Cancer - what to expect

limerick_woody

Hello to everyone - i am going to discuss cancer, i hope this is the right forum for it and the mods can feel free to move it if required.

Last August - 2007, my father was diagnosed with stomach cancer, he is 62 and prior to this was barely sick a day in his life. I am his eldest son and i have a brother also living in Ireland. We have a larger family but they are based in the UK. I live in Limerick and my father and brother live in Kerry.

Obviously this came as a shock to us all, and particularly to my father. He was offered chemotherapy initially with the hope of removing the tumor and offering a potential cure - we took it of course. During all of the initial meeting with consultants and doctors i was ever-present and could ask lots of well-researched questions. My father to this day doesn't really understand anything more sophisticated than he has cancer - and all that entails. The first session of chemo. went well, some sickness but generally not too bad at all. After the chemo. finished he took off to the UK for Christmas with family and friends.

At this point i had to be abroad and while i was away, the hospital phoned him and told him the chemotherapy had had limited effect and that they would have to undergo combined chemo/radiotherapy in CUH. At least that is what filtered through to me. So he underwent both chemo and radiotherapy for 6 weeks and was released to the family.

On his release (now 3 months ago), he was a broken man, he could barely stand and was fatigued beyond anything i have ever seen. We were assured by the doctors that this was perfectly normal and that recovery would begin almost immediately now that he was no longer receiving toxins on a daily basis. Within a couple of weeks he had to go back to hospital because of the fatigue, lack of appetite and possible infection. Much later it transpired he had acquired MRSA while in CUH.

He was released to us this week, three stone lighter and still unable to eat, with the same massive levels of fatigue and dependent on a food drip that we have to administer to him every day.

To cut this short , does anybody have any experience of what we can expect in the future? The best the hospital would offer us, is a brief meeting with a dietitian where she didn't even have his original weight on hand to compare with his weight leaving hospital. I have lost any faith i may have had in members of the medical profession, in most cases I have been met with little more than disdain and a lofty superiority or simply a casual indifference and a shocking lack of empathy. I am a father of two trying to deal with this and seeing little of my family as a result. My brother is in a similar position.

Apologies for the rambling...

tallaght01

Is it possible to make an appointment to see your GP. Do you have a good relationship with him/her?

GPs manage people with cancer in the community all the time, and might be better placed to give you this kind of info.

they will also know of any local resources that you guys can access for support etc.

limerick_woody

We have spoken to the GP, but she is can offer nothing really - the hope is that we can get him to eat and build him up. The reason for my post was not for medical advice, i can research that and talk to the home-care team. It was more for anecdotal commentary on peoples experience with cancer care.

CathyMoran

I had a different cancer to your dad (oesophageal cancer) but I did experience chronic fatigue, though my inability to eat was because my food pipe was blocked. When I did start to be able to eat again it was only foods that I really liked and I had to force myself to eat it. You should go to your GP for additional support or the Irish Cancer Society who run a really good support line.

I found the home cancer care to be fairly minimal, when I was released from hospital after my surgery we got no help at all and my husband was left to look after me by himself. A friend of mine was better treated though and did get help at home (he had colon cancer), he really had to fight for it though and his wife was non-stop on the phone about getting help.

strawberryfield

My own dad has colon cancer and with the severity of his chemotherapy and radiotherapy treatments he was so sick he got to the stage where he couldn't keep any food or water down. Similarly he was put into hospital for hydration but his weight remained the same. He came out of hospital a couple of weeks later really like you have described your own father. He was just left emaciated after it really but now, 6 months on, he has regained much of the lost weight and his strength.
Now I know we're not meant to prescribe anything, I'm not a doctor, but I can recommend things that helped my dad and our family cope, so please don't ban me moderator!!! With the particular type of colon cancer my dad had he needed a permanent colostomy....its basically a bag attached externally to the stomach which links up to the large intestine allowing for excretion. With that crazy new thing in our lives, and all that came with it, we had ALOT of home care from nurses. They brought numerous types of calorie drinks/shakes which you can ask your gp about. I know he's on a food drip and can't eat but even trying to get him to take sips can make you, and him, feel like you're not taking this lying down. We also used to take down important information (weights, medication changes, new symptoms,etc.) and keep it in a little blue book, bringing it to every meeting with everyone concerned. It sounds a little ridiculous but grabbing onto something like that can make you feel like you're keeping it under control....it might annoy him, but its for his own good!

I know its difficult, the health service just isn't sufficient. Just keep the chin up, it takes time for the weight to come back. Best of luck

ChewChew

hey OP.

My dad also had cancer, and we found his palliative care nurse a fantastic help. Because my dad could'nt have chemotherapy he only received radiotherapy and like your dad he was very fatigued and extremely drained looking. his once big muscley body faded away to nothing. but he was not under the constant care of the consultant in the hospital because he couldnt receive chemo, so palliative care nurse was fantastic as the only pain relieve he got was through morphine patches that were changes every 3 days.

So I would recommend contacting your dad's local hospice group and see what they can do for you???

Hope it all works out, just remember to be strong for your dad, he will need you and your brother!!!!

MJOR

I understand your lack of faith.

My Dad died from oesophageal Cancer in 2004. He was treated initailly in the south infirmary and really the care there wasn't great.Initially they wanted to send him to the mater in Dublin but he refused to be away from his family during this time. I think in hindsight maybe this was a mistake. His consultants were excellent if not a little straight talking but the standard of care for this cancer leaves a lot to be desired.

All the doctors and nurses were lovely but didn't have the time IMO
Just after his diagnosis he got a stroke which recovered fully from(he got this from stress the hosp reckoned and the fact that he'd been taking disprin for his "sore throat")
We stayed near him for 12 hours in shifts. At one point we had to ask for an extra pillow 3 times over a two hour period) Not the fault of the nurses they are under resourced.

At 67 he was healthy in every other way. He sadly opted not to have surgery. The consultants were very understanding and respected his decision. As I lived at home I looked after him and even had to bring his food into the hosipital as they didn't really cater for his diet(cancer was near his voicebox and he found it hard to swallow ) so all the food had to be a moouse consistency otherwise it choked him.

He had radiotherapy in the CUH and Chemo in the south. He was given the all clear but sadly the cancer returned ( a fact that due to no surgery and the 92% (i think) mortality rate) It's extremely agressive)

It came back witha vengance and he opted for a feeding tube (he lost a lot of weight from 12 St to around 81/2)

Basically becuse of his weight loss the general ananstethic they gave him didn't work and he couldn't have the job done(he was in the Mercy Hosp at this stage)

The care here was second to none. The pallitive care is excellent and they made his last few weeks comfortable. He passed away there aged 70 after a noble battle

I suppose really all you can do is be there for him and make sure than when he is in hospital that someone is always with him. Just to make sure he is comfortable. We were lucky he had private health insurance so the costs were ok and covered as he spent 6 weeks in and the bill was huge.

The health system in this country is really not adaquate for what we need as a country. The fact that so many people have to have private health insurance is awful.

I felt so let down that they could not even feed my Dad properly when he was so ill. He was lucky to have had someone to help him. I feel for thise who have no family to look out for them.



My sister had cancer in her breast and had her treatment in the Bons in cork and had a different experience and also has some treatment in the CUH as an outpatient and was happy enough with it so it depends. I know you are prob feeling disheartened but It's not all bad. Its the lack of resources that is the problem

I wish you and your family all the best and I echo your concern at the lack of care.

convert

Sorry for dragging up this thread again, but after a quick search of the forum I felt it was the best place to put this post.

A family has recently been diagnosed with oesophageal cancer and underwent chemotherapy treatment. While it initially seemed to help, they have since had problems eating (they're literally forcing themselves to eat) and have been admitted to hospital in the hope that the doctors will be able to operate to remove the tumor. The doctors aren't sure whether or not they'll be able to remove the blockage due to its size and location.

I was wondering if anyone else has had experience of this type of cancer and what we as a family can expect after the operation (if it can be carried out) and what to expect if surgery isn't an option.

CathyMoran

convert wrote: »

Sorry for dragging up this thread again, but after a quick search of the forum I felt it was the best place to put this post.

A family has recently been diagnosed with oesophageal cancer and underwent chemotherapy treatment. While it initially seemed to help, they have since had problems eating (they're literally forcing themselves to eat) and have been admitted to hospital in the hope that the doctors will be able to operate to remove the tumor. The doctors aren't sure whether or not they'll be able to remove the blockage due to its size and location.

I was wondering if anyone else has had experience of this type of cancer and what we as a family can expect after the operation (if it can be carried out) and what to expect if surgery isn't an option.

Can only go by my experience of oesophageal, am a 2 year 11 month surviver - will send you a pm.

witchgirl26

Hi convert. My dad had stomach cancer which I know is different but can give some general advice.

Main thing is don't research it online by yourself unless you're on proper medical sites. It can just lead to information overload at the least & scaring yourself silly at most. Best thing is to ask the doctors & family members any questions you have. Even if they sound silly - trust me some of the ones that sounded silliest were the most important to me.

Thinking of you & hoping everything works out for the best.

lollipopday2010

Hi, There is an Oesophageal Cancer awareness campaign kicking off next week to let people know how common it is and how many people die from it each year.
If your around, you should drop over to St. Stephens Green and sign the wall. I think Padraigh Harrington is going to be there also, he is their ambassador this year.

tuom

I am due to go for radiotherapy soon and have all but put it out of my mind but the time is moving on, I have all the literature info etc, but what can I really expect, the localised areas will be upper body arms in particular (joints)

Thanks

lonestargirl

tuom wrote: »

I am due to go for radiotherapy soon and have all but put it out of my mind but the time is moving on, I have all the literature info etc, but what can I really expect, the localised areas will be upper body arms in particular (joints)

The Irish Cancer Society have produced a series of videos on what to expect when undergoing radiation therapy - you can watch them here. It takes you through the process explaining what will happen at the various stages an answers some common questions. If you are being treated in St Luke's they run radiotherapy welcome evenings where you and your family can visit the hospital, take a tour and ask any questions you may have. Details are here.

Side-effects of radiation therapy are dependent on the site being treated and the dose of radiation being delivered and the risks are specific to each individual patient and their plan. Your hospital should have an oncology clinical nurse specialist for each cancer site. They will be able to give you the details specific to your treatment and will be there to chat with the whole way through your treatment.

Good Luck

Mad_Max

How have you guys been finding the cancer care overall in the health service?

I'm kind of torn on what I think. I've gotten fairly efficient care, quick ops and check ups so on one hand I think it's pretty decent, waiting time wise

However, a 2-3 minute chat with a dietitian and a speech therapist in my case then a 10 minute (max) checkup with my prof once a week and it makes me think it's all a rush job.

cardol

I'm posting here too as a search on the forum brought up nothing else relating to cancer care.
I had breast cancer 7 years ago while living in England and received excellent care in The Churchill and JR in Oxford.
I moved back here in Nov 2008 and had a really hard time getting a doctor to take me on as a new patient. They all read my notes, told me they were very well written and then said they weren't taking on any new patients. I have a Medical Card as I am not working since returning here.
I am suposed to have a mammogram every year but my last one was in Feb 2008 in Oxford. I had an appointment in Ardkeen last Dec 30th 2009, but a week before the appointment I knew I wouldn't be abe to keep it and rang to let them know. Someone asnwered the phone and said "they've all buggered off early for the Xmas break, but I'll leave a note on the desk". I rang back on the morning I was due to be seen and after several attempts to get through, someone picked up the phone literally 5 mins before I was due to be seen. I was really frustrated by then as the whole thing seemed to be very unprofessional. When I explained that I wasn't going to be there, I was told "Not a bother, we'll make a new appointment". Which was odd as I thought someone else could have benefited from my not being there, but that didn't cross their minds.
It is now May. I've tried ringing them loads of times over the last 5 months and mainly the phone rings out. Once I was able to leave a message and said I was trying for months to get through to someone. They called back the next day and seemed more concerned that their voicemail wasn't working than any waiting I might be doing. It seems they misunderstood when I said I'd been trying for months to get seen. They said they had to read my file before making an appointment to see me, but I wasn't being forgotten about. So shouldn't they have read my file before they were supposed to see me in December?
I had to go to my doctor last week with chest pains and told him about all this. He rang them twice and got through on the second time and they said they'd try to fit me in in the next few weeks. He then examined me and said my chest pains could be a viral infection, but because of my history, the cartilage between my ribs could be cancerous and "to ask them when I saw them in a few weeks, they were used to that kind of question".
I am now terrified, still don't know what is going on, and in pain all the time still. My doctor gave me strong painkillers, but only because I insisted, but they are now all gone and I am on over-the-counter ones which don't really help.
And now I found this link tonight which is written just over a year ago and it doesn't help calm me at all: http://www.munster-express.ie/local-news/wholesale-%E2%80%98failures-in-wrh-breast-cancer-unit/

Sorry for the rant, but does anyone have an opinion or know if this is normal cancer care? Previous to this, all my cancer care was in England.

LegacyUser

I don't have an answer to your question OP, but to be honest, if you're seriously worried I'd consider going back to the UK for treatment if that's possible.
Our health service is mediocre at best and overburdened with administrators which probably is part of the problem you have in getting through to them. I know people who have had cancer and received good care, but that tends to be with private health insurance.
Sorry I can't be more help, and best of luck.

CathyMoran

My experience of how cancer survivers are treated is not great either - I wish you all the best though.

jmbkay

My dad's just been diagnosed with stomach cancer this week. Advanced. No Cure. Probable chemotherapy to "keep it at bay" for as long as possible. They can't/won't say how long. I would just like to hear some experiences of it.

witchgirl26

jmbkay - first off I'm so sorry to hear about your dad. As you can see from my previous post in this thread, I've had the same experience to an extent.

The doctors generally will give you a timeline if pushed but remember that it's different in every case. My dad was given one of 12-18 months.

The first thing is that you're dad should get set up with the nearest hospice for palletive care. It sounds scary but believe me the hospice staff are the nicest people I've ever dealt with - I both worked in a hospice & then had the experience with my dad. Their main aim is keep your dad as pain free as possible & give the best quality of life. My dad was covered by St. Francis Hospice in Raheny so I know most about how they work. One of the best things is they provided a free counselling service to the families which can really help.

I'm not going to tell you that'll it'll be easy - that would be a lie. It is one of the most difficult things you as a family will ever face. You'll have to all pull together for your dad but at the same time remember that you also have a life & do try to keep living it. It's hard at times but you need to do it for your own sanity. Also don't bottle things up - if you can't/don't want to talk to a counsellor than talk to a friend.

I honestly don't know what to say to you or what exact information that you want but if you want to ask me any questions I will do my best to answer them.

My thoughts are with you and your family.

random.stranger

jmbkay, I can only offer you my sincerest sympathy on your news. I have had similar news recently.

I found this book on amazon that may be of interest to you. It doesn't claim to have any miracle cures or magic answers for you, but does offer an explanation of what cancer is, how it grows & what people can do to compliment conventional treatment and improve their prospects.

From the reviews, I expected this to be a well written book, but I was very surprised to find how much of the advice in this book is backed up by scientific studies.

You can read the start of it from the link above by clicking on the button "Read First Chapter Free". Something that may be especially relevent to your father is section 2. Escaping Statistics.

You can get the latest edition of this book from amazon's US, French and German sites. The latest version is not available on the UK site at time of posting.

I hope this helps.