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User

Posted 27 May 2015 at 19:42

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 05:39

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 10:43

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 21:45

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 22:20

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 23:49

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 14:06

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 14:35

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 18:38

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 19:05

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 19:07

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 23:49

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 07:44

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 07:59

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 09:50

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 10:44

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 12:02

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 18:30

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 18:39

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 18:40 | Reason: Not specified

Stay Calm And Carry On.

User

Posted 30 May 2015 at 18:52

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

User

Posted 30 May 2015 at 18:56

Paul

thanks for linking that for Rachel to find that was really kind of you as I probably woud have taken ages to work out how!

Rachel I will just say that this really was Mick's way of coping and then I just made sure I followed his wishes. Yor Dad may have a completely different outlook see what Janet replied on my thread, her husband dealt with it completely differently as did Fiona'S partner Neil. If you need to chat you can always PM me I usually sign in every day at some point, trying to help others is really my way of coping too.

Possibly some really tough times ahead Rachel so make sure you look after yourself and your Mum too.

I will be thinking of you

User

Posted 01 Jun 2015 at 17:45

Well confusion would be a complete understatement!!

I spoke to my mum yesterday who said that Dad was having a really bad day. He had just about managed to stagger from his bed to the sofa and then had not moved. He slept all day due to having lots of painkillers because of the continued pains in his leg. She also dropped into conversation that we was finally discharged from hospital last Friday, he was given some paperwork to take with him. Included in the paperwork was some type of scan report from his recent CT. It stated that the disease had significantly progressed, so were of course, expecting the worst at his appointment with his Onco today. Mum was lined up with her list of questions, ready to ask if there is anything else in the treatment cupboard and if not what this will mean for him etc. She was dreading being told that he only had a certain amount of time left.

However, I had a quick call from her as they were coming out of the hospital today saying that everything is positive and that the consultant wants him to carry on with the chemo and that they will do another CT scan in August. Obviously, this is just the most amazing news and as soon as I came off the phone from mum, I just burst into happy, relieved tears.

Since calming down a little, I have begun to wonder what is going on. If the cancer is getting worse then why are they continuing with the chemo. Does that mean it's helping some mets and not others?? Still no firm explanation about the pains in his leg though, just something he has to put up with by the sounds of it. The last guess was that a tumour was touching a nerve. As I said, yesterday was a terrible day for him and today was the complete opposite, walking around, eating normally etc.

In conclusion, I can only imagine that this is extremely good news, albeit very unexpected.

Rachel

ps - Thanks to Mo & Paul for pointing me in the right direction regarding the Elephants, it was very informative and incredibly emotional. Thank you so much for sharing your very heartfelt feelings.

User

Posted 01 Jun 2015 at 19:38

Rachel - no problem. Glad to help.

I cannot comment on your dad, as I have no experience in that field, but what sounded awful this morning sounds more uplifting now. Look after yourself.

Paul

Stay Calm And Carry On.

User

Posted 01 Jun 2015 at 19:50

Up lifting news Rachel, what ever is happening has made you feel good. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 01 Jun 2015 at 20:56

Rachel

if the Oncologist thinks the chemo is at least slowing things down and if your Dad is well enough to keep on with it then that is good. A lot of the decisions now are about balancing treatment with quality of life . I would still be asking about pain medication, has your Dad been prescribed something called Lyrica or one of the pain killers that work on suppressing nerve pain? the Macmillan nurse should know about this. If it is nerve compression then Lyrica should help with that.

Keep all the information to hand on Spinal cord compression too, if your Dad shows any signs of that then follow the guidance in the leaflet you should have been given for chemo. in the traffic light scheme of things any symptom of this should be checked out immediately.

I am not wanting to be alarmist or to frighten you at all but I would feel terrible if you did not know what to look out for as an SCC can be very serious if not treated quickly.

most common symptoms...

severe leg or back pain

weakness in limbs or legs giving way

inability to urinate

inability to defacate

raised temperature or fever

difficulty swallowing

there are others but these are the most common. It usually starts with one and then other symptoms follow sometimes quite quickly afterwards.

thinking of you

best wishes to you all

User

Posted 02 Jun 2015 at 18:52

And so the confusion continues!

Such a good day yesterday for dad. He was up, walking around (with only 1 stick) and really happy in himself, obviously helped along by the good news that the chemo was going to continue.

However, today was a different day again. He couldn't even get out of bed. It was too painful to sit up and took a good 10-15 mins for my mum to help him to the bathroom for the toilet. He has a lot of swelling from his hip down to his toes in his right leg and apparently a mass in his right buttock.

The hospice doctor went to see them today, had a good look at him, (which was more than the Onco did yesterday) and said that he thought Dad had an infection. Mum was packed off to collect the antibiotics and they were told that if he is not better by tomorrow, then they should contact him again, so we shall wait and see what tomorrow brings.

User

Posted 03 Jun 2015 at 10:59

Rachel

I hope the antibiotics are kicking in and that you all have a better day today.

Do post and let us know how your Dad is soon.

User

Posted 04 Jun 2015 at 13:57

Hi again everyone

Dad has now been on the antibiotics for a couple of days and as yet, no change at all with how he is feeling. Mum has rung the hospice again today to see about getting a bed for him for a few days in order that they can hopefully get his pain under control. Unfortunately, there are no beds available, they are going to review his case in the morning and contact mum again, so we will wait and see. There's a lot of waiting and seeing on these journeys aren't there!!

Rachel

User

Posted 04 Jun 2015 at 19:32

Rachel

Don't give up hope that the anti biotics are not working, they may need some reinforcing with a second one. If there is no bed available at the hospice today things can change quite quickly, lots of patients only come in for short term help just like your Dad. Also sometimes it is a question of how many gents vs ladies are bring cared for if it has small wards rather than individual rooms.

Do they have hospice at home provision as that might give another option to have the pain management specialist or palliative care consultant come to visit.?

Yes there is always a lot of waiting for just about everything it can be frustrating.

Thinking of you all

User

Posted 04 Jun 2015 at 22:08

Rachel

Mo is right, the antibiotics could be working, maybe it takes a little longer when one is already poorly. I sincerely hope the hospice can accommodate dad and I'm sure they will do their very best. It's very good to hear that the hospice doctor came out, that's better than the GP for this situation.

Thinking of you.

Lots of love

Allison xx

User

Posted 05 Jun 2015 at 10:19

Thanks again everyone for your kind and supportive words, they are very much appreciated.

Spoke to mum this morning, she has managed to get Dad into the hospice later today so they can help with his pain relief. I would like a little information from anyone that has been in this situation as I don't really know what I should be hoping for. Is it different medication they give him in the hospice that he can't have at home and if this is the case, does it mean that when he comes out of the hospice, he will be back in pain again? Or is it a case, that they give him something that he can continue with at home? Is it also something that maybe they can give him that can get him back on his feet again or is the only way to dull the pain, to make him sleepy?

Or am I just being very naïve about the whole thing??

Any information or advice would be very much appreciated.

Thank you

Rachel

User

Posted 05 Jun 2015 at 10:55

No I don't think you are being naive but I do think that you might find it helpful to talk to the staff at the hospice and get an understanding of what is in store.

The hospice staff will try not necessarily different meds to the GP, but will mess around with the combinations to find the best balance between pain control and zonkedness. Once they get the best balance, the patient would usually come home with a prescription or with a care plan for nurses to administer it at home, etc. It is not always possible to eradicate the pain completely - sometimes the hospice stay will only be for 3 or 4 days and a med that hasn't been tried before does the trick nicely.

This time at the hospice is important for you and mum as well - there will be a social worker or counsellor that can help with the emotional side of this stage that you are going in to, and if you haven't already done so, this is the right time to talk to an adviser there about any financial support that your parents may be entitled to now.

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

User

Posted 05 Jun 2015 at 13:27

Rachel

To add to Lyn's really helpful post, I have never heard of a legally prescribed pain medication that cannot be given or taken at home.

The hospice may try new drugs like fentanyl which can be given via a patch that lasts for a few days it is often better tolerated than morphine. There are drugs like Lyrica which work for nerve or spasmodic pain there are so many different ones fir different needs the list is endless and they can be given in combination too. If a syringe driver is needed this can be set up and even they can be used at home they are replenished and monitored by hospice at home or a similar provider. As Lyn has said getting the balance right usually takes a couple of days sometimes a little longer.

Try and take full advantage of the professional help that is available there for all of you. I know the palliative care consultants at the hospice I volunteer at are fabulous they make time for everyone who needs their help and support. Indeed all the nurses and support staff do too.

There may be things the occupational health specialist there can suggest to make your Dad much more comfortable at home.

There might be a physio who can work with Dad to get him more mobile or to see if he needs special pillows to elevate his bad leg.

Most hospices take pride in the food they serve and often they will make things for you at a very reasonable price if you want to have a meal with your Dad. It also means less work for you or your Mum.

Most important of all you and your Mum need some "you" time so try and take advantage of the full time care Dad will have in the coming days.

Thinking of you and sending hugs

User

Posted 07 Jun 2015 at 13:37

Dad was admitted into the hospice on Friday afternoon and was spoken to a lovely doctor and a couple of nurses that were very kind to him and made him feel comfortable about being there.

They upped his pain relief and he spent most of the day sleeping. Unfortunately at the times I was awake , he was still in a lot of pain. So much so, that another doctor has decided that he needs to have further investigations on the cause of his pain. They mentioned that they plan for him to have some more scans and xrays. Obviously I hope they find the cause of the pain so that they can deal with it, but it is annoying that he has been in so much pain for so long before they have actually decided to do something, something that the hospital has failed to do as yet!! He was very unwell yesterday and it took 2 nurses to get him out of bed to get to the bathroom.

It's very confusing as to why some days the pain is unbearable and painkillers don't touch it and other days he can be relatively comfortable and walking about. There was mention of a possible fracture to his hip bone but I would like to think that this is not the case, the fact that he has been left so long but we shall have to wait and see when the scans and xrays and done.

Mum planned to go over and have Sunday lunch with him today so she was hoping to hear that he was feeling better. At last, some good news, he phoned her to ask her to bring his sun hat over so that they could have their lunch out in the garden. When she phoned me to tell me that, I put the phone down and burst into tears, but happy tears this time!! So glad that he still having some good days :-)

User

Posted 07 Jun 2015 at 15:59

I'm picturing him and mum sitting in the sunshine right now, fingers crossed he remains comfortable today's and they get to the bottom of the cause of the pain.

Lots of love

Allison xx

User

Posted 11 Jun 2015 at 19:33

Good news at last. The hospice have been brilliant. Not only have they got his pain pretty much under control as he is today having his 5th good day in a row, but they have also arranged for him to spend the day in hospital today having a huge cyst drained. This is now the reason for them thinking that his leg has been so swollen and painful. He his back in the hospice tonight with a drain still in, so let's hope this is what the problem has been all along and that he will feel much better soon.

Thank you everyone that has commented on this thread. You have all really helped me through some very tough times. I am now starting to feel more positive and am so relieved that dad is not in too much pain now. Hopefully they might start talking about him going back home soon.

Rachel

User

Posted 11 Jun 2015 at 19:45

So pleased to see your update Rachel - I hope he is home soon

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

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Posted 11 Jun 2015 at 23:06

This is so much better news that I had expected, I'm thrilled to bits to read it. I'm so glad someone has taken the effort to really look at what's going on. Hugs to you and your family, it has been a tough old time for you all.

Lots of love

Allison

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Posted 11 Jun 2015 at 23:12

Rachel big hugs and happy smiles I am so pleased your dad's first stay at the hospice has helped so much.

I hope you get him home real soon.

Xxx

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Posted 14 Jul 2015 at 16:32

Hi again.

I haven't been on for a while but am extremely pleased to say that since I was last on, the day that Dad had the cyst in his hip drained, he has made a full recovery. Within a couple of days of having it drained, he was able to get out of bed and walk around (with supports). Since then he has gone from strength to strength and is now walking around completely unaided.

Myself, my family and my brother all went to visit him and mum for the weekend over Father's Day which was lovely. It was so great to see him back to being happy and relaxed again, not that he ever gave him being strong and positive.

He had a follow up appointment yesterday with the Hospice doctor who was also very pleased with him, although did tell him for showing off walking about unaided!! He has to keep using his stick in case of any falls. He just wanted to show the doctor what an amazing recovery he has made. It would appear that Dad was quite an unusual case and had an infection that they had not come across before. So very impressed with the hospice, not so much with the hospital though :-(

Anyway, as things stand, although it's now been a couple of months, he is off to the hospital again tomorrow for his bloods, in preparation for his next round of chemo, so fingers crossed.

As I said before on my last post, thank you to everyone that helped me get through those very difficult weeks, it was so very much appreciated.

Rachel

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Posted 14 Jul 2015 at 16:42

That's great news, Rachel. So pleased for you and Dad !

Fiona. x

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Posted 14 Jul 2015 at 19:45

Rachel it gave me a real lift just reading your post. I am so happy your Dad is up and about and even going to the hospital for his bloods and hopefully next round of chemo. It all sounded so very different a month ago for you.

I am also really pleased that your Dad's hospice team are working so well with him. He would do well to lsten up and use that stick for the time being even if it is just there in case of need. The last thing he would need now is to have a fall when he is doing so well.

You all really do deserve this turn of fortune long may it continue

User

Posted 14 Jul 2015 at 19:58

What a brilliant turn-around Rachel.

I am so pleased that your dad is able to get around again.

Long may it continue.

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

User

Posted 14 Jul 2015 at 22:00

I'm so glad I popped in tonight, what a turnaround, go Rachel's dad!

Very happy to read this post

Lots of love

Allison xx

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Posted 11 Aug 2015 at 15:38

Well it's been nearly a month since my last post. Dad continued to go from strength to strength after his hip infection. He has now just had his 2nd round of chemo since the couple of months break, so technically he has now had 5 lots. He has been suffering again from the extreme fatigue and it has been getting him down. During one of his tearful moments, he told mum that he has to keep on with the chemo or else he will die. It would appear from this comment, that he has known how serious things are, but has just been dealing with them in his own way.

Dad is due to have his next scan this coming Saturday. After his last scan, the consultant said he should carry on with chemo as the PSA levels had gone down but the spread had continued. This obviously meant that the chemo is obviously doing something, even if it's just slowing things down. For those that are aware of his story over the last couple of months, you will know that due to the infection, the chemo had to be stopped for quite a few weeks, so my concern, is that during this break, the cancer may have spread even more significantly and the PSA may have gone up too. Will his continued chemo have settled things down or is likely that it wont have been as effective now and the consultant may suggest stopping.

For a man who has substantial bone mets in his torso, he has been unbelievably lucky in that he has never suffered any pain as a result of it (only the nasty infection). The doctors are very surprised that he has not had pain, but then that's my dad for you, doing everything in his own way!!

Rachel

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Posted 11 Aug 2015 at 20:09

Glad to hear of dad's improvement Rachel but fully understand the nervousness around the forthcoming tests etc. I have learnt not to try to anticipate too much because I'm often wrong and give myself worry for no reason. Someone here once said "don't cross the anxiety bridge until you have to" I am trying hard to live by that rule though I can't say it's easy.

Lots of love

Allison

Edited by member 11 Aug 2015 at 20:10 | Reason: Not specified

User

Posted 11 Aug 2015 at 21:14

Rachel

whilst your Dad is tolerating the cheo OK and he is generally a lot better than he was a month ago, he is still clearly very poorly. The teraful moments are probably his way of showing that he knows he is fighting one heck of a battle.

The good news really is that he is relativey pain free and treatment is continuing.

We all liken this to a rollercoaster ride but sometimes I think that is unjust, they are at least to supposed to be fun for thrill seekers. I now think of it more like snakes and ladders, things are Ok when you are on or up a ladder but pretty rubbish when you are in with the snakes.

Stay strong Saturday is fast approaching so another scan and more relavent information. The PSA at this stage is probably just an indication of cancerous activity, the scan however will show any progression if there is any.

Thinking of you

User

Posted 17 Aug 2015 at 18:27

Thanks Allison and Mo. You have both likened this 'journey' perfectly. It is indeed like snakes and ladders and it is also true to not cross the anxiety bridge until you need to.

Dad had his scan on Saturday, however, looks like he has to wait about a month for the results so will certainly try not to cross that bridge for a while yet!!!

Rachel

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