hughesdewy

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  • in reply to: overwhelmed…….living a nightmare #48120
    hughesdewy
    Member

    Hi Ronidinkes,

    I’m so sorry you are caught in the middle of parents who are suffering from different horrible, life-threatening conditions, I’m not surprised you don’t know where to run. Illness and fear and despair can sometimes brings out the worst in people (they are clearly feeling comfortable enough to voice their opinions about one another in front of you), and perhaps when you are not there with your parents, they do manage to find some middle ground and some enjoyment or even comfort in one another which is the bit you mind not see when you leave (After all, they have clearly elected to stay together in spite of “hating” one another haven’t they?).

    It sounds like your mum is finally taking control of her cholangiocarcinoma – the one thing i have noticed with my own mum is that she loses a lot of ‘herself’ when she is being dictated to by us (who care and want the best for her), the doctors or by the disease itself which sometimes makes her feel worse or weaker without warning. I guess you have to respect your mum’s wishes to finally take back some control, and admire her for actually being so strong and deciding enough is enough. My mum also refused chemo and radiation for the same reasons and defied a 6-9 month prognosis by keeping up her mental fight for the last 2 years, so medical treatment doesn’t count for everything!

    If it were me in your shoes, I think its time that I would want to begin to be the child in all this again, and I think you are right to refer them to the medics and hospices, as after all they are geared up to properly counsell and nurse your mum and help her through this and manage her condition and her end of life.

    I think we have to let our parents (continue) to make their own decisions even though they are weak and vulnerable and we feel we want to wrap them up in cotton wool. (For example, I would hate it if someone decided what i should do with my life). But I’m sure they really value you helping to guide them too, supporting them, loving them and respecting them and above all, enjoying all the good things about them that make you love them and want to care for them. At the end of the day, they are your mum and dad and not the other way around.

    Please don’t cry anymore Ronidinkes. My heart goes out to you for what you are going through and the difficulty and fear you are facing because you are scared of the consequences of your parents making the wrong decisions. They have a whole lifetime of experience under their belts, so I’m sure their choices are very wise.

    Take care, and please take some time for yourself too. To me, you sound like an amazing, caring and such a thoughtful daughter who just wants the best for her parents.

    Wendy

    in reply to: What should we expect? #47584
    hughesdewy
    Member

    Hi Alison,

    I haven’t visited for a while but found this a really friendly, helpful and comforting website in the early days when our lives were thrown into turmoil – an emotional rollercoaster – scared of the future – probably just what you are going through now. My heart goes out to you because it was a horrible time.

    My mum was diagnosed April 2009 and v. poorly with all the symptoms you mention for your dad plus jaundice which didn’t seem to want to go away (she said that was the worst thing and v. tiring). After 7 weeks in hospital, which left her malnourished and v. v. weak – after 3 plastic stents and finally a metal one later in the summer of 09, she ‘came home to die’, deflated and hugely angry that “this was going to be it”. (NB: We wished we’d insisted on a metal stent in the first place because they kept messing her about by replacing plastic ones – but I strongly suspect it was a money issue as these are expensive and tricky to fit!) My mum decided she didn’t want chemo, radiation and she wasn’t offered surgery because it is ‘incurable’.

    Since that time (it seems ages ago now) my mum has fought back and has gone on and defied all the oncologists and surgeons prognoses of 6-9 months – this is almost 2 years on and she’s still here and chirpy (although quite weak these days but tries to keep up with what she used to do so easily and take for granted). She actually got stronger after leaving hospital so weak, for a period of time enjoying a good quality of life, going out and about again, enjoying food (but not as much as she used to) and put on weight! She takes ensure drinks every day which build up her strength and supplement her diet, so it doesn’t matter if she doesn’t eat regular meals, and drinks plenty of water. She still gets infections of the stent from time to time and which is controlled with antibiotics (specifically for the stent/bile duct area) and even got scepticemia (with tremors/shakes) which managed to be treated with different IV then, oral antibiotics. Now she keeps antibiotics at home to take at first early signs: severe pain, nausea and vomiting (bile), temperature, tremors or a mixture of these, and they try to take blood cultures too to check for liver function and blood infection to make sure she’s taking the right one. She has anti-sickness pills and manages on paracetomol for pain mostly, but when she has had severe pain has taken tramodol (an opiate which helps her to feel no pain and actually raises endorphines so made her feel more positive). She managed v. comfortably taking a low dose of tramadol for over a year, but was falsely told by a local doctor to double the dose when she was clearly just suffering pain from an infection which could have been resolved by taking antibiotics! The higher dose made her sleepy and messed with her mind, so she took the decision to stop altogether (although did go through a kind of ‘cold turkey’ because she didn’t wean off slowly, and now won’t take them at all.)

    So my advice is to get a good hospice, cancer or macmillan nurse to keep an eye on your dad at home, keep faith, have hope that your dad will outlive his prognosis, but gently prepare too for his end of life with all his wishes which will give him back some of the control he may feel he’s lost with this diagnosis. Above all, enjoy every minute of his and your time together won’t you, say all the things you want to say so you have no regrets, and keep setting the milestones to keep him strong and to keep going and positive. I have given you all the downsides in this note – but there have been many, many upsides too which so much fun and laughter and joy – more than we ever appreciated before her diagnosis. We love her dearly.

    I’m certain all these things will come naturally too you, just like it did for us – and I have learnt that time is too short to waste it worrying and crying and feeling down.

    These are the things that have really helped us all, as no matter what my mum’s fate now, we feel more prepared than we were in the beginning of her diagnosis and are so glad and grateful for the extra time we never imagined we’d get.

    I really really hope (as I do for everyone here) that you have many more happy memories together and your dad defies the medics too.

    And I hope and pray one day a cure can be found for this cancer so we don’t have to watch our loved ones suffer anymore.

    Take care.

    Wendy

    in reply to: Update on my Dad #31854
    hughesdewy
    Member

    Hi Gavin,

    it’s sad to hear about your dad and I hope he can get comfortable enough to have a good night’s sleep, and the furosemide works and can help him reduce some of the fluid retention. You must all feel a bit overwhelmed by this and I’m sorry about that too. I really hope that the GP can make your dad feel a bit brighter and better, it’s good that your dad respects his judgement. I’ll keep everything crossed for you Gavin, and I’m so sorry you are on this horrible journey. My mum isn’t too good either right now, but we live in hope that she will plateau again after this recent dip. She’s having a real problem with severe severe pain that she can’t seem to control with the codeine, so today she called the GP and started on a stronger morphine, much against her will, mainly because she’s scared of becoming addicted! (My mum is the kind who would rather suffer a headache than take paracetomol, so you can imagine this has been one of the biggest hurdles for us to help her overcome…) She too has some fluid retention, but they haven’t suggested anything, so I will ask about the furosemide.

    Julia – I’m so sorry too that your sister has had a rough week, and hope that she rallies and improves over the next few days… and reaps the rewards of her chemo…. again, everything crossed it works so well for her.

    Take care, you are both very much in my thoughts right now. Wendy

    in reply to: My mom #31648
    hughesdewy
    Member

    To dear Amy, I read your post about your mum and it felt so familiar – my mum has CC and has been given a poor prognosis. I have to be honest and say that I have felt these very same fearful emotions strongly (indeed it was horrible when my mum was so unwell that she couldn’t even hold a conversation, there seemed to be so many things she had told me that I couldn’t remember, and I am fearful of how much I will miss her). I guess we always need our mums – I am in my early 40s and still need mine! My mum has even spoken about her own mum, and how she missed her when she died (of old age).. and how much shes looking forward to (hopefully) seeing her again in her next life. I could never deny her that, however much I want her to stay here with us.
    I guess, in nature, nothing stands still, and if it gives you any comfort whatsoever – I can see very clearly from your mailing that your mother gave you the best gift of being a wonderful caring mum for your own daughter, and taught you the real pleasure of mothering and gardening – the joy of growth and discovery, nurturing.
    I’m sure your mum is watching over you proudly, seeing you do everything just right, proud that her passions are being passed onto your daughter and in turn future generations.
    I know this doesn’t take away the deep pain that you are probably feeling or your great sense of loss – but I hope this gives you some feeling of comfort when you miss her most. Wendy x

    in reply to: New and need help with mom’s condition #32210
    hughesdewy
    Member

    So so sorry to hear about this, I hope they manage to make your mum feel comfortable now. My thoughts are with you.
    wendy

    in reply to: Just Diagnosed, SWM 56 with CC #31223
    hughesdewy
    Member

    Hi John, welcome, but so sorry too that you need to be here.
    Take that as a great sign that your stent is working straight away and bilirubin levels dropping so fast (ie you are feeling better in yourself)… this is a good place to find out everything about CC, so ask anything – guaranteed that the wonderful answers you get will will help provide you with the best information to make informed choices about the course of your treatment.
    Take care and best of luck – you sound like you have a great medical team on your side not to mention us lot.
    Wendy

    in reply to: Sad News #32722
    hughesdewy
    Member

    Dear Margaret and Blair, You must miss him desperately and I’m so sorry for your loss. I hope you find comfort in these words:

    “The end of a great life should be as celebratory as its beginning. Both stages are inevitably linked. It is how a human being engages with the middle bits that reflects who they really are”. (Lesley McIntyre)

    I didn’t ‘know’ Ron as well as many here only having just joined a few months’ ago, but he came across as an amazing man, who gave others such wonderful support and encouragement and always with humour. I’m sure he will leave a great hole in your lives.

    with deepest sympathy
    wendy

    in reply to: Helping my Mom #32857
    hughesdewy
    Member

    To dear donallalu
    Indeed your mum does sound like a fighter, and especially with you and your dad by her side routing for her every step of the way. We can all feel the sadness you are feeling: its so desperately hopeless and horrible isn’t it. I really hope the chemo and radiation work for your mum and you have something positive to think about to get you through these darker days.
    Take care all of you. Wendy

    in reply to: Newly diagnosed…what next??? #32913
    hughesdewy
    Member

    Hello to both fightforlj and saving grace
    Its good to meet you but I know you would really rather not be here. But I just want to wish both your loved ones the best of luck over the coming days and months. This is a wonderful place for the BEST knowledge, comfort and compassion from sadly too many others in the same position as you, but the wonderful people here have certainly helped our family answer many questions and endure a similar journey, knowing we are not alone.
    Regarding question about the PET – as far as I know, there is a lot of information that docs can gather about spread of the disease through other exploratory means, such as biopsy/CAT scans/blood tests/general examination, etc.. they can see if tumours are primary or secondary and stage/spread due to the cell activity; so it may not be entirely necessary for him to have a PET if he has already had a number of other procedures, and it’s not a service which is freely available by their health provider. My mother’s health providers tend to use PET scans more to look at effects of chemo rather than to determine stage and spread of cancer.
    With best wishes and lots of hope for the following days for your brother fightforlj and ex-husband and friend, savinggrace and I hope they both have good, knowledgeable and above all caring medical teams on their sides. It sounds like they both have the best advocates they could wish for.
    Wendy

    in reply to: pain and mental fatigue #32603
    hughesdewy
    Member

    Hi Kris, please don’t give up, you are too young and full of life. I know my mum has put off taking pain relief for fear of it making her feel numb – she wants to feel in control, so I can understand where you are coming from too. But when you are feeling serious pain you really are not in control at all – it controls you. I really hope that you can help manage this with your doctors over the coming weeks, and begin to feel a whole new lease of life and new strength to plan your beautiful garden for next Spring. It sounds idyllic by the way.
    My thoughts are right with you, your strength has been such an inspiration, and I hope you can remain positive and fighting for many more months and years.
    Wendyx

    in reply to: Update on my Dad #31826
    hughesdewy
    Member

    Hi Gavin,
    This is horrible, horrible. My heart goes out to you. There is nothing worse than knowing that there is nothing more that can be done, other than to help alleviate and treat the symptoms, it must be feeling so hard for you all right now.
    I’m glad your dad is in the care of the wonderful Macmillan nurses and hope that they will help him deal and cope with these symptoms. I really hope he finds some renewed strength too; my niece (a doctor) said to my mum (her granny) that she sees miracles happen every day on the wards at her hospital, so I desperately hope for one of those for your dad.
    Gavin, you sound like a wonderful son, don’t feel bad that you weren’t around to “soften the blow”; more importantly you are there to help “carry them” through these bad times. They must be full of admiration and really proud of you.
    My best wishes to you and your mum and dad.
    Wendy
    PS. My mum is quite bad at the moment, excruciating pain at the point of her stent which no-one (medical) seems to know what is the cause. She’s been given antibiotics just to cover any possible infection. She has increased her pain relief and again, all we can wish for is that this is a short acute episode and she will improve again, but she is frightened. She has been such an amazing fighter and so positive; making herself do things we never imagined she would do again, like trips out and travelling and coming to stay with us, talking openly about life and death, but trying to live a “normal” life these past few weeks. We are so in awe of her strength and willpower. I just hope and pray she can keep up strength because we are not anywhere near ready to let go and neither is she.

    in reply to: Update on my Dad #31786
    hughesdewy
    Member

    Hi Gavin,
    thank goodness you seem to have caught the jaundice early on this time – no wonder he has felt so tired. I’m so pleased the tablets are working. I’m glad he’s drinking loads and eating some, that will definitely make him feel better. My mum has slow release Vit C tablets which she swears by. I dearly hope they can clean out the stent and give your dad a new lease of life, i’m keeping everything crossed for you that he picks up again quickly.
    My mum has also been having pain in one side below the rib, and sometimes it ‘catches’ if she moves quickly or turns in bed. We were trying to work out what it could be (its where the tube for the metal stent was put in so I’m wondering if it’s scar tissue?)….but weirdly some days are better than others. Please let us know if they shed more light on your dad’s pains.
    Take care Gavin, and i hope all goes well over the next few days and your dad gets his chemo and it helps.

    Julia – i really hope it went well for your sister too.

    Take care all, Wendy
    ps finding it har d to type wwith crossed fingers!!

    in reply to: Update on my Dad #31763
    hughesdewy
    Member

    Hi Gavin

    Firstly (belated) happy birthday!

    I was so very sorry to hear about your dad and of course your mum too – you must have so much on your mind right now, and i really do feel for you. I hope you were able to enjoy a nice birthday, and put worries aside for a while, for some fun.

    Ensure and Scandishake drinks will soon put weight on and build up strength… my mum avoids the dairy scandishake but quite likes the fruit Ensure – they are highly calorific so she only has 1 a day rather than the prescribed 2 and at least that takes the pressure off having to eat so much. She also really likes soups – nutrition in a cup, and bizarrly a thin chicken soup is a favourite so there must be something in that!

    My mum goes through periods when she feels worse and vomits and has reflux, but then completely recovers, and feels on top of the world at other times – very weird, so I really do hope this is the case for your dad too and that he picks up again. It was explained that the stent she has (metal) is open ended at the top with no valve like the ‘natural ducts’ – so bile can also reflux back out of the stomach into the liver and cause infection and feeling generally awful. I don’t know about plastic stents, but guess they don’t have a one way valve on them either – so just maybe that’s what is causing the problem too with your dad feeling so bad? If he has the shivers and shakes it could be that he needs an antibiotic? My mum has some antibiotic tablets to take at home as soon as she feels really bad.

    I guess too, there is a lot of positive thinking needed to ‘fight’ the cancer – I think the mind is the best weapon against this and other horrible diseases, so I really hope he gets his fight back again.

    I agree with the others – lots of drink can really help reduce potassium levels – it’s what helped my mum alongside a really disgusting drink she took (using disolving ‘potassium tablets’ in water – she says the trick is to use as little water as possible and follow with a drink of water to take the taste away). Of course renal infection can cause confusion so make sure your dad keeps his fluids up….. if he keeps falling asleep (which my mum did when she felt really bad) then he might not be taking in as much as he should? We had to nag my mum to drink, drink, drink when she was feeling at her worst just after her spell in hospital… Perhaps try giving crushed ice cubes for him to suck if he can’t face drinking.

    My mum isn’t having any chemo, and we respect her decision entirely, but I often read here how it really benefits others with few side effects so maybe worth a go?

    Instead, my mum has started taking slow release vitamin C and sea kelp and caster oil tablets, which she thinks has helped her to feel a little better. She’s not doing the mistletoe therapy because that entails intensive therapy (ie she would have to be induced into high fever on 3 occasions to kick-start her own immunity)… and with no guarantees… Again she couldn’t face it. I’ve heard that some GPs are willing to give regular, smaller doses of mistletoe injections, so if your dad’s GP does this, or is willing to try, then it might be somethign worth pursuing? It has apparently worked well in some women with breast cancer, but not tried for any CC patients in the UK before according to my mum’s GP (who is not willing to try it!).

    I’ve just been reading about this new research starting for babies with cancer, and can’t help but wonder if it’s worth a try for other cancer patients such as those with CC, as these food substances are ‘safe’ and easily come by and quite tasty – have told my mum about it too, so she’s going to give it a go. I got this from the Sparks website in the UK, as it seems they are funding this research.

    “Green tea and red pepper extracts for the treatment of neuroblastoma
    UCL Institute of Child Health, London –

    in reply to: My brother is gone… #31735
    hughesdewy
    Member

    Dear Sandy
    I’m so sad and sorry for your loss – it must be so painful to have to suffer this ordeal again, losing another of your close family members to cancer. It is a horrible, ugly, undescriminating disease isn’t it. I do not blame you for feeling angry, but I hope you can find some peace too. My heart goes out to you and your family, and I hope you are able to find comfort in one another during this tragic time.
    Wendy

    in reply to: Update on my Dad #31743
    hughesdewy
    Member

    Dear Gavin,

    I’m so so sorry to hear about your dad. I know my mum has good patches and bad patches, some days when she is more sleepy than others – in fact she came to stay with us for a few days and slept for most of the time and ate enough to feed a bird, which really worried me – but she has since picked up again and been less sleepy on some days since, had great appetite on other days, and even managed to drive and go out with a friend for coffee!

    She was told that high level of calcium in her blood could cause her confusion – and it was something she should look out for, as this can be monitored and controlled with a short stay in hospital and IVs. For my mum, this is NOT an option- she’s had enough of hospitals! And she would rather be confused. So, I don’t know if the calcium levels in your dad’s blood has ever been an issue, but it might be worth investigating? High calcium can cause fatigue too. The other thing that can cause confusion and fatigue is low iron – causing anemia so maybe that is another thing to ask about. I’m sure like my mum, your dad gets regular blood checks and they would pick something like that up quickly?

    I’m glad your dad enjoyed his horseriding at RDA…and how lovely that you have such nice photos and video footage. It’s great to hear that he and your mum are being looked after so well by the Macmillan group.

    Perhaps as your mum and dad enjoyed going out together so much, you can persuade them to plan something else nice to look forward to?
    My thoughts are with you all right now Gavin. I guess you have to hold onto the fact that your dad’s bilirubin (jaundice) is not causing him any problem, and I guess that is a good sign. I really hope the CT scan turns out to be nothing. I really hope too Gavin that he picks up again as well..

    Best wishes, take care you are all in my thoughts
    Wendy

Viewing 15 posts - 1 through 15 (of 38 total)