Chemo not working

User

Posted 27 May 2015 at 18:42

I wasn't sure what to call my conversation thread, as so much has happened over the past couple of months. My Dad started chemo in the middle of March. After the first dose he suffered a lot with fatigue but no other nasty symptoms which was great news. Unfortunately after the 2nd dose, he started to get pains in his calf. Nobody seemed to know the reason for this at the time because as far as we knew he did not have any mets in his legs. The pains would come and go and he would have some relatively normal days and some very painful days. We put this down to effects of the chemo. Also, 3 days after the chemo, he was admitted to hospital due to severe pains in his head. Hospital staff presumed the cancer had spread to his brain and so did a scan, which fortunately showed nothing new. He stayed in hospital for a couple of days but was then allowed home again. On 1st May (Bank holiday weekend) I sat with my dad whilst he had his 3rd lot of chemo and all went well. I visited from the Thursday until the Monday and he was fine. Occasional pain in his calf but nothing more. However, upon returning home (I live in Gloucester, Dad lives in Kent), my mum informed me that the pains in his leg were getting worse and he was in terrible pain on the Monday night. Tuesday morning, Dad couldn't even get out of bed, so an ambulance was called and he was carted back off to hospital.

Again, no apparent reason for the pain so a few painkillers given and packed off home again. Everything has been a bit of a blur for the past few days though. The pain was so bad, that he was taking paracetamol, nurofen, tramadol and morphine tablets which still weren't really dulling the pain. Both my parents spoke to the GP, MacMillan, the chemo dept etc to try and get some answers to no effect as nobody really wanted to work out of their comfort zone, ie chemo unit only give chemo. His blood levels weren't right last week, so no chemo given, but a blood transfusion given instead. During his time of receiving blood, he needed the toilet and it was at this point that a nurse picked up on the fact that he could barely stand, let alone walk to the toilet, that something was wrong.

Finally, some notice was taken of his pain and they decided that he had a blood clot in his leg. No scans or blood tests were given at this time, just guess work. We thought that this was sort of a good thing as it meant he would be able to stop taking the morphine tablets that were causing him constipation. The clot was treated with injections over a 4 day period finishing today when a scan would be done.

However, in the meantime, a hospice doctor had arranged to call on them for an initial visit and when my dad explained that he had got over the constipation but had been passing black stools, the dr called an ambulance and had him admitted yesterday. Since being in, he has had all sorts of tests, a chest x-ray, blood tests, even an endoscopy this morning but nothing found. He had a scan on his leg which showed he hadn't had a clot and had probably never had a clot.

At the time of writing this, he is still in hospital, feeling really low as the pains in his leg continue. My mum had to ask several times for him to have some painkillers and even some food and drink. My mum also had another call from the hospice dr today saying that the pains were probably being caused by further tumours which obviously means that the chemo isn't working.

A really sad day being had by all and I just wish I could do something to make him feel better.

User

Posted 28 May 2015 at 04:39

hi rachael
firstly dont beat yourself up wanting to be able to do more, you are doing all you can and i am sure dad and mam know that
your frustration not knowing what is happening is understandable, with every test seeming to tell you nothing, not had any chemo yet myself but it may be severe sideaffects from it just guessing on this one
hopeing that it gets better for your dad,mam and yourself

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User

Posted 28 May 2015 at 09:43

Hi Rachel,

Not experienced chemo yet myself but know that side effects are very individual so hard to predict. If the pain is further bone met spread then they should do a bone scan to determine this and they can give RT blasts to the affected area to ease the pain. They may also reduce the dose level of the chemo to help with its management. It is a worrying time for you all but they appear to be recognising the problem and hoping will find solutions. Thinking of you at this difficult time. Keep in touch, others will offer more knowledgeable support.

User

Posted 28 May 2015 at 20:45

Thanks for your help and support. Dad did have 1 blast of radiotherapy to his hip about a week ago. Not sure how long it should take to take affect though.

He was due to come out of hospital today but they weren't happy with his blood levels so he has to stay in another night, however, he is now feeling much better, even if his body says otherwise!!

It's the big day on Monday. Seeing the oncologist to find out if chemo is working. Mum seems to think that Dad really doesn't know how ill he is and she doesn't want him to know as she thinks he couldn't take it and would just fall apart. I don't really know what I think about whether she should tell him or not. He keeps saying that he is going to live to 104 (he is only 71) and she really believes that's what he thinks.

What does anyone else think? Should she tell him??

User

Posted 28 May 2015 at 21:20

Rachel

I have always believed in the power of positive thinking - I would be tempted to say nothing, and talk about the future and what he hopes to achieve.

I hope things improve quickly for your dad. You are doing your best, but not knowing the causes of his difficulties is very frustrating.

Keep strong.

Paul

Stay Calm And Carry On.

User

Posted 28 May 2015 at 22:49

Rachel, my guess would be that he knows better than anyone else how serious his situation is - after all, he is the one that feels the pain and finds himself in a hospice - but that he has an overwhelming urge to protect your mum and his family by playing it down. If that is what he wishes, then I think you have to respect that.

The medics will not tiptoe around it though - they will talk directly if they can because there are conversations and plans on which they might need to hear his views or wishes. Hospice staff are usually very well tuned in to how much information the patient (and the family members) can handle.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 29 May 2015 at 13:06

Hi Paul, Lyn and others

Thank you for your advice. Dad is not in a hospice but has just had an initial visit from the hospice doctor to see how they can him with pain relief at home etc.

Dad had a stroke about 12 years ago and although he made an amazing recovery, he doesn't always find it easy to retain and process information. I have said to mum a few times over the past few days that he is probably aware but is keeping positive to protect the rest of the family but she insists that he has no clue and that he still believes he will be cured.

On his first bone scan, which they saw, a couple of years ago now, it apparently showed bone mets all over his torso, one in his hip and one even in his scull, so as much as I think he is my superhero, even I can't imagine that he believes he will be cured.

Mum wants to take over all his decisions though, even though I have told that these are not her decisions to make. I understand that maybe she wants to keep the worst from him for as long as possible, but surely when the times comes, about where he would like to be at the end, albeit at home or in a hospice is his decision. She has even asked the doctor if she can make the DNR decision for him. I would totally agree that if only to prolong his life for another few days or a week then he should be allowed to pass in peace but surely that is for him to decide.

Don't worry though, I am not planning to go all guns blazing and tell him myself. I would never do that. The last thing I want to do is upset him more.

Rachel

User

Posted 29 May 2015 at 13:35

I really feel for you all right now. What your mum may not realise is that there is an awful lot of legislation around when the medics can allow someone to make decisions for someone else. When my mum was at the end stage with a brain tumour, she kept forgetting what was wrong with her and the doctors & nurses informed her every day that she was terminal because the guidance says she must be informed about decisions relating to her care. It was dreadful for us because every time they told her, she was shocked & upset until she forgot again. Crazy but true :-(

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 29 May 2015 at 17:38

Lyn

An example where the law is an ass. My mum has very poor short term memory problems, and although she is doing well at the moment, I can foresee a situation developing similar to what you had to deal with.

I cannot imagine how awful that must have been.

Paul

Stay Calm And Carry On.

User

Posted 29 May 2015 at 18:05

It was dreadful and the main reason that I ended up kidnapping her from the hospice. I know that most people feel passionate about their local hospice - and they provide an essential service and it is shocking that they rely on charitable donations in this country - but in the end, I wanted her home so that I could care for her in the way that I felt was best. It caused a big fuss at the time but, for us, was the right decision

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 29 May 2015 at 18:07

Sorry to hear about your dad Rachel.

If your dad appears compos mentis to the staff then your mum will not be allowed to make any decisions for him.
I can understand why she wants to protect him but inevitably it is a decision for your dad and his care team, until such time as the team agrees that he is unable to decide for himself.

If dad is in blissful ignorance, either in reality or because that is how he chooses to see it, then perhaps it is kinder to not force the knowledge into him, especially if he really does know but is protecting you all.
I feel for all of you, and anyone else going through this.
Best Wishes to all
Sandra

We can't control the winds - but we can adjust our sails

User

Posted 29 May 2015 at 22:49

Hi Rachel,

Thinking of you and yours. Everyone so different, my Dad wants to talk about it and put all his affairs in order, which can be hard on us. And your Dad the opposite and again hard on you. As Sandra says maybe blissfully unaware works for him. It is such a horrible disease and you never know what is going to happen from one day to the next. Can only do your best daily and take each day as it comes.

So heart-breaking I totally understand.

The Urologist made a flippant remark to me the other day, and I thought I wonder if it would be so easy to say if it was you or one of yours. He said "you can't pre-empt everything that is going to happen, just be grateful of the good days". Hmmm! Be nice if they could sort the symptoms and side effects out so that the patient can have more good days. It can be frustrating and I am sure he meant nothing by it though, I suppose families get over sensitive in a bid to try and do their very best for their loved ones.

You take care, speak soon

Jo x

User

Posted 30 May 2015 at 06:44

Hi everyone and thanks again for all your comments.

Dad is finally out of hospital and back home. I spoke to him twice yesterday, once at the hospital and again when he got home. He sounded so much better the 2nd time as understandably so, he says he has had enough of hospitals over the last few weeks.

He mentioned his appointment with the consultant on Monday so I took the opportunity to see what HE thought it was for. I now think that mum was right and he is completely unaware. He thinks the worst they can say is that they may suspend the chemo for another week or so, I really don't think it has occurred to him that they may stop it altogether. Maybe I am trying to somehow, prepare myself for the worst news as they are now saying that the tumour in his hip has got worse and keeps touching a nerve which is why he has the pain. I can't think that the chemo is working if that has started happening. Now I can't decide whether to say to mum, if that's the news he may hear, isn't it better that he hears it from her rather than a doctor, but will they say that, or even if they do, will he take it in, and if he doesn't take it in, is that the best option anyway??????

Lyn - the situation you mentioned regarding your mum sounded dreadful, I thought hospice staff were supposed to make things better not worse. It would appear, the more mum tells me, that the hospice dr she has seen and spoken to has also made things worse. He pointed out to her in graphic detail how much dad would suffer over the coming weeks/months. How is that supposed to have made things better?? I love my dad so much and I always thought the worst thing would be to not have him here anymore, but the thought of him, as the hospice doctor put it, being in pain as it slowly attacks all his bones until his rib cage collapses is just to much to bear.

Jo - I know exactly how you are feeling and I agree that maybe we do become more sensitive to the odd comment, especially 'enjoy the good days'. Like you say if they can control the pain etc then there would be a few more good days.

Sorry for my ramblings but I am just typing as I am thinking and when you've got so many different thoughts going round in your head, it's difficult to get it down fast enough, so I'm sorry if it's turned out as gibberish.

Rachel

User

Posted 30 May 2015 at 06:59

Rachel

Hi I am so sorry I have not posted earlier but I have been away amd had no Internet access fir the last few days.

This is one of the hardest times in this horrid disease you are really unable to do any more than be there to fight your Dad's corner if you or your Mum need to. You are one very special daughter.

The legal position on the DNR is specific however in my experience there is usually someone in the Macmillan team or at the hospice who can help you deal with these matters if they feel the time is right. Palliative care consultants are really good at assessing just how critical your dad's health is. They will tell you if you ask them and they will include your Mum and Dad in all those difficult conversations.

In my Husbands case all of this made him feel more in control of his treatment and destiny. I have posted a thread about this which is called elephants and their part in a dignified death.

It is the account of Mick's transition from palliative to end of life care and decisions he chose to make along the way.. Not an easy read though.

The pain and weakness in Dad's limbs could be due to many things but I would mention Spinal cord compression to see if this has been checked for in the tests.

I am so very sorry for all you are going through, my thoughts are with you and I wish you all the very best.

User

Posted 30 May 2015 at 08:50

Hi Rachel,

Like some of the others I think that your Dad understands the situation and he is protecting you and your Mum and also himself maybe this is his way of coping . Some times the truth is so very hard to deal with and we choose coping mechanisms that enable us to get through each day. I understand why you want to tell him before a Dr does, you love him and want to protect him the thing you haven't factored in is he is your Dad and parents will do anything to protect you. If he truly doesn't understand , would it help for you to tell him ? . His last remaining job is to make things as easy as possible for you and your Mum. The spin of is he can hold on to that last little bit of hope.

Thinking of you. X

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 30 May 2015 at 09:44

I am afraid that this is a steep learning curve for you; losing someone you love is not the worst thing. The worst thing is seeing them suffer first. The idea that a cancer death can always be pain-free is a myth .... some people slip gently into the final stages and then are carried away from us on a sigh but sadly, for others it can be weeks or months of battling with pain meds to try to get the balance right. I don't know what the context was of the conversation the doctor had with your mum but maybe he was trying to help her understand that it will become harder to keep your dad pain-free but still alert? A lose-lose situation sometimes - enough meds to dull the pain results in the person being zonked out most of the time; reduce the meds so that the person is bright & sharp and sadly the pain will be there. The benefit of the hospice and palliative care staff is that they are usually fantastic at getting the pain meds right, often far better than the hospital or GP.

It is your call but personally, I wouldn't be encouraging your mum to forewarn dad - much better to let the doctor on Monday say whatever they are going to say in the style they believe best. I think sometimes we forget (often because of other people's horror stories or the cases that go wrong) that these people choose to work in this area, are well-trained, experienced and compassionate. I don't believe that any medical professional sets out to hurt or harm or be cruel.

Could you attend the appointment on Monday with them?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 30 May 2015 at 11:02

You are so right, Lyn ! I was listening to a late night phone in and there was a palliative care consultant absolutely fixed on the idea that there is always an answer to pain control, oblivious to the people calling in who said this was just not always the case !

Rachel. I send my thoughts at what is such a difficult time for you and your family. Glad people on the forum have rallied round, as they always to, to offer such good and honest advice.

Fiona x

User

Posted 30 May 2015 at 17:30

Hi again everyone

The more I think about it, the more I realise that you are all right and that if either Dad is oblivious or just coping in the only way he knows how, then I wouldn't want to change that for him. He is still staying really positive despite all his problems. I now hope that if he isn't aware of what lies ahead, then he still wont after seeing the doctor, I wouldn't like to think of him getting a terrible shock on Monday.

Lyn - unfortunately I'm not able to attend the appointment with him as he lives in Kent and I live in Gloucestershire. I need to stay home with my kids, especially my daughter, as she is currently doing her GCSEs and I am trying not to give her anything else to worry about, although I do feel very torn. We are all having a family get together on Father's Day weekend though which will be lovely, but probably very emotional.

Mo - THank you for your kind comments. I would like to read the thread you mention but am not sure how to go about finding it. Can you or someone point me in the right direction.

Spoke to my mum twice today. She said he slept great (back in his own bed!!) but has spent the day in pain again with swollen leg. They really don't seem to be able to control it. They have arranged to see the hospice doctor again on Tuesday, the day after seeing the Consultant with the plan for him to help them through any news they receive. Hopefully some proper plan will be put in place to help with the pain at that time.

Rachel

User

Posted 30 May 2015 at 17:39

Hi Rachel

This is the thread.

http://community.prostatecanceruk.org/posts/t10538-Elephants-and-their-part-in-a-dignified-death#post126694

Paul

Edited by member 30 May 2015 at 17:40 | Reason: Not specified

Stay Calm And Carry On.

User

Posted 30 May 2015 at 17:52

Hi Rachel,

I have just picked up on your post about your Dad having had the stroke (sorry I am a bit slow sometimes) . If he truly doesn't understand the severity of his illness then my gosh what a wonderful place to be. My advice would still be the same where ever he is in his own head for what ever the reason that is where he is most peacefull.

Thinking of you X

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

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