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Transcript – Programme 84: Cancer pain

How can­cer sur­vivors can man­age long term pain and cre­at­ing a home from home at the hospital

To lis­ten to this pro­gramme, please click here.

More peo­ple than ever before sur­vive can­cer, but the dis­ease and treat­ment can have long-last­ing effects on health, includ­ing chron­ic pain. In this edi­tion of Air­ing Pain we vis­it Maggie’s Cen­tre, Edin­burgh, which pio­neers a com­pas­sion­ate, per­son­alised approach to sup­port­ing those with can­cer and sur­vivors of the disease.

Can­cer Nurse Andy Ander­son explains how the tran­quil, home­ly envi­ron­ment at Maggie’s gives ser­vice users a chance to regain con­trol. Claire Tat­ter­sall speaks about her long strug­gle with bone can­cer, the stig­ma sur­round­ing the ‘C word’ and the pain result­ing from her life-sav­ing treatment.

While Claire takes her pain as a reminder that she’s ‘still here’, the immense grat­i­tude many sur­vivors feel can lead to their pain going unre­port­ed, says can­cer pain spe­cial­ist Dr Les­ley Colvin. She explains why can­cer and its treat­ment can lead to chron­ic pain and how we can improve pain man­age­ment in pal­lia­tive care and for survivors.

Issues cov­ered in this pro­gramme include: Can­cer, chemother­a­py, pal­lia­tive care, neu­ro­path­ic pain, fam­i­ly and rela­tion­ships, hos­pi­tal envi­ron­ment, com­mu­ni­cat­ing pain, post-sur­gi­cal pain, CBT: cog­ni­tive behav­iour­al ther­a­py, men­tal health, breath­ing exer­cis­es and pri­ma­ry care.

Paul Evans: This is Air­ing Pain, a pro­gramme brought to you by Pain Con­cern, the UK char­i­ty pro­vid­ing infor­ma­tion and sup­port to those of us liv­ing with pain and for health­care pro­fes­sion­als. I’m Paul Evans and this edi­tion is fund­ed by the Agnes Hunter Trust.

It is good that we are cur­ing more peo­ple of can­cer but we have to recog­nise that not dying is not the same as being well. No one should face the often severe long term effects of can­cer. That was the fore­word to the char­i­ty Macmil­lan Can­cer Support’s 2013 report ‘Throw­ing light on the con­se­quences of can­cer and its treat­ment’. In this edi­tion of Air­ing Pain I’ll be look­ing at one of those long term effects, that is chron­ic pain. Les­ley Colvin is a con­sul­tant in Pain Med­i­cine in the Loth­i­an Pain Ser­vice. She’s run a com­bined clin­ic with pal­lia­tive care for the last 16 years. So how preva­lent is long term pain fol­low­ing can­cer treatment?

Les­ley Colvin: I think it depends on the can­cer treat­ment, so if you have had chemother­a­py it depends on the type of chemother­a­py you’ve had. So there are par­tic­u­lar types of chemother­a­py where your risk of hav­ing a long term neu­ropa­thy effect in your hands and your feet might be up to 50 per cent. Glob­al­ly, if you look at all chemother­a­pies, in the pub­lished lit­er­a­ture it’s round about 30 to 33 per cent, who’ll still have some form of neu­ro­path­ic dam­age a year down the line. And then after can­cer surgery it depends on the type of surgery, so after tho­ra­co­to­my up to about 70 per cent of patients might have hor­ri­ble pain after­wards. After a mas­tec­to­my round about 30 per cent. So it also depends on how hard you look for it. And I think that goes back to… it’s real­ly impor­tant to assess pain prop­er­ly, but also to enable patients to ask for help when they need it.

Evans: Les­ley Colvin. One source of help is pro­vid­ed in 20 hos­pi­tal loca­tions across the UK by the char­i­ty Maggie’s. In Edin­burgh it’s in the grounds of the West­ern Gen­er­al Hos­pi­tal where I met Andy Ander­son. He’s a can­cer nurse work­ing full time for Maggie’s.

Andy Ander­son: Maggie’s is a sup­port resource for any­body affect­ed by any type of can­cer at any stage. So, many peo­ple who come to the cen­tre are peo­ple new­ly diag­nosed with ear­ly stage bow­el can­cer, ear­ly stage breast can­cer, look­ing to ful­ly recov­er from their diag­no­sis, but under­stand­ably in the flux of upset and con­fu­sion and dis­tress about their diag­no­sis. So a lot of the sup­port we pro­vide for those peo­ple is help­ing them through treat­ment and impor­tant­ly help­ing them in their recov­ery back to what­ev­er their new nor­mal­i­ty is.

But we also sup­port a lot of peo­ple for whom their diag­no­sis means that they won’t recov­er from their expe­ri­ence of can­cer. And it’s sup­port­ing them through that expe­ri­ence and sup­port­ing them to what­ev­er it is that they wish to be sup­port­ed to. Impor­tant­ly also, the sup­port is for fam­i­ly mem­bers as well, the chil­dren of, the sib­lings of, the part­ners, fam­i­ly mem­bers of some­body with a can­cer diagnosis.

Evans: You used the word ‘nor­mal­i­ty’. Just get­ting here, to describe it, it’s a large gen­er­al hos­pi­tal in a res­i­den­tial area, quite an upmar­ket res­i­den­tial area I would think. But we’ve come through a fan­tas­tic scent­ed gar­den. There is noth­ing hos­pi­tal-ish, if that’s such a word, about Maggie’s Centre.

Ander­son: That’s exact­ly right, and that’s a very delib­er­ate process, you’re right. This is a huge, overde­vel­oped hos­pi­tal, with a mas­sive gen­er­al hos­pi­tal but also a can­cer cen­tre bolt­ed on to that. As most hos­pi­tals in the UK are, they’ve grown from a very small cot­tage hos­pi­tal or gen­er­al hos­pi­tal and then major bolt ons. So it’s a big hos­pi­tal cam­pus. But we’re a very small domes­tic scale build­ing on that big hos­pi­tal cam­pus, with a beau­ti­ful gar­den sur­round­ing us, an envi­ron­ment that feels noth­ing like a hos­pi­tal. When you walk into the cen­tre you walk straight into a kitchen, with a kitchen table, an oppor­tu­ni­ty to have a cup of tea or cof­fee, to sit and to meet oth­er peo­ple in a sim­i­lar sit­u­a­tion. But also the space offers an oppor­tu­ni­ty to meet health­care pro­fes­sion­als and to talk through what that expe­ri­ence means for you, or for your fam­i­ly as well.

Maggie’s aim was to try and per­son­alise this build­ing, to make sure that when you stepped in you came in as a human being, rather than a num­ber and a name asso­ci­at­ed with a can­cer diag­no­sis. And that’s exact­ly what the build­ing and the built space offers the centre.

One of the fun­da­men­tal things that Maggie’s offers is peo­ple a space to start to regain con­trol, when they’ve felt very vul­ner­a­ble, very over­whelmed, either because of a diag­no­sis or because of the com­plex­i­ty of the symp­toms or side effects that come with that diagnosis.

Evans: Just go back to the begin­ning of what a per­son might feel when they get that diagnosis.

Ander­son: So what peo­ple describe to us is often there’s been a lead up to the diag­no­sis process itself, they’ve had some con­cern­ing symp­tom, they’ve been to their GP. So they have an aware­ness that something’s not right.

But most peo­ple try real­ly hard not to acknowl­edge that that could be the case, they’re very fear­ful of acknowl­edg­ing that real­i­ty. And when it’s described to them often there’s a mas­sive state of shock, over­whelm, fear. Some of that fear is asso­ci­at­ed with his­toric ref­er­ence points, so the fact that their mum, or their father, or their uncle died a dif­fi­cult death asso­ci­at­ed with can­cer and they assume that’s going to be their own story.

Inter­est­ing­ly though, for some peo­ple there is a sense of relief because they’ve been wrestling with a dif­fi­cult symp­tom, a dif­fi­cult process for a while and at least now there’s a name to it. And, impor­tant­ly, there’s a treat­ment plan, there’s a strat­e­gy for deal­ing with my diag­no­sis. But most peo­ple def­i­nite­ly require some advice, some guid­ance, some trans­la­tion and some sup­port asso­ci­at­ed with that.

Evans: And going back once again to that word ‘nor­mal­i­ty’. How does what you describe those feel­ings – and I’m sure there are many dif­fer­ent feel­ings – how does that affect the world around them, their fam­i­ly, their col­leagues, their siblings?

Ander­son: What a lot of peo­ple describe as some­body with a diag­no­sis in the cen­tre, is that their fam­i­ly mem­bers, their friends, their col­leagues, their peers, their neigh­bours, are all equal­ly shocked, but some­times feel even more out of con­trol because they’ve got no vehi­cle to actu­al­ly do any­thing tan­gi­ble to make a dif­fer­ence. The indi­vid­ual with a diag­no­sis has a treat­ment plan and although they’re going to have to deal with surgery, radio­ther­a­py, chemother­a­py, there’s a struc­ture. And that’s their job, that’s their job for the next six months. So they know they’ve got some­thing tan­gi­ble to do.

Often what they describe is that they’re hav­ing to pick up the pieces of their hus­band, or their wife, or their chil­dren, or their neigh­bours, or their col­leagues, because their col­leagues’ expres­sion of upset and love and dis­tress for them can often be over­whelm­ing. So a lot of peo­ple talk about not only man­ag­ing their own reac­tion and upset, but hav­ing to spend a lot of time man­ag­ing oth­er people’s upset as well. So that is often described in this centre.

Claire Tat­ter­sall: My name is Claire Tat­ter­sall, I’m 39 and I’m at Maggie’s Cen­tre because just before I turned 21 I was diag­nosed with a very rare form of bone can­cer. I had a year and a bit of treat­ment, I’ve had 30 odd oper­a­tions over the last 18 years, so Maggie’s have sup­port­ed me all the way through that.

Evans: Andy was just telling us about the emo­tion­al jour­ney of hav­ing can­cer, that first thing and the effect on the fam­i­ly, can you tell me how that affect­ed you?

Tat­ter­sall: At the time I was play­ing semi-pro­fes­sion­al hock­ey, so when I was diag­nosed, for months they had put it down to a sport­ing injury, so when the diag­no­sis came it was a com­plete shock. I thought I had my career in the ambu­lance ser­vice, a para­medic, my hock­ey career, which I would retire when I chose. And in one foul swoop that was all changed.

So the effect on my fam­i­ly was even worse, because I tend­ed to joke my way through it, where­as they were the ones that were com­ing at home at night time and not know­ing exact­ly what was going on, because obvi­ous­ly I was there and it was hap­pen­ing to me. So they only had my word to go on and the doc­tors’ word to go on. And I sup­pose as par­ents, and for my broth­er, it’s the last thing that you expect. It real­ly affect­ed our whole fam­i­ly greatly.

Ander­son: A lot of fam­i­ly mem­bers come to the cen­tre, so last year 40 per cent of the vis­i­tors to Maggie’s were fam­i­ly mem­bers. And they’re all com­ing to say, this is upset­ting for me, but how can I be the best resource for my hus­band, my wife, my dad, my sib­ling, to help them through their expe­ri­ence? Part­ly so they can come here and name their upset with­out then upset­ting the per­son with the diag­no­sis, but also that they can come with more of a con­struc­tive approach to be the along­side per­son through that.

We try often to pro­vide sup­port sep­a­rate­ly, but quite often we’re sup­port­ing fam­i­lies as a whole fam­i­ly as well. Yes­ter­day I met eight mem­bers of a fam­i­ly who came togeth­er to think about how the mum could be best sup­port­ed by the par­ents, the sib­lings and the chil­dren, and it was a real­ly con­struc­tive conversation.

Evans: What did you tell them?

Ander­son: So some of it is know­ing that can­cer is some­thing that can be spo­ken about, being hon­est and being real, try­ing not to obscure your own emo­tion­al response, speak­ing about your emo­tion­al response and being hon­est as a fam­i­ly about that. So each per­son hav­ing a respon­si­bil­i­ty to account for their own needs, but also some of the fam­i­ly mem­bers step­ping up to the mark a bit more.

So the mum in this sit­u­a­tion was the rock of the fam­i­ly, but also the chief cook, the chief bot­tle wash­er, the chief clean­er upper. So some of the children’s role was actu­al­ly to step up to the mark and make sure they picked up their socks. Some of it also was par­ents know­ing what would be valu­able in terms of chauf­fer ser­vic­ing, in terms of pro­vid­ing pre-cooked meals, but also being there as that resilient emo­tion­al sup­port for the indi­vid­ual affected.

Evans: Did the can­cer define you as a person?

Tat­ter­sall: Yeah it did. I can remem­ber say­ing to a cou­ple of doc­tors, ‘I’m a per­son with can­cer, I’m not can­cer with a per­son attached’. And that hap­pened out in the world as well, peo­ple would… ‘there’s Claire with can­cer’ – ‘no, I’m just Claire’. I wasn’t a walk­ing tumour. I wasn’t a tick­ing time bomb. In my head, I was still me.

But some peo­ple found it real­ly dif­fi­cult to dis­so­ci­ate the can­cer and me, where­as I found it very easy, because I was so fit then I had not so much side effects as some peo­ple have. So I could, for the first six months at least, I could get on with my life, the two weeks that I was at home out of every three, pret­ty much as nor­mal. I was still going and play­ing hock­ey, I was still work­ing, I was still doing youth work. I nev­er lost my iden­ti­ty, but I think oth­er peo­ple strug­gled to realise who I was anymore.

Evans: Peo­ple still don’t like using the work ‘can­cer’, it’s the ‘C word’ or it’s the word we don’t talk about. I guess 18 years ago it would have been even more like that?

Tat­ter­sall: It was. I remem­ber on a Fri­day after­noon being told from a rheuma­tol­o­gist that I had a tumour. Now a 20-year-old, on my own, Fri­day after­noon in a clin­ic. I don’t remem­ber much about the dri­ve home, but I do remem­ber think­ing, should I tell peo­ple? Because there was still a mas­sive stig­ma to hav­ing had can­cer, it was still classed as dirty and you know, you must have done some­thing to cause the can­cer. And that real­ly played on my mind as to should I tell people.

And then, actu­al­ly, if peo­ple can’t deal with it, then that’s some­thing that they’ve got to work out, I just have to be me. Alright, the ill­ness has had a mas­sive impact on my life, in a way that I would nev­er have wished on my worst ene­my, but it’s just a word. You know if you say it, you’re not going to catch it. I know a few peo­ple who have had can­cer and are scared to talk about it once they’ve got the all clear, in case it comes back. Well it doesn’t work like that.

Evans: Do you have can­cer now?

Tat­ter­sall: No, I don’t. I have the all clear from the can­cer. The only thing I have to live with is the after effects of all the treat­ment and the surgery that I had. Because the surgery was to save my life, so there wasn’t any thought of what will hap­pen down the line, so there was a lot of nerve dam­age done. So now I have to live with the pain and the con­stant surg­eries, but no I don’t have can­cer. As much chance as any­one else now.

Evans: That’s Claire Tat­ter­sall, speak­ing to me at Maggie’s Cen­tre in the grounds of the West­ern Gen­er­al Hos­pi­tal in Edin­burgh. Andy Ander­son again.

Ander­son: Sad­ly, we see a lot of peo­ple for whom their diag­no­sis, although it may have been ful­ly sur­gi­cal­ly removed and ful­ly treat­ed with chemother­a­py or radio­ther­a­py, because of the area pre­sent­ed in its left them with ongo­ing nerve-relat­ed issues or nerve-relat­ed prob­lems. Or because of the surgery itself – it’s left them with ongo­ing com­plex pain issues.

Some of those can be very well man­aged, and some are much more com­plex and require high lev­el skilled symp­tom con­trol spe­cial­ists to be able to be involved with. Often an oncol­o­gist is well equipped to be able to pre­scribe a range of anal­gesics, often GPs are very good at pro­vid­ing good anal­gesic sup­port, but for the most part the pop­u­la­tion we sup­port, who have more com­plex pain issues, require the spe­cial­ist sup­port of sub-spe­cial­ist pain con­trol teams, either with­in the hos­pi­tal or with­in the community.

Evans: Pain con­sul­tant Les­ley Colvin again:

Colvin: I think the oth­er issue – and I do see a lot of these both in the com­bined clin­ic and in the chron­ic pain clin­ic – is that can­cer treat­ment itself, to do the job it has to do, is quite tox­ic, but there are side effects, and one of those side effects is pain. Chemother­a­py, very effec­tive chemother­a­pies, but depend­ing on the chemother­a­py you get, at least half of peo­ple may have ongo­ing neu­ro­path­ic type pain.

Evans: So I just asked Claire the ques­tion, ‘do you have can­cer?’ And she said ‘no’. And I said, ‘do you have pain?’ And she said ‘yes’. So what’s going on there?

Colvin: Obvi­ous­ly some patients are cured of their can­cer, they go to the oncol­o­gy fol­low up clin­ic for a num­ber of years, they’re dis­charged at five years cured of their can­cer, but what they may still have is ongo­ing pain, either as a result of what the can­cer did to their body in the first place, or often due to the treat­ment. So either the chemother­a­py or surgery is the oth­er major one. So can­cer surgery by def­i­n­i­tion is not minor surgery and there can be long term prob­lems with that and one of those is pain.

Evans: I know every case is dif­fer­ent, where do you start, how do you start to man­age that?

Colvin: Every case is dif­fer­ent – and I think that’s real­ly impor­tant actu­al­ly, you know, assess­ing patients indi­vid­u­al­ly and work­ing out a man­age­ment plan with the patient, so that they’re involved in it, I think is the basis for suc­cess­ful man­age­ment. The oth­er thing that is also very impor­tant, is when you see a patient and you make changes to try and improve their pain, is hav­ing some way that you can reassess the pain effec­tive­ly, to reassess what has hap­pened as the result of the things that you’ve changed.

And some­times I think our health­care sys­tem is set up with this huge pres­sure on us not to fol­low up with patients, and that can actu­al­ly be quite chal­leng­ing. And often, par­tic­u­lar­ly patients with com­plex pain relat­ed to their can­cer, you need to see them quite fre­quent­ly to make sure that things are fine-tuned and that they’re as good as you can get them.

Evans: You have a beam­ing smile across your face, but you’re still in pain?

Tat­ter­sall: Yeah, as one of my con­sul­tants said the oth­er week, I turn 40 in Decem­ber and no one thought I was going to make it. I shouldn’t have real­ly even turned 22. So pain, as much as it dri­ves me insane and some­times I’m climb­ing the walls, I’m still here. And pain kind of reminds me that I’m alive.

Evans: Claire said that ‘the pain reminds her that she’s alive’. Now, I find that an extra­or­di­nary glass half full statement.

Colvin: Yes, and I think that that’s a very good point because often you feel hum­bled with some of the patients that you meet, who’ve been through can­cer and have end­ed up with real­ly quite dread­ful prob­lems actu­al­ly, pain prob­lems, that are long term, that are prob­a­bly not going to go away. And it is one of the things that you think, ‘gosh, I don’t know if I would be like that in the same sit­u­a­tion’. They are so uncom­plain­ing. That’s impor­tant, actually.

And, again, I think that – not will­ing­ness, but lack of say­ing ‘what can you do for me?’ – is a bit sad, actu­al­ly, because often there’s quite a lot we can do for peo­ple but it takes peo­ple maybe a long time to get there. Maybe that’s part of the process, but maybe we could change things a lit­tle bit.

So, for instance, we talked about tho­ra­co­to­my, and 70 per cent of patients will have pain a year down the line, actu­al­ly, when you assess them at six weeks, when they’re assessed by the sur­geon six weeks after­wards, or by the onco­log­i­cal team, if they’ve got dif­fi­cult pain at that point they will prob­a­bly still have pain a year lat­er. So maybe at that point, instead of wait­ing for them to com­plain, we should be say­ing, ‘actu­al­ly, let’s get you to see a pain spe­cial­ist, or a pal­lia­tive care spe­cial­ist with a par­tic­u­lar inter­est in pain and symp­tom control’.

One of the things that has struck me about the dif­fer­ence between patients who’ve been through the can­cer jour­ney, to maybe a patient who’s got chron­ic back pain, is that patients are so grate­ful that they’ve had this huge amount of input and that they’re still alive, is that they will put up with an enor­mous amount of real­ly unpleas­ant pain, before they ask for help. And I do see patients who, sev­en years down the line, they’ve end­ed up com­ing to the pain clin­ic and we’ve done some­thing that’s helped them, but they’ve put up with it for sev­en years.

So it’s find­ing a way to enable patients to ask for help and maybe part of that is ear­ly on in the can­cer jour­ney. So, for instance, if they’re com­ing to Maggie’s Cen­tre and some­one in Maggie’s Cen­tre realis­es that they’re sore, hav­ing them flag up that there’s some­thing that can be done about it, rather than just putting up with it.

Evans: And that’s one of the advan­tages of a place like Maggie’s Cen­tre, a drop-in cen­tre, if you like [Colvin: that’s right], that they can talk to peo­ple who know what’s going on and can reas­sure them that that’s just an ache and a pain, or, on the oth­er hand, say, ‘actu­al­ly, I think you ought to just have a word with some­body about that’.

Colvin: Yeah, because one of the things that I do notice is that quite a lot of the onco­log­i­cal fol­low up is done by expe­ri­enced clin­i­cal nurse spe­cial­ists. And they’re actu­al­ly – I would say – some­times bet­ter. Maybe they’ve got a lit­tle bit more time, maybe the patients talk to them a bit more, but they’re maybe bet­ter than med­ical staff at direct­ing patients towards the pain clin­ic, or the com­bined pain clin­ic with pal­lia­tive care.

Ander­son: Most peo­ple describe at the end of their treat­ment, whether it’s with cura­tive intent or whether it’s with main­te­nance, that their radar is incred­i­bly high­ly-tuned and every new ache, every new pain, every new cough, every new mole is can­cer before it’s any­thing else, in their emo­tion­al response. It takes a while for them to bring in their good, log­i­cal, calm, ratio­nal thinking.

And often their log­i­cal, calm, ratio­nal think­ing is accel­er­at­ed by being able to come back to the Cen­tre, or by being able to check in with their nurse spe­cial­ist in the hos­pi­tal, the nurse spe­cial­ist that was that fort­night­ly check in through the whole treat­ment. They could give the nurse a call and say, ‘lis­ten, this is going on for me today – is that some­thing to be wor­ried about?’ And it can be talked through and a relief point giv­en. That alarm bell process is very dif­fi­cult and I think that lasts with peo­ple for a good two to three years after the com­ple­tion of treatment.

A lot of the con­ver­sa­tion is nor­mal­is­ing, a lot of the con­ver­sa­tion is giv­ing peo­ple a dif­fer­ent per­spec­tive on their expe­ri­ence and also help­ing them to bring in their good, ratio­nal, calm think­ing. The fear that they have dimin­ish­es that log­i­cal think­ing, but when they’ve sat with us for ten or fif­teen min­utes, then them­selves they start to say, ‘actu­al­ly, you know what, on reflec­tion I know that I’m able to do x, y and z to work my way through this, thanks for your guid­ance and thanks for your sup­port’. So, often we’ve not giv­en a defin­i­tive direc­tion, it’s the indi­vid­ual who’s made that deci­sion, but we’ve helped them get to that posi­tion of deci­sion making.

Colvin: I think patients, when they have a diag­no­sis of can­cer, there’s obvi­ous­ly the shock of ini­tial diag­no­sis, there’s a whole com­pli­cat­ed and often unpleas­ant jour­ney of the can­cer treat­ment and there­after and through­out that, hav­ing some­where where you can maybe step aside from the very clin­i­cal envi­ron­ment, have the sup­port but also the expert under­stand­ing and exper­tise that exists in Maggie’s Cen­tre is enor­mous­ly help­ful for patients.

In oncol­o­gy cen­tres there’s a huge pres­sure to man­age patients who have active can­cer, and often patients say that they get a huge amount of input dur­ing the time that their can­cer is being treat­ed and then chemother­a­py fin­ish­es, what do they do next, where do they go for sup­port? And Maggie’s Cen­tre actu­al­ly fills a gap there. It’s actu­al­ly a real­ly nice exam­ple of work­ing between the NHS and char­i­ta­ble organ­i­sa­tions, which I think pro­vides an enor­mous amount of ben­e­fit for patients.

Evans: It must feel like an incred­i­ble relief to walk into some­thing on hos­pi­tal grounds that doesn’t look like a hos­pi­tal, there are no white walls, there are no peo­ple in white coats, it’s like a cafe out there. That must be like a haven of peace.

Colvin: I think you’re absolute­ly right and one of the things we know about pain is that stress and fear will make pain worse, not through imag­in­ing it, but just that is the way that pain works, so any­thing that can sup­port patients to alle­vi­ate that will not only help their gen­er­al qual­i­ty of life, but actu­al­ly poten­tial­ly help man­age their pain. Obvi­ous­ly, med­ica­tion has a role in that, but there are side effects to med­ica­tion, there’s no side effects com­ing to Maggie’s Centre.

Evans: Do you man­age your pain not just by drugs, but with what we call talk­ing ther­a­pies, the psy­chol­o­gy, all done these days through pain man­age­ment programmes?

Tat­ter­sall: Yup, I see a psy­chi­atric nurse who does CBT (cog­ni­tive behav­iour­al ther­a­py), to try and work on relax­ation meth­ods and tak­ing your­self out of that moment when your pain is real­ly bad. If you can catch it before it gets real­ly bad, then it can help, because if you dis­tract your mind for long enough, then it’s got to take it away from the pain. It’s only when you con­cen­trate on the pain that it takes over you.

And, obvi­ous­ly, some days the pain are so bad that those things don’t work, but a lot of the time they do. And the men­tal health team, as part of the pain team, have been amaz­ing, because I wouldn’t like to be treat­ing me, because I’m a bit stub­born [laughs], men­tal health I strug­gle with because I’m a fix­er. Give me a phys­i­cal chal­lenge, like I’m in a wheel­chair I hope to walk again, no prob­lem, I will spend sev­en days a week at physio. Ask me to talk about what’s going on in my head, then I strug­gle. Ask me to think about how I feel when the pain is real­ly bad, I strug­gle. But I’m get­ting bet­ter, because peo­ple work with me and have patience.

Evans: Even though you say, ‘I don’t like the men­tal stuff’, you obvi­ous­ly man­age it very well. Do you use tech­niques? Visualisation…?

Tat­ter­sall: Yeah, visu­al­i­sa­tion and breath­ing exer­cis­es. Most of my pain is in my shoul­der and my neck, so I try to visu­alise that these parts of my body that are caus­ing me so much pain aren’t actu­al­ly part of my body, try and detach them from who I am.

Colvin: Not every­one will go on to devel­op chron­ic pain, but what we need to try and do is flag up the peo­ple who are like­ly not to have pain that gets bet­ter. And if they have pain at six to eight weeks after surgery that’s not real­ly get­ting bet­ter maybe we should be try­ing to catch them at that point. The onus is on the patient at the moment to ask for help, rather than us active­ly say­ing we know this is a prob­lem, how can we iden­ti­fy who has the prob­lem, and make sure they get the help ear­ly, rather than wait­ing until the patient actu­al­ly feels strong enough maybe to ask for help?

Because I think that’s one thing that’s impor­tant – when you go through can­cer treat­ment you’re maybe not able to ask for things, you’re vul­ner­a­ble, you’re a patient. And it’s maybe only when you’ve got through the can­cer treat­ment and things have set­tled – and that might take a whole num­ber of years, actu­al­ly, before they say ‘actu­al­ly, this is not good enough, I have to get some help with this’. And I think the oth­er thing with can­cer patients, is some­times they’re just sick of com­ing to hos­pi­tal, so maybe we should be try­ing to get the help out there into the community.

Evans: When you say get­ting help out there into the com­mu­ni­ty, what do you mean?

Colvin: Mak­ing sure that GPs, those work­ing in pri­ma­ry care, are aware that it’s a poten­tial prob­lem, so that when they go to their GP their GP is ask­ing about it. Or maybe it’s the physio, or the prac­tice nurse. And if they ask about it they know what to do, how to direct the patient, either with some basic self man­age­ment, or maybe just start some basic med­ica­tion that might help man­age things.

Evans: We’re in Edin­burgh today, but Maggie’s Cen­tres are around the Unit­ed Kingdom?

Ander­son: That’s right. So you’re sit­ting in the first Maggie’s Cen­tre which this year is 20 years old. And in 20 years we’ve devel­oped 20 cen­tres across the UK or inter­na­tion­al­ly. So by the end of 2016 there will be 20 built cen­tres, which is com­plete­ly extra­or­di­nary for me to be able to say. I’m for­tu­nate enough to have been involved with Maggie’s for the last 18 years and to see that growth has been huge­ly refresh­ing and reward­ing, but incred­i­bly sur­pris­ing as well. All of our aim and ethos is about mak­ing sure that peo­ple affect­ed by can­cer have access to the best lev­el prac­ti­cal and psy­cho­log­i­cal and emo­tion­al sup­port that they can have dur­ing and beyond their expe­ri­ence of cancer.

Evans: I live in Swansea in West Wales – the Maggie’s Cen­tre is a fan­tas­tic look­ing build­ing under­neath the mater­ni­ty ward. Could any­body go in there just for the experience?

Ander­son: With­out ques­tion! So although all of Maggie’s Cen­tres are can­cer sup­port facil­i­ties, they’re also com­mu­ni­ty resources and a lot of peo­ple just out of inter­est, to look at what is an extra­or­di­nary beau­ti­ful build­ing, designed by Japan­ese archi­tect Kisho Kurokawa. Go see it, go see the space out­side, go see the space inside. Sarah and the team who work there would wel­come you with open arms.

It’s a beau­ti­ful space and it’s a space that is designed to sup­port the Swansea and West Wales com­mu­ni­ty in what­ev­er way they wish. It has a direct rel­e­vance to can­cer, but the more peo­ple that know about the cen­tre the more able they are to sign­post friends, fam­i­ly, col­leagues, peo­ple around to the cen­tre, if they are affect­ed by a diag­no­sis. So my encour­age­ment would be, go visit.

Evans: And also just going to see and talk to peo­ple in any of the Maggie’s Cen­tres, I guess, goes quite a long way to dis­pel some of those myths about cancer.

Ander­son: I com­plete­ly agree. And as you walked in today you would have felt an atmos­phere that you may not have expect­ed to feel. It’s a very up, very alive, very bright envi­ron­ment, which doesn’t have the assumed heav­i­ness and dis­tress of what most peo­ple have an imag­i­na­tion of what can­cer might mean. So for that rea­son it’s worth going to any of the centres.

Evans: And you can find out more about Maggie’s Cen­tres and their loca­tions at their web­site which is maggiescentres.org. I referred to Macmil­lan Can­cer Sup­port ear­li­er, their web­site is macmillan.org.uk. And I’ll just remind you that whilst we in Pain Con­cern believe that the infor­ma­tion and opin­ions on Air­ing Pain are accu­rate and sound based on the best judge­ments avail­able, you should always con­sult your health pro­fes­sion­al on any mat­ter relat­ing to your health and well­be­ing. He or she is the only per­son who knows you, your cir­cum­stances and there­fore the appro­pri­ate action to take on your behalf.

Don’t for­get that you can down­load all edi­tions and tran­scripts of Air­ing Pain from Pain Concern’s web­site which is painconcern.org.uk.

Now, we talk a lot in pain self-man­age­ment about the glass that’s half full as opposed to the glass that’s half emp­ty. Last words to Claire Tattersall:

Tat­ter­sall: You know I can have my down days like every­body, but as long as I wake up every morn­ing, I have to take a dis­gust­ing amount of painkillers and med­ica­tions, I’ve got a niece and a nephew who are three and one and they just make every­thing worth­while. They make me smile, they make me get out of bed every morn­ing and I try and ignore the pain. If I’m hav­ing a down day then my pain is worse. This morn­ing I spent with my niece and nephew, so my pain wasn’t too bad, ‘cos they made me smile and gave me cud­dles and told me they loved me. And if I hadn’t been through all the pain and treat­ment that wouldn’t happen.


Con­trib­u­tors:

  • Andy Ander­son, Can­cer Nurse, Maggie’s West­ern Gen­er­al Hos­pi­tal, Edinburgh
  • Claire Tat­ter­sall
  • Dr Les­ley Colvin, Consultant/Reader in Pain Med­i­cine in the Uni­ver­si­ty depart­ment of Anaes­the­sia, Crit­i­cal Care and Pain Med­i­cine, West­ern Gen­er­al Hos­pi­tal, Edinburgh.

More infor­ma­tion:

Find out more about the organ­i­sa­tions fea­tured in this programme:

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