Search this site
Please login to your my.Macmillan account.
If you currently have an Online Community account, you will be asked to create a my.Macmillan account the next time you try to login.
Don’t have an account? Create one now.
What is my.Macmillan?
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.
MONDAY APRIL 25th 2011
things have been quite up and down the last 10 days or so..dad has still been getting panic attacks.always at night which is so much more scarier for him. he now has oxygen at home which he uses quite often as he has trouble breathing and has a dry cough.he has also had a hospital bed delivered to home now. he has only slept the whole night through a few times as he confided in me that he is scared to sleep in case he does not wake up(what on earth can we say to ease this worry,it baffles me this one).dad was also admitted to hospital friday just gone with chest pains.heart attack etc was ruled out.it seems maybe a few of the ribs have cracked or broken and this seems because the cancer is eating away at the bones. dad came home saturday afternoon and on easter sunday we as a whole family(12 of us) went to a beautiful house and gardens for the day where the children ran around doing an easter egg hunt and us grown ups sat an lazed in the sun eating lunch. dad had a fab time even if he was a little tired and seemed to get great pleasure spending time with us all laughing and smiling.
his pain is still not too severe at the moment. he has been given painkillers for his anxiety attacks but it seems they have the same effect as the morphine did so he is very loath to take them
keep fighting dad.we love you x x
3 MAY 2011
spent the afternoon with dad yesterday.he now has a lump on the back of his neck so holding his head up makes things difficult.he is seeing the oncologist thursday so hopefully this will shed more light..am just hoping its not another tumour..dad is still not sleeping at night,he becomes very agitated and stressed which also means mum is not getting any sleep either.its such a worry as she so needs her sleep to then care for dad the next day.we have offered to go over and spend the night and she can go upstairs to sleep but this offer has been declined.mum and dad are just soo devoted to each other they wont be parted which in some ways is so lovely ...my eldest charlie now knows dad only has months left and it hit her quite hard yesterday when we were there.dad needed his oxygen to move from the kitchen back to the lounge and he coulnt catch his breath.this scared her and i think its truly sunk in that her beloved grandad is going to die.all i could do was take her upstairs and comfort her and explain that even now i have moments when im with dad and just well up inside and take myself off to another room for a little cry.ive told her this is perfectly ok and it will do u good to cry as bottling it up wont help at all.
i will post back again when dad has seen the oncologist
Hi Twizz.
I just wanted to send you all my best wishes and hope that you are all ok and your Dad is bearing up.
Your blog is actually inspiring and am sure help to others. You are extremely brave to have the forthought to start it, Im sure its not always easy to update.
You are in my thoughts
Kim xx
hi TWIZZ love and hugs hunni hope to see you in caht soon xx
to kim and sam
thankyou for your messages.i am finding it hard to update at times but something kicks in and i find its something i have to do no matter how hard it gets at times(i always have my extended family here for support)
sam i will get back to chat soon as its been ages since ive been there
sending hugs to you both
twizz (wendie)
MAY 5th 2011
today the sun is shining but to me its a dark day.mum dad and my brother went to the oncologist today(why am i always working for these appointments.i hope the drsdont think its coz i dont care...am sure they dont think that but it wont stop me thinking it) and the news was worse then we were expecting. the cancer has got progressively worse since the last scan 2 weeks ago so they have now stopped all cancer treatments.they have put him on steroids to try and boost his appetite etc.my brother stayed behind on his own to speak to dr and explained about me getting married in 6 weeks and did they think he will make that.he was told live each day with dad as best u can but we cant speculate on it.he may make it he may not..mum and dad have no idea my brother asked this.me an sean my fiance have always had the option to just have a quickie marriage with just mum and dad but as my brother pointed out if we do this,will dad know we know something he does not or will he just agree with that then give up..im so lost and confused and all i care about now is being with my dad.i know if dad does not make my wedding in june he will be there anyway in spirit and is just so pleased to see me happy and settled so i feel i have his blessing either way.
i need to ring mum and dad as not spoken to them yet but am too upset at the moment and dont want them to know what i know.everything feels very fuzzy and numb so i think i will compose myself for a while then ring them.i have told charlie my eldest as she was here and knew my brother was on the phone.initially she was very upset and then seems to have gone into the mother protective role over me.how all our roles in life have changed at the moment.sean is on his way home from work to be with us all.my brother is coming over with my nephews so we can chat.i am so lucky to have such amazing family and friends. i know a lot of how i feel now is dark but i always bounce back and will be strong for mum and dad. i guess this is where my support of my mac friends comes in as u all understand my dark days happy days,despair ,rants etc
thanku all for being here and reading my blog
i will update again soon
xxx
Oh Wendie what an awfull time for you am so sorry for yo and your family xx samxx
MAY 7th 2011
yesterday i spent a few hours with dad.he wanted to get some paper work sorted so we sat for a while trying to do this.it must have been so hard for him as he always likes to do things like that himself and i felt i was intruding seeing things he prob didnt want me to see. he was very low and sleepy but we got a fair bit done.my brother stayed overnite last nite to help mum and dad out.dad was very agitated and restless(the night time seems to scare him) he moved from bed to sofa to chair to back in bed several times as just could not settle.this morning steve(my little bro) said they were both tired and not them selves..ie a little snappy but then again i would be if had no sleep.steve and i really feel mum should have a break a few nights a week as there is night care available but mum wants to carry on doing this without care for as long as possible so we steve and i will respect that and help out as much as we can. i am at mum and dads now and am staying the night so i can help out when needed.dad has been dozing on and off the last few hours i have been here.i am busy searching the net for some anxiety meds that will just help for 8 hours or so as anything he is taking now wipes him out the following day also which is no use(if any of you know any short term meds i would be very grateful for any info) have had a look and it seems beta blockers may be an answer(mum will ask mac nurse on tuesday when she visits) i have bought dinner over and some wine(hoping mum will have a glass and relax slightly) i had an hours sleep earlier so am prepared as well as i can be for little sleep tonight.dad had a call from his brother in lowestoft who is coming down next weekend to c him and he has spoken to his other brother and explained the situation to them now. as i am here over night i may keep blogging through the nite with updates
its 9pm and things are very quiet.im even trying to type on laptop quiet!! mum is asleep on sofa( think glass of wine helped) and dad is asleep in his chair.dad was slightly agitated earlier but seems calmer now.he ate a little bit of dinner..not much but then had huge bowl of ice cream.mum ate well as we do worry she is not cooking for herself as much.we had a huge thunder storm earlier and i looked outside to see mum up a ladder trying to sort leaking pipe which was pouring on window...she cam in an i said not the brightest idea mum standing on a metal ladder with lightning about!! i didnt even hear her go out.she is a very determined young 60 year old who wont be told what she can and cant do bless her
dad has just woken up so mum was up like a shot too..dad wanted some water so got it for him .we have to make him look up at us when he drinks so it lifts his head and is easier for him to swallow.mum is still on sofa and i hope she gets some more sleep
MAY 7th....2am
dad has been trying to sleep for over an hour now.he just cant decide where he wants to be.he does not seem too agitated but has moved from the sofa to the chair a few times now.he is dozing off as i type with his oxygen on...lets hope he gets some decent sleep.mum is sat doing her puzzle for 5 mins then ive asked her to please get some sleep as chances are dad will have no more than an hours sleep and the routine will start all over again.
3.30am
mum has been asleep for about an hour and a half on the sofa. dad is on the other sofa.he is quite restless and 1 min is laying down the next sitting up. we have watched a quiz show together and we did quite well !!! he needed some oxygen so got him that and was hoping the noise starting it up wouldnt wake mum....luckily it didnt and she slept through for another half hour or so...dad needed the toilet and i did try to get him up but couldnt manage it so had to wake mum(i must get her to show me tomorrow how to help lift him as she made it look so easy) he has now come back to the chair to sleep and mum is back on the sofa.the chair is easier to move him from to the sofa as it lifts him right out and i can manage that.dad just wants it to be 9am he said...then i guess the scaryness of night time is over then. he is now asleep in chair so i will just sit quietly for a while
MAY 8th 2011
mum managed to sleep through till 6 am this morning which was fab. i sat with dad and we both dozed on and off from 4am till 6am. he only woke a few times untill 6 am when he needed the toilet and this woke mum up. its now 10 am and i have just woken up after 4 hours sleep.i feel guilty now though for sleeping as mum has been doing everything again this morning. i think what we need is 2 people to do 2 shifts .1 of us go 10-2 and 2-6 with dad but i guess that all depends on dads sleeping pattern as it always varies.
he looks brighter today,a little tired though. i think we are going to pop to the shops to buy him some new shorts and trousers. he has such a build up of fluid,started at legs and now into the tummy area so none of his clothes fit at the moment
i will update again later
we popped to the shops and was there just about an hour.dad seemed to enjoy the fresh air and the sun is shining.we managed to but him some new shorts and some shoes(his feet are so swollen)
we are now home and dad is watching arsenal footy match and has been awke for the whole of the 1st half. me and steve have sent mum for a little sleep on the sofa as neither of us will be able to stay tonight to help out so hoping a little sleep today will help see her though the night.
is so sad looking at my dad.spoke to my brother steve and i said i really cant remember the last time i saw dad laugh or even smile. his eyes have lost their sparkly twinkle and its heartbreaking and i know mum is getting bitter that this awful cancer is robbing her of the man,soulmate,best friend she married over 40 years ago
dad is about to tuck into another bowl of ice cream
i will update later
i popped home for a few hours earlier to get things sorted for my youngest(14) school project...dad has asked if i and my brother steve will stay again tonight so we have..mum was not so keen as she feels its her duty but hopefully we can all do shift time in the night and mum can get some sleep also. my eldest charlie has come over too and josh my youngest is staying at my brothers house with his wife and their 2 boys.
dad has eaten better this evening and had some dinner and also some apple pie and ice cream along with plenty of fluids which is comforting.
we are planning on playing a good old fashioned family board game this evening and then me and steve will try and approach the subject of getting some nurses in at some point just to help out( will post how that conversation goes later)
its just gone midnite and we have managed to get dad into bed tonight.not sure how long this will last.mum is with him on the little camp bed.steve is snoring on the sofa(he has to be up early for work and getting his 1st shift of sleep now before we call him later.im wide awake on standby if mum wants to get some sleep so just having a small glass of wine and watching good ol gavin an stacey...always makes me smile
dad has had very little sleep today so fingers crossed for a good nights sleep.we never got chance to talk about night care.maybe tomorrow?