Scan results

It was 2 days ago scan results day,the worrying doesn't get easier, it was an afternoon appointment so in the morning I kept busy cleaning the house. We arrived at the hospital, didn't have too long to wait to get called in, after the usual how are you Jo went on to say the scan had shown growth in all the tumours even the few in my liver had grown,really dissapointed not what I wanted to hear.  now my options are carry on with chemo and just hope after more it will slow down or stop the growth of them but no doubt this is slowing down the healing of my leg or stop chemo but if I stop then I can't have more chemo (the rules of the drugs fund). The room went silent as we all looked at each other, I don't have any other choice than continue with the chemo, so that's the plan another 2 month of chemo then back to see Jo.
 This means no holiday for me but I've finally convinced Chris to take Adam abroad for a week, he really needs a break and I hope it will do him good it's just what he needs, that's my mission today to find them a holiday where they can go and relax.
 I had chemo yesterday think it was number 16 or maybe more I've lost count! I'm also back on antibiotics for my leg it's getting no better and I'm still in compression. As you can imagine with all that's going on I'm not feeling too happy, I'm trying to stay positive but it's so difficult when you hear news you don't want to hear.
Love Julie xx

Another day,another problem.

This week has been nothing but appointments,Monday morning visit to the nurse to get my leg cleaned and dressed, the dreaded scan in the afternoon. Tuesday- Macmillan unit for chemo bloods. Wednesday-long long day having chemo Thursday (today)-went to the nurse to get my leg cleaned & dressed leg is looking much better she doesn't think I'll be in compression much longer,my heel is still not good there's a pretty deep hole in my heel,they treat it with balm cream and a soft sponge dressing and hopefully once the compression is gone they'll be able to concentrate on getting my heel healed. Then the nurse noticed blood coming from the corner of my toe nail as she had a closer look she looked concerned as its very bruised too,she said she would send an urgent request to a chiropodist,before I got home I had the call from them,I have an appointment there today at 15:50 so I've that too look forward to! I'm exhausted today from chemotherapy yesterday it doesn't get any easier. I have my schedule of dates upto Jan 2017 and scan results on the 19th July I just hope & pray chemo is still keeping the tumours stable.
 On Sunday it's that time of year again, race for life day I'll be doing most of it in my wheelchair and I'll walk what I can. A lovely/emotional  day with my family & friends expecially my dear Mavis (Clair) who's done it by my side every year and taking part for me one year when I was too ill to take part. I feel so lucky to have her as a friend. Also I thank all who's sponsored me so many kind people I hope it will all help to find the cure that's so desperately needed,I know I'll never be cured from this dreadful disease, but as long as chemo keeps thing stable then I hope to have many more years ahead to enjoy seeing my beautiful children grow up into adults and grow older & greyer with Chris! that's all I wish for.
Love always Julie
Xx

Chemotherapy

It's been a while since my last blog post,so thought I'd update on how things are. Well I had the port put in my chest a few days before Christmas then chemo started the day after I felt OK with it until Christmas Day I was unwell I struggled on until 4pm then I went to bed. Before I knew it it was chemo day again after a few more doses it was my skin that suffered my fingers & toes they became terribly sore, it was decided chemo would be put on hold until they improved and I was given creams,I then got an infection in both my big toes I went to my GP and was given antibiotics but the day after I got worse so Chris took me to hospital where I was given iv antibiotics luckily it was a short stay as I began to feel better but had to return the day after for an ultrasound of my leg to check for blood clots,luckily no clots...phew!
As my skin got better I started chemo again,it was decided to lower the dose by 50%,then it was the dreaded scan day and the wait for results it was chemo day when we got the results,a mixed picture in that there are some areas that have improved and others that look stable but certainly there is no evidence of progression,we were very happy with that as we were told the 20% chance that the chemo would work so the plan is to increase the dose to 75% and carry on.
Then came along another problem a leg ulcer and a nasty one at that,once again chemo was on hold while I had a week of antibiotics it seemed to improve,chemo carried on again! I was visiting my nurse at gp surgery twice a week for it cleaning,I wasn't getting anywhere once again I was back on antibiotics they didn't help much. My oncologist asked what do we do carry on with chemo when we know it's working or stop chemo and get the leg better as the chemo was slowing down the healing,without any doubt in my mind it was carry on with chemo. After 7 long weeks my leg was no better,I finally got referred to the limb clinic where they did a Doppler test,now my leg is wrapped with a 3 layer compression bandage it's still not looking good and also discovered a deep cut on my heel so that's getting cleaned & dressed too. I'm back at the district nurse in the morning for them cleaning & fresh dressing and that will continue for twice a week not sure how long for I seem to be getting nowhere fast. Chemotherapy Wednesday think this one will be number 15. 4th July is dreaded scan day again & results on the 19th July,fingers crossed  treatment will still be working and I'm hoping for a break so we can get away on holiday in August. Will keep you posted on the results of the scan. Thank you for your continued support.
Julie xxx

Results day

Today results day, a day full of mixed emotions, as we sat in the waiting room waiting to see my oncologist my head is full of worry, the waiting is torture you think of the worst but hope for the best, luckily we didn't have a long wait. It was the first time Jo had seen me having to use my walking stick, I could see the sadness on her face as she mentioned it but I told her It helps me and it doesn't bother me now, we do have a good friendship with Jo after all I've been seeing her for 7 1/2 year now and she knows I'm prepared to take any treatment she can offer me. So after the usual 'how are you' she went on to say the scan does show the tumour in my pelvis had grown, that's what I expected due to all the pain but she was reassured that it's not spread anywhere else, she did mention the 2 nodules in my lung but they've not changed since previous scans so she doesn't think it's anything that we need concern about. The plan is 3 month of chemo every 2 week but first I need a permanent line in my chest, it's called a portacath (think that's how you spell it) that's done as day surgery in theatre, I should get an appointment  within 2 week then start chemo almost straight after. 

  The pain is much better with increased meds but still having trouble sleeping and  pain during the night, the steroids make me hungry I do nothing but eat! I've put on a stone in 3 week, but I feel much better for it and I seem to have more energy too. 

  For now I'm keen to get on with the chemo and hope it shrinks the disease and gives me more relief from pain. 

 I'd just like to thank you all for the well wishes. Don't know what I'd do without you all you give me hope & strength to fight on.

 Lots of love Julie xxxxx

Pain!

pain pain and more pain I'm bloody fed up of it, I've struggled with it for so long but over the last few months it's got a lot worse, several times I've been back to my GP and had morphine tablets increased not that it did any good, I knew I had oncologist appointment in the 13th so I struggled on till then in the hope she would help me, the night before the appointment was horrendous the pain was so bad I got no sleep I was just pacing the house and eventually cried myself to sleep! So the day of the appointment I was exhausted, Chris came with me and we didn't have a long wait then we were called in, as soon as the door was closed I broke down, as I explained just how bad the pain was it wasn't something she wanted to hear, she has arranged for the palliative care nurse to come out and see me and fingers crossed get my pain under control, the nurse is coming on Thursday am.  also I'm having MRI & CTscan within 2 weeks to see what the tumour is upto but I think we can guess due to all the pain and also my blood results were not very good, it's all such a worry until the results on the 17th November.
  Tomorrow is another milestone for me as Adam becomes a teenager, he was only 5 when I was first diagnosed so for me to see him reach 13 is a massive acheivement, here's hoping I get to his 16th and beyond, likewise with Jess as she turns 18 in March. I try to remain positive it's just so hard to when you're in so much pain,
Next update results day....please keep fingers  & toes crossed.
Julie xxxxx

Lonely

I've just read this that someone has posted on social media. Most of it sums up how I feel most of the time. Thought I'd share it on my blog.

   I'm the girl who hides behind a smile every day
   I'm the girl who has a tough exterior
   But that's not who I really am.
   Im the girl who had an illness.
   The girl who tried not show it when in pain.
    I'm the girl who bottles everything up.
    Sometimes I just need someone to talk to.
    Someone to care about me.
    Someone to listen to my problems.
    Someone who understands my worries.
    Someone to hold me when I cry.
    Nobody knows the real me.
    Nobody knows what I go through every day.
    Nobody knows what I have to do just to make it through the day.
    Nobody understands when I say I'm 'ok'
    I'm the girl who will cry herself to sleep every night.
    It's during the worst times that you will get to see
    The true colours of the people who say they care for you.

     Julie xx

Cancer sucks

A short post nothing really to update I just want to ssssccccrrrreeeeaaaaammmm!! The last few days have been horrendous so much pain in my leg, (add toothache to the mix as well!)  nothing I take seems to ease it at the moment, night times are terrible it's most people's favourite time of the day however not mine I dread  it the pain is always twice as bad during the night, don't know why that is?I can't get comfy I'm up taking pills & oramorph and filling hot water bottles and still it hardly takes the pain away. I'm such a grump then during day I have no energy to do any housework or anything. all I ask for is a good nights sleep surely not too much to ask for!
This evening I heard sad news that a lovely caring friend has sadly passed away, Josie would always stop me in the street to ask how I am or we would tweet to see how each of us were doing, I was saddened when she told me just a few short month ago of her diagnosis, I told her as people tell me to kick its arse. Today is a sad day and my thoughts are with her family. Xxx
I hate this disease so much. Sorry for the sad post!! Julie xxx