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 28th 2011

    today im feeling a bit wobbly and numb along with the tears falling when ever they feel like it.

    i saw my friend and di her hair for her wedding and she looked beautiful and it was a lovely relaxing atmosphere there. sean came with me..mainly for moral support for me as i didnt know if i would crack but moe importantly he held the tongs and pins and grips for me while i worked...what a star he is!!!

    our little village today had a street fair on and my youngest josh was involved with it.he was in the stocks having wet sponges thrown at him. i so wanted to go and support him but also knew i would have to face some close friends who knew about dad.determined though me sean and charlie went along just for half an hour.we saw josh and charlie got him soaked.i also bumped into 3 close friends and the obvious happened...they hugged me and said how sorry they were and i cried.i did try to hold it back as i think i may not have stopped if i really let go. my friends were amazing hugging me and all the while sean stood next to me rubbing my back keeping me calm.

    this afternoon we popped to the cemetery that we have been talking about having dad buried...its truly beautiful,very small and so peaceful and we are all happy this is where we would like him to be.

    we are now at mums overnight. my 2 children have gone to their dads overnight(i really feel charlie needs some time away as she had spent every day all day with dad at the hospice and josh at 13 needs to do normal boy things etc)...my brother and his wife and their 2 boys are here at mums and are staying over so we are all here for each other ...when i got here steve had been sat at dads desk and found a small note of paper. on it were a list of hymns and a classical piece for his funeral. we had to laugh as 1 of the hymns mum refused to have at their wedding so it looks like dad will get his way now and have it at his funeral...i never realised how very up and down like a rollorcoaster my emotions would be.

    .just today when i opened my back door a white feather fluttered down and when i got to mums and opened the back door a white feather was on the door mat.i like to think this is my dads way of letting me know he is never far away as he knows i believe in all of these things etc

  • FormerMember
    FormerMember

    xx hugs wendie great bug massive onesxx

    you have so much support form Sean and your famliy and friends am always her for you to sound off to just grab me when ever hunni xx

  • FormerMember
    FormerMember

    Wendie, i am so sorry to hear your news. Thinking of you and your family at this very sad time xx

  • FormerMember
    FormerMember

    MAY 29th 2011

    so far today has been very mixed...my really close  friend   pippa drove an hour an a half to see us all and after my initial crying i felt fine.i did have a few tears when i woke this morning too.

    i feel like im shutting down but cant explain how or why.i have def not cried very much today,just the odd thing sets me off but only briefly..part of me thinks i need to wait until i am totally on my own and then i will scream shout and cry

    mum cooked us all a fab roast dinner and she had a little moment when we finished eating as dad wasnt sat there with us. i had a chat with her in the kitchen and we both agree that today is an odd day.we both said we feel too normal and why are we not wailing as its only been 2 days since dad passed.i think some guilt comes into that too as we feel we should be more upset and because we are not it does not seem right.

    my sister in law and my nephews have gone home tonight but steve my brother myself sean and josh are stayin over.tomorrow we are all off out for the day and mum is staying at home.her sister and brother in law are popping in so that will be nice for her.

    why am i feeling so noraml today..it just does not seem fair or right?

  • FormerMember
    FormerMember

    MAY 29th 2011

    well 2 hours can certainly make a difference in your feelings

    tina and the boys went home and it was like the normality light has been switched off.steve has been sat in the office alone having some quiet time and after an hour mum me and sean joined him and we have been crying on and off for an hour...some of it from guilt as we have had a normalish day ( maybe coz the little ones were here and they keep u joyful)

    mum is feeling very angry and bitter now and feels after dads last dr appointment when they said was nothing more they could do that he just gave up.

    she hates that her first thought of him is of him dying and his last few weeks of his illness and we have tried to say there are millions of happy amazing memories and in time they will creep further to the first thought of him.but as we all have the same first thought when we think of him its very difficult to hope that good memories will be first on our minds

    from my point of view even though i was so close to my dad it bought me even close to him.i told him so many things i wouldnt have said had he not been ill and for that reason only i am grateful i got the chance to say what i wanted to.im just very sad that i didnt find the words to tell him before he was ill

    life is never ever going to be the same without my wonderful dad but with the strength he passed onto me and knowing he will always live on in us i hope i can learn to cope