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Nardobd
Posts: 479
Joined: Sat Feb 14, 2009 6:25 pm

Re: CHEMOTHERAPY

Postby Nardobd » Thu Jun 18, 2009 12:29 pm

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/Br ... ervice.htm

There's an interesting article in the Nursing Times about cancer care at home : http://www.nursingtimes.net/nursing-pra ... 90.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
Posts: 76
Joined: Sun Sep 28, 2008 10:31 pm

Re: CHEMOTHERAPY

Postby gillvb1 » Thu Jun 18, 2009 8:50 pm

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
Posts: 479
Joined: Sat Feb 14, 2009 6:25 pm

Re: CHEMOTHERAPY

Postby Nardobd » Thu Jun 18, 2009 9:51 pm

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
Posts: 76
Joined: Sun Sep 28, 2008 10:31 pm

Re: CHEMOTHERAPY

Postby gillvb1 » Thu Jun 18, 2009 10:36 pm

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
Posts: 302
Joined: Thu Sep 04, 2008 11:03 pm

Re: CHEMOTHERAPY

Postby Ellie » Fri Jun 19, 2009 12:11 am

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

Nardobd
Posts: 479
Joined: Sat Feb 14, 2009 6:25 pm

Re: CHEMOTHERAPY

Postby Nardobd » Fri Jun 19, 2009 2:18 pm

Hi Gill and Ellie,

Gill, I hope that the meeting on Monday will help with the confusion you feel. Sometimes it's really difficult to take in a lot of information in such traumatic circumstances. The main thing is "ask, ask, ask"! When my hubby was diagnosed, I made a doctor repeat an explaination three times to ensure that I fully understood what he meant. Remember there's no such thing as a stupid question! Of course the timespan will be important to you and it will also have a bearing on what decisions you make as a family. Don't be afraid to take the time you need to decide either - the most important thing is that you make the right decision in your family's circumstances. We're thinking of you all.

Ellie, I was so sorry to read that your husband's tumour has grown. 1 in 20 still equates to 5% and I know that you believe, as I do, that someone has to beat the odds! You know that I'm thinking of you both.

Love Nicki xx

Lisa

Re: CHEMOTHERAPY

Postby Lisa » Tue Jun 23, 2009 2:34 pm

Hi Gill,

Was just wondering how the meeting went yesterday and if you got more clarity on what will happen next for your dad?
Please let us know, we are thinking about you!

Just a follow up from Nicki's excellent advise - not sure if you've had chance to get in touch with Bridges yet? But my mom was put in touch with them through her local Macmillan nurse and they do offer some great services. For example they now arrange for my mom (and my sister who goes with her every time) to be picked up and taken to the hospital for her chemo sessions! This means that my dad doesn't need to lose time from work to take her to and from her the hospital, we all know how difficult it is juggling work, mortgages and bills with caring for someone! They are also arranging for someone to come round and see my mom to talk about other ways they could help her. Hope they are also able to help your dad!

Kind Regards
Lisa xx

gillvb1
Posts: 76
Joined: Sun Sep 28, 2008 10:31 pm

Re: CHEMOTHERAPY

Postby gillvb1 » Tue Jun 23, 2009 9:05 pm

Hi Lisa, Ellie and Nicki,
Monday's meeting went ok but things haven't gone according to plan. On Monday we (the family) felt that it was feasible for Dad to come home and we intended making his time with us comfortable and enjoyable for him. However, today he has taken a turn for the worse and there is nothing more the hospital can do for him. He is now very ill and is suffering badly with jaundice. He is sleeping a lot and is incoherent. I don't think he can see us but he's comfortable, rested and content. We feel that Monday's meeting was aimed at closure for the family and not in the interest of my Dad. We've come to the regrettable decision not to bring him home which we are so upset about but the thought of him going through another trauma is too much to bear. We don't think he's aware of his surroundings but we do know that he is content and at peace. I asked how long we had left with him and was told that he wouldn't be with us by this time next week. We feel that we only have a day or two left with him. I wish he could have left us when he was in a coma instead of enduring all that he has in the last 6 weeks. We've been told that the chemotherapy did not do anything to help him and that because pancreatic cancer is so aggresive it has quickly spread to his bile duct. One saving grace is that over the 6 months of chemotherapy, my Dad had a good time and did not have any side effects so that's something but we really felt he had so much more time with us that this has come as a terrible shock and we feel we have failed him in not bringing him home. It's off my chest now and I'm in floods! Love, Gill xxx

Ellie
Posts: 302
Joined: Thu Sep 04, 2008 11:03 pm

Re: CHEMOTHERAPY

Postby Ellie » Tue Jun 23, 2009 10:07 pm

Dear Gill

I am so terribly upset to hear about your dad. It seems truly awful that he was doing so well for so long, and then it comes to this.

You must be feeling so many emotions and nothing I say will help, but I hope you find comfort in knowing that your dad did have those 6 months when he was able to enjoy being with his family, without suffering the side effects of chemo, like so many others do. At least you will have made him happy during that time. Another blessing is that he is not suffering now.

All I can say is that I hope the hospital keep him comfortable and pain free. It is so very, very sad that it had to end this way, but you have done everything you possibly can for him. I hope you find the strength to see this through and please know that I will be thinking of you.

Love
Ellie
xx

Nardobd
Posts: 479
Joined: Sat Feb 14, 2009 6:25 pm

Re: CHEMOTHERAPY

Postby Nardobd » Wed Jun 24, 2009 12:56 pm

Oh Gill, I'm so very sorry to hear about your Dad's sudden deteroriation. I empathise with the difficulty of coming to a decision not to bring him home. The solace must be that you are all being completely unselfish and doing what is best for your Dad under the circumstances. You haven't 'failed' him at all. Your reluctance to put him through more trauma is a testament to your love and concern for him!

I know you think he can't see you but I wouldn't be so sure - I am convinced that he will know that you are there, loving him. Many doctors and nurses have said to me in the past that desperately ill people can often hear their loved ones speaking to them and sense the compassion and love surrounding them. It's clear from your messages that your Dad couldn't wish for a more loving family and perhaps that's the source of his contentment.

Your Dad did very well on chemotherapy and I'm sure that he treasured every minute of those six months with the support of you all. After having to fight so hard over the last six weeks, at least he is no longer in pain and suffering. That thought will give you the strength to come through this and we're all thinking of you and your family.

Love
Nicki xx

pauline
Posts: 48
Joined: Mon May 25, 2009 3:24 pm

Re: CHEMOTHERAPY

Postby pauline » Wed Jun 24, 2009 4:32 pm

Hi Gill ,

I am so sorry to hear about your dad. My thoughts are with you i do know what you are going through it's been 3 weeks since we have been in your situation' and the one thing that has kept me going is knowing he is finally at peace.


sending all my love and thoughts to you

take care Gill and try to get plenty of rest

all my love
Pauline XX

gillvb1
Posts: 76
Joined: Sun Sep 28, 2008 10:31 pm

Re: CHEMOTHERAPY

Postby gillvb1 » Wed Jun 24, 2009 10:01 pm

Pauline, Nicki and Ellie,

Thank you for your messages of support. I have been reading all your past posts and feel guilty that I have been harping on about myself when you are all going through so much too. Pauline, I am so very sorry to hear about the loss of your Dad, I don't know what to say to you, it is such a massive blow after everything you've been through.

Ellie and Nicki, you both have been so generous in your advice and support to me and I sincerely thank you for that and hope that you can stay strong.

I had already done my own research and have been realistic in my expectations but even then, one can never prepare for the actual events that we have and are going through.

My Dad was able to open his Father's Day cards on Sunday and he really enjoyed the family all getting together for him. Each day after that has seen him deteriorate. The hospital staff have removed all his monitors, ie blood pressure, heart rate etc, and he is just on a feeding tube and is receiving air to assist with his breathing. My Dad has fluid on his lungs and renal failure but is not sedated. Today he is in a very bad way in that his jaundice is a lot worse and he is sleeping most of the time. He turned his head and looked at me today and I know he knew we were there with him. My Dad is a shadow of himself but every now and then you can see a little of the real him. My Dad was suffering from itching which is all part of the obstructive jaundice but we got the staff to administer Piriton and he shows no sign of discomfort now. My Dad is not in pain and looks comfortable and at times content but he has lost so much weight.

I think that one of the most painful things I will face is having to tell my 6 year old daughter that her adorable Grandad has gone. They were so close and it breaks my heart to think that they will never see each other again. My Dad does not look like my Dad any more and I have no intention of my daughter seeing him like this so I shall have to choose my words carefully when the time comes. My daughter knows most of what is going on but thinks that her Grandad is staying in hospital forever (her interpretation of the situation). I don't have the heart to tell her the truth just now and will wait until the time comes. Sorry to go on but my partner, who is a fabulous person, is not a good listener or talker and I have just written what I feel. Love, Gill xxx

chinup
Posts: 47
Joined: Mon Jul 07, 2008 2:22 pm

Re: CHEMOTHERAPY

Postby chinup » Wed Jun 24, 2009 10:04 pm

Dear Gill

Just signed in and I am so very sorry to hear about your brave dad. Please don't think you have failed him, your sheer determination and dedication to get him the right help and treatment throughout the good times and bad has been absolutely faultless. The decision to take my mum into the hospice was probably the best one we made for her and you are unquestionably doing the best for your dad now.

My mum didn't seem to be able to see us, but every now and again she focused and tried to communicate with us, she wasn't able to speak but we kept chatting and telling her everything because by the way she responded we knew she could hear us. Listening to music definitely calmed her a great deal. Once she stopped eating and drinking the main problem was keeping her mouth comfortable. The doctor was keen to sedate her which we agreed to, though it was a hard decision, but we realised that it was very important for her to have a calm end after all the trauma of the previous weeks.

Pleased be assured that you are not alone. You've been a good friend to us all and we are all here for you and thinking of you especially now.

gillvb1
Posts: 76
Joined: Sun Sep 28, 2008 10:31 pm

Re: CHEMOTHERAPY

Postby gillvb1 » Wed Jun 24, 2009 10:12 pm

Chinup, thank you so much for your reply to my message - I had just posted it and as you can imagine I am not doing at all well. I am so reassured by what you said and can entirely relate to what you have said. My Dad is also not taking food or fluids now and we have been cleansing his mouth. He definitely knows we are around him and I am amazed that he hasn't shown any signs of anxiety. As soon as my Dad needs it we will not hesitate to sedate him because, like you, we too want a peaceful passing.

Thank you for your stirling support - it came at precisely the time I needed it!

Love, Gill xxx

Ellie
Posts: 302
Joined: Thu Sep 04, 2008 11:03 pm

Re: CHEMOTHERAPY

Postby Ellie » Wed Jun 24, 2009 10:33 pm

Dear Gill

You are certainly not "going on". That is what this forum is for, and you know you have friends here who will listen and support you as best they can. Don't every worry about what you write. We all need to get our feelings out sometime and it helps to write things down. Everyone on here going through one stage or another of dealing with PC themselves, or watching a relative go through it.

By writing down our experiences, it could help someone else understand more about this awful illness, with either the practical or emotional aspects. I've always felt this is a very genuine site and it is easier to read just about others with PC, rather than the many other types of cancer that are dealt with by other sites.

It's a relief to know that your Dad isn't suffering and is aware of you all being there. I hope that continues for as long as it needs to.

My thoughts are with you, Gill. Keep strong and remember you've done everything you possibly can for your dear Dad.

Love
Ellie
xx