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Do these words strike a chord with any of you? This quote is from one of the many people who have told us that they are struggling with the long-term effects of cancer and its treatment.
I think we can all agree that it’s good news that more and more people are surviving cancer, and that people with incurable cancer are living longer. But it’s important to remember that surviving is not always the same as being well.
Last week, Macmillan published research that shows that one in four people who have previously been diagnosed with cancer are still facing poor health or disability. The most common issues are fatigue, sexual difficulties and mental health problems.
Cancer treatment can be gruelling and intensive, so it’s not surprising that some people are left with long-term physical issues. And, after what can be a traumatic and distressing experience, the emotional impact can also continue to affect people for some time.
I also know from many of our Community members that they can be left feeling really isolated. Sexual and emotional difficulties can have an impact on people’s relationships, and a variety of issues can affect their work and social life.
Macmillan is calling for the NHS to do more to identify patients at risk of these problems and offer a ‘recovery package’ of support at the end of treatment.
Have you been affected by the long-term consequences of cancer and its treatment? What support would help you to cope? Let us know your experience in the comments below.
Yes this does strike a chord. I know I am lucky to still be able to live some sort of life - and am 3 1/2 years from diagnosis and start of treatment.
But as a man with advanced prostate cancer that is incurable - and on hormone treatment. Many men are never told what side effects HT will have but it hits at our very manhood, chemically castrating us with all that that means. Sexual issues, muscle bulk reducing all the time, chronic fatigue, mood swings are just a few of the side effects.
I'm not sure what support can do to be frank - it is something we have to come to terms with - if we want the treatment to control the cancer for a year or four. But its good to see that these problems are slowly being recognised.
Some good advice there and useful links.
It's easy to feel you have been deserted after the treatment has finished and hospital visits are reduced. Every little pain or problem looms large and it may be a year before you see the team who treated you again.
Many of us on this site found that reading the article 3 by Dr Peter Harvey helped us to understand that these feelings were quite natural which goes a long way to helping us cope with this isolation.
Of course the support of friends on this community helps us to feel less isolated and helps us to understand when it is important to seek help and where we can find it.
As for the after effects of treatment, we gladly accept them rather than stay with the cancer, although sometimes we wish that perhaps they were less intrusive in our lives!
Thankyou for posting this, it is good to have reliable local references.
Hi my hubby recently diognosed with eye cancer ,just 6months since his op ,full of pain full of remorse,wondering if he's going to get through this,went to sheffield hosp today with complecations,with his eye ,given drops steroids,to eleviate,head pain but as always,why save an eye that.s no use ,no sight or , always in pain ?liver test next, why didn't,they remove his eye when he asked them? as usual save the eye if possible ,then cope with the pain its endless i as his wife feel so help less watching him suffer ,i know i must be supportive ,brave& strong for him, but i feel he's been let down ,& it breaks my heart to see him so low
I'm sure this is a valuable effort on the part of Macmillan. Too often, patients and their families are left struggling to find information. I became an expert on research into urothelial carcinoma simply because I felt my husband was largely left in the dark. Sadly, the NHS made me feel unimportant, patronised and a nuisance and I was my husband's principal carer. So Well Done Macmillan! Where would we be without you!
Sadly, 'Living with the consequences of cancer' has a very different meaning for me, and not what i think you intended to mean when you started this blog. But the Mac site has supportive and sharing Groups for people like me, too. So, Well Done Macmillan again!
I can only echo LittleJen as a carer and widower. After Laing died I felt I was really on my own. I hung around in the lung cancer forum and got wonderful support from others who with their own cancers showed me love and care when I needed it. I then took the plunge and went headlong into accepting my bereavement and joined the bereaved spouse forum, to which I have said "au revoir" a few days ago 6 months after Laing's death and now I am blogging here to show there is a life, and a real one, for thos eof us "left behind".
Without Macmillan providing this wonderful website enabling social networks to exist and flourish, I ask myself these questions as we adjust as patients, carers and bereaved
How would we cope?How would the NHS cope?How would the economy in general cope?
For those who use the website, there is information from Macmillan on web pages, the helpline, all of us who have gone through the journey. Nobody should feel ashamed or reluctant to seek help, and the best help I found is from my peers here in Macmillan land, even if it is only a virtual hug they can give.
Kate Grainger's blog post on long-term consequences of treatment - and how some doctors approach this - might be relevant here? http://drkategranger.wordpress.com/2012/12/27/the-long-term-consequences-of-chemotherapy/
Sorry, Kate Granger...
I was rather lost after my treatment ended and that is where Macmillan really helped me. I think the online community is a life saver for many of us at that time. During treatment I got a lot of support and it was all such a whirl that you don't stop to think. Afterwards your friends and family assume you are now ok and want to forget and just get on with life. You are left with side effects and no confidence a big wobble...
The article Colin mentioned is excellent and should be handed out at last treatments I think.
I am left with physical difficulties that I manage myself and it is worth it for being alive of course. I have been told I will probably need another op in the future due to radiation damage but for now I am exercising and keeping healthy as I can and Mac supports the mental side. I would have liked someone to phone and talk to about worries after treatment. You don't want to seem paranoid with the doctors and phoning up or seeing them over every thing but some of my side effects are similar to the cancer symptoms and it takes a while to get some trust in your body again.
Things like move more from Macmillan are really helpful too. Knowing what to do about diet and exercise and things is really useful.
my doctors have been great and offered support on some of the effects of pelvic radiation but it can be hard to talk about some of the things so here is great.
Thanks Mac for highlighting it. I think just it being recognised is a big help. So many people assume it is back to normal once you finish treatment and just others knowing that you may still be struggling with side effects is helpful so you don't feel like a whinger.
Thanks to everyone for sharing your experiences here. It's good to know that this strikes a chord with many of you, and that you think Macmillan is right to be looking at this issue. I'm so glad to hear that Macmillan, and the Community, have been able to help support many of you and help you feel less alone.
Thanks to Paddyman and ground for those useful links - they both look like really interesting reads.
If anyone's interested in following up on Little My's points about diet and exercise, we have some information on our website about eating well, and you can also order our free Move More guide and exercise DVD.
I think Little Jen and Tim raise a really good point - the consequences of cancer can mean different things to different people. This particular report does focus on people who've been diagnosed with cancer themselves, as we think it's an important issue, and one the NHS needs to prepare for. However, it is Macmillan's aim to support everyone affected by cancer, and this includes the friends, family and carers of people who've been diagnosed, as well as those, like yourselves, who've been bereaved. I'm glad that you do both feel that you have been able to get support.
Welcome to the Online Community. I'm so sorry to hear about your husband's cancer, and that you feel so let down by his medical team. It sounds as though you're finding it really hard to see him in pain, which is understandable.
I think you might benefit from giving our Support Line a call on freephone 0808 808 0000 (Mon-Fri, 9am-8pm). You can talk through any issues you have about your husband's treatment with our specialist nurses, and get information and emotional support.
I glad that you've found this site, as many of our members find that it helps to have a place to share experiences with people who understand what they're going through. To get started, it's a good idea to join and post in some groups that are relevant to you. For example, you may be interested in the eye cancer group and carers only group.
I couldn't agree more - your on a roller coaster of emotions and strapped in for the ups and downs of diagnoses, treatments and surgery. Then after you have just fought the biggest battle of your life, you're let back into the world so to speak feeling very different. For me I don't have a clue what to expect at my check ups and emotionally this has been very traumatic as with most cancer patients. I have been left feeling very down and low.
Its so great what Macmillan are doing, this site is truly a life saver!
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