Hi all
This was on the BBC website this morning.
news.bbc.co.uk/1/hi/health/7423517.stm
S
Yes, this is the stuff no-one wants to know about - our familes & friends, healthcare workers who all shrug and say it’s not my responsibility.
Hmmm, Limbo Land. Colloquially speaking means ‘any status where a person or project is held up, and nothing can be done until another action happens’ or in theology refers to the ‘edge of Hell’ - not a bad description really considering it seems we’re destined to be left dangling without support after treatment finishes, unless/until we find another lump . . . . . thank goodness we have this site to help preserve our sanity.
Thanks for posting this up. Interesting article. Thank goodness there is an increasing awareness of the need to provide support for “people like us” - finished active treatment, but living with the effects of the shock of cancer diagnosis, and surgery, radiotherapy, chemotherapy and future uncertainty. Having recognised the need, let’s hope the services get put into place - hard to measure the benefit, so hard to get the funding I would suspect! Hear, hear, thank goodness with have this site and each other!
Well Said seabird…Ditto your comments…thank god for the article…!
karen x
It is an interesting article and, for me, also covers those of us who are living with mets who are not at ‘end of life’.
I think the tide is very very slowly turning within the NHS in that it is recognising that emotional and psychological impact plays a huge part on how we are able to get on with our lives.
Hi Girls
This is just how I feel, thanks for posting this article. Im 3 years away from diagnosis and when I sometimes get low and start to get tired, have bad memory days, no energy, pain in joints etc I don’t know if its the bc, menaupause, from the chemo or because Ive had my ovaries out. Its just as it states we are in limbo. Which doctor do we go to?
As you can see from the time of posting my latest problem is lack of sleep!!
Debbie x
I’ve come a bit late on this thread but just had to say I am overjoyed to find people are thinking about the aftermath - I have been ranting since my own experience about the lack of aftercare, and feel I have met with so much denial - even by kind people who listen, then end up saying ‘but you’ve got rid of the cancer’ - oh yes but what have we swapped it for? I have seriously, and still seriously, ask myself whether it was worth it for this, and I know I am not the only one - and in fact I decided I would stop going for checkups, stop taking tamoxifen, and just face my fate and one reason for that is because I know I could not go through all that again, and can’t pay any higher a price than I already have for my life. To have the price we pay recognized, acknowledged, would help me so much, and surely others too. So I am really pleased to hear this news, although it will be too little and too late for me.
I thought I’d already posted on this one but maybe on the other site. I welcome this kind of research but I think we also have to be wary because of the governemnt’s agenda of ‘survivoship’ isn’t actually all about their caring approach to people living with cancer. Its a much more economic concern that too many people with cancer are drain on benefits. The survivorship agenda is about getting people back to work and off benefits and if that inolves a bit of CBT counselling on the NHS then its a cost worth bearing.
Jane
I went to the Macmillan conference last year on ‘survivorship’ at which Mike Richards addressed the audience.
I felt it was a waste of time as it was supposed to have been a discussed about what survivorship meant, the wording etc. polyclinics, etc but it seemed like a tick box exercise to me as the following month the Cancer Reform Strategy came out with the term ‘survivorship’ and I have a feeling that it’s not going to go away.
They only focused on those who had finished treatment - no acknowledgement at all to those of us (and not just breast cancer patients) who will never be discharged. I brought this up at the conference to the lead nurse (who used to be our lead nurse in our cancer network group) and she hadn’t thought of this!
The NHS are also looking at computerised CBT - how they think this is going to work is beyond me and having spoken to a couple of my friends (one who is a psychotherapist) says it will be a waste of money and I agree.
I am coming to the end of 9 months of treatment,had first rads today,and will have 5th Herceptin on Weds. Am planning on returning to work but have not considered the aftermath of the last year,will it hit like a bolt out of the blue?,will I cope with the fall out?,what resources are available?
will people think I am cured?what do I say?
I ts a can of worms - do I want to open it?- do I have a choice?
Jane,what other site?
Take Care
Mary
xx
Hi Mary
I am due back to work on 1st July that you have jus read my thoughts. I want to get back - I need to get back for the money - but worry how the whole thing will affect me. I know everybody will be kind and considerate but I don’t know whether I can cope with it all. Would love not to go back. Getting upset just thinking about it.
Liz xx
Mary and Lizzie
I have been back to work for a few months now and it really has been fine. I have decided not to work full time any more which is why I can answer this on a week day morning, but that was my choice and I think I could manage full time if I had to.
I had the works - WLE, chemo, rads and have just had my 10th Herceptin and am on Arimidex (so feel rather old because of the joint pains). I had very serious problems with chemo and had to stop after 4 and found that a very difficult time. I have also recently been diagnosed with osteoporosis so on even more medication for that!
I started back on a phased return and built up the hours very gradually. I had counselling at this time as well which was helpful and I was fortunate because I was able to access this through our occupational health service and can do so again if need be.
People vary in their approach to me as you would except but I have always been very open and talk about the details if they want and have learnt to say very little to other people. I work in the NHS and 90% are female so I am by no means the only person who has had this and a colleague has just returned a few weeks after me.
Yes some people talk about being cured or in remission but I just explain that you are never told either and that “no evidence of disease” is the best you can expect. I have just had a mammogram and MRI in May as I was diagnosed in April last year. Colleagues have been understanding while I was waiting for the results, which thankfully were fine. I do wish the results could arrive quicker as the waiting time was awful, but my oncologist was great and got his secretary to ring me with the mammo results after a week as he knew I was anxious.
I am still getting lots of follow up care and see the oncologist every 3 months and the surgeon every 6 months, but maybe this is because of being on Herceptin still. I expect to be seen less often next year.
I realise that it is early days as yet and that the after effects may hit me badly at any time. I get very down at times and as my Mum died of BC 20 years ago, that isn’t surprising, but there are at the moment many many more times when I am optimistic. I would be very bored if I hadn’t gone back to work and although it is tough at times I am so glad I did it.
Sorry this has turned out to be very long!
All the best
Anne
I finished treatment end of Jan am triple neg so thats it, saw the Onc in May and he said not to come back for 12 months unless I get problems, then my GP can rerefer me. I do worry sometimes as the C was very agressive and fast growing and was in 21 out of 24 nodes. I guess as noone wants to see me I should just shake myself up and get on with life as some people have said a year of treatment is enough and I should consider myself lucky not to have other complaints.
Hi Anne
I work for the NHS too and have been told I can use last year’s annual leave for my phased return. Was this the case for you?
A colleague at work had BC a year before and is now on Armidex. (she is at my place of work but actually works for the education department) I don’t have information about this and wonder why you take it and I was wondering whether I would need to go on it. I see my oncologist next week and the surgeon in September, whom I haven’t seen since last July, 2 weeks after my op.
I am due to start counselling as I deal with day to day stuff okay and keep smiling but when somebody does enquire more in depth of my health I do get upset and feel a lot of people (mainly family) don’t acknowledge what I have been through.
Also we are not offered any tests in the form of scans, MRI etc. We have just been told that if you get anything unusual to go back to the breast care nurse
Love
Liz xx
Hi Liz
If it would help I am happy to “talk” about all this more with you as a private message.
I didn’t use annual leave for my phased return as our policy sets out how it will operate and is more generous than in some other NHS trusts. It does depend what your policy states as there is nothing about this in national terms and conditions. But we can only carry one week’s leave over in to the next year (which is actually a national rule!) and your trust appears to be letting you carry over more so is more generous in that way. Have you discussed all this with your HR manager as well as your line manager?
I am on Arimidex because my cancer was strongly oestrogen positive and I am post menopausal. If I was younger I would probably be on tamoxifen instead. But you may be negative for oestrogen and therefore not need either.
I had to have the MRI in addition to the mammogram because when the invasive cancer was removed they found DCIS as well which, for some reason, had not shown up on the initial mammogram, so in order to be sure I had both tests done. Will you not have a mammogram one year from diagnosis? I got the impression this was fairly standard.
All the best
Anne
Hi Jane RA and pinkdove - oh, doom - a chilling dose of reality. I had no idea about these things you have mentioned and have never heard of ‘survivorship’ but it sounds decidedly suspicious to me - buzzwords used as a pretence for action, yuk. So although I am not au fait with the issues you mention I see that there is a big political agenda and how naive of me to be cheered; obviously the government is only concerned about costs - that is why I wonder why they bother with all this, presumably expensive, cancer screening at all - my rage has always been that they trawl you in, mutilate you, and then dump you. And they do trawl you in. I did not respond to my invite to screening so someone, a voice, rang me and told me that I ought to go in…My problems began when I met them. My view is that if they trawl you in then they are morally obliged to see it through, to the bitter end, whenever and however that may be and whatever you may need on the way, because they started it. But how foolish of me to think that they were coming round to seeing that. Wonder what CBT is?
Hi snowhite
I’m probably a bigger cynic than I should be! Sorry to use jargon…CBT stands for cognitive behavioural therapy which can be a useful kind of counselling in getting people to think differently about their problems with a view to changing how they respond and act on them. But it can be a rather superfcial way of dealing with problems. Its a relatively cheap kind of counselling because those who support it reckon you can do a lot in a short time, while other kinds of counselling can take longer.
Yes ‘survivorship’ is the new cancer buzzword…
best wishes
Jane
CBT is Cognitive Behavioural Therapy. I’m currently seeing a psychologist attached to my breast service for counselling and in order to try to help myself through this last bit I try to set myself little goals, whether they be work goals, study or personal. She told me the other week that doing this is a very loose form of CBT. She said she is more inclined to use CBT when a person is suffering depression. My problem is more related to some confidence issues I have suffered in the past few months.
I’m not really into things like self help manuals as they usually send me to sleep (one of the worst was by Dr Phil of the Oprah Winfrey show - I had switched off by Ch 3 it was so boring). However, I bought a couple by a lady called Fiona Harrold recently for motivation purposes and they are very good. Between reading those and the counselling, I’m starting to be able to look at things in a different way and let go of old wounds.
Hi
Re phased return and using hols,is this not covered by EMPLOY CHARTER which says that employees should not use leave for treatment etc,and a phased return under DDA is part of making a reasonable adjustment.
Mary
xx