What happens now?

I've now had my 5 lots of radiotherapy, everything went to plan but with radiotherapy you don't usually experience side effects till a week or so after your first dose, thought things were going well until Friday when I started to feel unwell,radiotherapy to the pelvis can cause chaos to the bowel and bladder and boy don't I know it!. I think today I'm finally coming out of the radiotherapy cloud!, I've managed to get and about with my mum this morning,however now I'm in need of my bed for a few hours before my children return home from school. I'm really not sure what is next for me I have an appointment with my oncologist but I've just noticed it's not till 11th November, i hope for a scan before then to see what damage the radio has done to the bas***d thing growing in my pelvis. My hope is that they would be able to offer me more radio but they know I'm prepared to take any option they can give me although I know deep down I'm just about out of all options, I won't give up though I need to be here to see Jess and Adam off to school in a morning and be here for them on an afternoon when they return home,I need to see them growing up into adulthood. For now I treasure every single day I get to spend with them. Nodding off now. Keep smiling & cherish every day. Love Julie xx

Struggling!

Don't know where to start, didn't ever want to write a post like I'm about to. Things are not good. My last few posts were all happy, I was all clear or so I was led to believe, after a few scans me and Chris went to see my oncologist Jo in Huddersfield last month, we sat in the waiting room for over 1 hour before finally going in to see Jo, after the usual how are you etc etc she then asked what we knew? We knew that I was given the all clear from leeds in April, I could tell just by her face something was wrong, then she went on to tell us things didn't add up mr S the surgeon was concerned that he hadn't got all the tumour, so why the fu*k were we told everything was good?? She couldn't answer that but after speaking with mr S she arranged the scan that confirmed the tumour was still there. We sat in her room in silence crying for a while, I was lost for words, so bloody angry. Next was an appointment that fri to see about more radiotherapy but as I've had 25 high dose before they can't give me much, but as she knows I'm willing to do anything so I can be mum to Jessica and Adam, my heart is breaking, I can't stop crying, I'm scared,my head is full of worry. Yesterday we returned to St James to the radiotherapy department, brought back so many memories from 6 year ago when I first when for treatment. I'm marked up now ready to start on the 4th sept when the children are back at school, I'm down for 5 treatments but I'm hoping for more. I'm not sure what will happen after radiotherapy,I'm taking 1 day at a time, we had a fun week last week with the children making lots of happy memories. Jess got her GCSE results too yesterday, she did amazing,we will be celebrating with the family at the weekend. Xx

Race for life

This morning I've taken part in my 5th race for life,with friends and family some taking part & some there to clap and cheer us on,the weather was much cooler than last year, that was a great help! I kept saying under 1 hour I would be happy and we were just over 1 hour 2mins so still happy and at least I got to the finish line! Still very much struggling with pain in my leg,however it did good today it behaved till now!. I had a MRI scan in Leeds nearly 6 week ago I hadn't heard anything then early Monday morning the nurse phoned, my case was discussed in last Fridays MDT and they've requested another scan, so I've got that to look forward to on weds then I go see my oncologist on the 28th July for the results,let's hope and pray that it's all clear. Will keep you posted...

Feeling happy!

It's now 15th April 1 month and 1day after surgery, a month of ups and downs mostly feeling down with lots of worry about the future. Today we finally received some good news, sat in the waiting room is horrendous,butterflies in my stomach then we finally got called in, the usually questions how are you etc etc I mentioned the pain in my leg although he knew something as he noticed my struggle walking into the room, he said because of the previous ops I've had all in my pelvis area plus the radiotherapy it's likely that it's damaged the nerves and unfortunately it's not likely to improve but can  be managed with pain relief. I also mentioned that I'm so worn out constantly I have zero energy, this is all to do with anemia, normocytic hb should be over 110 and mine is 85 so we need to keep a eye on this, have to wait for blood results should hear in the next few days. Then came the good news the 'no visible residual disease and the resection margins were all clear' also a few days after surgery we were told some more bowel was taken away it looked 'suspicious' they weren't sure if it was 'new disease' or 'scar tissue' it was sent of to the lab and it was a 'big lump of scar tissue' phew such a relief. They still want to keep a close eye on me so the next few months I need to build myself back up I've lost nearly 3 stone in weight then more scans back end of year but for now everything is looking good. Long may it continue. I can't thank my consultant enough, proffesor S,so many people have said 'he's one of the best' I truly believe he is he's given me the chance to see my children grow up,can't wish for anything more than that.

Surgery news!

It's now 7:40pm Monday 17th march 2014, surgery was Friday, I was first on the list so rather a rush in the morning to be ready for theatre, Chris was with me, the doctors came and told us what the procedure would involve, he said expect to wake up with lots of drips,nasal tube, canula in neck etc omg the horror on my face! I said by to Chris and was taken away crying, that was 8:30am the next thing I remember was waking up around 3pm in recovery then was taken to HDU, luckily no nasal tube and canula in both feet rather than my neck..OUCH. After a sleepy/sickness weekend I'm now on a ward, 3 of the surgeons came to see me this morning, I asked how it went Mr s said the tricky part was getting to the tumour after 2 previous resections this one was going to be difficult, I benefited well from having the chemo last year and it helped in the removal of the tumour, he managed to get all around and underneath without any damage, this doesn't mean that it all has been removed as we need to wait for all lab results but he was happy. Jess and Adam came to see me today, made me smile lots, but they've gone and I miss them so much, wish I could go home with them. I'm still in pain on and off,morphine and other drugs helping, I have a wound that will hopefully heal well this time and hopefully next few days the drain in my groin can be taken out and start to feel stronger I haven't done any walking yet so that's tomorrow's plan then possibly home early next week. Thank you for all the lovely messages and special thanks to Clair & Darren for coming to sit with me while in HDU. Xx

Surgery date at last!

Finally after months of pestering I now have a date Friday 14th march,this Friday, I'm very nervous I just hope and pray that prof S is able to remove the tumour, fingers and toes crossed please!. I've had a difficult few weeks health wise, firstly urine infection this is nothing new really as I have a stent from kidney to bladder so prone to infection, however this was far worse than I've had before, we had to call emergency doctor at 4am on my birthday, then the same day had to go to A&E as I felt terrible,came home with different antibiotics that seemed to help, then a few days later bowel blockage so had to call 999 for an ambulance,I felt so ill I just wanted to cry and sleep! Feeling much better now though and I'm all ready for Friday, will keep you posted on things when I can xxxx

Thank you

Just want to say thank you to all who have sent texts and emails wishing me well,people who i don't know and never met, I will get round to replying to you all this week, I really appreciate it, It gives me strength and positivity so once again thank you all xx I hope I get some sleep tonight, when everyone looks forward to going to bed I dread it,it's so frustrating I'm worn out my eyes feel so heavy. Bad night last night woke up in pain, couldn't stop crying, on a scale of 0-10 it was definatly a 10,Chris heard and came to my rescue he wanted to get an ambulance but what do we do with the kids at 2am? We now have my mum taking her phone to bed with her! Luckily it eased and we both managed an hours sleep,Chris then had to go to work,he must have been worn out, everything is such a worry. Still no date for surgery but I do have pain relief and tablets that are to relax my nerves and muscles and should help me sleep in no time,  so will shortly be taking them and fingers crossed they help me. Goodnight x

Bad bad week!

What a week,health wise not been the best it's been one thing after another,but I think I'm finally getting over it.i should be thinking about going to bed but I'm wide awake,as Chris says that's probably because I've slept most of the last week!. More sad news from my last blog one of the ladies I mentioned passed away just 5 days before her daughter turned 4,so unfair, also another young lady sadly passed away then last night a young man Chris who recently married. I say it every time but when's it going to stop?.
 My life has changed beyond recognition recently,I do not think for the future I am unable to see past today, that's a good thing though as I am living in the now, right?. We all go on about our daily lives it's usually doing the same thing day in day out, some days you only have to read the social network sites! People moaning that they have to go to work (no offence,each to their own and all that!) believe  me I would give anything to be able to go to work and not to be in this situation,I suppose you have to be in that situation to realise it.
 I've been reading more about bowel cancer the uk's 2nd biggest cancer killer,I've never felt or wanted to before, denial maybe? A few statistics for you all to read sure many may want to skip this bit! More than 8 of 10 bowel cancers are diagnosed in people aged 60 and over.

* public awareness of the symptoms of bowel cancer is low,but spotting the signs early and getting medical advice could save people lives.
* It affects 33,000 people every year in England with the majority of cases occurring in people over the age of 55.
* There are 13,000 deaths a year but it can be less deadly if spotted early.
* More than 90% of people diagnosed at an early stage survive for at least 5 years compared with only 6% of those diagnosed at a late stage.
Bowel cancer is also referred to as colerectal cancer it includes both cancer of the colon and rectum.
I've also been reading more into the stages of this cancer stage 1-4, when we asked back in 2008, the consultant said between stage 3 & 4, stage 3-roughly 23 out of every 100 people with colorectal cancer are diagnosed at this stage, the outcome depends on the number of lymph nodes that contain cancer cells, after surgery almost half of those with stage 3 will live for at least 5 years (gulp)
Stage 4- in roughly 9 out of every 100 people with colorectal cancer has already spread to another part of the body when they are diagnosed,for this advanced cancer the survival rates are lower only about 6 people out of every 100 will live for at least 5 year after diagnosed . Bit depressing isn't it? But hey I'm not looking at statistics I've said it all along I will fight and I won't give in!!
  So where were at....after several calls to mr s secretary we are still don't have a date,I've phoned,my dad and brother even my lovely oncologist has tried to push for a date,we have to ring back up Monday pm so if everyone could have their fingers tightly crossed Monday pm in the hope I get a date. I know my mum doesn't read this she won't,that's understandable, as always she's been a star this last week, coming at 8 to get the children to school, walking Rowan (I struggle to do that job now with my leg) she does my housework, washing, ironing, more dog walking then it's time for her to pick Adam up, I can see the upset in her eyes her just seeing me like this, I see it in my kids eyes too ,for them to come home from school and I'm still in my pyjamas half asleep with no energy to hardly speak, I see them glancing over at me I always manage a smile, it's dam right unfair.
  Me and Chris had a lovely time on out spa break for his birthday and an extra special treat because he's a star! Me,Jess and Adam are so very proud of him for everything he does for us. I'm falling asleep so goodnight xx RIP Jane,Sheila & Chris xx

Can't sleep...

It's now 4:10am, I'm catching up with recorded tv,with my leg rested on a hot water bottle waiting for painkillers to take this pain away, why is my pain always worse during the night when I need to sleep? I contacted the hospital on Monday but still no date surgery, she would chase things up for me, still not heard anything so will be phoning up again after the weekend although now I can't see me getting a date in January. It's not been a very good this week woke up at the beginning of the week to news of a internet friend had lost his battle with bowel cancer, last time Tony messaged me was to say he had read my blog and he could relate to my journey, RIP Tony. A few days of hearing the sad news about Tony I woke up to more bad news of yet another sad loss of Hazel, chatted to Hazel many times through twitter and Facebook always there to offer support, it's like a big kick in the stomach every time, so cruel so unfair, when's all this sadness going to stop? Two young woman both whom have young children both bowel cancer 1 who has been given just weeks the other young lady possibly just months if chemo doesn't work , how do you reply to people when they tell you such devastating news?. It's been a stressful week for My husband Chris too, I'm very proud of him. I'm feeling sleepy so will try grab a few hours sleep now. RIP Tony and Hazel, my thoughts very much with their families at this difficult time . Happy weekend folks, smile and be happy! Xx

Lots to look forward to!

It's now 2nd January 2014, was planning on writing yesterday but instead I was in bed all day poorly! Hope you all had a magical christmas and new year, our christmas was quieter than normal but we loved it just spending time together on our own, Jess and Adam got everything they wished for and more, Adam happy with his ps4 and games and Jess mostly money, vouchers, 9 bottles of perfume (hopefully now she will stop using mine!). Chris bought me the most gorgeous eternity ring plus lots more things, I'm very lucky. New Year's Eve we went to my brothers house, we had a lovely evening we didn't stay to see in the new year as my leg once again was giving me grief. I've still not had a date for surgery so on Monday I will chase that up, I want this unwanted growing alien removed from my body ASAP! We've so much to look forward to this year but with surgery looming and not knowing how it will all work out I'm finding it hard to look forward to all the wonderful things we have planned. In March Jess turns 16 wow can't believe she's going to be 16, I'm hoping to take her to Paris for her birthday but until we know when surgery will I can't book it, another big birthday in March my brother turns 40! End of march I'm off to my favourite place Chester for Michelle's hen do, love Chester we go every year for our anniversary. May sees us flying out to Mexico for Andrew and Michelle's wedding. June going to see Dolly Parton with my dear friend Mavis. Another big goal for me is seeing Adam starting high school in September another wow he was only in reception class when I was first diagnosed with cancer. Then it will be nearly christmas again!. Wishing you all a wonderful 2014, cherish everyday. X