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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.
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