Just an outpouring

User

Posted 11 Jul 2014 at 11:35

I've been reading the posts on this forum for quite some time but haven't posted before. I feel the need to post now, I'm sorry if it turns out to be long and rambling, I'll try to be as concise as I can.

My wonderful Dad, who is only 63, was diagnosed with prostate cancer last August. Unbeknown to us, he had been suffering symptoms for more than a year and had been visiting the GP about it. I'm not sure why it went on so long, but by the time he was finally referred by the GP he had become incontinent of urine. As soon as he was seen by a consultant he was admitted to hospital as an emergency to be catheterised. He has had the catheter ever since. At the time I was furious - with my Dad for not telling us what he had been going through, and mostly with the GP for letting him get to that point. But now, knowing my Dad, and how he minimises things, tells people he's ok when he's clearly not, I'm not sure if the GP really knew what was going on. And it's all academic now.

So he was then diagnosed, gleason 9, and we hoped it wouldn't have spread. But scans then showed spread to the pelvis and he started hormone treatment (degarelix). We hoped this would give him a good few years. At his first review, there was positive news, his PSA level had come right down, everything seemed good. Then a couple of months after he was diagnosed he began to experience excruciating back pain. It went on for weeks and no one seemed to want to do anything other than throw painkillers at him. He was in agony, couldn't stand up straight, could only walk a few paces. At this time he hadn't been referred to Macmillan, we just had a contact number for the hospital cancer nurse, but it always went to answerphone, and his GP just sent him for an xray which showed nothing. Eventually after searching the internet in desperation I found information on metastatic spinal cord compression. I was out of my mind with worry as the symptoms sounded the same. I felt terrible worrying my Dad but I printed the info and showed it to him. He agreed it sounded like what he was experiencing. He wouldn't let me take him to A&E or call an ambulance, as he didn't want to make a fuss. So I called the out of hours GP (it was late) and told them I was concerned it was MSSC. He did a little laugh and said in a condescending tone "with respect, I'll be the judge of that". He came out, tested my Dad's reflexes and said it wasn't MSSC. Dad saw the GP again over the next week who agreed it wasn't MSSC. I felt dreadful for having worried my Dad for nothing. But the pain went on. In total my Dad was in this pain for six weeks, until finally the consultant agreed to send him for an MRI. It turned out my worries were right, he did have MSSC. He was immediately given emergency radiotherapy which finished on Christmas Eve. They said he was luck that he hadn't been left paralysed. I felt I had let him down by not trusting my instincts, I should have insisted on calling on ambulance, I should have done something more. But it's hard when medical professionals are telling you you are wrong.

The radiotherapy gave him instant relief which was wonderful. The stress of it all had taken it's toll on me by this time, and I had to have some time off work. It took a while but eventually Dad was able to enjoy life again, he could walk, drive, get out and about and was managing really well with just co-codamol and a patch for his back pain. The consultant wanted him to just continue on the same treatment with PSA monitoring but I challenged this. I didn't see how they could rely on the PSA when the cancer had spread to his spine whilst his PSA had been coming down. I also wasn't happy with him just having the same treatment for the same reason. The consultant checked his notes again and said "oh yes you're right to be concerned" - this is how it has been all along, I have to question and challenge things to try to get my Dad what he needs. My Dad is too polite and assumes doctors know what they are doing. So they added another drug for total androgen blockade and said they would monitor by doing further scans if he developed any new symptoms.

He was reviewed in April and the consultant was happy that his PSA had come down further so the treatment was working. But Dad wasn't feeling too great so again I questioned how could they be sure the PSA was a reliable indicator. After some pushing from me the consultant agreed to send him for scans. We went to get the results and they said the good news was that the cancer in the bones seemed stable, but the bad news, there was a nodule on his lung. They couldn't tell if it was from the prostate cancer or a primary lung cancer. He would have to have a biopsy. This was the first time I have seen my Dad cry through all of this.

The biopsy appointment was made but then Dad started to get excruciating back pain again. After the previous experience I kept insisting it could be MSSC, but again the doctors were dismissive, putting it down to bone pain and the Macmillan nurse was just prescribing more and more painkillers. In the middle of this, Dad had to have the lung biopsy, needing morphine to get him through it. A couple of days later he was in so much pain I called an ambulance and he was admitted to hospital. An MRI scan confirmed it was MSSC again. He could only have one dose of radiotherapy this time as it was very close to the previous tumour. So he had the radiotherapy but it didn't give him relief like last time, they said it can take time, so they kept him in to try to get his pain under control. The consultant visited him on the ward to give him the biopsy results - he has primary lung cancer, and now they weren't sure whether the spinal tumours were from the prostate cancer or the lung cancer. They would see him again in outpatients when he was feeling better to discuss treatment options.

That was five weeks ago and Dad is still in hospital. They kept telling us they were waiting for the radiotherapy to work and trying to get his pain under control so he could go home and we could look at treatment options. Two weeks ago he was transferred to a more local community hospital still with a view to getting "better" and going home. Dad has been trying to do as much as he can for himself, even when it's causing him pain, determined to improve and get home, and get the treatment he needs. I couldn't understand why he had to wait to see the oncologist in outpatients, but finally yesterday, we went by transport ambulance to his outpatients appointment which was at another hospital. It was physically difficult for Dad as he is still in a lot of pain from the nerve damage caused by the MSSC. I think I half knew that Dad wasn't well enough to have chemotherapy, but it is amazing how every fibre of your being continues to clutch on to hope, even against all logic. But yesterday, the oncologist told us there are no more treatment options for him. They are continuing with his hormone treatment for the prostate cancer, but there is nothing they can do for the lung cancer. They still don't know if it's the prostate or lung cancer in his bones, but they said there's no point doing a bone biopsy because they can't treat the lung cancer anyway. Dad said but what if I can get myself better - I think he is still hoping.

I didn't really question what was said yesterday, there didn't seem anything left to say. But today I have woken up questioning myself, questioning everything. Why didn't they spot the lung cancer when he was first diagnosed with prostate cancer? At that time, before the MSSC, he would have been fit enough for chemo. Why aren't they bothering to find out now if it's the lung cancer or prostate cancer in his bones and spine? If it turned out to be the prostate cancer, maybe he could have abiraterone or enzalutamide to try to slow it? Or am I just clutching for hope?

It's just that all along, despite everything that has happened, everything we have been through, I have found it impossible to believe that it won't somehow be ok.

User

Posted 11 Jul 2014 at 12:57

That must have been a difficult post. Thank you for sharing this awful journey with us and welcome to the forum where people do not want to be! It feels you have had some poor advice along the way and I can understand the frustration. I am 62, gleeson 9 and with Bone mets but am doing ok for now on HT which just goes to show PCa works so individually with people. To get a second cancer is truly poor luck and I feel for you and your Dad. I wonder whether you could get a referral to a second oncologist to confirm the diagnoses and to have a fresh look at treatment options. Lung cancer, if it is confirmed as that, is going to be the main worry as it progresses much quicker than PCa. But I am just a layperson so please consider a second opinion.

Keep talking to us here there is a wealth of advice here, certainly with regard to PCa and I am sure you are right if it was just PCa there would be options if chemo was not on. I suspect its the lung cancer which has changed the outlook.

User

Posted 11 Jul 2014 at 13:23

Your Dad has a wonderful supporter in you. I agree with Yorkhull -ask for a second opinion. Sometimes we have to accept no treatment is best.

User

Posted 11 Jul 2014 at 13:27

Hi Snuggles,

You and your family have certainly been on a long and rocky road, my heart goes out to you. This is a very cruel disease and especially as you now have the lung cancer to also deal with.

There are couple of members on here who may be able to give you some guidance, TG-Top Gun his has spread to his lungs and it maybe helpful for you to read his thread.

Mo's husband Mick also had Spinal cord compression and I am sure she will come along to give you any advice that she can.

It might help you to contact the PCUK Nurses , also the palliative care nurses are a tremendous help. It maybe better if your Dad was in a hospice . TG is there at the moment getting his pain management under control.

It sounds to me as if you have nothing to reproach yourself for and have been a loving and caring daughter, it is human nature to question ourselves and ask the what if question.

Stay as strong as you can. This forum is very helpful in sometimes just being able to voice your thoughts and worries.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 11 Jul 2014 at 13:32

Snuggles, I cannot advise you but just offer my support.

My sister recently had similar with her husband and just kept coming up against a brick wall.

Everyone saying they wanted to help but doing faff all about it. She pushed and pushed and got herself a reputation as a controlling wife.

But - she was right all along.

I do appreciate how you must be feeling. Look after yourself though, because your dad needs you to be the strong one.

Keep pushing the doctors, ask for second opinions, make yourself a nuisance until you get a definitive answer.

If indeed there is nothing more to be done for your dad, then pain control, maybe under the auspices of a hospice, would give you all time to come to terms with the future.

Best wishes. Please keep coming on here for advice and support. There are many helpful, knowledgeable people on here

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

User

Posted 11 Jul 2014 at 17:22

Hi Snuggles, I have to confess that reading about your dad I've had a little cry. I have no advice as such to offer but just wanted to say what a wonderful supporter he has in you.

Jane x

User

Posted 11 Jul 2014 at 17:46

Hi Snuggles.

First my heart absolutely goes out to you. Your story has some similarity with ours, my thread is 'Scans, not good news '. Similarly PSA bore no resemblance to what the disease was doing and I still feel angry with our original onco who just blithely interpreted low PSA as ok when it wasn't.

I tell everyone not to be complacent with this disease, every man is so different, some cancers respond well to hormone treatment, others dont and with a G10 and spread at diagnosis, looking back I would a have wanted a far better monitoring and less reliance of PSA in favour of other indicators. It helped to have a second opinion as our second onco was far more on the ball. Some men who are very unwell still have chemo, the dose can be graduated. We were told there is now research which I found on the internet suggesting men whose disease is advanced at diagnosis have better survival rates than if treated only with HT. As I say, it's a bit worrying when lay people sometimes seem more aware of these things than professionals !

Certainly chase up enzalutamide and abiraterone if you are up to it, I found a fair amount of assertiveness and pestering on my part has helped but it shouldnt be that way. The other thing is getting professionals to have a proper, informed discussion with you and your Dad about options so you can make informed choices.

Take strength in the fact you are not alone, there are plenty of us battling away on a loved one's behalf, you have given wonderful support and I know how wearing and sometimes despairing the whole thing can be when you feel you are hitting your head against a brick wall !

Do keep posting, people are wonderful here and at least it helps that your concerns will be heard and understood.

Regards, Fiona.

User

Posted 11 Jul 2014 at 18:03

Thank you all for taking the time to read and reply, it means a lot.

We discovered yesterday that there are no hospices in our area. It seems the only options for my Dad are to go home with carers coming in a few times a day or to go into a residential care home (both of which he would probably have to pay for). Both the oncologist and hospital staff think the former is unsafe, as my dad keeps getting confused, but I know my Dad won't want to go into a home, and I wouldn't want that for him either. Dad lives by himself and there are three of us daughters living nearby but we all work, and my sisters have young children. I would give up my job tmw to look after Dad if only I could, but it's just not an option with a mortgage to pay.

Somehow we will manage, but it all seems so wrong.

User

Posted 12 Jul 2014 at 13:38

Snuggles, my heart goes out to you and your family.

The road your Dad has been down is sadly all too common, many medical staff talk about cord compression and there are leaflets all over the place about it, regrettably some do not walk the talk. The signs of Spinal cord compression are very easy to confuse with tumour flare, the disease itself and the treatments given. The fact you pushed so hard has probably kept your Dad on his feet the second one occurring so close to the first is not common but it does happen.

In cases where the disease is advanced (and in your Dad's case it is coming at him form two angles ) means that the risk of second or even third cord compression is quite high. I would be inclined to agree with the medics being at home with just social care is probably not the best option. If you can get your Dad referred to any hospice even if it is a distance away they may be able to get a much more comprehensive care package for him. In our County which is huge there are only two hospices with about 20 beds for in patients but they do run a county wide service called Hospice at home.

If your Dad is getting confused that could be due to the medication he is taking, opiate patches can do that, all the more reason he needs more specialised care.

Where is the nearest Hospice and do you have a dedicated Macmillan Nurse you can turn to? There has to be more that can be done to keep your Dad safe and properly cared for.

Please post again with a little more information on your wherabouts etc. so that we can try and come up with some ideas you can take forward.

Best wishes

User

Posted 19 Jul 2014 at 13:37

Hi Mo,
Thank you and apologies it's taken me so long to reply.

Things have progressed quite rapidly over the last week. Someone from social services came to assess what help Dad would need at home, but she agreed with us that it's clearly not appropriate at the moment - his pain is not well controlled (he is in agony at times) and at that point no one had made any assessment of what Dad was actually able to do for himself.

The Macmillan nurse had been on holiday for the last few weeks but thankfully she has finally visited Dad in the community hospital and I feel a bit more hopeful now that she is back in the picture. She tried changing his meds to get better pain control, but unfortunately this didn't work and for now he's reverted back to his previous meds. But at least it means that whilst they are in the process of trying to get his meds right, there is no pressure for him to leave the community hospital.

Over the last week Dad has also begun to lose the use of his legs. He was previously able to walk quite well with a walking frame, but his legs have started to go numb and he can't control them anymore. Dad seemed to think that it was lack of exercise which was causing his legs to be weak, and he kept talking about getting stronger again once he had physiotherapy. We couldn't bring ourselves to be the ones to take his hope away. Finally the Macmillan nurse and physios spoke to him and explained that his legs weren't working due to the tumours pressing on his spinal cord and that there is nothing that can be done to improve it. Dad says this hasn't really sunk in for him yet, I actually think that he's on so much morphine he can't properly process stuff like this, which is perhaps a blessing. The thing that has upset him more than anything is that he can no longer manage toileting by himself. Previously the staff helped him to the toilet and back, but left him to manage himself. He told me he has had to "give up" and let the staff help him clean himself up afterwards. My Dad is a very proud, independent, capable man, and this has been horrendous for him, but I am relieved that he has managed to accept this help.

Since the Macmillan nurse came back and since this deterioration, no one has mentioned Dad being discharged from the community hospital. We don't want to bring it up ourselves as we don't want to set things in motion - Dad is happy where he is and the longer he can stay there the better. Once the question does arise, I will be asking about NHS continuing healthcare (which no one has mentioned to us) - surely my Dad's situation would qualify for this. I just can't believe that with a deteriorating condition, loss of mobility, confusion, an ever increasing need for pain relief, and a prognosis of a few months, he would be expected to pay for social care or for a residential care home, which would surely be inadequate to meet his needs.

We are in North Yorkshire, and although there are no hospices in this county there is one in Darlington which is not far from us. However, we've been told that this is just for end of life and Dad isn't at that stage (I'm not sure how that is defined or identified). The community hospital where Dad is at the moment has a number of "medical" beds and a number of palliative care beds. At the moment Dad is in a medical bed, and although his oncologist said he should stay where he is, the ward sister said last week that he can't stay in a medical bed long term, and he's not at the stage of qualifying for a palliative bed, but they will take him back when he is. Despite this, we will be doing everything we can to try to keep him there, he really likes it (as much as you could in this situation), and it seems barbaric to try to ship him off somewhere else for a few weeks, where he will have to get used to and accept different carers, only to move him back again once his condition deteriorates even further.

All this is still sinking in for me, only weeks ago Dad was totally independent and fully mobile, living at home by himself having recovered very well from the first cord compression. Stupidly, when this happened again, I thought it would be the same, that he would have radiotherapy and be ok again for a while. I never imagined when I called the ambulance that he might never go home again. I veer from feeling deeply depressed to being filled with rage, and I feel guilty if I "forget" for a moment and laugh at something on TV. I've been signed off from work again as it's just too much to cope with. I don't know how anyone is expected to just continue with normal life as this horror unfolds.

User

Posted 19 Jul 2014 at 13:39

Sorry about the way that post has come out, I did use paragraphs but they've disappeared. This forum is not very user friendly.

User

Posted 19 Jul 2014 at 15:42

Thank goodness your Dad is getting some appropriate help. There are many of us who know what it is like to have to fight to get help for a loved one, it just shouldn't be that way, no wonder you are beyond exhausted. If you get pressure for Dad to go home and this isn't safe I would refuse to have him back, awful as this seems, sometimes it is the only way to get through, I have been near to that with my partner on more than one occasion ! Sending regards and thoughts, Fiona.

User

Posted 19 Jul 2014 at 16:16

Dear Snuggles

I have been away from the forum for a while and only just saw this. I read your story a couple of times and am filled with sorrow and horror. I only wish you had had the proper support along the way, it helps so much to trust the people looking after you and yours.

I cannot understand how someone can say to you that dad is at the end of the treatment line and yet he does not require palliative care yet. What the heck is the point of palliative care if someone as Ill as your dad can't get it?

At the moment, your dad is in a safe place and is being cared for and that at least, is some comfort.

I wish that your medical team would talk to you more about the situation and make things clearer for you. It seems that they have decided that it would be worse putting your dad through further treatment and sometimes that is the right decision.

In truth, I am at a loss to know what to say. My heart goes out to you and your dad.

Anyway I just wanted to let you know that people here are thinking of you.

With love

Allison xx

User

Posted 19 Jul 2014 at 16:51

People have already given good support and answers. I just wanted to help explain the issue raised about your dad paying.

Your dad has a right to an assessment by the CCG (health commissioners). This would help to determine what his health needs are and whether they are at a stage that would make him eligible for health funding for any support services eg care home or support at home. At the moment his needs are being met by primary services (hospital). However you mention he has a prognosis of a few months. If this is the case he would be eligible for fully funded healthcare as part of the end of life care pathway (last 12 weeks of life )

It may be worthwhile contacting NYC social services as a starting point. They will be fully aware of his rights. Failing that contact MacMillan who will also offer advice

Take care

Bri

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