Hi there, i posted this on the cancer messageboard and was advised to try here, so sorry if you've read this twice. My dad was diagnosed with terminal cancer of the bowel, liver and lungs in Feb this year. To begin with the doctors told him he had weeks to months at the most, 2 weeks after he was diagnosed he was told he had been selected for chemotherapy and was then told if it worked he would live for a max of 2 years, if it didnt he would live for a max of 6 months.

Everything was going ok for a few weeks he showed signs of his health improving although he had lost a lot of weight, but one night he was staying in overnight to receive his chemo and was about half way through the treatment his throat closed up and caused him to panic a bit as you can imagine, they managed to get his windpipe opened again but thought during this he had a minor stroke thankfully he got the all clear on that front. The proffessor that deals with him asked him to try the chemo again saying the chances of it happening again would be slim...... but guess what the exact same thing happened again, not only that a few days after he started to get soars all over his face and head, also blood blisters on his fingers and my dad decided enough was enough and told the proffessor that he wasnt going to continue his treatment.

He was doing great up until about a week and half ago when he woke up one morning in a lot of pain and his doctor put him on morphene (tablet form) since then he's hardly eaten and has sleeps most of the day.

Sorry if ive rambled on a bit, me, my mum and sister are finding it hard to cope just now and i was wondering if anyone has been in a similar position as we're all in just now, any help and advice will be more than welcome

Hi RS_Scotland

Firstly I am a fellow Scot and will add my tuppence worth in the hope that you and your mum and sister can come to terms with your Dads condition. I can NOT be offering medical advice but can only relate some of my experiences being as I was diagnosed in January with a similar condition to your Dad, having bowel cancer and liver mets. (Stage IV).

You do not say whether your Dad had the bowel (colon tumour) surgically removed but the discovery of my liver mets after a CT scan delayed my operation for almost two months until March. I'm 64 now but for someone who was absolutely petrified of hospitals, needles, never mind anaesthetics and scalpels etc., I somehow sailed through the operation and its aftermath. I was told a similar tale in January, i.e. 9 months to live if nothing else was done but with successful chemotherapy, then perhaps up to two years with a lotta luck. Well here I am in late July and have never felt better - still on the chemo which has given me all sorts of side effects but I've lived and learned how to work a balancing act on the pills and control all the evils like, sickness, diarrhea or constipation, loss of appetite, acne, cold in the fingers and throat - and although I lost initially 2.5 stone which I could ill afford, I've now gotten 1 of them back on slowly and am going for the rest.

I've just returned home from a two day break in Glasgow to attend a Wedding which was my first real test since January - I went off alcohol for a few months although I am now enjoing acquiring the taste again!! All this was a test for an anticipated holiday, my wife and I are planning in early September to Rome with my oncologists blessing.

Next week I get a CT scan again which will be the real test as to what if anything has happened in my favour liver-wise. Who knows but inwardly I feel as though I've reaped a lot of benefit and I'm going for the two years if not more if I can get it. I'll try anything to prolong the inevitable, but at least I have had the ability of putting everything in order well in advance - after all I could have been run down by the proverbial bus instead. If the chemo has had the desired effect there are newer more specialist treatments available for the liver which aren't available at my local hospital so I may have to think in terms of Edinburgh or Glasgow for these if I am offered them.

Your Dad is his own man, obviously, and the decisions he makes in his knowledge and understanding are the decisions which are right for him. You may not agree with them, possibly, but I would take your father's side and say that your thoughts are selfish, sorry. I understand how difficult this is for you, in that I am married to a nurse. She can cope with nursing patients who she can walk away from whereas when its at home 24/7 this is a different and very frustrating situation, particularly when the patient makes rash and sometimes stupid decisions, like I do.

I sincerely hope you and your family can find the hope and strength to cope, for your father's sake. May your God go with you and protect you all.

Please keep us up to date on this board, as there aren't too many Scots about. I shall certainly be thinking of you and your Dad!

hello dss12

thanks for taking time to share stuff with me, my dad hasn't and won't receive any surgery the cancer was discovered too late for any surgery unfortunatly:(. Iv'e seen people talking about stages on here, but to be honest i don't know what stage my dads cancer is at he's never said.

Just to clear up when my dad said he was going to give up on the chemo i supported his decision 110% as you say its his choice what to do not mine, sorry if i didnt make that clear on my 1st post. He has an appointment at the hospital on the 28th of august I think thats when he finds out what stage he is at and how long approx he will have left. I also have to go for a colonoscopy that day because the cancer in his bowel is hereditary and i'll need to have one every few years.

I'm glad your doing well at the moment, and i hope it continues i also hope the CT scan shows some positive results.

I'll keep you up to date if anything else happens. Thanks again

Richie

Hi, RS
I wish your dad luck with any treatment options and also strenth.You said he had mets in liver and lungs, this is stage 4-B.
mikosha

Hi RS

Thanks for the update and I shall be thinking of your Dad and yourself on the 28th. I hope the colonoscopy for you shows up nothing - but how wise you are to have this done regularly from now on. How many people on these boards have wished they were able to catch bowel cancer earlier with that test?

For what its worth, be wary of any doctor, professional giving times for your Dad's life expectancy. I would doubt if they will - they aren't God - and your father is an individual not a statistic. Be sure to write down every unanswered question you have and get a proper answer no matter how stupid the question may appear to you, it is an important question. Also don't be frightened to ask for a second opinion if you have any doubts. All professionals will welcome the suggestion - if they don't then you need a change.

Good on you for supporting your Dad 110% - hang in there it's difficult!

Dear RS

Sorry i have not responded to your post earlier but have not been active on the boards of late (plus my comp crashed :rolleyes: ). I live in East Anglia and its good to see another Brit on the boards although in sad circumstances.

I firstly wanted to say something about when the docs offer a progosis and life span. Both my late mum and very much alive husband were diag with stage 4 bowel cancer. Both had mets to liver. Mum wanted to know about life expectancy which i think is partly because she felt her age was against her and she wanted to make sure she did certain things before her illness left her too debilitated. My husband did not want to know. He was more interested in the here and now and did not look any further beyond the next treatment stage. We did come across a couple of doctors, probably less experienced, who seemed to blab out statistics regarding life expectancy. This often clouded the issues which we wanted to concentrate on at that time.

Secondly I wanted to compare chemo side affects. Mum had Xeloda tablets. I think she managed 2 cycles of them but cannot now quite remember exactly. She also had blood blisters on her hands, particularly on finger tips. She said they were not painful but was just very conscious of them. The oncologist took photos of her hands and between the oncos and mum, they decided to stop any further chemo. I thought there might have been a link to a blood factor 8 deficiency which runs in our family.

Lastly, we used the services of our local Macmillan nurse a lot. For my husband she helped with preventative advice regarding side effects and she also created a link with the local doctors in case he had any difficulties (which he did following surgeries). She also helped organise some financial help from the government....... helped with cost of travel and parking.
For mum she was a great help. She also organised financial help as mum was terminally ill. It was Disability Living Allowance under the special rules. To do this, you must tick the box on page 16 of the claim form that asks, 'If you are claiming under the Special Rules, tick this box'. Your claim should be dealt with quickly and you should receive the Disability Living Allowance care component at the highest rate. Amount of savings is not taken into account.
The Mac nurse was also a big help twards the end of mums life. She helped us organise a room at a local nursing/residential home which had a limited number of NHS beds. Most important thing she did was help understand mums level of pain and the dose she needed. I would recommend contacting them.

Hope the above helps. Good luck
ktee

thanks for the advice ktee, sorry i didnt get back sooner. Things with my dad got bad over the last few weeks and sadly we lost him this afternoon :(

I am so sorry to hear about your father. I know this must be such a sad time for you. He was lucky to have a concerned and loving son and I am sure he was grateful for your support and respect. My sympathies to you, your mother and your sister. Please make sure you look after yourself now.

Love and prayers,

I am sorry to hear of the loss of your father. I too lost my father last week after a difficult battle with colon cancer and mets to the liver. Although it is difficult, the way I am looking at things is the life he was living was not living for him and now he is cancer free, is not suffering and is in a better place. He will be sorely missed. My thoughts are with your family.

Lucill

RS:
I am VERY SORRY for your loss. It sounds as though your Dad and you had a close relationship and I can't help but think how PROUD and GRATEFUL he was of and for you and your help, support and caring over his life and illness. Rest easy in knowing that he is no longer uncomfortable, and I sincerely believe he is now in a better place where he no longer suffers any pain or worry about this horrific disease. You will see this is some small way here and there as he will ALWAYS be in your heart, and will serve as a reminder for YOU to seek regular screenings.

Again, my condolences. :angel:

Warm Regards,
CancerDad:angel:

RS

I am very sorry to hear of your loss. I hope that you and your family are starting to come to terms with what has happened. The berievement process can take a long time.

With kind regards
ktee

thanks a lot everyone it means a lot, ive never felt as sad as i do today but as some of you said he's not suffering anymore and he isnt in pain

Hi RS

In coping with your sad loss a well worn cliche spells out how time is a great healer, but equally time will never take away the many precious memories you will hold of your Dad. He is now free from pain and has beaten cancer.

Take care of yourself and when you have time, how did you get on with your own check up?

ello ds112, my colonoscopy went fine, strange enough i wasnt nervous at all on the day, i think when you see someone suffer the way my dad did you would do anything to avoid being in the same situation. the worst part of it was the night before drinking the laxitive...... horrible. I've got an appointment on the 1st Nov to see if the results show anything. the dr at the hospital told me there probs no chance there will be anything there and i'll need it again in 5 yrs