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

    MARCH 21st 2011

    saw dad yesterday for a few hours.he had a bad nite sat...not the cancer but had a massive panic attack which then followed chest pains which in turn due to the panic attack he thought he was dying(as he said why does this happen at nite and not daytime when u can think more rationally).mum was great and helped him relax and she is ready to tackle this traumas head on. dad is still off the cancer drugs untill at least thursday when he goes back to see his oncologist.he has decided he will go back on the everolimus even at half strength.as he says he does not have a choice really and wants the best chance for longer with us all.he was talking about mine and seans wedding plans for june so this is keeping him positive and going.ive not been too well through the night so will stay away for now untill i am better

  • FormerMember
    FormerMember

    FRIDAY MARCH 25th 2011

    there has not been much to report this week until yesterday.dad has been getting stronger by the day with no cancer meds and limited pain relief which is a great achievement. sadly our world has now come crashing down around us all.dad saw his oncologist yesterday armed with questions about re starting everolimus,side effects, surgery etc.he was told that he was borderline for going back on the cancer meds but that yes they could do this and start off at half strength.they also said there was no right or wrong decision to go on the meds ,only his decision which would always be the right choice.none of us know why as mum and dad both agreed they never wanted to know "how long do i have question" but something obviously made dad ask this question and we were given the devastating news that we are talking months now .im gutted and destroyed by this as is my brother not to mention how on earth my devoted to each other mum and dad are feeling.all four of us sat down yesterday to discuss treatment options.dad wanted our opinion on if he should try the cancer meds or just say enough is enough now.we talked through everything re the drugs,side effects etc and myself and my brother and mum all seem to b of the same opinion.everolimus can extend life by 2.1 months .if the side effects get bad then yes come off drugs straight away.at least u can say u have given it your very best shot and in a few months have no regrets u didnt try everything u could.i know this is a huge decision for dad to make and the dr did say he could make the decision for him if he couldnt himself.i know i cant speculate on what the dr would say but am thinking if he is borderline for this drug then surely they would say no if they really thought it wouldnt help but the 10 days he was on it they seem to think it was stabilized in the lungs.plus it is such an expensive drug £99 a tablet and as the dr said it is dads choice. i think dad is going to go back on the drugs at half strength but again whatever his decision we will all stand by him. this all seems very very real now and has hit me like a ten ton truck.my dad is my strong hero who looks after and protects me and i cant believe that he is dying.i always knew it wasnt curable but to hear those dreaded words months has just well i cant explain what it has done to me.i have decided against telling my 2 teenage children for now.i have to come to terms with it myself first which i cant ever see happening.im so scared ,lost,numb any emotion i can feel at the moment but it must be a million times worse for my mum and dad.i cant imagine the pain they are going through.to see my dad well up and his voice cracks totally destroys me sensing his emotions and feelings and there is nothing i can say or do to make it better...just be there which is what i intend to do and make very moment count!!

  • FormerMember
    FormerMember

    APRIL 1st 2011

    there is not much to report at the moment. dad has decided he will stay on the everolimus cancer meds at half strength. he has been on them nearly a week now and fingers crossed no side effects..long may that continue. he is starting to put a bit of weight back on as his appetite has picked up slightly. we have borrowed a wheelchair for the time being until his one is delievered so at least mum can get him out and about with her...seeing him look and feel better it seems so hard to take in he has been given months.dad has always been a fit and healthy person,very sporty and loves to win everything.not a gracious loser you could say and im sure his attitude to his cancer is the same.he wont lose graciously and will fight this battle every step of the way.im so immensely proud of my dad and what he is determined to achieve. we are having a big mothers day family day at mum and dads this sunday..about 12 of us in total so hopefully we can have a bbq so the little ones can run around outside. i will update when there is more news

  • FormerMember
    FormerMember

    APRIL 8th 2011

    dad was back at the oncologist yesterday.dr said as he has only been back on the everolimus 12 days there would be no change as of yet.he is back again in 2 weeks time when he would have had scans and x rays and then we will see if the treatment is working.the dr did say if in 2 weeks there was no change then there was no point staying on the cancer meds.the only positive to this is he wont have the side effects. dad has been feeling quite low and down for the last few days which is so not like him.i think maybe he is coming to terms now that he is not going to get better.it must be so hard to be given this prognosis and to still carry on as best you can. with the weather being so nice mum has taken him out in the wheelchair and hopefully on monday we will take him for a walk along the beach.he is looking very frail and about 20 years older than he is which is scary.he has also been put on steroids to help boost his appetite as he is losing weight fast.i sometimes wonder if this is due to the cancer or all the meds he has been.will update again soon

  • FormerMember
    FormerMember

    THURS APRIL 14th 2011

    monday was my birthday.the whole family went out for the day.me sean and my 2 kids mum an dad an my brother an his wife and 2 boys.we had a fab day.the weather was sunny and warm.we headed off to the beach and had a little go in the 2 p arcade then went for a lovely walk along the prom stopping at a harvester for a pub lunch.dad ate fairly well which was good.he seemed a little tired but as we had the wheelchair he didnt have to walk at all.we sat on a bench with the sun streaming down an dad had a little doze in his chair.finished off with ice creams and cake back at mum and dads it was a perfect day and birthday for me.im going over to see mum and dad today but fingers crossed he is doing quite well at the moment