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 22nd 2011

    spent yesterday afternoon with dad. my friend came over to give him some reflexology. he was very agitated and anxious all day. he is being admitted to the macmillan hospital sunday(today) to try and help with the build up of fluid in his body and with his agitation. i left at teatime saturday to go on my hen night.i was in 2 minds whether to go or not but as it turns out it was a bloody fab night and was just what i needed.

    spoke to mum sunday morning who said da was being transferred to hospital this morning.i got to hospital at 1pm and dad was tucking into jelly and ice cream. he was in the bed and very comfortable and said he couldnt understand why he didnt sleep in his hospital bed at home and promised that he would try to do that now. he was very relaxed and only became slightly agitated when he had some trapped wind...rubbing his back soon bought that up lol. he dozed on and off for the afternoon and my children turned up about 4pm and we stayed till just after 6pm...dad had some fortisip for dinner and then tucked into another bowl of ice cream with pineapple pieces and really enjoyed it...the mac unit has no restrictions on visiting and everyone there is just so fab and ready to chat any time.we also have parking permits so dont have to worry about car park charges.

    dad was very relaxed when i left him and hope he has a good nights sleep

    i will be going in tomorrow to see him and will update then

  • FormerMember
    FormerMember

    MAY 23rd 2011

    went in to see dad today just after 11 and he was very very confused and not at all with it.when i walked in he stretched his arms out to me.not sure if was for a cuddle as he seemed to be making a grab for my can of coke. it was all very upsetting and charlie went out of the room in tears.

    my aunt and uncle were also there along with mum so we all took it in turns to sit with him.he is very uncomfortable as he has a bed sore on his bottom and its just not healing.as i said to mum i cant believe all the cancer thats in his body and the only pain he gets is from a bed sore from when he was in hospital back in march!!

    they have given dad an injection every now and then to help calm him and for him to sleep so that when he does drop off they can turn him and release the pressure on his bottom.

    my brother came down on his lunchbreak and so did my other aunt and uncle.there is a lovely day room at the hospice so we dont ever crowd dad and the gardens are just beautiful.

    charlie and me left about 3pm to get home for josh and wait for sean before we went back to see dad. the 4 of us got down there just after 6pm and dad was sat up in bed. im worried about his chest as its quite rattly now. he had eaten some ice cream and is drinking a fair amount.i picked up some info booklets when was there earlier and had read some of them...part of me wishes i hadnt but i know it needs to be read and i like to be informed

    steve and tina and their 2 boys turned up just after 7pm and we all took turns sitting with dad. tina and the boys left just after 8pm and took josh with them.

    me sean charlie and steve sat with mum and dad but he began to get very agitated so we left leaving steve and mum there to help calm him....i did give him some gentle massage but he just couldnt get rested so the nurse came an gave him an injection.this should knock him out for about 4 hours so hopefully he will sleep well

    mum and steve will call me later to let me know how he settled after i left. i will be going back again tomorrow so will update then

  • FormerMember
    FormerMember

    MAY 24th 2011

    mum has just rang me after speaking to the hospice and dad has not had a good night and his breathing has got worse. i chatted with my brother last night and also mum this morning and we all are in agreement that if possible we would like to bring dad home as that where he wants to be. i know mum didnt want to know how long but she now feels maybe she should ask so that we can prepare if he is allowed home.

    we all hate the thought of him being alone when we leave him at 10pm whereas at home 1 or all of us is there to be with him and each other.

    im going to get ready and go to the hospice and hopefully will speak to his mac nurse or dr and find out if we can bring dad home.

    my head is all over the place and my heart is broken and emotions are running crazy. part of me always had the belief that dad would make it to my wedding in 3 weeks but as each day moves on it seems further from my reach rather than closer

    update more later

  • FormerMember
    FormerMember

    MAY 24th 2011

    got down to see dad about 10.30 am and he was sat up comfortable in bed and his breathing was actually not bad. not rattly at all.he seemed quite with it in between dozing off. the only thing ive found which im not happy with is it seems when he presses buzzer for a nurse he is often left waiting 5,10,even 20 mins.i know they are busy but this for some reason really irritates me as its specialist hospice for cancer patients.when mum had waited over 10 mins for nurse to come she wandered out and they were all sat in nurses room having coffee!!! mum was gettin very agitated waiting for the staff which wont help her or dad

    the afternoon staff were so much better today and quick to get to him when he needed them so maybe was just a glitch this morning

    dad had a catheter fitted this afternoon so hopefully this will ease all his frequent calls to nurses for bottles.

    i left dad quite peaceful and comfortable and at the moment we plan on keeping him at the hospice for now

  • FormerMember
    FormerMember

    MAY 26th 2011

    i got to the hospice today about half 10 and mum was in quite a state. dad had had a really bad night and his breathing was awful.it was like he was gasping for breath which had given him chest pains. he was anxious agitated and not at all comfy...the nurses gave him an injection to calm him down and upped the amount of oxygen....it took a good hour or more for his breathing to become more steady.this was a shock for all of us and i went out to the gardens with charlie and sobbed for about 5 mins.

    dad seemed more peaceful around lunchtime but was still anxious when he woke.the nurses are putting a medicine pack onto him now as he cant swallow tablets etc any more and they also came and gave another calming injection.....these seem to work for about 20 mins and knock him out then he awakes and becomes agaitated again. after my brother left at lunchtime dad become anxious and cross....he kept trying to lift his legs out of bed(now swelling gone down he can move them) i kept trying to put his legs back in bed but he began to get cross and shouted at me.....its all so distressing not only for dad but for us having to see him like this.

    i went back again in the evening to see dad and he is still much the same.it seems even with the injections they are not knocking him out for long enough and when he wakes he just keeps saying...help me please help me please. this is heartbreaking for us all as he cant tell us what he needs help with.i feel like this is not my dad anymore and the cancer has robbed me of who and what my dad is.

    mum was going to stay overnight but after speaking to the nurse she told mum to go home and get some sleep and if needed they would call us.

    im so hoping dad has a restful night and stays calm