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Update on my Dad

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  • #28458
    lainy
    Member

    Hi Ron and thanks for the update. I know what you mean about Lucille looking so good and defying what she has by how she looks. I swear everyone thinks I have made up this whole nightmare. And yes, the anxiety before Scans is another subject. Teddy always acts like everything is normal but I can tell the difference immediately after that doctor visit when he hears he is good. I have to call the Urologist for the stent exchange again that is due the end of May. Then May 8th is the Oncologist visit. I tell everyone at work that they take lovely vacations and we go to doctors! We will be hoping for great news on May 22nd.

    #28457
    duke0929
    Member

    hi and our best to everyone,
    well we just got word from the doctors yesterday that my wife Lucille is set up for her scan on May22 to see the results of the s.i.r.t. treatment she had on Feb5. It has been a long and agonizing wait, the anxiety grinds you down and just plain exhausts you.
    She is amazing, after a year of differant tretments and surgery she shows no signs of being effected by this dreaded monster. If you look at her you would not know that she had this disease. She has even gone back to work, she says it keeps her mind busy, and i quess thats a good thing. I take care of everything else, shopping, cooking, cleaning, appointments for doctors and fighting with insurances, a mans work is never done.Just a little humor there, because i am hopeful today, so much more than ive been before. We are going to crush this monster and win this battle and we wish the same for everyone else.
    We would like to thank this web site and the people on it for lending their support and advice, and for allowing us to lean on you.
    We still have 22 days until her scan and i will praying and hoping for a positive report and i will let you know how she does…..Thank you all Ron and Lucille

    #28456
    lainy
    Member

    Hi Gavin and thanks for clearing up the positions of the doctors. I think its an excellent idea to call out the GP the next time dad sweats or does not feel well.
    It is so hard to take care of an ill parent when you are the only one. And it’s hard to watch someone you love so dearly suffer like this. Please take some time for yourself and take care of yourself too.

    #28455
    gavin
    Moderator

    Hi everyone,

    Thank you all so very much for your posts, thoughts and insight, this support is helping me enormously right now, and to be honest, is something I have missed a lot. It really does mean so much to me.

    Hi Lainey, thank you so much for your honest and up front words and thoughts, they are much appreciated, and it feels good to be one of your cubs that you are protecting! Please dont think that you have to apologise for your post as you do not, I would much prefer it that someone said exactly what they are thinking, even if it may be hard to hear.

    A GP is a doctor, a family doctor as Dannielle points out. Maybe I should have made that clearer in my posts and I apologise for that. As far as this GP being new, he is new to the surgery having only joined it this year, but he is not newly qualified. He is also new to Dad as he replaced Dad’s last GP who retired earlier this year. As to the GP being in on the decision process over Dads treatment, he is not making decisions re treatment after the PDT and chemo etc, the specialist is. I get the impression that the specialist had asked the GP and the Macmillan nurse to talk to Dad about what may or may not lie ahead and this is what they did the other day. If the specialist thought dad needed to go into hospital this week then I think it would have been him that would have made that decision, perhaps with the GP giving his thoughts on how my Dad looked at the time. Im not happy about this as the jaundice and dark urine worries me, but I guess all I can do right now is put our faith in what the specialist says. I did speak to my mum about maybe getting a second opinion, but she wants to see what happens on the 26th with the specialist. As to me talking to all dads doctors etc, I do. The only time I have not talked to them was when they phoned dad giving him the CT scan results as I was not there at the time.

    Dad sees his Macmillan nurse next Wednesday and the jaundice and unrine is the first thing that I am going to raise with her again. Just in case anyone is not sure, a Macmillan nurse is a specialist cancer nurse who works with NHS patients in hospitals and the community. Also, Dad has been refered to the local Macmillan centre and his first visit is on Tuesday next week, to which I will be going with him. Here he wil get to speak to other patients and medical staff.

    I agree that it does not seem normal or right for someone with jaundice and dark urine to have to wiat this long to be seen by a specialist. Maybe it is different in the US and patients are seem much quicker than here in the UK under the NHS. We cant afford private healthcare and have to rely on the NHS system and how it works.

    Marion, thank you so much for your thoughts and kind words. I try to do my best for my parents in looking after them, I love them both dearly and would do anything for them.

    As far as Dads jaundice being related to his liver function or the stent possibly being clogged, I dont know as we have not been told. We were told that the stent being clogged was a possibility, but not that it actually is. I sincerely hope that if the specialist thought it was clogged, or a good chance that it might be then Dad would have been admitted to hospital by now. Hopefully the meeting on the 26th will clear up a lot of issues. I agree with you about exploring all the possibe options as to further treatment and I know that this is something that Dad will want to do. But right now it seems like all of that is on hold until the 26th. I think what I am going to do is the next time dad feels unwell, sweating etc, I am going to call the GP out and see if he can be admitted that day.

    Danielle, thanks for your kind words and for sharing your experiences with Jim and the troubles he has had with his stents. Does Jim have a plastic or a metal stent? My dad has a metal stent inside so I dont know if this has anything to do with him not being admitted to hospital as quickly as we hoped.

    It sounds like you are doing a great job in looking after Jim and getting him some good and quick help. Are the Mayo clinic and where your oncologist based 2 different hospitals? I dont know too much about how the US system works but I understood it to be insurance based and this determines levels of treatment etc. Much differnt from the UK where most people are treated under the NHS, National Health Service. As far as trying to bring forward dads hospital appointment, I guess only dads GP or Macmillan nurse could really do that. Kicking up a bit of a fuss seems to have worked for you and Jim and maybe that this is something I will end up having to do.

    Thank you all once again for your thoughts and posts, they are helping me a lot. If in my earlier posts I have given the wrong impression about anything then I apologise for that. I’ve just re-read this post and realised how long it is and i apologise for that also!

    I wish everyone the very very best.

    Gavin

    #28454
    daniellemarg
    Member

    Hi Lainy,
    GP is a General Practicioner – we use the same terminology in Canada. GPs are the doctors like a family doctor here, general practice rather than specialist.

    #28453
    daniellemarg
    Member

    Dear Gavin,

    Thanks for the nice words and it’s great for us to be in touch with each other and providing support.

    May I STRONGLY echo Marion and Lainy. I don’t think that your Dad is getting the right treatment, esp re: stents. Although it’s great that the new GP is personable and willing to meet etc (which is important), it sounds like he may not have expertise on this type of cancer. Have the doctors identified whethr the jaundice is due to the stents or liver function (as Marion pointed out) because if it’s the stents then 26 May is pretty far away. When jim’s stents have clogged he used to get a tiny bit yellow and have slight pain in the area. When we would call it in to the Mayo hospital the stents would be changed within 24 hours. I know that it’s different in the US than elsewhere (I am Canadian and if we were in Canada he would have to wait several weeks) but is there any way that you could get another opinion – – there are some others from the UK on this site who would know where to go. You sound like a really nice guy – could you push them to move the appointment sooner? Today the oncologist told us that he would see my husband in 10 days and begin chemo in two weeks (when the mayo team has already recommended that he begin chemo asap). i kicked up a fuss (politely and expressed that i would have the tumors measured for growth during the 2 weeks) and guess what they scheduled us for tomorrw and begin chemo on friday. i know that US is different but it never hurts to be pushy when it comes to advocating for our loved ones.

    Again, I echo Marion and Lainy and also send you our warmest wishes, thoughts and positive energy. Thank God your Dad has you looking out for him.

    #28452
    marions
    Moderator

    Dear Gavin

    #28451
    lainy
    Member

    Oh, my dear Gavin, where do I start? I am a mother bear protecting her cubs when I feel things are not right. And I am feeling things are not right. What right does a NEW GP have to be in on the decision making of something he does not know anything about? Why, if your dad is “hopeless” does the doctor not talk to you? It is not normal nor right for a patient to be even slightly jaundiced with dark urine and then to have to wait another month to be seen?
    To me, and I am not a doctor, just been on this site a long time, but to me, it seems if the cancer has not shrunk but has not grown there has to be something else they can try. Are you not allowed to get another opinion? Especially when dad said, I will do anything? This is not right. I am so very sorry to post like this and I apologize to anyone I may upset but I think a grave injustice is being done here. Perhaps we don’t have all the right answers but we do have the right to fight for it. I am wondering what is a GP? IS that a medical person like a nurse? Funny, I don’t feel any better now that I got this off my chest. I have thought about it for hours and decided I had to write you.
    Good luck and I truly hope something else can be done soon! Please keep us posted. P.S. If the stent is in fact blocked it may cause greater problems down the line.

    #28450
    gavin
    Moderator

    Hello everyone,

    Well the gp and Macmillan nurse came round yesterday to see Dad. It turned out to be a lot different day than we we were all expecting. The gp had spoke to the specialist on Monday and said that the 2 of them had had a long discussion regarding my Dad.

    First off all, it seems that Dad doesn’t need to go to the hospital right now but if things get worse over the next few weeks then this will change. The gp told us that this is based on the results from the last blood tests. He asked dad about any pain he was getting and just now, the only pains really are twinges in his side where the stent is. As it is right now, Dads appointment to see the specialist still stands for the 26th May.

    Then the talk moved on to the future and the gp started asking Dad if he had thought much about what may lie ahead. They talked about the PDT, how it had gone, what everyone had hoped for etc. Naturally, we had all hoped the tumor would have shrunk, but it hadn’t. Then I asked about possible chemo treatment as being the next stage of treatment. Well it turns out that the gp and the specialist had discussed this on the phone and from what the gp told us, the specialist seems to be of the impression that chemo at this stage wont help my Dad.

    Dad didnt seem to take this in at the time and kept saying that he was willing to undergo any type of chemo or any other treatment if it would help. At this point, the tears were welling up in his eyes and he was finding it hard to talk.Well, we all talked some more about lots of stuff and now Dad seems to realise and accept that chemo may not be an option for him. It seems to me as if the gp was sort of preparing him for his meeting with the specialist in May.

    So, as to what happens next I have no idea really. Guess we will just have to wait and see. Dad was referred to the local Macmillan centre to go for couselling and to meet others in the same boat as him. I think this will do him good to talk to others he seems to be up for this. His Macmillan nurse also thinks this will be good for him too and she will be coming back to see him next week. She also had a talk with my mum and will be dropping in to see us all every week now. Dads gp is new to the practice and this is only the second time he has seen dad. His last gp retired a while ago. The new gp is really nice and Dad really liked him. He is young and spent a load of time with us all yesterday and we all got the impression that nothing would be too much trouble for him. Plus, he seems like a real people person and very easy to talk to which again, Dad liked.

    So yesterday turned out to be quite a different day than what we were expecting really. And to top it off, it the whole kitchen needs to be ripped out and replaced and some of the walls in the bathroom are saturated with water and need to be replastered along with the ceiling.

    Not a good day really.

    Hi Danielle,

    Sorry to hear that your husband has had problems with his stents, I hope you are managing to get some help with them. As to my dads sweats, he seems to get them every 4 or 5 days or so and in general on those days, feels pretty rough for most of the day and stays in bed. Then the next day he seems to be fine again. Hopefully we will find out in May if the stent needs to be changed or not. Thanks for your kind words and I wish you and your husband my best wishes.

    Well, many thanks to you once again for listening to me.

    Best wishes to you all.

    Gavin

    #28449
    daniellemarg
    Member

    Hi Gavin,
    My husband has a lot of problems with his stents as well, it does sound like your dad’s might need to be changed. Regarding his sweats, are they following a high fever (my husband sweats a lot when his fevers break). he has had numerous infections. Are the nurses drawing blood samples/cultures when they see him.
    It sounds like a very difficult time but you sure seem to be handling it well – your family is lucky to have such a supportive son.

    Best wishes,
    Danielle

    PS – my husband is part Scottish :)

    #28448
    gavin
    Moderator

    Hi everyone,

    Many thanks for your thoughts and best wishes and for replying to my post. I realised yesterday after I had posted just how much I have missed by not coming to the site as much during the last few months. It really does help to talk to others, especially those who are in the same boat as myself.

    Well the gp did not come yesterday. We waited for 2 hours for him to turn up then ended up phoning the surgery to be told that the appointment was booked for Tuesday and not Monday. This was not what we were told on Friday. Then the gp himself phoned after that apologising for not turning up saying that dads Macmillan nurse was not available on Monday. Dads Macmillan nurse is very reliable and comes to see him when ever Dad needs her, so it sounds as if the gp had not confirmed with the nurse that they would both be coming round on Monday. Anyway, not too chuffed about that but not much we can do about it so they are coming round today.

    The water situation is getting worse and a surveyor is coming today to assess the damage. It’s not looking good, the bathroom and the kitchen will probably need to be re-plastered at the very least so more stress and hassle all round which we could do without. The flat where the water is coming from is rented so trying to track down the owner and deal with him has not exactly been fun. Dad gets flustered on the phone dealing with this sort of stuff, so I’ve been handling it all.

    Lainy, I agree that the darkening urine and the re-appeaance of the jaundice should not be ignored. This is why I pushed Dad to see the emergenvy doctor that Saturday night. I did at the time suspect that the stent may have become clogged and needed to be checked. It’s thanks to you, Marion and others warning me for what to look for as signs that the stent may be getting blocked, so many thanks to you all for that advice!

    I also agree that the specialist not getting in touch to discuss the CT results is not acceptable. I told Dads Macmillan nurse my thoughts on this and she agreed and I will be mentioning this to the specialist the nect time we see him. Dad has an appt to see him on the 26th May, but the gp tried to get this brought forward and if Dad has to go into the hospital this week then he will see him there. It is good that the tumour has not grown and we were happy about that. As to another go at the PDT, we were told that it can only be done once so we will have to wait and see what treatment if any is next.

    Tess, good to hear from you to. It is indeed tough battling illness and hopefully the better weather will mean that mum and dad can at least get to sit outside for a while. It’s not much, but at least it gets them out of the house, if even only for a short while and it breaks up the monotony of each day.

    I agree that taking some time for myself is needed and I do try and do that. I’ve been caring for my mum, my mum and my grandad before he died and now my mum and my dad for over 5 years and sometimes it does feel like its catching up on me. But I wouldnt stop doing it for anything.

    I wish you and your family all the best.

    Marion, good to hear from you too. Yep the leaking water has just topped off a bad few weeks but hopefully the surveyor will get the ball rollling with the repairs etc. And hopefully the weather here this summer will be good, but this is Scotland so im not counting on it too much! We were hoping to get away for a small break this summer in July for my dads 65th birthday. It would only be to a small holiday park on the coast just south of Edinburgh with everything on the site so not much walking would be needed. But a break away from home would do my parents the world of good.

    I told the emergency gp, dads gp and the Macmillan nurse my concerns over the stent possibly being blocked and they all agreed that that may be the cause of the jaundice re-appearing. I sort of think that dad being admitted to hospital this week will be the best thing for him right now. Hopefully if he does go in then it wont be for anywhere near as long as the 7 weeks that he was in for last year.

    Many good wishes coming back your way also.

    Sophie, many thanks for your very kind words, although I dont know about being my parents hero or anything. Maybe I’ll ask my mum that the next time she’s yelling at me! Her lungs may be badly affected with her COPD, but she sure can shout at me when she wants to!

    All the best to you and your family.

    Thanks to you all for your words and support. I will keep you up to date and let you know what happens today.

    The best to everyone.

    Gavin

    #28447
    sophie
    Member

    Dear Gavin,

    What a good son you are. You are your mom and dad’s hero, I know.

    All the best to you and your parents,
    Sophie

    #28446
    marions
    Moderator

    Hello Gavin…..I have missed your postings. I am sorry to hear about everything not going too well; seems as if the leaking water just topped it of. Now, with the better weather coming around hopefully, your Mom and Dad will be able to enjoy some of the outside. Gavin, I am wondering: has the doctor mentioned anything about the replacing the stent? Please, stay in touch and let us know how things are developing.
    Many good wishes coming your way,
    Marion

    #28445
    tess
    Member

    Great to hear from you again Gavin. We too have thought about you and your family often, as you were one of the first to welcome my family to this site in 2008. It is tough to battle sickness, inside, during the winter, with little escape. You take good care of your family, but don’t forget to take some time for yourself too, you need that break- in order to regain the strength to do it again tomorrow.

    That is good news that your Dad’s tumor has not grown, but I know the associated challenges are still very difficult, and the unknowns are scary.

    You and your family will continue to be in our hearts as prayers.

    Best to you,
    Tess

    #28444
    lainy
    Member

    Gavin, so very sorry you all have been having such a rough time. Jaundice and dark urine should never have been ignored. If your dad’s tumor has not grown perhaps another mixture would help even more. Also the fact that the specialist never called to discuss the scans with you is not acceptable. I sincerely hope your dad is admitted to the hospital so that they can alleviate the jaundice. Guess, I would also tell the specialist you want a new doctor (other opinion) and that the neighbor upstairs needs a plumber (the doctor might try that). Sorry, it just hit me, I had to say it. Nothing angers me more than a patient who is being ignored. I still think its good that the tumor was kept at bay.Good luck today.

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