the journey

2 minute read time.

my amazing dad has been battling cancer for nearly 2 years now(wish i had found this site then)i thought i would write a diary /blog of how his treatment is going. it all began back in april 2009 when a urine infection showed up a tumour on his right kidney.he was whisked in to hospital to have the kidney removed within a week and the op was a success.he felt great after the op and back to normal within days so it came as a great shock to us all at his 3 month check up that the cancer had returned.they found small nodules on his lungs and tumours in the bone(hip and bottom of back) by the start of october dad had been given the cancer drug sutent.the side effects he felt made him lose weight all his hair went snowy white,had no taste for food and nausea. the nausea was controlled with different drugs.one of the good things about this treatment was you got a 2 week break in each cycle so on his 2 weeks off his appetite returned and he started to feel better. the sutent meds kept him ticking away for 14 months.we got the news end of nov begining of dec 2010 that a tumour in the spine had grown from 7cm to 18cm so the sutent was not keeping the cancer at bay so he was removed from it. this came as a huge blow to mum,dad myself and brother as who knew what the next step would be. he suffered with pains in his legs and a scan showed a non malignant tumour compressing the spine making the legs painful so he had 2 lots of radiotherapy which def helped and shrunk the tumour.dad was told of a new drug that they wanted him to trial.sadly he was not suitable for the trial due to blood counts etc but was told there was a fairly new cancer drug called everolimus(afinitor) they wanted him to try. this however would need funding.the price was very high but like the sutent(which needed funding we were optomistic.the news back 2 weeks later was no PCT had turned us down but dads consultant had applied to another company and they said yes.dad has been on the new treatment 10 days now.the main side effect of this is such a sore swollen mouth with ulcers which stops his ability to eat and drink.he does seem quite out of it at the moment so we are contacting mcmillan nurses and his cancer nurse.

7th march 2011

dad has been admitted to hospital.for the last 4 days or so he has been quite out of it.he is very dissorientated ,grabbing for things that are not there,hallucinations,sleeping 22 hours a day.we have spoken to a nurse and she seems to think it could be to do with his type 2 diabetes as he had a urine reading of 27.8(very high) we were told to take dad to his cancer ward at the hospital where it seems it is not the diabetes but a build up of morphine pain relief(mum did stop giving him this 2 days ago as pain was ok and because he seemed so out of it)they have kept dad in for at least overnite and the morphine has been stopped. they have also stopped the cancer drug for now as his poor mouth is so sore so they want to try an get him back to better health before restarting the drug again. i will update when i have more news.

Anonymous
  • FormerMember
    FormerMember

    MAY 12th 2011

    went in to see mum and dad today and he has a slightly better night last night.while i was there his mac nurse came out(1st time i have met her) and she is just fab fab fab..she sat and chatted to all 3 of us and i warmed to her instantly and when mum took dad to the toilet she asked how i was feeling etc and that they are there for me also.

    she bought some neck cushions out for dad to help with him holding his neck up..the district nurse who had popped in earlier also mentioned about marie curie coming in for night care which dad wants but mum is still hesitant.im sure she thinks its moving on a step she does not want to take but we all said if she not happy it can be stopped ( i think she worried she has to keep house spotless when other people there)

    dad wanted some different ice cream and sauces so after my netball game i went on a mission to find them and popped back again this evening.

    dad was dozing on the sofa and mum told me that she had all sorts of calls from nurses etc and marie curie is set up as of tomorrow evening untill weds evening. she seems a bit taken aback its all happened so soon and that its 5 days running and not every other day. as i said if u not happy mum we can cut it down

    they have also offered nurses to come in and help dad get up and dressed in the morning but they both holding back on that for now.

    dads legs are still very swollen and full of fluid and when u press your fingers on them it leaves an indent. as my eldest said"grandad u have memory foam legs"...this raised a smile and a little laugh which was fab to hear.

    its mums birthday next week so asked dad if he wanted me to get mum a card and pressie from him.he already had a card which i found for him to write....a beautiful card with lovely words.he didnt think he would be able to write on it but he did and what he wrote was so beautiful and perfect it made me cry.....i will always love you forever and ever ( sums it all up for me)

    im going in tomorrow to see mum and dad so will post an update then

  • FormerMember
    FormerMember

    Hi Wendie

    Just popped in to read your update.  " Memory foam legs!! wow....what  an imagination! and so fantastic that it caused a smile.

    I pop on every day to see how you all are, you are doing remarkably well. it  must be so difficult for you all and in particular your Mum, who obviously feels its her place to be doing the caring for your Dad. Bless her.

    Hope you have all had a reasonabvle nights sleep, and are rested.

    Love Kim xx

  • FormerMember
    FormerMember

    MAY 13th 2011

    popped in twice to see dad and he seems in brighter spirits. his brother and nephew are coming down from lowestoft tomorrow and he seems to b looking forward to that. im busy at home this eve making some lunch for us all tomorrow so mum does not have to worry about it....also dads humour seems to have returned today and we had a little laugh and a joke which was fab

    tonight is the first night dad has a carer in so fingers crossed all will go well..im staying at home tonight and feel a few glasses of wine are in order.thankyou everyone for reading this and sending me your lovely messages

    i will be seeing dad tomorrow...

  • FormerMember
    FormerMember

    MAY 14th 2011

    i have just had a call from my brother.dad had a very bad night..he was shaking and shivering and could not settle.mum was in tears this morning and the dr has been called ...marie curie were fab with him and did what they could to help him. i am on my way over now so will update when i know more

  • FormerMember
    FormerMember

    MAY 15th 2011

    i got to mum and dads about half  11 saturday morning.the dr had been to see dad as he had "the rigours" severe shivering and shaking.this can last about 20 mins but dads went on for nearly 50 mins. he was very scared and thought he was dying. the dr spoke to my brother and mentioned to him that this could be the water infection he has or its possible the cancer has gone to the brain also as he was seeing things and behaving oddly. mum and dad dont know this and we wont tell them. dads brother and dads nephew were here and stayed till about 2pm. dad was pleased to see them and he chatted with his brother a lot in between sleeping.dad was looking and feeling better so about half 2 myself my brother an my eldest charlie took dad out in the wheelchair for a little walk.we went to the little park and wathed 4 oaps playing tennis which gave dad a little chuckle and raised a smile. he has since said he really enjoyed his little walk out so will try and do this for him as often as possible now. i had a few things to do this afternoon and it sounds awful but to be honest i just wanted to get away from cancer for a few hours.today has been emotional for me,dad seeing his brother(we know its the last time they will chat face to face),hugs and chats with my cousin and just in general today i have felt very upset i felt really guilty though and spoke to dad before i left and asked him if he wanted me and sean to come back later. he kept saying no its ok but the way he said it i knew he would prefer it if we were here. sean and i got back to mum and dads about 7pm and asked mum if she wanted us to stay over. she said no as marie curie were coming in and she didnt think was fair on them if extra people were here as they might feel they didnt need to be here and she was wasting her time. as i said to her im sure that wont bother them at all but if u want we will go home. when i asked dad what he wanted he asked us to stay over night so of course thats what we are doing. his marie curie nurse came at 10pm...she is lovely and had a chat with dad and then said to us he would like to listen to some country music an she felt this might relax him and stop the anxiety. me and sean found some cds and put 1 on and he relaxed instantly and even began to sing...was lovely to hear that

    also denise recommended we crush some ice for him to eat. i had made some orange and apple juice ice cubes a few days ago so gave that to dad crushed and he cant get enough of it.

    denise also asked if we had received the marie curie booklet ...post had come but not been opened so went out to kitchen and opened it with mum and she was a little upset. front cover said"marie curie...being cared for at home...towards the end of life...

    this knocked mum for six as im sure she still thinks dad has months left and we are just so pleased dad didnt open it. i have put the booklet away and as i said to mum it does need to be read and it does not mean he is going to die tonight or tomorrow but they have to give you as much information as possible.

    dad has been dozing in the chair on and off the last few hours and the music seems to be keeping him relaxed.

    its now 1am and things are as normal as can be.we have all been sat round chatting and mum sean and i will head off to bed soon and leave dad in the very capable hands of denise...

    update you all later x