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

    AUG 19th 2011

    3 months today dad and at times it feels a lifetime ago but i remember it as clear as anything,that last half hour with you. even though you were unconscious i know you heard us all and i said everything i wanted to say to you.i just wish i had told u over the years more often how much i loved you. we are such a close family but we never felt the need to say those words and thats something i wish we could have done.

    life is so very very different without you.you were the head of the family the glue that held us all together. we are coping as best we can and we all keep an eye on mum who seems to be doing so well(on the outside i think anyway) this is the first time she has ever lived on her own and she is adjusting well and we all try to help as much as we can...i hope we are making you proud dad....what i would give to just have 5 more mins with you.how i ache and hurt for that but i know you stand by me and i feel you about me always

    love you so much my darling dad and miss you more than words could describe x x

  • FormerMember
    FormerMember

    21st AUG 2011

    today sean and i went holiday shopping to grab some last min things before we go to sicily in a weeks time.i think i enjoyed the shopping more than sean but keeping him fed and watered def helped lol

    got a text off a really close friend who is moving to canada today for 2 years and got a bit emotional.9was even worse when we chatted the other day )...will miss her lots but me and sean are planning on going out there next june for a few weeks so the penny saving is starting now!!! then got home to find out another friends dad has just passed away from cancer.they were told last week he had 6 weeks and 4 days later gone!!!! its hit me really hard,even though i didnt know him its brought back everything i went through when dad died.ive text her and said i am here for her any time etc but not much more i can do(i remember getting text like this when dad died and they just kind of went over my head as was so wrapped up in my own feelings....a lovely day out with my hubby with lots of laughs now turned sad and emotional.....time to hit the pinot for a chillax and hope it wont make me feel worse !!!!

  • FormerMember
    FormerMember

    24th AUG 2011

    today i went for my MRI scan on my knee(netball injury,maybe time to give up??? i think not!!!)

    was not bothered about having the mri done to be honest but it seemed as soon as i entered this tunnel thing it was like it was not me there.my mind drifted and i really seemed to be assessing my life and how to move on...it became clear to me that my lovely dad was with me as i felt him close by and it was as if i could hear  him talking to me in my head (sounds crazy eh) he told me to live my life however i want as life is not a rehearsal its the real thing and if there is something u wanna do just bloody do it.dont hold back.or have regrets....this has given me much to think about as i really want a change of career ...the question is what do i want to do???

    i came out quite emotional from the scan and even ringing my husband several hours later about what happened i got emotional

    time to put some things in action like finding a new career now (am on holiday monday to sicily so will do a lot of thinking and reflecting then,,while enjoying the sun and wine)

  • FormerMember
    FormerMember

    26th AUG 2011

    today will be my last blog for about 10 days as we are off to sicily...me hubby 4 kids and mum so will have a fab chilled out time

    today has been one for chatting with mum tears and reflecting the last 3 months...dunno how it even started but me and mum began chatting about dad and how we all talk about him most of the time but none of us talk to each other about our feelings...well me and mum def did today and it was like a floodgate opened...she is so angry that she was robbed of her soulmate way to soon and is devastated that she does not feel him about her....she said why not why cant i..u hear people saying i know my loved one is with me but she said she cant feel dad about,not at home,the cemetary not anywhere...i did my best to reassure her as i do believe dad is about but cant explain how or why i feel it...we talked about dads decline and how stubborn he was and determined to stay with us all as long as possible...it also came about little things we said that we notice now was that dad said and did odd things an we think maybe the cancer mite have affected his brain also...we both agree that at dads last hospital appointment when they basically wrote him off and said no more we can do that the fighting spirit and hope he always had just went out of him...i confessed to mum that dad had hugged me a few weeks before he died and said he was sorry he prob wouldnt make my wedding...it crushed me again saying this to mum but it was then that i believe my dad knew there was no hope.

    mum desperately misses my dad to the point she really broke down saying his jacket hanging up does not smell of him anymore...she says it feels like he walked into our life and now he has just gone and thats it..i said she should spray some of his aftershave on the jacket

    we talked about seeing a medium/spiritulist church which i have been into that sort of thing for years but mum is not so sure...as i said whats the worst to happen ,,u get no message and lose 20 quid...surely worth a gamble? well i will be going to see him and is up to mum if she come with me

    we also talked about some counselling maybe as a family and i think its a good idea

    will talk to mu while we are away on holiday and see what happens.will also give my brother a ring and explain what happened today and see what he thinks

    love to all my mac friends and see you in 10 days x x  

  • FormerMember
    FormerMember

    SEPT 12th 2011

    its been a while since my last blog.we had a lovely holiday in sicily where it was hot quiet and quite relaxing. i fully intended to re evaluate my life and work situation and what i want to do.i guess the main thing i want is to fully live with my wonderful husband.as it is at the moment my house is in dorset and his is in berkshire. we have got his house on the market and he is looking to move here and we will buy a house together.we do spend lots of time together but it just feels like we are not properly married untill we have our own house and come home to each other every night.the easiest solution would be to move to seans house as it is plenty big enough for us all but i so love living near the beach and my family are here and also josh has just started his last school...also i grew up near where seans house is and went to school in that area so part of me feels like i would be stepping back in time and not really moving forward. i do have some fantastic friends in berkshire and also all of seans family is there too. such a hard decision to make for both of us but our love is strong and we have been in this situation for over 2 years and nothing will break us and for now we will carry on as we are.

    charlie my eldest is now having counselling .she has a lot of anger issues and is grieving so much for her grandad. they were so so close her being the 1st grandchild and the only grand daughter. my heart breaks to see her suffer but she can be so frustrating at times like most 17 yr olds i guess...i want to help and guide her but it seems to come across as nagging and that just irritates her which in turn winds me up

    josh has settled into his new school very well and is loving it. he is a quiet laid back boy(very much like my dad)

    work for me is ok but i want more from it. im now looking at doing a sports massage course and furthering my career there.i just need to get my ass motivated and get on and do it now!!!

    life is so very different without dad. we all have new roles to fill in our family circle. not a day passes when i dont think of him.sometimes im fine and can smile at a happy thought but other times its a drak dark place i am in and its like panic that he is not here and at times i still cant believe it which makes the panic worse..i have to keep telling myself that dad would not want any of us feeling low and down and thats what helps me through.

    2 of my closest friends have announced they are getting married after 13 years together which is fab news and i will be a witness. also on the same day they are getting their boys christened and i am godmother to the eldest so will be a magical day and i cant wait to help out etc.

    popped in and saw mum last nite and she has booked for us all to go to cyprus next easter(11 of us) so thats given us all something to look forward to

    im determined that my blogs should be more upbeat and not moping about anymore but i guess i have to be true to how i feel when i write them else its not really worth doing and i i am writing it for me i suppose but also hope that anyone who reads this can relate to it at some point and can help them. i guess by not blogging every day now i am learning to move on and take small steps back to normality. most of the time i just seem to ramble so apologies for that

    its a bright but very windy day today,perfect for a long walk down the beach which is where i am off to now before i start work later.have a good day my mac friends and chat soon x x