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 7th 2011

    3.30am

    mum has been asleep for about an hour and a half on the sofa. dad is on the other sofa.he is quite restless and 1 min is laying down the next sitting up. we have watched a quiz show together and we did quite well !!! he needed some oxygen so got him that and was hoping the noise starting it up wouldnt wake mum....luckily it didnt and she slept through for another half hour or so...dad needed the toilet and i did try to get him up but couldnt manage it so had to wake mum(i must get her to show me tomorrow how to help lift him as she made it look so easy) he has now come back to the chair to sleep and mum is back on the sofa.the chair is easier to move him from to the sofa as it lifts him right out and i can manage that.dad just wants it to be 9am he said...then i guess the scaryness of night time is over then. he is now asleep in chair so i will just sit quietly for a while

  • FormerMember
    FormerMember

    MAY 8th 2011

    mum managed to sleep through till 6 am this morning which was fab. i sat with dad and we both dozed on and off from 4am till 6am. he only woke a few times untill 6 am when he needed the toilet and this woke mum up. its now 10 am and i have just woken up after 4 hours sleep.i feel guilty now though for sleeping as mum has been doing everything again this morning. i think what we need is 2 people to do 2 shifts .1 of us go 10-2 and 2-6 with dad but i guess that all depends on dads sleeping pattern as it always varies.

    he looks brighter today,a little tired though. i think we are going to pop to the shops to buy him some new shorts and trousers. he has such a build up of fluid,started at legs and now into the tummy area so none of his clothes fit at the moment

    i will update again later

  • FormerMember
    FormerMember

    MAY 8th 2011

    we popped to the shops and was there just about an hour.dad seemed to enjoy the fresh air and the sun is shining.we managed to but him some new shorts and some shoes(his feet are so swollen)

    we are now home and dad is watching arsenal footy match and has been awke for the whole of the 1st half. me and steve have sent mum for a little sleep on the sofa as neither of us will be able to stay tonight to help out so hoping a little sleep today will help see her though the night.

    is so sad looking at my dad.spoke to my brother steve and i said i really cant remember the last time i saw dad laugh or even smile. his eyes have lost their sparkly twinkle and its heartbreaking and i know mum is getting bitter that this awful cancer is robbing her of the man,soulmate,best friend she married over 40 years ago

    dad is about to tuck into another bowl of ice cream

    i will update later

  • FormerMember
    FormerMember

    MAY 8th 2011

    i popped home for a few hours earlier to get things sorted for my youngest(14) school project...dad has asked if i and my brother steve will stay again tonight so we have..mum was not so keen as she feels its her duty but hopefully we can all do shift time in the night and mum can get some sleep also. my eldest charlie has come over too and josh my youngest is staying at my brothers house with his wife and their 2 boys.

    dad has eaten better this evening and had some dinner and also some apple pie and ice cream along with plenty of fluids which is comforting.

    we are planning on playing a good old fashioned family board game this evening and then me and steve will try and approach the subject of getting some nurses in at some point just to help out( will post how that conversation goes later)

  • FormerMember
    FormerMember

    MAY 8th 2011

    its just gone midnite and we have managed to get dad into bed tonight.not sure how long this will last.mum is with him on the little camp bed.steve is snoring on the sofa(he has to be up early for work and getting his 1st shift of sleep now before we call him later.im wide awake on standby if mum wants to get some sleep so just having a small glass of wine and watching good ol gavin an stacey...always makes me smile

    dad has had very little sleep today so fingers crossed for a good nights sleep.we never got chance to talk about night care.maybe tomorrow?