Love to meet and share

[fabia]

Hi all

I am nearly two years post colon cancer diagnosis and I am a 50 year old woman and live in Greater Manchester/ Bury area and would love to meet up with others in a similar situation to me. I have looked all over the area to find a support group and have found nothing as yet.

If you know of a group could you please sign post me or if you are in a similar situation to me maybe we could set one up. To share tips, encouragement, keep fit, recipes, meditation etc.

Fingers Crossed

Fabia xx

[Penny2]

Hi Fabia, the Penny Brohn Centre is quite unique. I am sure you will find great support from them if you go along, but the way I have managed is to find people in my local community who have the same mindset. Find a Reiki practitioner, practice Meditation, and perhaps yoga, all these things help still the mind and empower you to self manage anxiety. Thankfully, after badgering my MP for years, I believe complimentary therapies and healing are being recognised, and brought into mainstream care system now, but it is sporadic, and dependant on where you live. Finally a local Hospice has realised a new centre in Hampshire with the same ethos, so I am so excited to see a pattern emerging..... but keep pushing for the same standard of care where you live, and recognition of the benefits. The Penny Brohn do now have a Living Well Course which they are taking around the country, free at the point of delivery. It may well be this is available at your local hospital, or at the Macmillan centre ask them. There are other good support networks, Cancerucan on Facebook, may be able to direct you to something in your area, also Yes To Life .

Love and Light Fabia, stay strong

Penny xx

[fabia in reply to Penny2]

Hi Penny

Thank you for your kind reply.

I have looked at the sites you have recommended and have just booked myself on a lifestyle choices and Cancer seminar in Manchester that I found on the Yes to Life website which is in November. I think that is the key as you say to find likeminded people who have a positive outlook, maybe that will be my start point. I will also look to see Penny Brohn is advertising a local Living Well Course to me. I have been once to the local cancer centre but was in a state of high anxiety but that was a while ago and I am in a much better place now emotionally. I find it interesting that you have gone to your local MP. what changes have been implemented by you badgering him, that sounds interesting maybe that is something to pour my energy into.

I have attended a yoga class this morning and practice gratitude with positive affirmations.

I have also found somewhere to practice meditation

Thank you one again for taking the time to answer my post.

Love and light

Fabia xx

[Penny2 in reply to fabia]

Hi Fabia, when I visited the Penny Brohn Centre their 'alternative' view was not common knowledge, so I had to 'find' the centre myself, I wasn't told about it at all by my Oncology team. This started me thinking, why not? I investigated and discovered many Oncologists either weren't aware, or didn't want to acknowledge the alternative view, so I took this to my MP. He in turn was very supportive, eventually the Penny Brohn Centre ethos was recognised and Pat Pilkington along with Liam Fox as Host, launched the Living Well Course at the House of Commons. I think putting pressure on MP's to champion a cause is very theraputic, I felt I was contributing, allbeit in a very small way, to help change the way aftercare is delivered.

The new centre down here can only be the start of more similar centres across the country as many more people become aware of the benefits and support available through alternative therapies.

I would recommend getting involved, try to inform all those you know about the Penny Brohn ethos, nurturing the soul, caring for yourself and your emotional state...... the best advert of all is your own journey, your own tenacity and survival. Well done you have come such a long way.

Bright blessings

Penny x

[fabia in reply to Penny2]

Hi Penny

I did stand for election for Governor of Bury for the Christie Hospital but did not win. and realised that I shelved everything i was going to do for cancer patients but your post has encouraged me to get in touch with my MP.

I have spent the morning finding his contact details. It just shows what contact with like minded people can do, so thank you for that. So you are saying that the Living Well Course is recognised by the House of commons? so I can mention this to my MP.

When you say the new centre down here what do you actually mean by that?

Has it been set up with direct campaigning from you and the needs of the community?

I did find Penny's site whilst doing my own research whilst I was having chemo which I actually always referred to as Healing Therapy I never ever referred to my journey as a fight which has purely negative connotations for me. I asked my oncologist if i could take spirrullina whilst I was on healing therapy to help with my fatigue he said he preferred me not so I didn't take it

Sorry its all questions.

I would love to be able to give moral support to people going through this life changing diagnosis and grasp at the silver lining that it defiantly changes your outlook and my roses do smell much sweeter as does greeting the morning each day I wake up.

Love and light on your journey.

Fabia xx

[Penny2 in reply to fabia]

Hi Fabia,

Yes, I was diagnosed with Breast Cancer in 2009, and my experience with chemo and aftercare were dreadful so I decided to change hospitals, in the hope of getting better care. This didn't happen. I waited a month for my notes and care to be transferred across to another hospital, but within that time, I stopped all treatment, and felt much better. I went for a Reiki Session at my local MacMillan centre (where they were only just 'allowing' alternatives to creep in as a support in those days), and my life changed that day. The Reiki practitioner advised me about the Penny Brohn Centre, and so I decided to go along for a 3 day Retreat. I asked my new Oncology Consultant if he would support my decision to not have any more chemo, which he did, and the rest is history. The PB had managed to get funding to support a national distribution of their Living Well Course by 2011 which was then made free at the point of delivery. Sadly it has been a struggle to get recognition for complimentary and alternative treatments, but thanks to the tenacity of Pat Pilkington (who was an inspiration) the course was eventually taken up in centres and hospitals around the country.......and Liam Fox hosted the launch of the National programme for the Living Well Course in the House of Commons, I think November 2011! My MP was very supportive, I am not sure if he influenced the opening of a new centre down here in Hampshire.........but, the centre that has opened is working very much on the same lines at the PB. I know the Hospice has great support from local people, and I am sure there have been many campaigns to get something up and running, which thankfully has come to fruition. The Coates Centre is attached to the Oakhaven Hospice, and I believe they got a grant from the D of E for £560K to create the centre, which now operates to support patients and Carers in the community by offering wonderful treatments, meditation groups, mindfulness and counselling. Wonderful!!

Everything is far more rosey for me these days, and I hope the centre will continue to evolve and blossom as a result.

Take up the baton and run with it xxx

All the best

Penny xx

[jeanjames]

Hello Fabia - good to meet you. Like you I was diagnosed with cancer of the colon about a year and a half now. Fortunately once the tumours were removed there was no sing of further cancer. They removed all but 12/14 inches of my colon and joined it up. There was no need of the bag some have to have. I was relieved to have surveyed the operation and now further down the line I am coping quiet well. I should not each as much fibre as I do but's it's very difficult when I love vegetables and a keen gardener grow most of my own. And if I do go overboard with the fibre - then I suffer the consequences.

I have had check ups since and eveything appears okay. As you must know this is major surgery and it took time for the body sand mid to overcome the trauma. I would love to know how you are now and how you are coping.

I look forward to hearing from. Do stay in touch.

I would be willing to set up a communication with other fellow cancer colon people.

I hear good reports of the Penny Brohn Cancer care - have you considered going?

Look forward to hearing from you

Sending you healing thoughts

Jean

[fabia in reply to jeanjames]

Hi Jean

Thank you for taking the time to answer my post.

I am unsure how much of my colon was removed and luckily I do not have a stoma, I had a fantastic medical team looking after me. I had to have a full hysterectomy at the same time and I now have been told I am now entering the menopause. I had 8 cycles of chemo therapy and suffer with chemo brain....the oncologist failed to tell me that bit....but I am doing well and am in remission and looking to change my diet and lifestyle to keep me well. I have never spoken to anyone who has had the same operation/diagnosis as me and it's good to share, but whish I had met you under different circumstances.

I like you am a keen gardener and grow my own vegetables and want to make my plot bigger for next years growing season....reclaiming some waste land.

I have also had major problems with eating a high fibre diet as I too love veggies and fruit and have recently been on a raw food retreat and want to maintain my wellbeing by eating a healthy but as you know the digestive system works very fast on high fibre food.

I have done lots of research on Penny Brohn and her journey and have implemented some of her ideas in my life...I will be looking at a local living well workshop.

Once again thank you for answering my post and you healing thought which are much appreciated.

Love, light and healing

Fabia xx

[Helpline2]

Hi Fabia,

It's great to see that you're already linking up with people in a similar situation to you on Health Unlocked. With regard to Living Well courses, at the moment the closest one to Manchester is Mirfield in West Yorkshire which looks like it is about an hour away from you. The courses that we run away from our centre are non-residential and usually over a few days, with this one being over 3 Mondays at the end of January/beginning of February.

You may find that coming to Bristol for a residential course over 2 days may be more convenient than travelling back and forth to West Yorkshire. Our residential courses are run 3 times a month and if you were looking at booking now you could probably get into a course around the beginning of November.

With regard to local support, you may find it helpful to have a look on Macmillan's website to find local groups. I've had a quick look and there seems to be a Bowel Cancer support group: macmillan.org.uk/in-your-ar... miles from you. It looks like it's the other side of Manchester to you so at least a 30 minute driver but you may find other support groups by searching your address here: macmillan.org.uk/in-your-ar...

If you'd like more information about the services that Penny Brohn provide or if you'd like help finding local support please feel free to ring our helpline on 0845 123 2310 or email [e-mail]

[fabia in reply to Helpline2]

Hi

Thank you for your reply and the information about courses in Mirfeild as you say may be best to travel to Bristol for a residential at the moment I have a few scattered appointments to attend but will ring the centre when things are a little calmer. Could I as why the course is run in Mirfeild?

I had looked at the Macmillan site for support groups but didn't go as far south as the one you pointed out so thank you for pointing that out, and will investigate.

Thank you once again for answering my post

Fabia

[Helpline2 in reply to fabia]

The course is run in Mirfield because of funding from that particular City Council, as our courses away from Bristol are generally partnerships with other organisations. We are developing new partnerships all the time and hope to cover more of the country in the future as we expand. We look forward to hearing from you in the future when things are a bit calmer for you.

The Helpline Team

[fabia]

Thank you so much for your reply.

I will contact the centre soon.

Take Care

Fabia