CHEMOTHERAPY

[Ellie]

Hi Nikki

Thank you SO much for your very positive message! So many things you said in it cheered me up. That must have given you a real boost when they changed Ted's prognosis by such a big margin! I did ask the specialist to give me some idea of time - my husband had left the room and I asked her to tell me, but she said she couldn't. All she would say is that with chemo, he may have a few months extra. Extra to what? The effects of the chemo may outweigh any time benefit of having it, so we have to see how it affects my hubby and if he feels it is not working, then he will stop it. He has another appointment on the 29th of this month, so I will see what else they can tell me then.

We had a lovely Easter break, thanks. We met up with our best friends, had lots of laughs, a few drinks, some lovely weather and yes, a few tears too, but I am determined to keep positive and fight it all the way. You & Ted are going to be my inspiration now and I hope we can get the same sort of hope from the consultants that you have had.

Thanks again for your message. Hope you enjoyed your Easter and hope we can keep in touch and support each other in the future.

Best wishes

Ellie

xx

[Nardobd]

Hi Ellie

Glad I helped in some small way.

Yes, it was a good boost when they amended the prognosis. I did have to press for an idea of time when we saw the consultant. Sometimes I think they forget that they are literally affecting peoples' lives. Admittedly, I'm the kind of person who would say something to the effect of "Well we need to know and I'm not leaving until we do". I think when the issues are so serious you have to become less afraid of doing things like that - I can live with upsetting a consultant if it means we have some peace of mind!

There is always going to be a quantity/quality issue. I hope your husband has as few side effects as Ted. The decision isn't an easy one for anybody and I hope that neither you nor your husband have to make it. (I hope that last bit makes sense!)

Glad you had a good Easter and we did too. I'd love to keep in touch - would you prefer to stick to this site or email (I don't have a problem with giving out my email address on the board - I get so much spam anyway, it's not going to make a lot of difference - so don't worry that you have to.

Kind regards

Nicki

[Ellie]

Hi Nicki (sorry, I was spelling your name wrong in previous posts)

I was going to ask you if you'd like to keep in touch by email, too! Yes, that would great. I think we have to ask the administrator for email addresses. I think if you post yours on here, it will be deleted. I will see what I can find out after I've written this.

Look forward to hearing from you.

Best wishes

Ellie

[Ellie]

Kay - Just wondering how your husband is this week? You said he had been having a lot of side effects with his treatment. Is he any better now? Has he been able to eat more?

Just wanted you to know that I am thinking about you and hoping things have settled down. I expect you are not looking forward to his next cycle of treatment on the 22nd. Hope it won't be too upsetting for you both.

Love

Ellie

xx

[gillvb1]

Hi, just to add to the previous messages, my Dad has been on Gemcitabine since post Whipples (December 2008) and will remain on it until June 2009. He has had no adverse side effects at all, no loss of hair, no nausea or any other disorder. Aside from his chemotherapy, he has developed a lump on his side. Turns out it is a heria protruding from his Whipples scar so he is scheduled to see the surgeon in early May for more surgery. Kindest Regards, Gill

[Ellie]

Hi everyone

Just an update on my hubbie. He is feeling really well at the moment. Since he stopped the chemo, he's had no headaches (the docs said the chemo shouldn't have caused them, but they obviously did!) and he has more energy too.

He has to go for a scan this week, to see how the spot on his liver is doing, whether it's got bigger, or hopefully stayed the same. Depending on the result of that, they may start the next chemo earlier. We've got a break booked early in June, so if all is well we can go ahead and take it. If not....well, we start the next fight!

As always, keep positive, stay strong and wishing everyone all the very best.

Love

Ellie

x

[gillvb1]

Well, after my Dad was doing so well it has all gone so terribly wrong. My Dad had his final session of Chemotherapy earlier in May 2009 but not known to any of us he had developed a temperature. Be warned - if anyone receiving Chemotherapy feels unwell they should get it checked out straight away - his low white cell count meant that he could not fight of infection. My Dad didn't seek help and put up with his symptons. On Friday 15 May he was admitted to hospital. The following day my family was asked to come to the hospital where we were taken to a sitting room and told that the next two hours were critical. My Dad had septicemia which came on so quickly. He was put into an induced coma and placed in intensive care for 9 days. The last 4 days have been really tough as they reduce his medication to bring him round. My Dad is very confused, has been having hallicinations and looks jaundice and frail. Just two weeks ago he was the strong, active person we know, now he is in a body that will not work. He was on a ventilator and on dialysis and had so many tubes leading to and from his body but now he remains on dialysis which may or may not be permanent. It's been very tough on us all and we have been told that my Dad will never be the same - what that may mean I don't know but we are hoping for quality of life for him. Gill xx

[chinup]

Dear Gill

I'm so sorry and shocked to read what's happened. What a terribly cruel blow after getting so far. I remember telling my mum and dad how well your Dad was doing on Chemo and after his surgery and they were genuinely pleased that someone out there with the same disease was winning the battle. Gill, it is not over yet. Please do not lose hope - this is a very terrible time and probably the toughest test your Dad has faced to date but he is clearly a very strong chap and he could yet pull through. I don't know if the doctors can judge how much damage is done, I suspect it is a waiting game and I wish you all the strength in the world to bear it. Never lose sight of how incredibly well he has done so far - and don't blame yourselves for missing the signs - again, a indication of the strength of character your dad has that he didn't notice anything seriously amiss.

Don't know what else to say other than we are all thinking of you and your family at this awful time. XX

[Nardobd]

Dear Gill

We haven't 'spoken' before but I just wanted to say how sorry I was to hear about your Dad. From your previous messages he seems like a very strong chap so I'm keeping my fingers crossed that he overcomes this battle too.

My thoughts go out to you and your family at this very traumatic time and don't forget that if you need to vent, we're here for you.

Love

Nicki x

[gillvb1]

Hi Ellie and Nicki, thank you both for your words of encouragement - what a blow to have this happen. Of course there is hope of a positive outcome, I've been saying what Ellie once said to me, 'one day at a time' and those words are so true now. My Dad is still in the xx Hospital but is now on a low dependency ward. He still has jaundice and has 4 hrs of dialysis each day. He is unable to get up out of his bed/chair but he is receiving physiotherapy and I am sure he will come home soon. Each day we see positive improvements. He is far more lucid now and is off his drips and tubes, in fact he is no longer dependent on a feeding tube so he just has to get strong now. My Dad is very close to my 6 year old daughter and he seemed to have left her in the past so I talked to her and she agreed to visit him yesterday. I was hoping it would really give him a boost and I think it did to a degree but after being so strong and withstanding 6 months of chemotherapy he is feeling low and he worries that he won't be able to walk again. I've told him that there's nothing wrong with his legs and that we'll be taking him home soon but he's not convinced. This is the beginning of a new chapter for us and who knows what we'll be up against but I have never been so close to seeing death. The hospital staff had put a sign above my Dad's bed stating 'Do not resusitate' but we soon changed that! After we described the active life my Dad had and the huge achievements he's attained, the consultant admitted that he looks at patients and doesn't see the person within - well he does now!!! I think that very ill patients should have photographs of themselves on display so that the hospital staff can see that these people were and still are worth something and that there is so much more life to come. Having said that, the hospital staff have been outstanding and he is getting the best care so we have comfort from that. I think that once he is up on his feet again he will feel that he can conquer this setback but he is still very ill. Gill xx

[Nardobd]

Hi Gill and I'm really pleased to hear that there is some improvement. You're quite right in saying that we need to remind some clinicians about the person and try to make them see past the disease.

Hopefully your Dad will be back on his feet soon and that will help to give him the strength to make as full a recovery as possible. I've now had a chance to read some of your previous messages more carefully and I really admire your Dad's fighting spirit and determination so I'm sure that this won't keep him down for long!

Do let us know how your Dad is from time to time and, of course, if you need a friendly ear we're always here.

Love

Nicki xx

[gillvb1]

Hi Nicki Ellie and Chinup, thank you for your responses to my posts. My Dad has now had a liver scan and he was told that his liver is okay so thank goodness for that, also there's no indication so far that the cancer's returned so I am thankful for that. I took a magazine to hospital for my Dad to try to get him engaged in the outside world. It worked, he kept picking it up and thumbing through the pages which is encouraging because he had no interest in anything since his relapse. We're seeing that my dad is now going in the right direction and I will certainly stay in touch with this site and keep you all posted with his progress. I sincerely hope you are all having a far less eventful time of it. Best Wishes, Gill xxx

[gillvb1]

Hi, my Dad has been told that the cancer is most likely back since he had a scan which revealed that a nodule has formed in the bile duct - he is due to have a stent fitted on Monday. My Dad has been in hospital since Friday 15 May and he still isn't on his feet yet. Since being given the bad news he has said he feels that there's little point in having physiotherapy or eating but hopefully he will feel more positive after his procedure on Monday. We just need to get him home so that he can recover in familiar surroundings with the family around him to give him the psycological lift he needs. Gill xx

[Nardobd]

Hi Gill and so sorry to hear the news.

If your Dad's bile duct is blocked that in and of itself can make him feel very unwell. Ted, my hubby, had a stent put in under an ERCP procedure (the endoscopy one with the tube inserted via the mouth) and it was fine - just a little uncomfortable.

Hopefully once your Dad gets home and has his loving relatives around him that will boost his morale. Let's face it, hospitals are no fun when you're ill!

My thoughts go out to you as always and I'll send an extra prayer that your Dad's procedure goes well on Monday. Do let us know how he gets on.

Love

Nicki xx

[Ellie]

Hi Gill

Sounds like you're going through a rough time again with your Dad. So sorry to hear that they found something in his bile duct. I hope that the stent will sort things out for him next week.

I have been through what you are going through now. My hubby was devastated when he learnt the cancer had spread to his liver, but he's bounced back again now and is staying positive and will keep fighting. Hope your Dad will do the same.

Tell him - he's got this far, so he can't give up now!

Thinking of you and sending my very best wishes.

Love

Ellie

x

[Guest]

Hi Gill,

Was just wondering how things are going with your dad? Has he had the stent fitted, is he able to go home yet?

Not sure who your dads oncologist is but my Mom is being seen by Dr Peak who is based at the QE but she is having her treatment at Sandwell hospital. Small world isn't it?

Just to let you know I'm thinking about you and hoping your dad is doing better!

Lisa x

[gillvb1]

Nicki, Ellie & Lisa, Thank you for your support at this difficult time. My Dad has been in hospital for a month now but is showing signs of improvement albeit only over the past few days. A stent was partially fitted but they were unable to get it property aligned so we have been on edge today whilst a second procedure was performed. I have received news that the stent was successfully put in place in the bile duct and my Dad's drain has been removed - hurray!! Also, he no longer needs dialysis (touch wood) which is also an excellent result. A biopsy wasn't taken but the medical team are fairly certain that cancer has returned and will carry out a CT Scan in 3 months time.

Lisa, My Dad was treated at xx for a time but since his cancer was diagnosed he’s been treated at the xx. We await the day we can take him home - recovery will be steady but more comfortable for my Dad. How is you Mum getting on with her chemotherapy? Does she have to travel far to the xx or do you live locally? Gillx

[Nardobd]

Gill

Glad to hear that the second procedure went well and that your Dad's now showing signs of improvement. Please let us know how he's getting on from time to time.

Nicki xx

[Guest]

Hi Gill,

I’m glad to hear your dad is showing signs of improvement, having to stay in hospital for a month must be really hard on him (and all of you).

Hopefully he has turned a corner now and they’ll let him home soon – where I’m sure he will recover much better!

Keep us upto date and if there’s one thing I’ve learnt so far its to take one step (and day) at a time, I’m sure you know that. I can imagine it’s hard not to think about what the scan may or may not show, but for now if your dad can get home he’ll start to feel better!

My mom’s chemo is going well so far, this is only her second week, so early days, but she hasn’t been sick with it at all yet – just very tired! She is having the chemo done at Sandwell at the moment and she lives in Oldbury (close to Bearwood) so its luckily very close.

Take Care

Lisa x

[gillvb1]

Hi Nicki, Lisa and Ellie, what a rollercoaster. Thank you for your support - always so welcome and reassuring. Unfortunately we were given not so good news yesterday - my Dad's stent couldn't be fitted properly, contrary to what we had first been told. Because of this setback it is likely that the stent will become prone to blockage and that could be devastating for my Dad if we don't catch the symptons in time (and then I don't know how effective the treatment will be). You'll be aware that we've just been through an episode where my Dad has suffered sepsis and remains in hospital after 5 weeks of treatment so we'll have to be on our guard.

Myself, sister, brother and mother will attend a meeting at the xx Hospital on Monday to discuss the feasibility of my Dad coming home. It now seems that we have a choice which is very upsetting, I didn't ask what the alternative arrangement would be but my sister was insistent that I agree that he comes home. The problem we have is that myself and my siblings all have mortgages and bills to pay so taking time out of work in the long term would be difficult. My mum is pretty frail after a failed hip replacement operation so the future is uncertain. Social Services will carry out an assessment of my Dad's anticipated needs and hopefully we can come to agree a package of medical help for him. We are adamant we want him home but we need to know that we can cope. My Dad is still very ill and we've been told that he may or may not be around for Christmas - not knowing doesn't help. I'll be sure to keep you posted. Your messages are a huge comfort and remind me that I have people out there who understand the uncertainty we are all going through. One day at a time .... Gill xxxx

[Nardobd]

Oh Gill, what a time you are having!

It is dreadful that you were given the wrong information and I'm sorry to hear that your Dad's stent may give him problems in the future. I can give you a bit of reassurance, however, insofar as my husband's stent was described as possibly being "sludged up" (partially blocked) at our last appointment. He's been getting some abdominal pain (not particularly bad, more discomfort than pain as such) and his last scan showed that his gall bladder was a little inflamed, possibly as a result of the stent. The stent is being left for the time being because they don't want to do another procedure unless they have to but we were told that if it does become necessary the procedure will be very similar to the one where the stent was inserted and they would just swap it out for another one made from a different material. If they have to do that, they don't anticipate any long-term effects.

I'm sure you were all devestated by the information that there has to be a feasibility assessment before your Dad returns home and we all understand that bills and other financial necessities don't disappear and can make caring for our loved ones at home difficult. Don't forget, though, that you don't have to rely on Social Services and the NHS alone. The obvious organisations that spring to mind are Macmillan and Marie Curie but I took the liberty of doing some research as to what else is available in the Birmingham area. I hope that Sue doesn't mind me giving you a couple of links to reputable websites:

The Bridges Support Service offers

Help with domestic tasks in the home

Someone who can sit with the patient so the carer can have a break

Someone who really understands what you are going through

Help to find reliable information

Help to access benefits and manage your finances

Help to find spiritual support

Volunteers to drive you to hospital appointments

Bridges support people in Sandwell and Heart of Birmingham Primary Care Trusts, so if your Dad is registered with a GP practice in this area, you will be able to access the services. For more info their website address is: http://www.webwell.org.uk/MurrayHall/Bridges-Support-Service.htm

There's an interesting article in the Nursing Times about cancer care at home : http://www.nursingtimes.net/nursing-practice-clinical-research/providing-cancer-care-at-home/1677790.article which indicates that an organisation called Healthcare at Home might be of benefit and that this is sometimes paid for by the NHS. Of course, you'd have to make sure whether the PCT in your area would foot the bill, but it's something which you could explore further and would give you added ammunition for your argument that your Dad should be cared for at home where he's most comfortable.

I apologise for rambling on a bit but I thought that you might not be in the mood to research possible support systems right now.

Love

Nicki xxx

[gillvb1]

Nicki, Thank you so much for your email and for the web links which I shall spend time studying - I really appreciate the time you have spent providing me with such support and help, I just don't know what's out there. Things have moved on somewhat - my sister visited the hospital today and has spoken to two ladies from a hospice who have pledged a lot of practical support in caring for my Dad at home but I don't know which organisation they're from (I'm a bit shell shocked). Can you tell me what a hospice is? My understanding is that it is a place where people are cared for before they pass on - is this right? It's just that my partner thinks it's a place where people convalesce. My sister tells me that if we couldn't have Dad at home he would be transferred to a hospice - does this mean the end is much nearer than I thought? Again, thank you - I shall do some surfing now and discover another world I didn't know anything about. Love, Gill x

[Nardobd]

Hi Gill

It's my pleasure and you're quite welcome. Sometimes it helps for people to just point in the right direction, particularly when you're trying to deal with all the emotions which you must all be feeling.

Historically, a hospice used to be only for people in the last stages of terminal illness but things have moved on since then. Hospices now provide other services too, including long term care for the terminally ill, respite care to enable the carer of a terminally ill patient to take a break and recouperate themselves and day-care for one or more days a week. If the patient is well enough they might be able to participate in activities run at the hospice, such as flower arranging, arts and crafts etc.

Doing a brief online search, I found two hospices in Birmingham and one of those is for children only. The other is St Mary's Hospice and their website is http://www.bsmh.org.uk/index.php. You might like to have a look at that site too.

Love Nicki xx

[gillvb1]

Hi Nicki, thank you very much for the link to St Mary's Hospice - it's quite humbling to see what services are available and some by volunteers too. It is reassuring that these organisations exist. I see that they fully support care in the home and my sister tells me that the hospice nurses have said that 'speed' is their middle name which is all good! The meeting on Monday at the QE will probably fill gaps that I am so unsure of - it's all pretty confusing really. I wonder if they know my Dad is on the way out or whether we can expect him to have a period of quality time with us. It's all been so sudden - we had high hopes that he would be one of those who got to the 5 year stage and beyond but then again I suppose everybody has that hope at first. Still, it's not over yet. Love, Gill xxx

[Ellie]

Hi Gill

You must be going through such a worrying, frustrating and upsetting time right now. I do hope that you are making more sense of it all, thanks to Nicki's excellent help. I had the pleasure of meeting her in person during my holiday last week and she also helped me and gave me good advice. It was really nice to meet the person behind the messages on here.

I hope your Dad will pull through this current stage of his illness. I know exactly how you feel about thinking he'd been one of the lucky ones. I thought my husband had, too, until he was told he had a met on his liver. We had the bad news yesterday that this has now grown, slightly, but still grown, not stayed the same, as I'd hoped for.

The consultant asked if he could tell him what his chances were and, for the first time, my husband said yes, he'd rather know what was happening. He was then shocked to learn that he may have between 6 months and a year left to live. That's the first time anyone has put a figure on it. He was told that only 1 in 20 people survive pancreatic cancer going to the liver and that chemo would only prolong things. He did say, however, that he was pretty fit and well at the moment and that might help him get through the chemo more easily.

My husband was obviously upset at hearing all this and, even though I'd known all this deep down, it was just awful both of us having to face this news together. Somehow, when my husband didn't know things were this bad, I could cope more. I could shut it out and just getn with things, and be so optimistic. Now, I can't do that because he knows, too. We had a very down 24 hours, but have bounced back yet again and are still going to be strong and positive and hope that chemo does, at least, slow this new tumour down. Again, I can't believe that we've come this far and are facing yet more pain and heartache. He had his whipple on 25 June 2007, so it's nearly a year ago now.

I am thinking of you both, Gill and Nicki. Hope you will both keep your spirits up and keep positive, as we've done upto now.

Love

Ellie

xx