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 5th 2011

    today the sun is shining but to me its a dark day.mum dad and my brother went to the oncologist today(why am i always working for these appointments.i hope the drsdont think its coz i dont care...am sure they dont think that but it wont stop me thinking it) and the news was worse then we were expecting. the cancer has got progressively  worse since the last scan 2 weeks ago so they have now stopped all cancer treatments.they have put him on steroids to try and boost his appetite etc.my brother stayed behind on his own to speak to dr and explained about me getting married in 6 weeks and did they think he will make that.he was told live each day with dad as best u can but we cant speculate on it.he may make it he may not..mum and dad have no idea my brother asked this.me an sean my fiance have always had the option to just have a quickie marriage with just mum and dad but as my brother pointed out if we do this,will dad know we know something he does not or will he just agree with that then give up..im so lost and confused and all i care about now is being with my dad.i know if dad does not make my wedding in june he will be there anyway in spirit and is just so pleased to see me happy and settled so i feel i have his blessing either way.

    i need to ring mum and dad as not spoken to them yet but am too upset at the moment and dont want them to know what i know.everything feels very fuzzy and numb so i think i will compose myself for a while then ring them.i have told charlie my eldest as she was here and knew my brother was on the phone.initially she was very upset and then seems to have gone into the mother protective role over me.how all our roles in life have changed at the moment.sean is on his way home from work to be with us all.my brother is coming over with my nephews so we can chat.i am so lucky to have such amazing family and friends. i know a lot of how i feel now is dark but i always bounce back and will be strong for mum and dad. i guess this is where my support of my mac friends comes in as u all understand my dark days happy days,despair ,rants etc

    thanku all for being here and reading my blog

    i will update again soon

    xxx

  • FormerMember
    FormerMember

    Oh Wendie what an awfull time for you am so sorry  for yo and your family xx samxx

  • FormerMember
    FormerMember

    MAY 7th 2011

    yesterday i spent a few hours with dad.he wanted to get some paper work sorted so we sat for a while trying to do this.it must have been so hard for him as he always likes to do things like that himself and i felt i was intruding seeing things he prob didnt want me to see. he was very low and sleepy but we got a fair bit done.my brother stayed overnite last nite to help mum and dad out.dad was very agitated and restless(the night time seems to scare him) he moved from bed to sofa to chair to back in bed several times as just could not settle.this morning steve(my little bro) said they were both tired and not them selves..ie a little snappy but then again i would be if had no sleep.steve and i really feel mum should have a break a few nights a week as there is night care available but mum wants to carry on doing this without care for as long as possible so we steve and i will respect that and help out as much as we can. i am at mum and dads now and am staying the night so i can help out when needed.dad has been dozing on and off the last few hours i have been here.i am busy searching the net for some anxiety meds that will just help for 8 hours or so as anything he is taking now wipes him out the following day also which is no use(if any of you know any short term meds i would be very grateful for any info) have had a look and it seems beta blockers may be an answer(mum will ask mac nurse on tuesday when she visits) i have bought dinner over and some wine(hoping mum will have a glass and relax slightly) i had an hours sleep earlier so am prepared as well as i can be for little sleep tonight.dad had a call from his brother in lowestoft who is coming down next weekend to c him and he has spoken to his other brother and explained the situation to them now. as i am here over night i may keep blogging through the nite with updates

  • FormerMember
    FormerMember

    MAY 7th 2011

    its 9pm and things are very quiet.im even trying to type on laptop quiet!! mum is asleep on sofa( think glass of wine helped) and dad is asleep in his chair.dad was slightly agitated earlier but seems calmer now.he ate a little bit of dinner..not much but then had huge bowl of ice cream.mum ate well as we do worry she is not cooking for herself as much.we had a huge thunder storm earlier and i looked outside to see mum up a ladder trying to sort leaking pipe which was pouring on window...she cam in an i said not the brightest idea mum standing on a metal ladder with lightning about!! i didnt even hear her go out.she is a very determined young 60 year old who wont be told what she can and cant do bless her

    dad has just woken up so mum was up like a shot too..dad wanted some water so got it for him .we have to make him look up at us when he drinks so it lifts his head and is easier for him to swallow.mum is still on sofa and i hope she gets some more sleep

  • FormerMember
    FormerMember

    MAY 7th....2am

    dad has been trying to sleep for over an hour now.he just cant decide where he wants to be.he does not seem too agitated but has moved from the sofa to the chair a few times now.he is dozing off as i type with his oxygen on...lets hope he gets some decent sleep.mum is sat doing her puzzle for 5 mins then ive asked her to please get some sleep as chances are dad will have no more than an hours sleep and the routine will start all over again.