisim, but not sure I have the time :)

Mutation results are in :)

2010-11-23T14:48:00.000-08:00

Got a letter the other day but just got chance to post.
Wonderful news is Darren does not carry the mutations which would effect his treatment.
There is no reason to think the new chemo shouldnt work :)
woo hoo

Well what can I say..

2010-11-15T01:25:00.001-08:00

not a lot really, things with Darren are fairly settled here. The new drugs are great and Darren is no longer tired or feeling sick! His starting working out again which is great apart from at this rate he will need new clothes again soon.
We are having a few other difficulties. Our beutiful girls, who are the light of our lifes but of course come with worries. Tanisha is doing well in her new junior school but Jaz is currently also going though the assessment for Autisim too. Its a hard time some days but when i think on what we have been though as a family in the last 20 months, I just know we will be fine :)
Hope your all well and not too cold!!

Good news, phew I can breath again!!

2010-10-20T06:49:00.000-07:00

We went to Hammersmith yesterday, we decided to chance driving and it wasnt too bad. Darrens new specialist is Spainish and looks like aresearcher should, big glasses, very tall and slightly on the nerdy side but his the best so who cares :)
Darrens results are nearly all back. His cancer levels in his blood have dropped quicker than we could ever have hoped for. And now is cancer cells stand at 0.664% which is great as it means its the lowest its ever been since this all started 19 months ago.
We are still waiting for mutation results (checking if Darren is still human)but they should back intime for his next appointment on the 3rd November.

Overall a great results and the new chemo is clearly doing its job.

Change of plans

2010-10-11T06:50:00.000-07:00

Darren now has to see the Big man of CML himself as he has requested to see Darren after recieving his notes. We now have to wait another week to see him but hopefully its a good news as if he now has the best man for the job :)

2010-10-10T15:55:00.000-07:00

Well heres hoping our week brings good news.
Here is a blog from naother CML sufferer who is further along treatment than Darren and having to undergo a bone marrow transplant. Please have a read and follow her story

http://wwwdizzylizzy.blogspot.com/

2010-10-07T05:32:00.001-07:00

Hammersmith here we come!! Darrens doc made urgent referal today they will call today or tomorrow with an appointment for next week!

Well its offical, Lister Hospital sucks!! And so does car insurance

2010-10-06T12:49:00.000-07:00

To say the last week has been stressful is an understatement of the year. I have been battling the insurance company who are now saying as Darren was driving the car more than me I shouldnt have been given the policy!! Now saying car is written off but refusing to pay, I have wasted many hours on the phone in tears. Jasmine starts her speech and language group for the next 5 fridays in the town so need my car and also starts her special preschool too (for those that dont know they think shes Autistic too), so yes I had a few choice words for them.

Lister on the otherhand I am used to being terrible now. Darren went for another appointment and we found out that they still havent made the Hammersmith referral. His doc told me he will make it today, and he better as I will be chasing it up with calls tomorrow. Darrens scan appointment didnt arrive so we popped down there on the way out to be told tey had bounced it back as he had the same scan last year!! AND there point was?? So be warned people dont ask Lister for more than one scan a year for the same checks, it must be against the rules, weirdos.

Darren is fine physically and is feeling less tired and sick on these new drugs but I guess the worry is we just dont know if they are working. Because his now out of second stage remission, he could come out of all stages (there is 3) as there is only one he meet now. We really just want to get to the top specialist now, and hope to see them on Tuesday, if not heads will roll I promise you, Im not in the mood to be messed with anymore.

Can you tell im stressed?? Me? Never!!

A big smile sometimes hides a huge worry xx

Right they seriously are getting it in the neck now!!!

2010-10-04T02:18:00.000-07:00

Phone call recived this morning at 10am to tell me that after they lost results 3 weeks ago and had redone this morning that they didnt take enough, this letter has gone off, I have had enough of being nice now!!
FAO: The Chief Executive

Dear Sir

I am writing with a very strong complaint against your staff at Lister Hospital, focusing on the incompetence of your phlebotomist team.

My husband Darren has been under the care of your hospital for the last 19 months after receiving a diagnosis of cancer, Chronic Myeloid Leukaemia. As this is a blood cancer he has had to have blood tests regularly throughout his treatment as well as bone marrow biopsies.

In the 19 months his blood tests have been mislaid, not sent to Hammersmith hospital quick enough or they have not taken the right bloods, at least 8 times! At one point he has needed the same tests redone 5 times. These tests are very important, as they tell his treatment team if his treatment is working. Due to this delay in receiving bloods, his team did not know he was not responding for an extra 3-6 months, as he had no blood results from Feb till Sept, even though he is on 3 monthly appointment and is now having to undergo new treatments.

At the start of his treatment they also lost his bone marrow biopsy and therefore the team had no idea of baseline tests.

As you can understand this is a worrying time for us and we should not need to be chasing or having bloods done again and again. I can cannot make it clear enough how very upset we are with this and also know that as his cancer levels are raising and that this could have been picked up earlier if your staff had done their jobs.

I am sure you will want to look into this terrible level of service and we will await you response within the next 7 days.

Darren's doctor is Dr K and his Macmillan nurse is Debbie, both of which are very aware of all of this.

Yours Sincerley

Lisa

2010-10-02T03:57:00.000-07:00

Darren had another appointment. His getting bowel and side pain and white cells and neurtophils are up. Because they have yet again (5th time) lost results, they dont know if the cancer getting out of control or if its an infection. They know that his levels were raising on Imatinib but now have no idea if disnapib (sp??) is working.

Scan booked and blood being done again on Monday. Still waiting for hammersmith appointment.
His doc was really not happy with bloods but not a lot we can do other than wait.

Last tests showed 25% in bone marrow with 4 % blasts in Feb

BCR ABL were up from 2% to 8% in feb.

Can it get worse? yes it can

2010-09-10T04:53:00.000-07:00

Darren had a car crash yesterday, this is whats left of his little car :(

Well more results are in and its not good :(

2010-09-09T08:56:00.000-07:00

Darren has developed a resistance to the chemo, even at double dose. The bone marrow shows a rise to 25% of cells having cancer but not in the way that makes in blast crisis (very complex). The cancer is rising and he has splited out of the 2nd part of remission and it not great.
He now starts new treatment tomorrow but has had loads of bloods taken for gene testing. If he developed a resistance to this chemo he could be resistant to all of them and then its straight to Bone marrow transplant.
For anyone that isnt registered please do if you can here

http://www.anthonynolan.org/What-you-can-do/Save-a-life.aspx

and if you cant remember why its important please look here:

Photo and video editing at www.OneTrueMedia.com

bad news keeps coming! :(

2010-08-17T13:44:00.000-07:00

Blast cells from bone marrow hadnt changed at all still at 4% on last tests. They have told us if it goes to5% he will be in crisis phase which is classed as AML which is scarcy as that is full blown, iv chemo and stays in hospital stuff :(
please keep us in your thoughts.
Im sure we will get though this, we always do and are just treating this as a bump in the road.

Bad news at appointment :(

2010-08-06T16:25:00.000-07:00

Darrens chemo isnt working, and the results show his cancer cell count is back to what it was Aug last year :(
He now has double chemo, a bone marrow biopsy next week and a referal for Hammersmith which has the best specialist in Europe.
Its very hard to hear that the last year has been for nothing and we are pretty much back to the begining. The chemo is making Darren feel sick and his tired :(
Will update with more news when we have some, hopefully next time with better news.

Bad news

2010-07-20T03:08:00.001-07:00

Darrens results are in. The amount of cancer in the blood isnt goign down quick enough, and so now we have to go back in a few weeks and discuss other options :( to say we are scarced is an understatement.

Still here and still waiting :(

2010-06-08T13:05:00.000-07:00

Well Im so sorry to have neglected my blog, the one thing that has kept me sane! Darren had another Apppointment 3 weeks ago. His specialist decided to scare the hell out of us and talk to us about Bone Marrow Transplants (BMT). Darren still hasnt met remission and there is a magic time limit btween 12-18 months from dx to remission before they have to consider other treatments. So here we are 15 months in and still not there.
Scarcy thing about BMT is we have always thought we would be ok, Darren has a half brother and 2 beutiful girls if needed right?! WRONG. Unless Darren has a full sibling the match from half sibling and children is just as risky as if using a stranger donation. So after this wonderfully insightful discussion with specialist (who didnt have full test results back at time) we left with another round of chemo drugs, a 3 monthly appointment and strict instruction to return if darren went downhill.

So fast forward to Monday and Macmillian nurse Alison calls, she tells me there is a problem with darrens last blood tests and so he has to go and have more bloods on Friday :(

So now we wait again! Somedays its pretty easy to forget Darren has cancer and that we will now spend the rest of his/our life with it. I think its only hit me the last few weeks how thats going to be. we are never going to be free from, it will always be there. Even with cure with BMT, it still daily rejection drugs to take rather than Chemo, either way life isnt going the path we thought it would. But hey, we will hang on in there, theres way to much life to spend it battling the thorns in the way!

Love hugs and prayers to those that need them and prayers to my wonderful friends who have lost their battle :(

Well if its not one fight its another!

2010-02-26T15:15:00.000-08:00

Darren had his 3 monthly appointment and all is pretty good, he has met 2nd stage remission so only one stage left before full remission. His bloods as always were a little "off" but nothing major and just keeping an eye.

Our eldest Tanisha was given a full diagnosis of Autism this month, so alot of our engry is going into getting her the support she needs. But hey we have the fighting spirt so might as well make use of it.

Not a huge amount to write about im afraid, but it feels great :)

Hope your all well

I will be tapping your wallets for money for Race for Life soon so please give :)

Spot the difference!!

2009-12-24T07:49:00.000-08:00

last 2 pictures are form just before we found out about the cancer, the other pictures were taken on our wonderful holiday to Center Parcs! For the first time this year, no one was sick, no one was poorly it was just lovely :)

another little leukemia fighter

2009-12-12T15:28:00.000-08:00

http://redirectingat.com/?id=470X756&url=http%3A%2F%2Fanimoto.com%2Fplay%2FYU8XJjL3n0ytAXpfuxIt4A%3Futm_source%3Dfacebook%26utm_medium%3Dshare%26utm_campaign%3Done_click_share%23

Just checking in

2009-12-09T08:37:00.000-08:00

Well nothing much is happening here. We are just plodding along, with nothing to report. Its bliss

Hospitals dont rush, do they?

2009-11-06T05:54:00.001-08:00

Well Darrens appointment came by on Wednesday and Bone marrow results still arent back from the Royal free! Blood results were ok, if not a few liver results being a little off the charts. Darrens specialist has said as long as BM results are in (he is chasing them) and darren remains well, he will see him in 3 months :)
So back to normal behaviours for a while now, put it to the back of our minds and carry on.

WOW what a deifference a few years make!!

2009-11-03T05:59:00.000-08:00

I was reading this article online, and brought tears to my eyes, its hard to hear what would have happened if darren had got this cancer 10 years ago

"WHAT WAS LIFE LIKE FOR PEOPLE WITH CHRONIC MYELOID LEUKEMIA, OR C.M.L., PRIOR TO YOUR RESEARCH?

A. Life was pretty miserable. If you were over 40, the main therapy was interferon, which prolonged life for maybe a year in perhaps 20 to 30 percent of patients. Interferon made the patients feel awful — like the worst flu. The only other hope was a bone-marrow transplant for younger patients. The problem there was that the death rate in the first year was 25 to 50 percent.

C.M.L. patients were always difficult to see because both of us knew that the clock was ticking and there was virtually nothing that we could do about it

This has all changed since new drug came into the face of it all in 1999.
Full article here: http://www.nytimes.com/2009/11/03/science/03conv.html?pagewanted=1&_r=1

Agggrr So the winter bugs begin

2009-11-02T05:25:00.000-08:00

Ok we have dealt with Swine flu and now we face the fight of the winter bugs. Me and both the girls are poorly. I have a nasty chest infection, Tanisha has a cough that sounds like she smokes 50 a day and poor Jaz has ear and chest infection and has a raging temp too.
for once darren is the well one, I guess all those vits do work :)

We should get Bone Marrow results on Weds, and i wont lie, Im scarced. If these results show a good reduction is cancer cells we are on the home run and just need to keep going as we are and hope he makes remission within the year :)
If they show little or no reduction, we have to start this whole battle again from the start with new chemo.
Prayers and thought for those that need it x

video

2009-10-16T02:27:00.001-07:00

darren 10/15/09

life is pretty good here

2009-10-04T15:21:00.001-07:00

Not much going on really. Have been spending what little nice weather we have out as a family, and enjoying walking and bike riding. Scan results came in this week and all clear, which is great. Still awaiting bone marrow results, but have told us they will let us know once results are in.

here are some pics of our lovely days out together, and will update with any news.

wonderful results

2009-09-10T03:46:00.000-07:00

Darrens cancer cells are down to just 4%!! they started at about 99% (not 100% sure as they lost results, but they are goin on how unwell he was when dx), then 39% and now just 4!! Needs to be 0.001 to be in remission but this is still fab news. My darren was so brave having bone marrow taken today, the needle is hugggee.
onwards and upwards.

did she jump or was she pushed!?

2009-09-07T08:47:00.000-07:00

I am struggling to hold it together this week. Darren has scan tomorrow night and then bone marrow biopsy and consultant meeting on thursday. Tanisha is back at school and im back to work. Jaz starts new childcare this week in the form of my sister, she has her 2 year check next wek and starts preschool on the 17th. In all honesty, as much as i hate to say this as too prud, we are broke :( I did a carboot this week to just be able to afford food shopping and i dont know what to do until payday on the 26th. Im doing another carboot on saturday and hopo06.efully that will see us though and also selling stuff on ebay. I just cant seem to get ourself out of this hole. And before you ask, the holidays were paid for ages ago and we had food money and that was pretty much it and the reason we spent a lot of time on beach (thank goodness it was nice and sunny). Benifits are being very slow in decided what they will give us/ if anything at all.

I just know how i will get though this week, im tearful and stressed and trying so hard to be normal. So many people tell me how brave and how well i handle this, and while i know they are trying to be nice, it does make me feel as if it would be a bad thing to fall apart :( that it would be failure on my part.

wish us luck and please think about us in prayers this week, im thinking this week it might be needed.

Holidays and scans

2009-08-30T05:47:00.000-07:00

Well we are back from our family holiday in UK. We had a great time and some wonderful weather. Darren was well and loved spending time with the girls. We have an appointment for Darrens scan on the 8th Sept and still waiting for follow up appointment which i will call Macmillian nurse about on Tuesday.

Hope everyone is well

Damn it

2009-08-19T05:55:00.000-07:00

Well results werent so good. They have manage to lose the % results so now have to wait till they find them.
Darrens liver results are now a concern. He has to go and have extra blood tests, and an ultrasound scan, within the next few weeks. He also has an appointment for bone marrow removal in a few weeks :( OUCH
Wishing it was better news.

Results day tomorrow and new life

2009-08-18T11:08:00.000-07:00

Well another appointment is nearly here and the wait is terrible.
The way CML works is you have to have a 3 log reduction in first 6 months. So % of cancer is calculated every few months. First % was guessed at 97% as the hospital lost them :(
Hoping for a good reduction tomorrow and then further reductions at 6/7 months so we can know we are on the right track.
Also hoping liver/kidney and platlets results are ok, as there always seems to be a BUT at every report.

The girls have picked up today, so looking good there.
Darren has been turned down for DLA even though some days his too tired to get out of bed and is often going back to bed during the day, so money is still tight, but if we can deal with cancer we can deal with everything.

Our best friends have had a beutiful baby boy this week and he is so sweet and a great reminder of how life goes on and how precious it truely is.

Oh Im putting together a photo montage with photos of our family but also would love pics of other CML suffers to include.

If you want to send me a pic to include, please email me minx101@hotmail.com with a name, who the picture is of, age, date of dx and anything else.

thanks for listening and hoping to update with some lovely news tomorrow. x

Holidays and Swine Flu

2009-08-16T13:59:00.001-07:00

I have been away to the beutiful Isle of wight with my lovely girls. We had a great time and spent most of it on the beach building sand castles and chasing waves. We also visited a small Zoo.

However, Jasmine has now developed signs of swine flu, with a massive temperture, diahorra, aches and not eating. Tanisha has complained of Headaches and dizzy spells. Both girls are at home with me and we are hoping they pick up before our family holiday on Saturday.

Darren gets % results on wednesday and we will have an idea of how well the cancer fight is going, so prayers and thoughts please.

4 months in, what a difference a few months makes.

2009-08-06T11:58:00.000-07:00

Well here we are, 4 months into Cancer treatment and awaiting another load of results. On the 19th we will find out what % the cancer is at now. We are all hoping the daily chemo is working and that results are good one. Its odd, sometimes I can go a few days, sometimes a week and not think too much about the fact my lovely husband has cancer, but then there is always something to remind you. It could be the huge meds box on the side, Darrens drug alarm that goes off at 8am every morning, or even just the call i got last night from Darren wondering what to do for the best after visiting a friend with a sick child. Cancer has a way of sometimes just taking your breath away, of sometimes just sneaking in and reminding you that life is cruel, so breakable and oh so sad at times.
I look at my girls and I know they dont understand, I know most of our friends see Darren and dont understand. He looks so well and hides his tiredness so well, but sometimes I wish he wouldnt, sometimes I would like someone to see Im sinking on a bad day.
I guess I would just like life back. Before we worried about drugs, sickness, hospital appointments and what our next option is if this doesnt work. I know once the 19th is over, we wil be good again for a while, until the following month when its time for Darrens bone marrow biopsy.

Oh well, I guess life goes on, and i really should get back to my wonderful life of housework.

Hugs and prayers to all those that need it.

2009-08-03T15:48:00.000-07:00

Well we went camping, and loved it. Was wet for one night but rest was ok. Hope your all well.

Darren has been tired again, but his appointment is on 19th so fingers crossed we get good results.

Cancer research Ad

2009-07-16T12:40:00.000-07:00

well Cancer research have done it again, given us another hard hitting ad. Well nothing hits harder than cancer so who can blame them. I still cant watch the one with "fields of barley" song without welling up, and that was before Darren got sick.

please give, you know Darren will be on Chemo everyday without more research.

Im having a bad hormonal week, and keep crying and for once Darren is holding me together.

hope everyone is well and prayers and positive thoughts for all those battling or fighting the fight. hugs

RACE FOR LIFE!!

2009-07-13T14:06:00.001-07:00

Well we did it, me and Tanisha completed 3 miles for Race for life and between us (with help from Gemma and Maria) raised over £500! It was a lovely day but reading some of the messages on the runners back brought a tear to the eye. Tanisha's and Jasmines just said "My Daddy" and mine said "for my wonderful husband, still fighting".

Darren is doing loads better this week and finally seems to have beaten this virus/bug/infection. Although his still tired, and slightly grumpy some days, we do ok.

Heres some lovely pics of RFL

2009-07-07T13:12:00.000-07:00

found some more holiday pics to share with you all. hope you like them

Swine Flu

2009-07-07T13:07:00.000-07:00

Well oh bugger Swine flu has hit our family and work. Both my sisters and their families are being treated at the moment. We are of course worried and the GP has given us a perscription for anti virals for Darren.
I cannot get this flu, Im running race for life on sunday and need to be well.
Darren still isnt right. He is getting weird numb feelings in his sides and headaches, which isnt like him at all. He has also started having panic attacks.

Liver results were boarderline and his clotting bloods arent great but not dangerous, so waiting another load of tests.

This week has been a toughy, I think everyone has holiday blues and is pretty tired.
Oh well best get back to house work. hugs all

Im famous!! LOL

2009-07-02T14:10:00.001-07:00

I did an interview for the local radio station today, about Race for Life. Poscast here: http://www.heartdunstable.co.uk/Article.asp?id=1396121

waiting always waiting

2009-07-02T05:41:00.000-07:00

Well we saw consultant and now awaiting more test results. Thats the news really, nothing more I can add.
Please dont forget Im doing "Race for life" next week and anyone that hasnt spondsered me already pleaaasee do. Can be done online here http://www.raceforlifesponsorme.org/darrendutton

thanks

Now Im panicing!!

2009-06-29T13:27:00.000-07:00

Ok, so I called Macmillian nurse to check if Darren needed any bloods done between now and his appointment, as they had changed it. Also told her his been very tired, bruising again and generally under the weather. She called back and they have requested we both attend a meeting with the specialist on weds this week! Now I dont know what they are thinking, I cant seem to find much on rejection online, although he has a higher risk because he had enlarged liver and spleen at dx.

God feel like my worlds falling apart all over again :(

2009-06-28T04:06:00.000-07:00

Well Holiday was meant to be relaxing right?

2009-06-28T04:01:00.000-07:00

Darren wasnt well at all for atleast the first week and didnt really pick up till last 3 days. He often had to go back to bed, lay down as he ached everywhere and also developed a problem with his kin. He couldnt even bear a tshirt touching his skin as it was too painful. :( Macmillian nurse thinks it might have been shingles!
He did pick up and we managed to keep the kids busy, and have some nice days at the pool, beach and out seeing friends so wasnt a complete loss.
Biggest news was Tanisha learnt to swim! she was so good and was jumping in the deep end by the end of holiday, was so proud of her.
am going to add some pics of the holiday too, but have to get on with my washing pile too :)

well it continues

2009-06-10T14:54:00.000-07:00

Darren is still unwell. His tired out, not eating much and very achey all over. His blood came back ok and GP said it sounds like a flu virus :(
I guess this sort of thing will hit hard, while he remains on treatment. We are meant to leave for our holiday on Friday, but i dont even know if we will go then or maybe a few days later. Will just have to see how Darren is, and if his up for travelling.

infections grrrr

2009-06-06T08:46:00.000-07:00

Well Darrens still not well at all. His finding any movement hard work, is sleeping loads, still dizzy and not eating much at all. I called Macmillian nurse and she agrees with GP that its an infection and says will take a while to recover.
Tanisha's appointment was a little strange. The doctor agreed she has ASD but doesnt feel a diagnosis is helpful at this time as we are all managing ok.

We were meant to go out last night with some friends, but Darren was in no fit state so i went alone and missed having him there.

Darren had more blood taken today, so hopeful of some good results next week.

tears and more tears

2009-05-31T14:16:00.000-07:00

We have had some lovely weather and spent yesterday at the local water park, which was good fun. Today however, is not so good. Darren was feeling sick, dizzy and tired so I am calling Macmilllian nurse tomorrow. However before I can do that we have an important appointment for Tanisha, our eldest. She has a assessment to find out if she has ASD, (austistic spectrum disorder). It just seems to be a long list of things at the moment, and sitting here, its all got on top of me. I know i will be fine tomorrow when all this is over with for Tanisha.
I just really need to have a rest and our little family holiday cant come soon enough.

Results

2009-05-27T16:35:00.000-07:00

Darren went to his appointment today and his wbc was good. However they are concerned that his liver function tests arent good. The levels have started to come up again which isnt good so been referred to another specialist. Hoping we can get this sorted.
Other than that all is good, although Darren has been more tired this week. Next results in 6 weeks will give us a percentage of the cancer cells, so will be better informed then.
Hope all the readers are well.

The sun is shining

2009-05-23T03:17:00.000-07:00

Thats its really its a beutiful day outside :)

Never rains but it pours

2009-05-21T13:45:00.000-07:00

Its been a really crap week. Tanisha has had her SENCO report for her assessment visit which wasnt nice reading in parts. I had my hospital visit which resulted in some treatment i wasnt exspecting and so am now feeling pretty rough and run down. Darren is doing well but finding work a bit hard, i think more the hours. My works pretty busy but i like being busy.

My mum called to ask about booking a holiday for next year (which we tend to do a lot) and had to explain we just cant plan that far ahead anymore. I dont know what will happen in a year. We dont know if Darren will be in remission, be rejecting drugs and on a new lot or even be needing a bone marrow. Its so hard to know we just cant plan, our lives are stuck for now. Most days we live a normal day with only the large amount of meds in the box or the hospital appointment on the calander to show we live daily with cancer.
Oh well enough moaning best get back to practicing my smile!

another week another worry

2009-05-15T15:19:00.000-07:00

Another week goes by and Darren is doing well. His gone back to work full time this week, but is very tired some days, but putting on a good face! Money has hit a terrible low this week, but things are improving. Tanisha has an appointment in 2 weeks for an assessment for ASD. I on the other hand have an appointment on Tuesday for some tests due to some woman problems (very red faced atm) but hoping it doesnt show anything to worry about otherwise i might just cry :(
Im so glad Darren is improving and long may it continue.

Grrr Chest infections

2009-05-08T12:15:00.000-07:00

Well my cough and cold turned into a chest infection and so now on AB. I had left it too long and could barely catch a breath, so taking a while to clear. Its hit me quite hard, but i think just the stress of the last few weeks has tired me out.
Darren back to work till 3pm this week, and seems to be coping ok.
MOney is tight as hell and im struggling to find a way out of things but hoping things will sort themselves out once payday rolls around at the end of the month.
Tanisha has been really very "off" this week, crying but not knowing why and getting a little mouthy, which isnt like her. I think she's tired out, worried and stressed too. Its got to be so hard for a little girl of six to understand whats happening. I hope she gets though this ok, and its such a pain as if we lived 2 towns over we would be able to access family councelling, help with money and things like massage and other relaxing stuff. Oh well, life sucks some days, and think today is just one of them. Hoping for a quiet weekend.

2009-05-05T13:57:00.000-07:00

thought it might be time for a picture of me, especially as its me writing this blog :)

Well, another week rolls by.

2009-05-05T13:48:00.000-07:00

Funny weekend here, Im feeling unwell, especially in evenings and morning and Darrens been looking after me. His a good nurse LOL. Im worrying he might get my cough and cold, but hoping he doesn't so no kisses for me.
I have paid for our holiday today and its left money tight but to be honest, its worth it if it gives us a break. We know where the nearest hospital is but i need to find out if that one has a cancer ward, just in case.

I would like to say to the person that left a message on my last thread, please feel free to email me, minx101@hotmail.com if you want.

all quiet on the westen front,

2009-05-03T05:42:00.001-07:00

Not a lot going on here. Darren had his first week back to work but only till 12pm everyday. His putting on a good front but is clearly tired out.
All the talk of swine flu is a bit of a worry as Darren would be so ill if he caught it, fingers crossed its all panic rather than truth.
We have decided to take up cycling as a family, should be fun! but the hope is it will keep Darren healthy, but not wear him out too much. (I think the kids do that)

Well thats our boring little life, which i am loving. So much nicer without weekly hospital appointments, or hospital stays.

Just a warning to all that read this because they have searched for blogs on CML, be careful what you read. There are some sad stories, as yes CML can and does kill people, but please try and remain postive. As sad as I am for those who lost loved ones to CML, I cannot let those thoughts enter my head. Maybe once Darrens better I will. Hugs to those that need them, prayers for those who are sick and love to all that love someone else xx

Hearts r us!

2009-04-29T15:13:00.000-07:00

I had my appojntment today, and they still dont know why my heart runs double speed. And with that in mind they have discharged me! They cant see any damage to my heart and cant find anything in bloods, so therefore dont think its serious. I have been told to go back in if the palpations start to bother me too much or if still going in another year. Oh well least I dont have to go abck for a while.

Also Tanisha has finally got an appointment for her assessment, as school and we have been concerned about her behaviour for a while. Child mental health has confirmed they think she has asbergerers but until assessment is complete, we cant get any help. Oh well just another thing to squeeze into our calander.
Its funny how when cancer is involved everything either seems to hard to deal with, or you just take it in your stride, which we do, as if you can deal with cancer you can deal with anything else!

back to work!

2009-04-28T12:31:00.000-07:00

Darren went back to work today. Just till 12pm. But his already in bed by 8pm so has taken it out of him. He looks tired but still loads better than before he was diagnosised. Im hoping this is a step forward for us and that he doesnt over do it.

Still waiting for some forms from the macmillian nurse to help with some pennies for our holiday. Alot of our savings were spent in the time Darren was in hospital and just after, silly things like car park, hospital food, take aways, petrol, just everything.

Im panicing about my appointment tomorrow with my cardiologist, i have to have a heart scan, so am thinking i will be there a while. Fingers cross eh?

Remission! of sorts! woo hoo

2009-04-27T11:00:00.000-07:00

Darren had his Monday appointment, and he is in clinical remision, which means that the side effects of the cancer are now normal! woo hoo. Still another 2 stages of remission to go before his clear but still its good news.

However, (why is there never just good news) Darrens kindeys arent managing again so his back on his kidney meds, which they took him off 3 weeks ago. His liver results still not normal but doing well.
Darrens not got another appointment for a month, but mine is wednesday, fingers crossed for that.

Im feeling the effect of this cold atm, im run down and my head hurts, but think 80% is stressed related

Working and cancer dont mix

2009-04-22T15:22:00.000-07:00

Well these two are the reason we get up and try and do normal things everyday. We have to get though this for them and we will.

Well as I said in my last post Im back at work, and I have to say Im enjoying being busy and seeing all the lovely people and families I work with. I really feel helped someone today,nothing major, just a little something but still felt good. Thats the thing with cancer, you lose all control of every part of your life, you cant help, you cant do anything and its so hard!
Im still having to tell a few girls at work whats happened in the last few weeks, as some dont know and I even got asked if I have been on holiday! hmm wishing so much that I was.
Strangely enough, 2 people today told me that they have had cancer, I never knew and its odd how cancer is like a little group, you dont want to join but when you do your glad someone else knows where you are at. I also reliased today that Darren is managing this so much better than I am. Im a control freak, and hate this all! Darren doesnt want to know too much, I want to know it all.
Darren has put plans in place to return to work on Tuesday, as long as all results are ok on Monday. His going back staggered, so as not to get too tired out, I just hope he doesnt over do it.

Tanisha went back to school yesterday and as always is loving it. We are still waiting on her appointment for her assessment for asbergers, but we have talked about it, and to be honest we dont care. We wouldnt be changing how we treat her at home but would be good to know for her education.

Im back at the hospital myself next wednesday to see my cardio team and hopefully get some results.
When I talked to my boss about all this earlier in the week she commented about how much we have to deal with, but I dont see it that way. It could be so much worse. We still have each other and wonderful support from friends and family, it never feel like we are going this alone.

Oh the only thing I need is a good massage! can anyone recommend a good one in my area?

Chicken pox!! aggrrr

2009-04-20T13:33:00.000-07:00

Well I went to work today, and had some intresting things going on, but atleast I was busy. :)
Darren's Macmillian nurse called to say she had just picked up meesage from Friday and was checking we were ok. Well yes his on anti Bs now, but has dickie tum. However while out with the girls today, he was exposed to some little kids with chicken pox!! So now he has to have a round of anti virols, as its a hope it will stop him developing chicken poxs, which would be so dangerous for him.
Why take your child out if they still can give it to other!! grr so angry.

Darrens feeling ok ish, but coughing up but will keep an eye on him.
Im torn between going with Darren for his appointment on mOnday and work.Im hoping to go with him and if its running ontime, will be fine, if its late, well I will have to leave him there at the hospital.

2009-04-19T15:50:00.000-07:00

I think since starting Chemo he is looking so much better, dont you?

normal?? whats that again??

2009-04-19T15:40:00.000-07:00

Well after my outburst on Friday, I reliased it may well have been down to PMT LOL.
Yesterday was lovely, I got loads done in the girls room and Darren got to take the girls to the park :)
I got to spend some nice mum and daughter time with Tanisha as we went to the cinema in the morning with Tanisha's friend Lauren and her mum Gemma. Was a lovely morning.
Today was not so great. Darren is feeling tired, and coughing loads. His started to get an upset tummy too, which I think is down to the drugs but said we will call the nurse in the morning if no better. Its just so weird how little things can really make you worry. Before Darren got cancer, him having a cold and bit of a dicky tum, would have me moaning about man flu, now I worry about him.

I have to go back to work tomorrow, Im looking forward to getting back to some sort of routine, although Darrens not back at work till next week.

Im fed up of hospitals though. I have another 2 appointments for me though this week, neither of which Im looking forward to, BUT if we can deal with cancer we can deal with anything else.
Tanisha is back at school on Tuesday, which will be nice. She s a bright one and loves school. Although has been so nice to have some family time, although wish it was for different reasons.

I know sometimes this blog is very "woe is me", but i find it really helps. Im not like that when you meet me, Im pretyt upbeat most of time, but is lovely to write it here, and saves me losing too many friends from being a depressing moo.

hugs to all that need them right now, prayers for all those who are battling cancer, or their families. xx

I want off!!

2009-04-17T15:02:00.000-07:00

Today sucked.
Darrens been coughing up green stuff, feeling hot and sweating loads at night. I called Macmillian nurse, she didnt call back, called the GP, no appointments so I called the cancer ward and was advised to take him to A&E. I called my mum to come and watch the kids, she wouldnt come, said Darren should take himself there. Called my sister, Maria who came over.
Arrive at A&E, wait an hour to be seen by the nurse, whilst trying to aviod standing too close to anyone who seemed unwell. Nurse called GP, who magicly had an appointment.
Got home and made the girls dinner, they had played me up most of the day to be honest and i hadnt got half as much done in the house as i needed.
Darren calls after seeing the doctor, to tell me he has a prescribtion for anti biotics but that also his friend is coming over earlier and will be here about 6.30pm.
Darren arrives home but tells me he had to pay for prescribtion as his not got has exsemtion card yet (all cancer people get free prescribtions).
Kids into PJs, me running round like a blue arsed fly trying to tidying up before friend gets here.

To be honest i cried whilst giving girls their tea, i felt like getting up and walking out, just walking, just to clear my head, but no chance i could have. I just wanted my bed.

I know people want to pop by and see how we are, but i wish people would call, i hate being surprised but people at my door. Im rarely not busy, my house always looks like a mess when people arrive. all it takes is one call to see if now is a good time!

enjoying the peace

2009-04-15T13:02:00.000-07:00

I havent posted since Friday as there really isnt anything to report, well small bits i guess.

We have had some nice weather so been out to a few parks, had 2 picnics and seen some family. Its been so nice to spend some family time together, although I wish we had this time for different reasons.
Darrens been harping on about getting back to the gym. I told him I dont think its best, I feel he should get himself well again (remission) being he thinks about that and the macmillian nurse agree's. I find myself getting so angry that all his worried about is losing muscle over getting well. But I guess its like when people lose their hair though chemo or bloat, its another thing about you thats different that you have no control over. I think he doesnt want to let go of the controls yet
:(
Darrens had a sore throat for a few days that we have to keep an eye on, and i have noticed his been quite tired the last few days to. His needed to go back to bed during he day again.
Darren has got my hunger back ten fold. Before he was diagnosised he wasnt eating as much and we now know thats because his spleen was so huge that it was pressing on his stomach. Now the spleen is smaller he is eating us out of house and home!! I guess his body is working hard to fight the cancer so i cant complain if he needs a few extra fats things :)

Thats pretty much our week so far. We are going to the farm tomorrow, cant wait! Im not sure who's more excited Darrren or the girls.

Well life does go on

2009-04-10T14:16:00.000-07:00

Well not a huge amount to report here. I went into work yesterday and spent sometimes with the families I work with. I was so busy it was lovely. I can home to a huge headache so had to go and lay down when I got home.
I also got to go to a dinner party with the girls from work, it was such a laugh and the food was lovely too.
Today I have spent the whole day trying to straightner the house out. We were in the middle of decrorating the house when Darren was diagnosised, so it was upside down for the last 4 weeks.
Im seeling like mad on ebay at the moment to make some extra cash, as we really are struggling this week. I know people say Cancer can affect your bank but i didnt really believe it. Its all the extra's, carpark, food out, having someone at home all day, petrol and extra cleaning stuff. To be honest money was the last thing on my mind when Darren was in hospital and after and its my fault for not keeping better track of it, but doesnt stop the stress :( Oh well 2 more weeks to payday.

Well we are at my sisters tomorrow and my mums on sunday so hoping some family time will cheer me up.

2009-04-08T15:28:00.000-07:00

What a beutiful day

2009-04-08T14:55:00.000-07:00

We walked to the local park/lakes today with the girls and some friends. The sun was shining and we had a wonderful day, playing and eating ice creams. It was lovely to forget about the cancer for once, its so hard as Darren looks so much better than he did 4 weeks ago, and he doesnt look sick to anyone else that didnt know him before. He walked with the girls, played and it just felt lovely to be normal, I almost forgot he was sick. Noticed the almost, well i cant stop worrying his over doing things.
The girls were shattered when we got home and to be honest thats all there is to report. A lovely day with my little family, these moments are precious, somedays you forget how much.

his over done it!!

2009-04-07T15:51:00.000-07:00

Well plans for today were to take our girls on a picnic to Knebworth, which is a good 45mins to an hour walk. This was planned before Darren got sick with 2 friends of mine. Darren decided he wanted to come and I explained how far ect, he said he was feeling well today and if he needed he would get bus back.
Well we all went, it was lovely and he insisted he could walk back ok. Got back to Gemma's house and sat down for a cuppa and Darren was falling asleep on the chair so I sent him home to rest. He slept for about 3 hours.

I rang the Macmillian charity to ask about moneys ect, as Darren isnt working at the moment and neither am i (although I go back after easter holidays).
Was told i dont love in their local area so no one can help me, and to go to CAB! So must be careful that Darren only gets cancer if we live in the right area!

I have been a little tearful today, silly things really set me off, songs on the radio, watching Darren playing with the girls and just thinking about how unfair this all is. I havent let Darrn see me, as I dont think he needs to know how hard Im finding this some days.

I went out tonight to my local and joined my normal team for the quiz, we didnt win! But the pub supports charities, and agreed to donate £150 to Leukemica research next week!!
Came home to find Darren looking very rough, sweaty and dark rings under his eyes. His temperture is ok, but have sent him off to bed. I hope his ok and we dont spend another night at the hospital.

Good text from friend with good news about her own worries of cancer, and all signs point to north of our road, so with hope she wont be joining me and Darren on our rocky road, which is great news, hugs sweetie.

woo hoo and boo hoo

2009-04-06T09:48:00.000-07:00

Well wonderful news that Darrens white cell count is back to normal range!! HIs Liver results have started to drop and hoping they will go back within normal range asap.
Bad news, why is there always bad news too??!! Hammersmith hospital have managed to lose/destroy Darren first lot of special blood results, and so the consultant isnt happy. It was the results to tell the doctor how well his body was responding to Chemo, as so they needed the bloods from his first day of dianogisis. Grrr consultant explained that it now is difficult to get a true picture of how he responds to the chemo! He had more tests today but not going to be true result as his been on chemo for nearly 4 weeks :(

Now white cells are down, he has to work on bring the percentage of cancer cells in the bone marrow down, then he will be in remission. Consultant feels this will take 8-12months. Still a long way to go but so happy with positive news today.

My friend has all my thoughts and prayers with her for good results today, good luck sweetie xx

My car passed MOT!!

We are walking to local ish (a good 45-60min walk) park tomorrow for a picnic. There is loads of us going so looking forward to a nice day. Got loads planned for days out over easter. Anything to keep our mind off cancer.

Wireless again :)

2009-04-04T15:18:00.000-07:00

Yea all my wires are gone :) Tanisha asked what they were this morning and Darren told her i was a robot and I was charging my batteries! cheeky so and so.
darren went off for his normal blood tests today so hoping it shows good results on Monday.
I have been trying to do a little more research today, but struggling to understand all the medical words and Im sure they do it just to make themselves sound brainly! I know they were focusing on lowering his white cells, but this is just a side effect of the cancer, but is a bad one, so hence the rush to lower these. They said last week that Darren will have regular bone marrow taken to check % of cancer cells. They said it will be atleast 8-12 months before classed as remission. I dont know why i was so shocked by that, but guess it sounds long.

Darren just got all excited as he found a bruise, but it didnt have a lump underneath. This happened loads before he was diagnosised because his blood was so clogged with white cells. Its strange how small things can give you such hope.

I was meant to go out tonight with some girl friends, but had such a headache i didnt go. Im finding im getting more of these, but im certain its just stress.

We are still planning to go on holiday in June, but may end up coming home half way though so Darren can see his specialist and then travelling back again, but hey i dont care!!

Well tomorrows another day, and Im learning quickly Sunday and Monday are the worst days of the week in this house. Only to learn results on Monday and feel fine until we start worrying about next hospital visit.

All wired up

2009-04-03T12:27:00.000-07:00

I had a lovely day at work, and had a lovely lunch too. I took my excersise test but half way though the machine died so they said they may have to call me back if the cardiologist doesnt feel there is enough info.
Im hooked up to my 24 ecg machine, so going to have to wear it till 4.30pm tomorrow.
I also found out today that some close may be starting the same journery as us. Im hoping she doesnt, but if she does I will be there if/when she needs me. Hoping for good results for her and for Darren on Monday, hugs sweetie xx

Darrens off to the vamps at path lab again in the morning for more tests, and really holding for good results for MOnday.
Oh and we are only at £22 for race for life so dig deep people, its worth its weight in gold. Thanks for the donations so far, your truley great :)

Tomorrow is going be hard, for me!

2009-04-02T14:54:00.000-07:00

This blog is mainly focused on Darren and I have completely forgotten about me. Im going into work tomorrow. I am helping to a group, which is fine, im looking forward to it, but also saying goodbye to 2 staff memebers who are lovely. I also have to go and see the cardio team tomorrow for my own tests. I have to do a excersise test, I run on a treadmill they see whats happening to my heart at the time. I also have to have a 24 recording of my heart so will need to be all wired up and then come home wearing them! I know I have a busy day tomorrow and im panicing. Im finding it hard to pull it all together some days. Any silly thing can start me crying and i hate it (I am a control freak, for anyone that didnt know).
Im hoping for good results from my tests as I cannot handle another bad result. Im looking forward to seeing my work girls again, they are a fab lot :)

Oh and please if you see me in real life and i ask if i can help please please dont say I have enough on my plate, as if i didnt want to help i wouldnt offer, and sometimes its nice to help someone else and be me, instead of darrens wife for a while, not that im planning on divorse, but you know what I mean. LOL

RACE FOR LIFE

2009-04-01T13:17:00.000-07:00

Its been a quiet few days here. Darrens doing well and seems to have some enegry back. We are just holding out for test results Monday. Not before my tests on riday though. Yucky, I have to have an excerise test and a 24 ecg tape done :( Hoping they can work out whats wrong my heart at the moment. To be honest though I havent got the time to owrry about me, so is stoppping me stressing.

Right me and my 2 bestest friends are doing "Race for Life" this year to raise money for Cancer research. Im hoping my sisters will join me too and anyone else is welcome. However, if you cant join us, please please sponser us, we have set up a web link to help it make it easy.

http://www.raceforlifesponsorme.org/darrendutton

please give us your money!!

Some good news and some bad

2009-03-30T06:30:00.000-07:00

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

2009-03-29T15:38:00.000-07:00

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?

2009-03-27T15:59:00.000-07:00

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 :(

2009-03-26T16:19:00.000-07:00

no more tea!

2009-03-26T15:42:00.000-07:00

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??!

2009-03-25T13:16:00.000-07:00

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!

2009-03-24T16:44:00.000-07:00

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

2009-03-23T12:07:00.000-07:00

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!

2009-03-23T11:51:00.000-07:00

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

2009-03-23T02:42:00.000-07:00

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

2009-03-21T15:49:00.000-07:00

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.

2009-03-20T13:40:00.000-07:00

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!

2009-03-19T12:49:00.000-07:00

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.

2009-03-19T07:13:00.000-07:00

Darren before he got sick

Our beutiful girls

No more chemo for now

2009-03-19T07:06:00.000-07:00

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

2009-03-18T18:23:00.000-07:00

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

2009-03-18T13:09:00.000-07:00

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

2009-03-18T12:42:00.000-07:00

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!

2009-03-17T13:47:00.000-07:00

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

2009-03-17T02:42:00.000-07:00

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!!

2009-03-16T04:48:00.000-07:00

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

2009-03-15T14:41:00.001-07:00

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

2009-03-15T03:42:00.000-07:00

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

2009-03-14T15:23:00.000-07:00

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.

2009-03-13T16:41:00.000-07:00

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?

2009-03-13T16:10:00.000-07:00

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