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

    Hi  Wendie,

    Just wanted to say how sorry I am to hear of your Dads current condition, at least they should now be able to stabilise things and get his medication on an even keel while his mouth has a chance to recover.

    Also you are learning the sad lesson that Cancer does not just affect the Patient, but also the Carers, Family and Friends. It especially hard to watch someone you love hurting and so feel helpless.  Please try to stay positive, spend time with Dad, if you can, and tell him often how much he is loved, it can be better than morphine at times !

    There is never any real point in asking the doctor the question 'How Long' though it is a natural reaction. They can only give a best guess that may depress or raise false hopes. Best plan is live a day at time and try to build some good memories.

    Glad you are finding some help from the site, some of this next bit is something we usually say to the newer members - but it does still hold true !

    Welcome to the Club none of wanted to join, but few ever regret they did. We are a mixture of Patent's, Ex-Patents, Carers, Ex-Carers,  family  and friend who have all been affected by Cancer in some way. It does mean that there is always several who will have experiences they are willing to share if you have a problem or need some advice Maybe the best point is the understand, they will not only listen, they want to listen. It does not matter if you just want to write your blog, ask advice, have a rant or a scream when things get bad - they will be there and you need never feel you are alone.

    Sometimes it easier to talk to strangers you have never met rather than family or friends.

    Welcome To the Mac Family, you have joined the best site on the net for support, advice and friendship. You have so many new friends who care - you just have not us all yet.

    Hugs to You and Yours.

    Jxx

  • FormerMember
    FormerMember

    thankyou for the  lovely warm welcoming message j. i really feel like i have an extended family on here who know and understand how i feel. i find this such a great relief to write my blog

    MARCH 8th 2011

    dad is still in hospital. mum spent the afternoon with him and said he seemed more with it than yesterday.my self and my fiance sean and my 2 children charlie and josh went to visit  him this evening and he was very sleepy and not so great..he complained of pain down the right side but 5 mins later said he was fine so guess the morphine is still trying to work its way out as he still doesn't seem to know what he is saying. he didnt seem to be in any pain so thats a great relief.when he was awake he managed a few good sentences before he drifted off to sleep again. is so hard watching him laying in bed looking so frail and small.just want to scoop him up in my arms.it looks like they will be keeping him in for the next few days . they have still stopped the cancer drug everolimus as his mouth is still so swollen,sore and painful. i will be with him again tomorrow so will post another update.thankyou for reading this  

  • FormerMember
    FormerMember

    MARCH 9th 2011

    well what a difference a day can make.went to visit dad tonight and was like a different person.he was awake for the whole hour i sat with him and we chatted lots with mum and my brother. he was sat up and very much with it. the morphine seems to be getting out of his system pretty much now which is def better than the last few days.on the downside he is feeling pain in his lower legs(due to his spine compressing) they have prescribed him oxynorm which is a morphine substitute which is helping slightly with the pain.his mouth is still sore and he is finding it painful to eat.i am now on a mission to find the ingredients of the "magic mouth wash" i have heard lots about. will be visiting dad again tomorrow so will update then

  • FormerMember
    FormerMember

    MARCH 10th 2011

    i didnt see dad today as think i have got a bug(only small) but defo didnt want to pass on to him.mum saw him this afternoon and he seemed a bit stroppy (not like him at all) and the drs have spoken about transferring him to the mcmillan hospital for a few days to sort out his medication as they seem baffled as to why he is still sleepy and groggy when on no morphine.they have taken dad off of the oxynorm as that has similar side effects to morphine and his only pain relief at the moment is paracetamol  and codeine which has taken the edge off without knocking him out. mum went again this evening and dad has had a small fall while trying to get out of bed.he has a cut on his nose but nothing too major.all he keeps saying is he wants to come home..hopefully in a few days when he is stronger he will be home. we have to think of mum too and how and if she could manage if he did have a fall.fingers crossed he gets stronger and we can bring him home after the weekend.i have tomorrow off so going down with mum to see dad for a few hours so will update my blog then

  • FormerMember
    FormerMember

    MARCH 11th 2011

    have spent nearly 2 hours with dad today and he is soooo much better. his dr said this morning he may be able to come home today but talking to his nurse she was concerned it was a little too soon judging by he was still not quite with it yesterday. she sent occupational therapist up to see him and how he was walking etc.considering he has been in bed for 5 days he did fab doing his little walk.he is not happy at having to stay in as all he wants is to come home to mum and have us all around him so was very disappointed when was decided to keep him in a bit longer.he does understand why though (still not happy tho ..his humour has returned) and as we said we would rather u come home in a few days than come home today and back in hospital in few days because it was too soon.i am off to see my best friend tonite for a girly catch up and few bottles of wine so will go and see dad again tomorrow and post my update then