WHAT ARE THEY?
At first I thought they weren’t for me – I didn’t want to talk to a lot of other patients moaning about their aches and pains.
Then I was curious, and went to a Look Good, Feel Better session, and found these groups aren’t moaners at all – they run lively places that are full of laughter, with the bonus that often – over a cup of coffee – someone mentions something – could be about a new treatment, or just a simple solution to help with a side effect – and you come bouncing home to try it out.
So see list below of centres, and do let me know of others.
There is a lot of useful information I picked just having a chat, that was extremely helpful, not least the fact that speaking to others, I realised that the doctors had tried to make out that I was unique and no-one else reported the side effects I had. Talking to other patients, I realised that thousands of us have the same problems – don’t listen to doctors!
However, you may need to try out a centre. The first centre I chose was a bit ‘too much’. We had to take a two-day foundation course, which consisted of lots of lecturing about our inner chakra and other-wordly things. After a time I tip-toed out, only to bump in to another person – a doctor who also had breast cancer. “Oops – I have just been phoned that I am urgently wanted in the surgery”, she explained. What she really meant was she couldn’t take the intensity either – but out of the original 12 of us, ten stayed the course, so I was in the minority.
However, I soon found other centres, and they don’t demand foundation courses. In fact they all seemed pretty laid back, and the only thing that seemed obligatory was to have a good laugh.
Although research in the States has proven that those who use a support centre – for a short or long time – on average live longer than those that don’t, the NHS leaves much of the after-care and support to the cancer charities, and expects them to help with our care after we have finished treatment. Don’t know about you, but I was handed a batch of leaflets printed by charities – and that was that.
The charities raise an enormous amount to fund this and other services, and the NHS can sit back knowing someone else is doing the work.
What they do for us
After I had finished my treatment, the Oncology nurse suggested I contact my local cancer centre, a charity. Frankly, the idea horrified me. In the past I had helped raise money for these charities – I didn’t think I was raising it for myself. Eventually I plucked up courage, and found that no-one is judgemental, but everyone wants to help.
Across Britain there are organisations such as Macmillan, Maggies, Paul D’Auria Support Centre, etc. that offer a welcome and help. They are all slightly different, but at every one it seems obligatory to offer you a cup of tea or coffee the moment you come through the door! That’s how welcoming they are.
If you haven’t visited a cancer centre – do find your nearest and GO. Your Clinical Nurse Specialist should be able to give you the address. If you don’t have one, ask PALS or the information centre at the hospital.
There is always someone there to listen and point you in the right direction. At the Macmillan Centre in Chelsea and Westminster Hospital, Russ Hargreaves has an ever-open door and has comfortable chairs to sit in whilst you ask for information. Like other centres, we are given a welcoming environment, but the organisers always have the problem that their funds might dry up, and they have to close.
Recently, the Cancer Resource Centre in Battersea (now the Paul D’Auria Centre) celebrated its 25th Anniversary; which reminds us how long we have depended on these organisations to offer help. Here too, there is always a drink – and some wonderful cakes and biscuits – Honor and Claire and the others always seem to have a plate in their hand offering you something. There is also a large library, comfortable squishy sofas, and a chance to kick off your shoes and chat. And if proof were needed that the Centre does a fantastic job of supporting cancer patients, last year’s AGM was standing-room only, with over 125 present.
In all the libraries I have visited, I have looked up side effects of hormonal drugs. Yes, these are mentioned. But there is no basic information on what products will help us deal with these. So I asked NHS Direct if there is funding available to help improve provide this information. Somehow, I am not holding my breath!
MACMILLAN CANCER INFORMATION AND SUPPORT CENTRES
Here you find clear information and face-to-face support.
Visitors get to talk through issues and concerns with Macmillan staff and trained volunteers. The centres hold booklets, leaflets, videos and other sources of information about cancer, and some centres offer other services such as self help and support groups, or wonderful complementary therapies.
Mobile Macmillan Cancer Information Centres
These visit high streets, communities and events to bring free, confidential information and support to everyone. You don’t need an appointment, and you’re welcome whether you have a cancer diagnosis, are visiting on behalf of a friend or relative, or are worried about cancer.
On-board Macmillan cancer information specialists provide confidential support and information tailored to your needs.
For information on the Mobile Centre for London and the South East (left), contact Rowena Howell on 020 8222 9043 or email firstname.lastname@example.org
For information on the Mobile Centre for the East Midlands and North East (below) contact Helen Tuvey on 01904 756406 or email email@example.com
LIST OF CANCER and other support centres
Breast Cancer Haven (Fulham and Hereford) You have to do a two-day Foundation course before you can take advantage of therapies. http://www.breastcancerhaven.org.uk
Barnet and District Cancer Link Wednesday Drop-ins at Catholic Church of Mary Immaculate, Union Street, Barnet. Phone Eve 020 8446 3104 Weds. 1.30 – 4 pm. They supply physiotherapy, reflexology, manicures, etc. – but expect there is a waiting list!
CANCERactive is an independent charity that aims to help people increase their personal odds of beating cancer. To achieve this they believe in empowering people – to understand the possible causes and to build effective integrated therapy programmes, using well-researched, Complementary and Alternative therapies not merely Orthodox ones – the best of the best. Their motto is Intelligent Information. Independent Voice.
They also have an excellent listing of cancer support centres all over the UK – just click on the county and up comes a list of some of many centres. www.canceractive.com
CANCERKIN is a unique breast cancer centre, based in North London at the Royal Free Hospital, just off Hampstead Heath. Treat the patient, not just the cancer, has always been their maxim, and meetings there are lively, full of fun, and lots of sensible information. At one I went to, the hostess was Dr. Doris Lister, who is just the kind of doctor you would love to have – and was full of sensible advice that was practical. With nearly 20 years’ experience, it’s not surprising that patients are referred from 35 hospitals within the London region to take advantage of their range of services.
Whether you’ve just been diagnosed with breast cancer and want more information, are undergoing treatment and need some TLC, are caring for someone with breast cancer and feel somewhat helpless, or if you’re concerned that you might be at risk, Cancerkin’s dedicated team is on hand to support you and your family.
Cancer Resource Centre (now known as Paul Daria Cancer Centre). This is oldest of centres (25 years old) and has Prof. Karol Sikora as its President. Very welcoming and lots going on (see below).
Cherry Lodge Cancer Care Offers a Cancer Information Nurse, Welfare Benefits advice, Home Visiting, Massage, Reflexology, Reiki, |ilates, Qi Gong, Yoga, etc. and Workshops. 23 Union Street, Barnet, EN5 4HY 020 8441 7000 www.cherrylodgecancercare.org.uk
Chelsea and Westminster Hospital Ground Floor, 369, Fulham Road, Chelsea, London SW10 9NH. 020 8237-2386. http://www.chelwest.nhs.uk Russ Hargreaves runs a small but very welcoming information centre, with a limited amount of therapies. Lots of sensible books and leaflets, and tea and coffees. And when I need to have medical terms or theories explained to me, Russ does this in incredibly simple, easy-to-understand language. He deserves a Crystal Award!
Fatigue Management Service, Neil Cliffe Cancer Care Centre. Wythenshawe Hospital, Southmoor Road, Wythenshawe, Manchester M23 9LT Tel: 0161 291 2912
The Haven Centre, Blantyre Health Centre, Victoria Street, Blantyre, G72 0BS, Tel: 01698 727884
Lifestyle Club is held at the Darnton Drop In Centre at Tameside Hospital, Ashton – under-Lyne
The Lifestyle Club was founded at the request of the patients who were interested in making healthy lifestyle choices. We initially started out meeting as a group (aka Weight Watchers) with a view to sharing hints and tips between patients, but this has evolved into one-to-one sessions where clients are able to discuss topics (such as fear of recurrence, body image issues) which they prefer to discuss confidentially. http://www.tamesidehospital.nhs.uk/Pages/OurServicesDarntonDropIn.asp
Lynda Jackson Macmillan Centre, Mount Vernon Hospital. Drop-in centre for support and information, telephone helpline, Benefits advice, pre-treatment advice, Complementary Therapies, Relaxation Sessions, regular courses and events. Mount Vernon Hospital, Rickmansworth Road, Northwood, HA6 2RN. 01923-844014 www.ljmc.org
Macmillan They aren’t just for the terminally ill, but have marvellous comforting centres all over Britain with helpful information staff, therapies and treatments, teas and coffees, etc. www.macmillan.org.uk
Macmillan also runs many centres in local hospitals, or privately in members’ homes, etc. If you want to find the nearest to you, go to http://www.macmillan.org.uk/Get_Support/Cancer_support_groups/Search_Results.aspx?c=0
Maggie’s Centres (especially in Scotland) www.maggiescentres.org
Maggie’s Centre, London Charing Cross Hospital, Fulham Palace Road, London W6 8RF 020 7386-1750 http://www.maggiescentres.org Don’t be put off by the extraordinary bright orange building – it DOES have an entrance, but you have to go round to the back and then you fall over it! Once inside, the staff are incredibly welcoming, and there are superb biscuits as well as teas and coffees – plus lovely therapies.
Mulberry Centre This is open every day, with late evenings four times a month. Offers a range of services including Complementary Therapies, rolling programme of Workshops and information on Welfare Rights and Benefits ww.themulberrycentre.co.uk WMUH, Twickenham Road, Isleworth, TW7 6AF 020 8321 5438
Northwick Park Macmillan Information Centre As you go in, there is a wide entrance welcoming you to the Macmillan Information Centre, with Helene Buijs and one of her helpful volunteers ready to answer questions. No-one pounces on you, you can walk around on your own, but pretty soon someone comes up and gives you just the right leaflet, and piece of information you are looking for. There is a regular session dealing with Benefits advice, which when I was there was giving excellent support and information. The Centre reminded me of Aladdin’s cave – you just didn’t know what helpful leaflet was going to be found in the well-stocked shelves – but they have an incredible amount of information to offer. I t says a lot about the centre – I was told that all the volunteers that had been there when the centre opened, are still working, and very happily. Northwick Park Hospital, Watford Road, Harrow 020 8869 5099 www.nwlh.nhs.uk.
Paul D’Auria Cancer Support Centre As they say on their website, not the easiest spelling to remember – but the centre is warm and very welcoming, situated in Battersea, London. If you can’t visit, there is a very caring telephone Helpline; they answer emails from all over Britain, and if you live locally but can’t get out, they have a Home Visit service. Their AGMs are always standing-room only – and food at events is fantastic! The Paul D’Auria Cancer Support Centre, a registered charity, was the first cancer support group to be set up in London in 1983. Since then we have developed many innovations in the cancer support field, including helping to pioneer the use of massage for people with cancer. The Centre has also won two national awards for the quality of its work. 20-22, York Road, Battersea, London SW11 3QS 020 7924-3924 http://www.pauldauriacentre.org.uk
St. Mary’s, Paddington Vicky Harmer runs a ‘fun centre’ with lots going on, and the nice thing is – if you have been treated at a London hospital with no centre, you are welcome to come here. Speakers at their events range from Guide dogs for the blind, to dieticians. Phone 020 7886-1425
Velindre Cancer Centre, Velindre Road, Whitchurch, Cardiff, CF14 2TL. Tel: 029 2061 5888
The Ulster Cancer Foundation 40-44 Eglantine Avenue, Belfast, BT9 6DX (tel. no. 028 9066 3281).
Care Services Department with patient information conferences, support group meetings etc. Counselling life-coaching courses, art therapy, creative writing groups, life stories (reminiscence writing) groups, ‘Beauty for Life’ workshops, a mastectomy and headwear fitting service, a family support service, a freephone cancer helpline (tel. no. 0800 783 3339 Monday – Friday, 9.00 am – 5.00 pm) and a patient advocacy group. Patients, carers and their families can contact for more information via helpline or call in to the centre for a chat or to view leaflets and pamphlets.
Macmillan Support and Information Centre, Belfast City Hospital, 77-81 Lisburn Road, Belfast, BT9 7AB (tel. no. 028 90 699 201)
Cancer Lifeline 44 Alliance Avenue, Belfast, BT14 7PJ (tel. no. 028 90 351 999)
·Cancer Choices, 29 Carland Road, Dungannon, Co. Tyrone, BT71 4AA
·Care for Cancer, 10 Prospect Court, Omagh, Co. Tyrone, BT78 1AR, (tel. no. 028 82 246 599)
·LILAC, 3 Barrack Square, Coalisland, Co. Tyrone, BT71 4JG (tel. no. 028 87 746 600)