hughesdewy

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

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

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

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

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

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.

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 –

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