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HELP US TELL OUR STORY!

On behalf of the Macmillan Horizon Centre

Could you help us tell the story of the difference we make?

∼◊◊ WORKSHOP ◊◊∼

for Horizon Centre users and volunteers

Friday 27 October, 11am – 1pm with free lunch provided

 The Horizon Centre is here to make as much difference as we possibly can to people affected by cancer across Sussex.

Throughout October we’re trying to map out all the differences we make – to those who visit the centre and those we contact out in the community; to those who volunteer with us; and to our various NHS partners. After that we’re going to plan how we can measure the difference we make (our impact) and tell others our impact story.

We’re running a workshop to understand different views about how we make a difference and would love to invite you to attend.

Click on this to see the poster

What will you be asked about if you take part?

This workshop will look at our story from the perspective of those who benefit from our support.  We’ll chat as a group and look at questions like …

  • What difference do YOU think we make and HOW do we make a difference?
  • Are there OTHER THINGS we could do to make a difference?
  • How could we involve you and others affected by cancer in measuring our impact and telling our story in the future.

What will happen in the workshop?

The workshop will be delivered by someone independent from outside the Horizon Centre and will involve discussion, feedback, meeting others who use the centre or volunteer with us, sharing ideas and views, probably sticking post-it notes on the wall and definitely eating cake! You can contribute as little or as much as you like without pressure. We want it to be an interesting and enjoyable session where everyone can take part and all views and ideas are welcomed.

Please let us know if you’d like to attend. If you can spare time and come along, please e-mail horizoncentre@macmillan.org.uk  or call 01273 468770

With Kind regards.

Jane Viner
Macmillan Engagement Lead – South East

‘LET FOOD BE THY MEDICINE AND MEDICINE BE THY FOOD’ Hippocrates

When I heard last April that the Macmillan Horizon Centre was offering a short cookery course for cancer patients, I immediately decided to enrol, together with Joan, also a C-Side member.

‘We are what we eat’: Hippocrates, the father of modern medicine, understood this 2,500 years ago!

Today, we all know the importance of eating a balanced diet, but this is especially crucial, without a doubt, following a debilitating operation or whilst undergoing medical treatment, not forgetting the stress that being diagnosed whit cancer can also create in the first place. A healthy diet, with the right vitamins and minerals can make such a difference to our well-being and recovery, both physically and mentally. Anxiety and depression can actually, on occasions, be linked to a poor diet. So, apart of course from medical treatment, seriously paying attention to what we are eating, at a time when we may feel the least like doing so, can give us the best chance to recover from this illness, especially as a positive mental attitude is so important for the healing process to take place effectively.

The course we attended last April was divided into 4 sessions of 2 1/2 hours each, over a period of 4 weeks, described as: ‘Eat a rainbow’, ‘Breakfast boost’, ‘Protein positive’ and ‘Quick and easy meals’. The aim of the course was to help us achieve a well-balanced diet, according to our needs, from breakfast to main meal, by putting together a collection of reasonably simple recipes that we could realistically be able to prepare in our own home, bearing in mind that when you are not feeling well, you may not feel like cooking, especially if it involves preparing a complicated dish! Tiredness and not feeling like eating at all can also be an issue, so the recipes were light but delicious and nutritious, and fun to prepare.

The course also provided an amazing opportunity to ask any questions from an expert nutritionist in a relaxed and friendly atmosphere. This is so important for anyone recovering from any form of cancer, but especially from bowel cancer.

It was organized by Emma, the Cafe Manager at the Horizon Centre and Mhairi, a registered dietitian, not forgetting the Centre’s volunteer staff, always on hand to help with anything else needed.

The first half of each session was spent preparing the food. All the ingredients (all fresh and of top quality!) were kindly provided by the Centre. We were all given several choices of recipes, according to our preferences. We were also handed various very informative food fact sheets (e.g. ‘A closer look at red meat’ and ‘fruit & vegetables – how to get five-a-day), and we were also introduced to ‘mindful eating’.

The second half was spent eating together the food we had just prepared. This was a great social aspect of the course. There is nothing more powerful and uplifting than to share a meal with someone who has gone through the same life changing experience as yourself, whatever this may be.

Furthermore, the first floor room at the Horizon Centre is so bright and spacious, it was really pleasurable to have a leisurely meal in such an environment. Everything is brand new, the kitchen and cooking utensils all shiny and immaculate… all conducive to give you a sense of normality and really help you start enjoy life to the full again.

In conclusion, I would strongly recommend this course to anyone, but especially someone recovering from bowel cancer. We are so blessed, in spite of our health problems, to now have a place like the Macmillan Horizon Centre on our door step, offering us all these facilities. I am personally very grateful to everyone at the Centre for their help and dedication. This course, along with C-Side of course, has definitely played a part in my recovery. I am glad I did not let this great opportunity pass me by. (Nicole Pendlebury, September 2017)

Below, an example of a very easy, but delicious recipe, a high protein meal with healthy fats from an avocado:-


Tuna, avocado & quinoa salad:- (prep: 5 mins / cook: 20 mins)

INGREDIENTS:-

100g quinoa,
3 tbsp. extra virgin olive oil,
Juice 1 lemon,
1/2 tbsp. white wine vinegar,
120g can tuna drained,
1 avocado stoned, peeled and cut into chunks,
200g cherry tomatoes on the vine, halved,
50g feta crumbled,
50g baby spinach,
2 tbsp. mixed seeds, toasted 

METHOD:-

  1. Rinse the quinoa under cold water. Tip into a saucepan, cover with water and bring to the boil. Reduce the heat and simmer for 15 mins until the grains have swollen but still have some bite. Drain, then transfer to a bowl to cool slightly.
  2. Meanwhile, in a jug, combine the oil, lemon juice and vinegar with some seasoning.
  3. Once the quinoa has cooled, mix with the dressing and all the remaining ingredients and season. Ready to serve!

Bon appetit,

Nicole


Keep a look out on this site for details on the next ‘EAT WELL, FEEL BETTER’ course at the Macmillan Horizon.

Denise’s Story

I have survived four cancer operations, spaced every 2-3 years since 2010.  The likelihood of a recurrence is considerable so I have learned to live with this.  Each operation involved a resection to my large bowel, although the cancer was in my peritoneum (the area inside the abdomen but outside the bowel).

More accurately, I have cancer of the appendix – Pseudo Myxoma Peritonea or PMP for short.  It is rare and starts at the end of the appendix.  When the tumour burst in 2010, cells were sprayed all over the peritoneum and they lurk there for years, hence my acceptance of a probable recurrence. 

It was almost impossible to diagnose as initially the tumour didn’t show up on a CT scan and of course a colonoscopy didn’t detect anything outside the bowel.  My first operation was as a result of an elected appendectomy – I knew something was wrong and for a year or more was told it was probably a grumbling appendix.  The tumour at the end of the appendix had penetrated the bowel, but not the lymph nodes, so it was a Dukes B diagnosis.

The tumour was removed, and I experienced 6 months of chemotherapy which virtually wiped out half a year of my life.  I was unable to do anything. I was totally without energy and with painful neuropathic symptoms in my mouth, hands, lower legs and feet.  The tumour returned in 2012 and I underwent a second operation, again at Brighton RSH.  But in 2014 yet another tumour developed and I was referred to Basingstoke, one of two specialist hospitals in the country that deals with peritoneal malignancy.  There I had what is called a cytoreduction – the removal of several bits inside the peritoneum including ovaries, womb and greater omentum, a resection of some of the small bowel and the removal of the abdomen wall on the RH side.  This was replaced with a mesh.   I feel like Bionic Woman!  The operation lasted 13 hours.

Although I was flushed out with hot chemotherapy and told that all visible cancer cells were removed, a tumour again returned in November 2016.  I was eventually operated on in March 2017.  My bowel had totally seized up and I didn’t eat for 10 days.  I was given palliative advice and planned my funeral.  The family gathered at my bedside and we said our farewells. At the last moment and when I was preparing myself for my demise, I was again accepted into Basingstoke as an emergency patient.  They performed an absolute miracle, wading through all of the scar tissue, removing the tumour (which had not only pressed on and stopped the bowel from working, it had wrapped itself round the femoral artery – I could have lost my right leg) and they saved my life.  The fact that I am left with a permanent stoma is merely a small inconvenience.

To say I am grateful to the NHS is an understatement! I owe my life several times over to both Brighton and Basingstoke hospitals and have nothing but praise for the clinical and nursing staff for all of their help, support and expertise.

But, I have learned several lessons since that first pain in my abdomen:

  • As soon as you feel any discomfort in the abdomen, ask for a referral to a consultant and for a CT scan. I hoped it would go away and as I felt ok I wasn’t too worried.  I left it for at least 18 months.  I should have insisted on a referral.
  • Brighton hospital (level 9) is amazing, but they don’t do cancer operations outside the bowel. There are too many essential organs and arteries in the peritoneum.  They knew that my cancer was on the appendix, but only referred me to Basingstoke for operations 3 and 4.  This might have been for financial reasons.  I don’t know.
  • Urge your oncologist to revise your chemotherapy prescription if you are unhappy with it. Mine was the highest dose as I am very tall.  This seems so arbitrary and my dose was almost halved at a stroke.  This was after 3 months.  Again, I wasn’t one to complain!  Even the half dose wiped me out.  As a result the MDT have agreed not to put me on chemotherapy following my last 3 operations. 
  • Always go to an oncologist’s and consultant’s meeting armed with questions and take someone with you as it is so easy to forget what is said. Ensure that they explain blood test results and CT or other scan results in simple, non-medical terms.
  • C-Side has given me so much confidence, information and friendship. I wish I knew then what I now know when I started off on my cancer journey.  I have learned the best way to find out what I need to know; what is worth worrying about and what value a shared experience with other cancer patients can do for my confidence and outlook on life.

    Denise
    Seaford
    8th September 2017

I’m 35 and I may suddenly have lost the rest of my life. I’m panicking, just a bit.

It’s been a while since I put a piece of writing in the public domain, but suddenly I have a lot to get off my chest, well my colon actually.

Just three weeks ago life was good. Correction. It was awesome. The newest edition to our family had arrived on Christmas Eve, joining his two sisters aged 5 and 3. A month later we were on a plane home to Sydney, having spent four great years working for Google in California. My beautiful wife had been working at a start-up on NASA’s Moffett campus and was worried about finding something equally interesting in Australia, but she managed to land a very similar gig with an innovative logistics start-up in Sydney. We’d come back primarily to be closer to family, but also to pursue a dream of setting up a family farm in partnership with my parents – intended as a great place to bring up our three kids but also as a new side-line income stream. We’d spent every weekend scouring Sydney for areas that met our criteria (good schools, commutable, cost of land etc) and we were settling on Kurrajong in Sydney’s west. I was just getting into a training routine for the CitytoSurf run having done the Monteray Bay half marathon a few months prior.

I’m 35 years old.

On July 19th I went for what I thought would be a routine GP visit. In my mind it was primarily to re-establish a GP relationship in case my kids needed an urgent care visit (the practice is literally around the corner from our place). I’d also noticed a bit of unusual bleeding from, well, my back passage and very recently a change in bowel habit. I wasn’t alarmed by either of these symptoms but my GP was concerned enough to refer me for a colonoscopy. So began the roller coaster.

I’ll skip much of the detail but in short the colonoscopy revealed a lesion which they believed to be malignant. This was confirmed by a biopsy three days later. A CT scan revealed suspicious swelling in the surrounding lymph nodes so I was booked for a PET CT scan – where radioactive sugar is injected prior to a CT scan to highlight cancer in your body. That PET scan changed the game because it not only confirmed cancer in the surrounding lymph nodes but it also found two smaller tumours in my liver, which the original scan had not identified. So, by August 2nd I was confronted with a stage 4 colorectal cancer diagnosis.

Now for those (like me) who are not all that familiar with cancer, you never just “have cancer”. Cancer is really the name given to a broad family of related diseases. There is also a fairly well established methodology for measuring the progress of any cancer. Here’s the short version:

Stage 1 this usually means that a cancer is relatively small and contained within the organ it started in.

Stage 2 this usually means the cancer has not started to spread into surrounding tissue but the tumour is larger than in stage 1. Sometimes stage 2 means that cancer cells have spread into lymph nodes close to the tumour. This depends on the particular type of cancer.

Stage 3 –  usually means the cancer is larger. It may have started to spread into surrounding tissues and there are cancer cells in the lymph nodes in the area.

Stage 4 –  means the cancer has spread from where it started to another body organ. This is also called secondary or metastatic cancer.

These days having a stage 1 cancer is generally no big deal. Stage 4 however is not too good at all. Doctors use ‘survival curves’ – survival statistics for people with your cancer and your stage of progression – to provide some kind of prognosis. In my case, most published survival curves suggest that only 10% of people are still alive 5 years post diagnosis. Now, I’ve since learnt that there are many reasons not to focus too much on these statistics. My prognosis is likely better (none of my doctors will venture a guess) but it is no better than 50/50. And even if I live beyond 5 years, my life expectancy as a survivor of metastatic cancer will almost certainly be much curtailed.

Over the next 6 months I’ll be doing radio therapy and chemotherapy and at some point I’ll have two surgeries, one to remove a section of my colon and the other to remove two chunks from my liver. This for a guy who’s never been seriously sick in his adult life, and who happens to have a major needle phobia.

I know this is so cliched, but life really can change overnight. Suddenly I can’t be sure I’m going to see my new son’s 5th birthday, or even his 2nd. It’s now highly unlikely I’ll see even my eldest daughter get married. I probably won’t know what careers my children pursue. And as for my own career, it’s come to a screeching halt. I’m also struggling to imagine what it might look like in future if I do manage to survive this, because my outlook on life is already so fundamentally altered I don’t think I can just go back to my old world.

Life now is a weird kind of duality.

On the one hand I must be optimistic – I must believe I can beat this cancer to get through the next six months. On the other hand I need to be pragmatic and prepared for a scenario where the treatment is unsuccessful and I’m told one day that I have X months to live. As a husband and dad of three kids under five that scenario is obviously terrifying, but it also has many practical implications that I feel I need to prepare for – financial readiness, a mechanism to ensure my children remember me, legal authority for my wife over our assets, etc.

One of the things I’m struggling most with is this concept of legacy. I’m a planner. Before this diagnosis I’d been thinking of my 1st 35 years – aside from being a ton of fun and travel – as preparation. I felt like I was building a platform (savings, networks, skills, experience) that I could then use in my second act to make a real contribution, to “make my mark”, to build a real legacy for my kids. Perhaps that was a mistake on my part, because I may have no time to do that now. I guess I’m panicking a little.

I feel like I have so many messages to deliver to the blissful masses from my now precarious vantage point, from the importance of early precautionary doctor visits to the merits of life insurance. But putting pragmatism aside, there is one thing I’d urge everyone to do. Stop just assuming you have a full lifetime to do whatever it is you dream of doing. I know it sounds ridiculously cliched, and of course you never think it will happen to you, but let me assure you that life really can be taken from you at any time, so live it with that reality in mind.

Oh, and please stop complaining about the small stuff !

www.scottgriddle.com

Colostomy Day – 7th October 2017

Whether it be a colostomy, Ileostomy or urostomy, the fact is stoma surgery saves and improves lives. People with stomas work, play, have children, raise families and run marathons, but still there is a stigma attached to  having one. We need to change this. Let’s celebrate how super stomas are! Click on the Colostomy Association’s logo to find out more.

For our part C-Side are also supporting the Colostomy Association message by holding a “Cocktails & Mocktails” event at St. Margaret’s Cottage on the 7th October from 6.00 to 9.00 p.m. Click on the drink for more information. Please come along, all are welcome.