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My step dad was diagnosed with prostate cancer which had already spread to his spine in March 2009. He was given the hormone injections, hormone tablets and a week's course of radiotherapy. The radiotherapy really helped and he was able to move around a lot more easily and even managed to tend his garden. Over the last few weeks, particularly since Christmas he has experienced quite a lot of pain, has found it more difficult to move around and consequently spends a lot of time in bed. He says he is in less pain whilst lying down. He rarely leaves the house and has said he will not drive any more because of the pain in his knees. He went for another bone scan a couple of weeks ago and says about four fifths of his skeleton now has cancer. The consultant told him his skeleton is very diseased but didn't comment when my step dad asked for a timescale on his time left. He is going for another bout of radiotherapy next week and will ask about different drugs as the current ones (hormone/painkillers), one of them is making him very sick. His appetite is almost nil and he vomits at night two or three times a week. My mum is distraught. She herself has a lung problem (copd) and is currently having investigations into her own severe pain which the gp thought may have been blocked arteries but it wasn't that and she is waiting to see a consultant as it may be a problem with her back/osteoporosis? I want to help them both through this very difficult time. Does anyone have any idea how long my stepdad is likely to benefit from this part of the treatment? I know we are all different and at the moment he is fairly cheerful, however, he has told my mum he's 'on his way out' which has really upset her. Is just being there enough; is there anything esle I can do?
Apologies for such a long message. Just writing it helped I think.
Thanks for reading this!
Sorry for my late reply. I only just noticed your message, I don't always come on this forum so if you ever want to, do add me as a friend if there is any way I can help.
Like your step dad, my dad also developed advanced prostate cancer that spread to his spine, this was the first time we knew his diagnosis. With my dad it caused spinal cord compression. Im glad that your step dad had radiotherapy that seems to have enabled him to move around still. If your step dad does develop different sensation or numbness in his legs (check symptoms in Macmillans page on metastatic spinal cord compression) do phone for medical help straightaway as that would always need to be treated as an emergency. However, since he is being monitored hopefully this wouldnt happen and he will be on various drugs I imagine to try to control the cancer.
I cant say how much longer your step dad may benefit from his current treatment. It is so individual. The illness is unpredictable, one time my dad seemed to deteriorate but then he rallied and we had some extra time together. Even if you asked a doctor they may say they dont know for sure about your step dads prognosis. The best advice seems to be about taking it a day at a time. Does he have the involvement of a hospice palliative care team? I would recommend these type of professionals as the most skilled and sensitive. The hospice care was very good for my dad although he also had to live in a care home due to being paralysed by the spinal cord compression. But the hospice specialists know the best way to balance medication and side effects, and also control pain that arises. With your step dad spending time in bed this could be due to fatigue which is a common effect of cancer. If he isnt able to eat this could also mean he has much less energy, can he drink supplement drinks, my dad would drink ensure type nutritional drinks that are prescribed by a doctor. it is stressful for your mum when not in good health herself. is she having any help to look after your dad? I am sure that you are doing all you can and need support yourself so please look after you too.
See my previous post. Also you may want to phone the helpline of the Prostate Cancer Charity www.prostate-cancer.org.uk
They have specialist prostate cancer nurses you can phone up. Alternatively you can phone Macmillan.
Hope your step dad is getting attendance allowance (or disability living allowance depending on age) as a weekly benefit to reflect his health needs, this can be claimed under special rules for those who have a life limiting illness. The hospice often has a hospice at home team, otherwise social services can provide carers in conjuction with the primary care trust often (assuming you live in England) - depending on the level of care your step dad needs and how your mum feels she is able to manage.
It is difficult when our loved one talks about dying. It will be very individual how we respond or to what extent the person wishes to talk, though perhaps there are things such as practical matters he wishes to discuss. I hope that your mum can be supported in this. it seems best to allow for cues and be open to discussion, although I know its hard to face the future with uncertainty. Hopefully his treatment will work well and improve his quality of life and life expectancy. Is there a Macmillan or hospice nurse you can talk to and be helped by also, asking all the questions you need?
Thank you so much for replying to me and for your kind words and advice. I have read a few more forums and just want to say how sorry I am for your loss; it can't have been easy for you. And yet you are so ready to offer others help which cannot be easy when your own experience is not so long ago. This is only a short note as I have something to do but just wanted to respond. My step dad (he's been with my mum since I was 8 and I'm now 52, so not just a 'step' dad but very much more of a dad to me than my biological one). The lady from the Dept of Work and Pensions has been to see them today so the process of the allowances is underway. We live in the Chichester, West Sussex area. I am going to look into the Macmillan support, I collected some leaflets at the hospital yesterday and this nice man invited me in for a cup of tea but my stepdad was tired and wanted to get home. I find forums strange, how people can pour their hearts out to strangers but it is a tremendous support for people at very difficult times.
Thank you again!
Anytime - let me know if I can help always. I realise what a difficult place you are in and can understand your step dad being as good as your real dad too from what you describe.
I dont know if the DWP worker used the special rules grounds to get attendance allowance for your step dad, that would speed up his claim (it needs to be dealt with in 2 weeks then), but it needs a particular certificate from his doctor to say about prognosis (eg where the illness is classed as 'terminal'/life limiting). But even without those grounds hopefully it won't take too long, she would be an expert in this working for them.
It sounds like you went to a Macmillan information centre yesterday? Those can be very good, a place you can pick up leaflets as well as having a chat. I do hope though at some stage a hospice (if one is available there) can be involved (if your step dad would be happy with this). Hospices are wonderful and not only places where people spend the last few weeks of life, in fact they care for patients for much longer than this and in that time someone may go in for respite or for symptom management then come home again. They have chaplains, counselling, social workers, specialist palliative care nurses (including those who work in the community). The grounds were lovely to visit and walk around gardens. My dad had hand massage from aromatherapists and they were volunteers at the hospice. He also had relaxation with an OT (who came from the primary care trust/community services), It is possible to get a type of care package so your dad gets some care in the community, to deal with any symptoms and enhance his quality of life (and also help you as a family).
Forums can be strange but there is the relative anonymity which helps if saying things you dont want friends or family to see (I found my family was quite closed up and didnt want to discuss things in public).
I know that tiredness can be really debilitating having seen my dad feel tired (eg he didnt want visitors at times) yet still unable to sleep soundly at night. It is a horrible illness for a man to suffer from and you witness, but hopefully your step dad is still coping, as positive as he can be always.
Thank you for your reply. The lady from the DWP was with my mum and step dad for about 3 hours and said we should have contacted them sooner. I did when he was first diagnosed a year ago but we didn't feel comfortable about the claim at the time as he was still so fit and my mum's illness wasn't as bad as now. I feel guilty now that I didn't pursue it then but I can't change that and will have to be content they are getting the help now. She is an expert as she said she was taking on 2-3 cases a day! Yes I popped in the Macmillan room at the hospital when I took my step dad in to be marked up for radiotherapy. They were really nice and let me take some leaflets. It's day 2 out of 5 of the palliative radiotherapy; I saw him yesterday and apart from new pains in his leg he was quite cheerful and eating/watching tv. He's getting some visitors now which is good. He has mentioned to my mum about going into a hospice if it all got too much for her but she is so hopeful this bout of radiotherapy will give him some extra time so I don't talk about this to her at the moment. One of the most difficult things to accept is that my stepdad was such a fit and active man, he used to walk and cycle miles every day, and now he spends most of his time in bed to avoid pain. It's heartbreaking and I pray the pain won't get too bad for him.
Please dont regret not applying for benefits sooner - you cant change that now - and many people (especially older people) prefer not to claim, even though they have every right to. The important part as you say is that it should be paid out now and can help at this time. You could always talk to the Macmillan information centre about any care issues (while he is at home), I would have thought the hospice could visit him, eg their specialist palliative care nurses if a need arose, or refer to a day hospice or the hospice at home team. Some care packages can be funded through NHS continuing care in the community as well as in other settings too (you could ask the GP about this/social worker/community nurse). Macmillan can also award grants (means tested) for one off expenses to improve quality of life.
It is good that your step dad still engages with things and the tv, and his mood seems cheerful. With the radiotherapy that does have a use of reducing pain. I hope that he is on the right medication for him, I may have mentioned previously but sometimes (as I understand it though Im not medically trained) bone pain does not completely respond to morphine so other medication may be needed, paracetemol is often used. It sounds as though he is still eating which is another positive sign. I hope that the radiotherapy and any hormone therapy I would have thought he was on would mean he will be still fighting for some time yet. The way he can remain at home must also be a great comfort to him, fulfilling all his wishes.
I can understand the heartbreak. When my dad was ill, I kept using analogies like my heart being broken, breaking, or it being heartrending - so much that involved my heart as that was where I felt the pain of immense hurt and sadness, as well as the trauma.
I hope if he is in bed then he has a special mattress and can be turned without this increasing pain (so as not to develop pressure sores if not moving).
Take care of yourself too, thats all you can do, this is the journey your step dad is on, and you are of course closely involved, but your life also matters very much and you need to stay strong,
Yes you are right not to worry about initiating the benefits claim last year; I can't change that and they will now get the help.
He is now on day 4 out of 5 of the radiotherapy and seems to be taking it in his stride. He says he is tired and his legs hurt but the radiographer said that would be normal and to keep on taking paracetamol. He has been told that this will be the last bout of radiotherapy; they won't be able to do any more for him after this. He is so hopeful because the radiotherapy last year really helped him and for a while he was almost back to normal. He was talking yesterday of maybe driving his car again next week but he is realistic and knows this might not be possible. I've suggested we might get a wheelchair so we can take him out in the fresh air when the weather permits but he and my mum are resisting this sort of thing at the moment. I suggested we get a bed for downstairs as it's so difficult for him to get up and down the stairs when he has to but again it's on hold shall we say. I can only suggest these things and will wait for them to agree. As you say it's his journey and the rest of us can only be there to help when needed.
He was telling me all about the radiotherapy machinery etc. It all sounds very dramatic and a bit scary frankly, but he is very down to earth about it all. He told me that he had a word with a new patient waiting for radiotherapy, apparently the chap was a bit scared of what to expect, so I think my stepdad was a bit pleased he could explain some things and put the chap's mind at rest.
My mum is a bit brighter this week; she's not very fit herself, so we've all been visiting and helping out with chores etc.
Thank you so much for your messages. I haven't anyone else I can talk about these things to, who has personal experience of it. I mentioned to my mum about maybe having a cancer nurse visit and I think I will look into this.
Roz123, I remember when my dad had radiotherapy (although this was to treat spinal cord compression rather than any other reason as in your step dad's current treatment) and he did have constipation then diarrhoea as a result (I think a laxative was given for the first which proved overwhelming). But I cant remember he had many other ill effects unless the tiredness as you say. Its good that your step dad remains positive. I would have thought the reason they cant do more radiotherapy may be that they cant radiate the same area (or something like this in that they target one area at a time and dont return to the same). I hope he can get back to normal, even driving that would be such great news. But if he finds that the radiotherapy doesnt have exactly the same uplifting effect as last year I still hope it does him some good.
I think a wheelchair may be a good idea. You could put it to your parents that getting these equipment items takes some time to arrange and that ultimately they will help your step dad stay independent for longer. Any staff at the hospital may in time suggest a bed downstairs rather than your dad going up and down stairs, your step dad may even find this tiring. It may also need a special mattress (to prevent bedsores) and be a hospital adjustable style bed, I hope this doesnt seem discouraging, and see it as a means to an end of your dad being at home. An OT may be able to come round and assess the home seeing what adjustments can be made. It may be that your mum finds it difficult to talk about as finding it all so painful with your step dad not being well, it is still hard to come to terms with cancer. I think having a Macmillan nurse or the hospice involvement sooner rather than later may also be useful. You could tell your step dad about the nature of hospices so that they are there for everyone who has an illness that is no longer curable but for which quality of life can be improved, so he could start going to the day hospital if he so wished. The hospice would support your mum and you too so that may be reassuring to your step dad. A Macmillan nurse would also be good in talking to you, making sure symptoms are well managed, that the medication is working and any other concerns, even grant help.
That was lovely of your dad to reassure the new patient about radiotherapy. It is all high tech I know and important to stay still. My mum had womb cancer and went through radiotherapy in the past too.
I hope that your mum can accept help where possible given that her health isnt perfect. It may be acceptable to come from family at first but perhaps later on to involve carers or nurses (commmunity/district nurses as well as Macmillan/cancer specialists). This isnt a failure its just making the most of the expertise available and letting your step dad feel the best he can do. But it is all his decision and sometimes about taking things at his pace, responding as you need.
Do send me messages or post here whenver it helps
Thanks for your message.
Well today we have some good news. My step dad has not had to take pain killers at all today! He's still in bed but cheerful, watching tv and eating (albeit strange stuff)!
He smoked since a teenager but gave up several weeks ago because he said they tasted funny and were making him sick. He says he doesn't miss them at all. Fantastic for him, my mum and visitors. He says meat tastes odd to him these days and so is not tempted by a roast dinner which used to be a favourite. Today he asked for some ovaltine as he's going off tea. He will eat fish and chips or sausage roll and mash but then another day he'll just want a piece of cake or a breakfast cereal. We don't mind as long as he eats.
Another good result today. I spoke to the DWP and the claim for attendance allowance & other benefits is going through ok so hopefully not too long to wait.
I also spoke to social services and they are arranging various things like a commode, second stair rail, grab rails in the bathroom etc. They are also putting them on a waiting list for an OT to visit. (I asked him about the hospice/macmillan link but he is resistant to that at the moment). Social Services did say that the hospice would organise an OT quicker but he doesn't want them involved yet.
I'm pleased that I have some time off at the moment to help sort these things out; I'll keep mentioning all the available facilities; he will agree in the end I think, as it will help my mum too.
One day at a time I know, but we are all hoping he will be able to get up soon as the radiotherapy did help so much last time and that he can maybe enjoy some fresh air too. I'm feeling thankful that we are approaching summer not winter!
Thanks again for your messages!
Yes, its true what you say its most important your dad eats something (and hopefully enjoys it) than the way what he eats seeming a bit strange. I dont know what the funny taste is due to but hopefully he will find things he likes to eat as he is doing, and help give him strength. The doctor can also prescribe supplement drinks if he needs anything extra (eg ensure plus). I think that even a small amount of alcohol cannot be discouraged if your dad likes this (not sure whether he does or not here, but I mean that most things are not off limits). Its so good to hear that your step dad remains positive and seems better in himself after his radiotherapy. I can understand your step dad wanting to take things at his own pace and only having hospice involvement when ready, though you could bring it up from time to time as the hospice can help everyone rather than it being confined to a certain later stage of illness. My mum was resistant to even mentioning the word hospice in case it made my dad think he was 'on his way out' but they were superb once the palliative care nurses were on my dads case. One day at a time seems good way. Hope things remain so positive, such great news
Generally my step dad is cheerful enough and still fairly positive but It's a shame he is still on the pain killers and in too much pain to get out of bed. I think lying in bed all day plays havoc with his back but then he's in too much pain to go far.
The OT came yesterday and did a full assessment. Tomorrow we will be getting various things like a commode, grab rails for the bathroom, another stair rail, hopefully a walking frame and a wheel chair. These things will make such a difference to his and my mum's lives. The OT is coming back to do an assessment on my mum too as her health is deteriorating. Luckily she has a blood test and xray soon to try and sort out her back/leg troubles. It is a worry to watch them both suffering but at least the rest of us are fit to help out with everything.
He did have a problem one night; he had pins and needles in his head and pains in his jaw and arm. The doctor didn't think it was a stroke but has organised a brain scan just in case. He was thinking maybe a clot had formed so now aspirin has been added to the drug list. Hopefully it won't be anything more to worry about.
The GP has now referred us to a local hospice and I think the fact that the facilities are there will be an enormous help to the family. I think my step dad is coming round to idea of their involvement which is another plus.
The DWP have approved the attendance and carers allowance and some pension credit too which again will help them a great deal.
The weather is now starting to warm up and I'm hopeful that we will be able to get him in the wheelchair to get out in the fresh air; although he seems happy enough with his paper, crosswords and the tv.
Hoping everything is ok with you!
With your step dad on painkillers try not to worry about that part too much. Painkillers can be taken long term so even if he was on a drug such as morphine then this can be taken for longer than a few days or weeks and isn't a sign that things are not improved. Its best for his pain to be controlled on perhaps a lower dose of painkillers than him to have that awful breakthrough pain which means it would be harder to stay on top of it.
That is good you will have had delivery of the adaptatations that can make it easier for him to be at home. And your mum is getting more attention to her health too - thats important.
With the symptoms your dad had on that one occasion such as pins and needles in his jaw and arm - do check it with the doctors, it may be a reaction to medication or radiotherapy? - I dont know here and dont wish to guess as that wouldnt be right. There are signs to be wary of for spinal cord compression but this is usually to the back and legs than the parts of the body you mention. A doctor will understand and keep an eye out - as well as you and your mum looking out.
That is extremely good news about the referral to the hospice since they are brilliant I cant praise hospices enough. take good care of yourself too,
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