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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.
Hi Wendie,
Just wanted to say how sorry I am to hear of your Dads current condition, at least they should now be able to stabilise things and get his medication on an even keel while his mouth has a chance to recover.
Also you are learning the sad lesson that Cancer does not just affect the Patient, but also the Carers, Family and Friends. It especially hard to watch someone you love hurting and so feel helpless. Please try to stay positive, spend time with Dad, if you can, and tell him often how much he is loved, it can be better than morphine at times !
There is never any real point in asking the doctor the question 'How Long' though it is a natural reaction. They can only give a best guess that may depress or raise false hopes. Best plan is live a day at time and try to build some good memories.
Glad you are finding some help from the site, some of this next bit is something we usually say to the newer members - but it does still hold true !
Welcome to the Club none of wanted to join, but few ever regret they did. We are a mixture of Patent's, Ex-Patents, Carers, Ex-Carers, family and friend who have all been affected by Cancer in some way. It does mean that there is always several who will have experiences they are willing to share if you have a problem or need some advice Maybe the best point is the understand, they will not only listen, they want to listen. It does not matter if you just want to write your blog, ask advice, have a rant or a scream when things get bad - they will be there and you need never feel you are alone.
Sometimes it easier to talk to strangers you have never met rather than family or friends.
Welcome To the Mac Family, you have joined the best site on the net for support, advice and friendship. You have so many new friends who care - you just have not us all yet.
Hugs to You and Yours.
Jxx
thankyou for the lovely warm welcoming message j. i really feel like i have an extended family on here who know and understand how i feel. i find this such a great relief to write my blog
MARCH 8th 2011
dad is still in hospital. mum spent the afternoon with him and said he seemed more with it than yesterday.my self and my fiance sean and my 2 children charlie and josh went to visit him this evening and he was very sleepy and not so great..he complained of pain down the right side but 5 mins later said he was fine so guess the morphine is still trying to work its way out as he still doesn't seem to know what he is saying. he didnt seem to be in any pain so thats a great relief.when he was awake he managed a few good sentences before he drifted off to sleep again. is so hard watching him laying in bed looking so frail and small.just want to scoop him up in my arms.it looks like they will be keeping him in for the next few days . they have still stopped the cancer drug everolimus as his mouth is still so swollen,sore and painful. i will be with him again tomorrow so will post another update.thankyou for reading this
MARCH 9th 2011
well what a difference a day can make.went to visit dad tonight and was like a different person.he was awake for the whole hour i sat with him and we chatted lots with mum and my brother. he was sat up and very much with it. the morphine seems to be getting out of his system pretty much now which is def better than the last few days.on the downside he is feeling pain in his lower legs(due to his spine compressing) they have prescribed him oxynorm which is a morphine substitute which is helping slightly with the pain.his mouth is still sore and he is finding it painful to eat.i am now on a mission to find the ingredients of the "magic mouth wash" i have heard lots about. will be visiting dad again tomorrow so will update then
MARCH 10th 2011
i didnt see dad today as think i have got a bug(only small) but defo didnt want to pass on to him.mum saw him this afternoon and he seemed a bit stroppy (not like him at all) and the drs have spoken about transferring him to the mcmillan hospital for a few days to sort out his medication as they seem baffled as to why he is still sleepy and groggy when on no morphine.they have taken dad off of the oxynorm as that has similar side effects to morphine and his only pain relief at the moment is paracetamol and codeine which has taken the edge off without knocking him out. mum went again this evening and dad has had a small fall while trying to get out of bed.he has a cut on his nose but nothing too major.all he keeps saying is he wants to come home..hopefully in a few days when he is stronger he will be home. we have to think of mum too and how and if she could manage if he did have a fall.fingers crossed he gets stronger and we can bring him home after the weekend.i have tomorrow off so going down with mum to see dad for a few hours so will update my blog then
MARCH 11th 2011
have spent nearly 2 hours with dad today and he is soooo much better. his dr said this morning he may be able to come home today but talking to his nurse she was concerned it was a little too soon judging by he was still not quite with it yesterday. she sent occupational therapist up to see him and how he was walking etc.considering he has been in bed for 5 days he did fab doing his little walk.he is not happy at having to stay in as all he wants is to come home to mum and have us all around him so was very disappointed when was decided to keep him in a bit longer.he does understand why though (still not happy tho ..his humour has returned) and as we said we would rather u come home in a few days than come home today and back in hospital in few days because it was too soon.i am off to see my best friend tonite for a girly catch up and few bottles of wine so will go and see dad again tomorrow and post my update then
MARCH 12th 2011
spent last nite with my friend.we lit a candle for our friend and fellow netball player helen as it is 1 year today since she lost her brave battle with cancer.her ashes were scattered today in her favorite place so that has bought some comfort on a sad day.
on a more positive note dad was released from hospital today.ive been over mum and dads for 3 hours this afternnon.he seems to be doing ok.he did mention he may have come home a little too soon...more for mums sake as he does not want to be a burden or put to much pressure on her.like i said "dad you are not and if any of us think mum cant cope we would do something about it."that seemed to ease him a bit.he spent most of the time awake(watching his beloved arsenal on tv....not happy they lost tho!!) his pain relief is down to paracetamol and codeine and he seems to manage ok at the moment. i am going back tomorrow to see them both so will update my blog then
MARCH 13 th 2011
dad has had a really good day today. he was in a bit of pain last nite but refused to take the oxynorm as didnt want to go back to how he was and managed ok with the soluble paracetamol and codeine have spent the afternoon with him at home and he was really bright and cheerful and talking about my wedding in june. mum is popping out for a few hours tomorrow so i will go over and spend time with him.things def seem better
MARCH 14th 2011
today has been a fab day for dad...mum went out this morning for a few hours so i drove over to their place to be with him.he was up and about mobile even sat at the desk in his office going through emails and sorting bills out.we had a really good chat and talked about his cancer drug and how he feels if they will re start it.he has faced the fact that he is not going to get better now and there is no cure but that he will live and enjoy each and every day.considering that he has faced up to this he is in really high spirits and was like he wasnt ill at all.he is so positive still and im sure he thinks a miricle cure is just around the corner......maybe one day there will be!!! lets hope this great outlook and his health being as well as to be expected at the moment continues.
MARCH 15th 2011
rang dad this morning and he informed me he was off out with mum to the bank and posy office!!!! what a lovely warm sunny day to be going out as well.i popped over after lunch and apart from being a little tired he was in great spirits and chatty. mum is still concerned he is not eating as he should be and they will chat to his oncologist when they see him tomorrow. dad may go back on to the everolimus at half strength.....part of me want him on it to extend his life and the other part says no leave him be as he is doing so well at the moment...as me an dad said we need an identical clone of him.1 taking the meds the other not to compare...then again i guess thats what cancer research and trials is all about.his attitude is fab and he is a shining example and im so proud of him
March 17th 2011
dad saw the oncologist today.he is off all cancer meds now and just codeine and soluble paracetamol along with the diabetic meds.he has been told by oncologist that the everolimus even though only on it for 10 days had def hlped as he is much more mobile(seems the blip he had was def morphine related) he has been told he can go back on the everolimus at half the strength and see how he is or to just stay off all cancer meds...its a big decision as he is feeling so well at the moment but i do worry how long this will last.i would like him to go back on the everolimus and if it wont agree with him we can take hm off but that is not my decision to make but then again i dont want him ill again and in hospital if he has problems...its a nitemare decision and i will support my dad every step of the way no matter what he decides to do
MARCH 21st 2011
saw dad yesterday for a few hours.he had a bad nite sat...not the cancer but had a massive panic attack which then followed chest pains which in turn due to the panic attack he thought he was dying(as he said why does this happen at nite and not daytime when u can think more rationally).mum was great and helped him relax and she is ready to tackle this traumas head on. dad is still off the cancer drugs untill at least thursday when he goes back to see his oncologist.he has decided he will go back on the everolimus even at half strength.as he says he does not have a choice really and wants the best chance for longer with us all.he was talking about mine and seans wedding plans for june so this is keeping him positive and going.ive not been too well through the night so will stay away for now untill i am better
FRIDAY MARCH 25th 2011
there has not been much to report this week until yesterday.dad has been getting stronger by the day with no cancer meds and limited pain relief which is a great achievement. sadly our world has now come crashing down around us all.dad saw his oncologist yesterday armed with questions about re starting everolimus,side effects, surgery etc.he was told that he was borderline for going back on the cancer meds but that yes they could do this and start off at half strength.they also said there was no right or wrong decision to go on the meds ,only his decision which would always be the right choice.none of us know why as mum and dad both agreed they never wanted to know "how long do i have question" but something obviously made dad ask this question and we were given the devastating news that we are talking months now .im gutted and destroyed by this as is my brother not to mention how on earth my devoted to each other mum and dad are feeling.all four of us sat down yesterday to discuss treatment options.dad wanted our opinion on if he should try the cancer meds or just say enough is enough now.we talked through everything re the drugs,side effects etc and myself and my brother and mum all seem to b of the same opinion.everolimus can extend life by 2.1 months .if the side effects get bad then yes come off drugs straight away.at least u can say u have given it your very best shot and in a few months have no regrets u didnt try everything u could.i know this is a huge decision for dad to make and the dr did say he could make the decision for him if he couldnt himself.i know i cant speculate on what the dr would say but am thinking if he is borderline for this drug then surely they would say no if they really thought it wouldnt help but the 10 days he was on it they seem to think it was stabilized in the lungs.plus it is such an expensive drug £99 a tablet and as the dr said it is dads choice. i think dad is going to go back on the drugs at half strength but again whatever his decision we will all stand by him. this all seems very very real now and has hit me like a ten ton truck.my dad is my strong hero who looks after and protects me and i cant believe that he is dying.i always knew it wasnt curable but to hear those dreaded words months has just well i cant explain what it has done to me.i have decided against telling my 2 teenage children for now.i have to come to terms with it myself first which i cant ever see happening.im so scared ,lost,numb any emotion i can feel at the moment but it must be a million times worse for my mum and dad.i cant imagine the pain they are going through.to see my dad well up and his voice cracks totally destroys me sensing his emotions and feelings and there is nothing i can say or do to make it better...just be there which is what i intend to do and make very moment count!!
APRIL 1st 2011
there is not much to report at the moment. dad has decided he will stay on the everolimus cancer meds at half strength. he has been on them nearly a week now and fingers crossed no side effects..long may that continue. he is starting to put a bit of weight back on as his appetite has picked up slightly. we have borrowed a wheelchair for the time being until his one is delievered so at least mum can get him out and about with her...seeing him look and feel better it seems so hard to take in he has been given months.dad has always been a fit and healthy person,very sporty and loves to win everything.not a gracious loser you could say and im sure his attitude to his cancer is the same.he wont lose graciously and will fight this battle every step of the way.im so immensely proud of my dad and what he is determined to achieve. we are having a big mothers day family day at mum and dads this sunday..about 12 of us in total so hopefully we can have a bbq so the little ones can run around outside. i will update when there is more news
APRIL 8th 2011
dad was back at the oncologist yesterday.dr said as he has only been back on the everolimus 12 days there would be no change as of yet.he is back again in 2 weeks time when he would have had scans and x rays and then we will see if the treatment is working.the dr did say if in 2 weeks there was no change then there was no point staying on the cancer meds.the only positive to this is he wont have the side effects. dad has been feeling quite low and down for the last few days which is so not like him.i think maybe he is coming to terms now that he is not going to get better.it must be so hard to be given this prognosis and to still carry on as best you can. with the weather being so nice mum has taken him out in the wheelchair and hopefully on monday we will take him for a walk along the beach.he is looking very frail and about 20 years older than he is which is scary.he has also been put on steroids to help boost his appetite as he is losing weight fast.i sometimes wonder if this is due to the cancer or all the meds he has been.will update again soon
THURS APRIL 14th 2011
monday was my birthday.the whole family went out for the day.me sean and my 2 kids mum an dad an my brother an his wife and 2 boys.we had a fab day.the weather was sunny and warm.we headed off to the beach and had a little go in the 2 p arcade then went for a lovely walk along the prom stopping at a harvester for a pub lunch.dad ate fairly well which was good.he seemed a little tired but as we had the wheelchair he didnt have to walk at all.we sat on a bench with the sun streaming down an dad had a little doze in his chair.finished off with ice creams and cake back at mum and dads it was a perfect day and birthday for me.im going over to see mum and dad today but fingers crossed he is doing quite well at the moment