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

    JULY 8th 2011

    not posted for a few days as had no internet connection...grrrrrrrrr

    the last 2 days have been ok.ive been busy with work and seem to have been on the go a fair bit. mum has been to the drs as she had been getting dizzy spells and fell over at her sisters at the weekend. she didnt tell us as she thought we would worry which of course we have. the dr ran an ecg and her heart is all clear and a few other tests which showed nothing. she does have low blood pressure and with all the stress she has been under we are hoping its juts a little blip and things will be fine. on a positive note mum has decided she will join me and sean and the kids on holiday in aug to sicily. we are thrilled she is going to come with us and feel it will be good for her to get away. i know it will be hard as its the 1st holiday without dad but im sure we will help each other through it....everything seems to be a 1st at the moment. have had 1st fathers day without dad and now will be the 1st holiday.people have said the 1st of birthdays xmas etc is always the hardest and fathers day was very upsetting and difficult!!!

  • FormerMember
    FormerMember

    JUNE 10th 2011

    today has been difficult and mixed emotions

    sean and i went house hunting this morning and went to see 3 houses. 1 of them was just about perfect for us.slightly out of our price range but i guess i can dream lol

    this afternnon we went back to the macmillan unit in christchurch where dad passed away. they were holding a memorial service for everyone who has passed away in the last 2 months. i found it so bloody hard going back into the unit,much harder than i thought it would be. as i walked down to the toilet i became really shaky and ahead of me i saw the room where dad was. i bolted into the loo and had a cry before joining the rest of the family(mum my brother sean and 2 kids charlie and josh) as we were waiting for the service to start i turned around and saw my eldest welling up. i asked her if she wanted to go outside and she did so we popped out for a few mins to compose herself. she decided she still wanted to go in for the service and i think she is glad she did. it was a beautiful service,very mving and personal to each of us. all our loved ones names were called out(over 40 in last 2 months) and a candle was lit for each and every person even if there was no one to represent them. after the service we were offered tea and biscuits and to chat quietly with each other

    there was a particular part of a reading from the service that sean showed me later and it rellly struck a chord with me

    GIVE US THE SERENITY TO ACCEPT THE THINGS WE CANNOT CHANGE, THE COURAGE TO CHANGE THE THINGS WE CAN AND THE WISDOM TO KNOW THE DIFFERENCE

  • FormerMember
    FormerMember

    JULY  12th 2011

    i feel lost or am i. i dont know how i feel at the moment.i know a huge part of me is missing that only my darling daddy can fill.i miss him so much. it seems things are sinking in more now that what i have left are memories. oh to just be able to see him one more time and talk to him.i would give anything for that. i seem to have shut down from friends.i dont want to see people much or go out and im hurt that some of them dont understand that.im hurting still and that some have forgotton about me or maybe i have changed and i notice things more now or that i have changed and dont make the effort with them like i used to but surely i can be forgiven for this...my life has changed and im finding hard to adjust. i wish i was like i was before dad died but im not. a small piece of me has died with him

    i am so very very lucky to have the best husband in the whole world and my kids and mum and brother are all amazing and we are all here for each other

    this blog is part of my life now.its the one place i totally open up and am me and how i feel. yes i cry with my husband and family and yes i talk to them all but it seems here is the place i totally let go and vent everything.i guess its my kind of therapy

  • FormerMember
    FormerMember

    Everyone needs their therapy method, mine is walking the dog. It's the only thing that helps. I know exactly what you mean about wanting one more talk with him, I'd give everything I own and everything I ever own to have 1 hour sat in the sunshine chatting to him over a glass of wine. I used to do that loads and just counted it as part of life, didn't really take it in and only now do I realise it was the most precious thing in the world and I wasn't taking the time to appreciate it. Keep strong and carry on taking it one day at a time, you'll get through the grief one day, it's just going to take time. xxx

  • FormerMember
    FormerMember

    JULY 13th 2011

    ive had a busy day at work then had to go to josh new school for introductory  meeting...after that i poppd into see mum and my brother was there also. mum looked very drained and was quite tearful which in turn set me off..it feels good to be able to cry together.it seems sundays memorial may have brought it all home to us and how we have to adjust and adapt to life without dad..mum had been putting off filling in a form (private health plan from when dad was in hospice) usually u have to go to the hospice and get the form signed by dr etc before sending off to insurance company and mum just couldnt face going back to the hospice which is totally understandable. my brother has written a letter to insurance company with covering letters from mac hospice and hopefully they will accept that..if not i have offered to go to the hospice and get what we need.me mum and my eldest were chatting in kitchen and me an mum got upset talking about dad. mum says she feels more emotional now than when dad died and im the same. i suppose when dad died we had so much to do and then i was married 3 weeks later so we were all kept busy and i guess now we have time to reflect and think

    on a brighter note it looks like we will be having a lovely family holiday next easter. mum wants to take us all away so will be 11 of us in total and it looks like we will be hiring a villa in portugal...its a way off yet but gives us something to look forward to although will be difficult as will be another 1st without dad.we have a family party to go to in a few weeks an that will be hard as its dads family and will be another 1st thing without him....i hope it gets easier once all the 1st birthdays,xmas etc are over but i cant imagine it will be