Three years ago I got a call from him as he was waiting for the results of his biopsy to come in. It was the first time I heard fear in my friend’s voice.

A few years on and watching him work with this new reality has been an education in living. I have never seem someone fight a war right in front of me and still think about what t-shirt quality they’ll use for the new batch of prints they’ve designed. I’ve never watched someone negotiate and renegotiate their terms of living while finding the art in the most overlooked flowers.

A few months ago he asked me to go to chemo with him to take some pics to show ya’ll out there that it’s not this scary torture chamber we non-chemo types have in our mind’s eye.

Please click on the link to watch his journey -

http://http://thedotspot.net/2011/12/01/my-trip-to-the-chemo-room/

PLWC Cancer Buddies now at Chris Hani Baragwanath Academic Hospital (“Bara”).

21 November 2011.

Pictured at the conclusion of the Cancer Buddies training course in October 2011 are, from left to right:

(Standing): Peter Hers (Chairman, PLWC Johannesburg); Snowy Maphakela, Agnes Mosebekoa, Raynolda Makhutwe, Bev du Toit (PLWC, course lecturer), Lehlohonolo Mokgobo, Sibongile Manyama .

(Seated) Itumeleng Letoaba.

Six volunteers, all cancer survivors who received their treatment at Bara, have been trained as Cancer Buddies and have started providing support to patients at the Breast Clinic.

This initiative is a joint project between People Living with Cancer (PLWC) and BrestSens, an NGO dedicated to providing support to breast cancer patients. The training course was conducted by PLWC volunteers, with the encouragementand support of medical and nursing staff of the Breast Clinic at Bara.

Once over their treatment and on the road to recovery, many cancer patients have a desire to volunteer their services to help newly-diagnosed patients. PLWC provides a structured support system for cancer patients, based on cancer survivors who have been trained to provide first-line support.  Every attempt is made to match patients with someone who has had a similar diagnosis, providing someone who will understand the specific challenges and be able to provide as much guidance as possible.

Chris Hani Baragwanath Academic Hospital is the second largest hospital in the world, with 3 200 beds and 6 760 staff members. Bara is one of the 40 Gauteng provincial hospitals, and is financed and run by the Gauteng Provincial Health Authorities.  It is a teaching hospital for the University of the Witwatersrand Medical School.

Enquiries:

Peter Hers                             083 445 4634

Email: peter@peterhers.co.za

Kwanele Pooe-Shongwe     082 902 7929

Email: batsips@mweb.co.za

1. Medical:He was sent from pillar to post between Helderberg  and Tygerberg hospitals – for weeks – no diagnosis. Sisters more interested in sorting their personal issues out than helping patients. Tygerberg was a nightmare – massive distances he needed to walk, hours he needed to wait after being sent from 1 dept to another, tea time more important than service. Eventually I took him to a GP and between the GP and admitting him to hospice we got action – hospice Dr was livid at the way he had been treated and made contact with Tygerberg. Logistically there is little help – I had to take him to Tygerberg more than once. He was expected to go back time and again for follow up – when he was really very ill.
2. He was a single father, 2 boys with one a minor. Social welfare said it could take them 2 yrs to do a home visit, despite the urgency for him to get a grant. Despite request to hospice and Tygerberg to hasten the process for a disability and child grant – nothing happened. I was supporting the family financially when I could least afford it, but I couldn’t see them go hungry. In the end it took Hose and I 2 days with him having to trek to 4 different places to get all the docs and forms completed. SASA told us we arrived on the wrong day and I had to come back the next week. I begged the security man to help one of his own people to get help – he spoke to a caring manager.
3. Hose went home to die – at first the bus driver would not take him because he was too ill but eventually agreed. East London hospice would not admit him because the family couldn’t afford R300 a day (I thought hospice was free for those who could not afford it – it is here in Somerset West). The local hospital would not take him because there was nothing they could do for him. The family really battled to take care of him the last few weeks. What a way for someone to die. (My own mom died of cancer in her own falt surrounded by loving and caring people).
4. Hose was immensely grateful that I could help him. I got all his paper work sorted out for him: funeral and insurance policies and typed up the process that needed to be followed by the family when submitting claims and made copies of all the required docs and had them signed by the SAP – no one else could have done this for him.

Issues:

1.Our Dept of Health is not patient/service centred – patients are numbers.

2. SASA:  wrong staff with a bureaucratic attitude (how can you tell someone who is dying to come back next week!)

3. Transport to big hospitals is non-existent. How can you expect someone who doesn’t even earn R1000mth to get to big hospitals.

There is lots of work to be done – thanks for championing this issue.

Kersten Mosig

Jambo….I greet you in Swahili!

I am writing to you after returning from Tanzania having climbed Kilimanjaro.

 On the way there, up and down, I carried a pink bra and a “Walking for Cancer Flag” on my backpack and wore a “pink buff”. This created much curiosity, but I believe the message went out as I had the opportunity to talk about , cancer, breast cancer, Reach for Recovery and most importantly, the hope and success stories…your success stories!

 The experience of reaching Uhuru Peak at an altitude of 5895m was exhilarating, and I could go on about the journey for hours…..

After all the congratulations, hugs, handshakes and photos, our group began the decent back to base camp.

I stayed behind for a few more minute to remember my friends who has/ had cancer and those that stood.

 I stood on top of Africa, gazing around me at the sheer enormity of the mountain, then took out my little ice-up paper list with your name written on it. I closed my eyes (not out of the overwhelming fatigue) but to remember each of you.

 The ascent up Kilimanjaro was one of the most difficult things I had ever done – I had to dig deep within to take the next step, to ignore the sub-zero temperatures, the howling wind, the sleet and snow. The cold was unbearable, the effects were beyond the physical. I fell asleep while walking, I hallucinated, seeing purple boot prints in the white snow, and drain covers in the path which I attempted to step over.

Giving up was a ‘rational’ option and sitting down for a sleep so easy……The last few hours up the mountain was all psychological, every step demanded mental effort – there just was no physical energy or strength left in my body!

But all this is just a grain so small in comparison to what you and your family had gone through living and surviving cancer!

 I admire you and respect you for the challenge you faced, how you never gave up and fought to overcome cancer.

 My challenge and achievement of climbing Kilimanjaro is dedicated to you.

As I read my weathered list, I remembered you on top of Uhuru Peak (my list is in no particular order):

1. Jan and Jamie, Whose mom (Michelle) lost the battle to cancer just before Christmas last year.  Jamie you are BEAUTIFUL and such a brave girl. I know that your mom is smiling, as she looks down on you from heaven. Reach for your dreams when you start High school at Wynberg Girls next year.
2. Cheryl Gaynor – You are a strong woman of God, beautiful, courageous and gracious.
3. Melanie Gallie – Your fight is admirable and I respect the way you never gave in. Tara can be a proud daughter and truly bless to have you.
4. 4.       Francois – a man I have never met, but know so well through our mutual friend Wiekus v/d Merwe
5. Siona- your support and love to our family even while you were at war with cancer is admired. You are a beautiful woman of God, an inspiration to us all.
6. Anton Jansen – my old colleague, a giant and warrior of note. Cancer could never stop this champion!  I picture you on top of Kilimanjaro as a mighty warrior, dressed in full body armor holding a victory lance.
7. Andrew Honeyball – my new friend who recently went to war and won. Andrew, your willingness to stay on top is an inspiration – your victory smile in hospital was encouraging! To Nikki, his wife, your strength and support for Andrew is respected- you are a powerful woman!
8. Belinda Nel – a lady I have heard so much about.  I admire your fight and know that we pray for you and Charisse.
9. Cindy Smit- So happy to see your big smile in Fairlady.
10. Duncan Page – Our prayers and love go out to you – Know this that cancer can be beat and you will be be a champion!
11.  Rika Stuart – Standing with LD on top of Kilimanjaro made me feel proud to know your husband. Through him I know that you are a winner. All the very best with your next challenge
12. Coral – Treatment is nearly finished- well done…..as Belinda said “Bald is beautiful, but your new curls will be gorgeous!”
13. Shane Fish- Know that you will be victorious and will conquer cancer. We are with you in thought.
14. Shelley Redelinghuys- Well done on your brave journey.
15. Cyntia Lourens – You are a wonderful person and I admire the way you down-played cancer and kept your head up and smile all the way. As I stood on top of the mountain in the freezing conditions, your  smile gave me warmth.
16.  Lydia Boedinghaus- Thank you for inspiring Belinda and giving her new hope.
17. Mario, my old cycling buddy – man, you are an inspiration, cycling and training even while fighting cancer!
18. Little Daniel  from Durban, What a brave boy you are! You can be proud of your Aunt Sammie who has been praying for you nonstop!
19. To Belinda’s  CST (Cancer Support Team) – Jenny, Catherine, Paul Williamson,  Kevin G,  Stuart M; Philip V,  Mark G, Joek, Steve and Arlene, JB and Candice; Stuart Thomson; Werner, Danie, Nols, Edrich, John and Nikki Andrews,  Pete Nelson,  Brigitte, Sandi, Vanessa ; Michelle P,  Mari-Ann, Beth, Freya, Des Alexander and JP van Niekerk,

For all the love and support during the cancer journey brought tears to my eyes – thank you.

     20.Lastly, my wonderful wife- Belinda. You are a hero; not only to me but to everyone you meet and share your love and encouragement. A true inspiration and example to us all. Through your valiant determination and courageous fight, you have become not only victorious but also an ambassador to the cancer war!

 Kind regards

 Kersten Mosig

We are grateful for the grace that all went well and our best wishes go with you both  as your start your journey as parents !!

Love you both

PRESS RELEASE: BEHIND HER SMILE.

SPECIAL ASSIGNMENT: SABC 3 21.30.

DATE OF BROADCAST: 21 SEPTEMBER 2011

PRODUCER: FATHIMA SIMJEE, Health-e News Service

In a non-descript face brick house in Kagiso, an extraordinary battle is being waged against impossible odds. A 38-year-old single mother, Nozipho Mgoma is fighting for her life.  Her body is swollen and sluggish.  On her bedside table are a handful of pills that might, momentarily, dull the excruciatingly pain shooting through every cell in her being. But, just reaching for them requires all of her willpower.

“Struggling. Struggling. It’s not nice this disease. It’s not nice at all. Every day. Some days are worst that this. Some days when Istand up and try to do something I just collapse in the kitchen. They will have to come and take me and put me back in bed.”

Two years ago Nozipho was diagnosed with breast cancer. She had seen several doctors and gone to countless clinics to find out why she had been feeling ill and was in severe pain, but was always sent home with run of the mill painkillers and no answers. It was only when she collapsed on her way to work that further tests were done. By the time her cancer was discovered, it had already spread to her brain, spine, liver and kidneys.

“You get pain, especially when it has spread this far. You get pains every day. You know, sometimes you don’t feel like talking, you know. You are just tired. You get angry at other people. If someone tries to do something for you, you just feel like a burden.”

In South Africa, 1 in 29 women will get the disease during their life times. The American Cancer Society believes that the number of cancer-related deaths in Africa will double by 2030.  If diagnosed early, breast cancer can be successfully treated. But, if you are poor and reliant on the public healthsystem, it can be a death sentence.

For people like Nozipho, ignorance and a lack of regular check-ups allowed her cancer to go undetected, until it was too late.  Now, every day she lives is precious. It is a day longer with her nine-year old daughter, Gugulethu.

“I am scared. Maybe if I didn’t have child, I wouldn’t be scared. But, because I have a child, I’m scared. No one is going to love my child like I love her.

I tell her, “Mummy’s sick and Mummy is going to die.  Some day, you will be alone and then you will have to do things for yourself.  So that is why I’m teaching you now.”

Cancer is a one of the leading non-communicable diseases, commonly known as chronic or life-style related diseases, which include diabetes, cardiovascular and chronic respiratory diseases. These are responsible for more deaths than all other causes combined and have emergedrelatively unnoticed, while the international community has focused on communicable infections, like as HIV/AIDS, malaria and tuberculosis. The WHO believes that non-communicable diseases are a massive cause for concern andwill – in the future – financially cripple developing nations.

While world leaders are gathering in New York on 19 – 20 September 2011, for a historic UN Summit to decide a global strategy to address Non-Communicable Diseases, Special Assignment brings you the story of Nozipho Mgoma, a courageous mother whose life hangs in the balance.

“I tried to fight this cancer.  I tried. I tried very hard, but I’m still not giving up. If there’s a chance, I’m going to take it.”

Produced by:

Fathima Simjee

Health-e News Service

Tel: 011 403 0565

E-mail: fathima@health-e.org.za

PLWC Response :

PLWC would like to  develop a national footprint that could assist in supporting patients with cancer from diagnosis.  Having added the Cancervive and CanSir  educational arms to our organisation we hope that we will be able to contribute to  educating the lay public about early signs of cancer and creating awareness about going for help early   .

Every patient in South Africa has the right to proper  services and especially timeous services.  We must ensure that more patients are  referred earlier to ensure better curative treatment where possible as soon as possible .

Although cancer is part of the NCD’s being  discussed at the high-level meeting at the UN  in New York  from 19-21 September, it is crucial that cancer especially gets  the attention of the South African government  as the suffering and hardship caused by this illness is vast . We need South Africans to speak up and to give cancer a face in South Africa . We would like to invite all cancer survivors to contact us with their stories and problems so that we can use these to  lobby support for this very important cause . If we remain quiet, cancer will remain the silent killer. We have to speak up and show the National Department of Health where the problems lie in our  health system  – that has to treat 90% of all cancer patients in our country that do not have access to medical aid funds .

Send us you STORIES AND THE PROBLEMS YOU EXPERIENCED AND WE WILL ASSIST YOU IN VOICING THE ISSUES TO THE POWERS THAT BE . SEND US A VIDEO CLIP OF YOUR STORY AND TOGETHER WE CAN MAKE A DIFFERENCE AND START MOVING TO CHANGE THE WAY CANCER IS TREATED IN SOUTH AFRICA!

Linda Greeff

Director PLWC

A Special Sharing experience from a Colon Cancer Survivor JIM HARWOOD

These were letters  he wrote to his friend and family as he was going through treatment and it describes the ups and downs as he  experienced them . I am sure these letters will inspire others as they start their journey with colon cancer . Thank you Jim for sharing this with us.

Linda Greeff

Director People Living with Cancer  

Part 1

30 July 2010

Hi Folks

This is just to give family and friends a heads up as to where I’m at right now.

I am presently at the Kingsbury Hospital having, last week Friday, come in for surgery for the removal of a malignant growth in my Colon. (It had earlier in the week been identified after a sobering medical assault on me called a Colonoscopy.) The surgery, by all accounts, all went according to plan and the naughty tissue removed was sent to the intrepid Pathologists for further analysis, specifically to see if the big C had spread to the likes of lymph glands. Feedback on this is forthcoming shortly.

Bad news from the feedback would mean a march down the Chemo/Radium track, but the fairly early diagnosis – apparently only a year odd into the growth – has left me with some optimism that this will not prevail. The good news will require of me only to see out the various stages of the rather drastic original actions taken by the knife welders. As a portion of the Colon was removed, the regrowth of the rejoin  needs protection/isolation from our normal bodily function and the latter then gets redirected through my midriff through a cunning plan involving the small intestine and a bag lady (for those who aren’t already affected by “too much information”, this means the inclusion of a Stoma). Hopefully this situation will only prevail for 6 weeks odd whereupon I get re-admitted to hospital for the midriff reversal to take place and the body to take over again completely. All going well life then comes back to normal pretty quickly after that.

I’ve been inundated with wishes of goodwill , mention in prayers, offers of help  and for this I am humbled and exceedingly grateful. I have received lots of goodies (I even got a “goodie bag!!) – and its great feeling almost like a kid again. THANK YOU one and all!!

Cheerio

Jim (Harwood)

Part 2

6^th August 2010

Bless you all out there!! I have been inundated with good wishes, positive vibes, companionship, prayers and amazing acts of kindness. A very humble “Thank You”.

Promised feedback: good news and not so good news… The histology/pathology report – these medical guys seem to float between the two – indicated that the primary surgical exercise seemed to clear all the bad funnies, so what’s left behind should, in the next few weeks, knit properly and leave me with a healthy, albeit shortened, Colon (a few inches out of a 15 ft. Colon is not going to hassle much I guess!!). However, of the 18 odd Lymph nodes close to the tumour and sent for pathological testing, 14 proved to be benign but 4 were found to contain/be (?)  naughty “floaters” that now need to be pursued and obliterated before they can settle in some other inconvenient part of the body. Apparently a low grade (tablet form) Chemo therapy is required for this little mopping up exercise and it should happen within the next month or so. Quite how the timing is going to work between the the latter dark work of the Oncologist  and the Surgeon’s reversal of the Stoma (me dumping the “bag lady”), I’m not quite sure, but I feel I’m in good Doctors’ hands all round so I’ll just be a good little boy and take things as they come.

That’s all for me now folks. A sobering thought for those of you over 50 though:  the smart money says you should voluntarily surrender yourself to the clutches of the medical profession for a Colonoscopy. As the stats apparently indicate a genetic link in similar sorts of occurrences, my siblings and direct descendants – no favouring male or female – should do so at 40!! Enough said.

Cheerio

Jim

Part 3

Hullo Folks

The saga continues. (Hope I’m not boring you all!!)

On Sept. 17^th my surgeon (kinda like “my  attorney” or “my accountant”!!) will perform an “Ileostomy closure” on me (or if you can add the administrative to the medico/technico jargon: a Disease Code Description ICD10/C20!!). To the rest of us mere mortals: “the bag lady gets dumped” – pun intended – and my Colon will come out of storage and get operational again. Prior to the operation, I will have to have a Proctogram which is an x-ray (I have the Disease Code Description for any collector of useless information out there!!) which, after the insertion of a dye will show whether or not the “cunning” Titanium staples that were inserted by the intrepid surgeons have joined my Colon up properly. Anyway I will apparently be in the Kingsbury for a week while the medico/technico people make sure my gut etc. is properly kickstarted. The word “kick” conjures up fairly graphic images of how the process might proceed, but maybe I shouldn’t go there.

Soon thereafter I will hand myself over to the eerie world of the Chemo/Oncologists who, for 6 months will weave their magic and ply me with their potent brews. For those of you who believe in Statistics, I’ll apparently be raising my chances of klapping the cancer from 50% to 70%. Everyone, apparently, reacts differently to Chemo, but I trust I’m giving myself the best shot at handling everything by being fit (I’ve been walking for a few weeks and actually started running again last week), ingesting my own secret weapons (Omega 3, Probiotics, Vitamin D and Extra Virgin Olive Oil for starters), avoiding stress (fortunately the rugby Tri-Nations is over!!) and being positive.

Yes, I have entered for Comrades for 2011 – the new organisers want their runners’ commitment (for the latter read “money”) early!! It may well be wishful thinking in that the Chemo might put a dampener on things, but it at least gives me a goal to work towards.

Thank you all for your interest, visits, comms and prayers. It really means a lot to me.

Cheerio

Jim

P.S. My lifestyle Guru (she who nudges me toward my abovementioned “secret weapons”) will be giving a talk in Fish Hoek on the afternoon of Sept. 19^th for anyone interested. It is the sort of talk that I should have heard 30 years ago, but couldn’t cos my head was in the sand!! (Hindsight gives one 20/20 vision.) You can get further details from my wife Terry on 021 – 7825763 (h)/ 0826584449

Part 4

Hi folks

I’ve been quiet for a while partly because I was in a sort of “no man’s land” during Chemo, i.e. not quite recovered from the operation, but undergoing treatment that, by all accounts should have knocked me sideways as a result of the poison I was ingesting. Anyhow it is now (hopefully!!) a thing of the past and I can share my experiences of this murky world with you.

The Oncologist (Vincent Palotti Hospital), having to hand the findings and opinions of the Pathologists (the blood Vampire) and Surgeon, sits you down and indulges in the classic CYA (acronym for cover your derrier) as he tells you all  the possible side effects of the Chemo. The variables are endless because “everyone is different”. Anyhow, as a gibbering idiot, you are thereafter taken to a large room, seated in a recliner chair and a heated pad is placed on your arm so as to better expose the veins. Enquiring fingers then poke and prod around until a large needle ends up in one of your veins. Thereafter approx. 8 bags of liquid of various colours and textures are fed into you. Only two of them are the actual Chemo stuff and the rest sterile water, anti nausea and glucose. No, they were not prepared to insert anything containing alcohol! Rumour has it that the Chemo bag originally, as per regulations, was required to have signage of a Skull ‘n Crossbones on it with the inviting description of “POISON”!! it would appear as though they were prepared to make an exception to this regulation when customer upon customer freaked at the signage.

The drip feeding takes most of the day and, very often, I was the first there (of about 12 to 14 slots/seats) and the last to leave. Throughout the day then various folk come and go and the atmosphere tends to be rather somber. In between my reading and laptop operation, I kinda instinctively try and lighten the atmosphere by winding up the nurses – they aren’t used to my runner’s chirping but seemed to take it in good spirits. Some of the patients obviously didn’t appreciate it but I guess it’s their Constitutional right to act and look miserable so I ignored them. Friends and family came to visit now and again, so remember that when your other friends are undergoing Chemo: visits are the norm and are appreciated all round. You’d even get free coffee!!

The same evening of the drip issue, I start taking the Chemo tablets (morning and evening after meals) and this goes on for two weeks. I then get a week’s break and the process starts all over again. I did six of these three-week sessions. These five odd months were interesting though as one didn’t know what was going to happen to one’s body next. First of all my feet started getting sore so that put paid to my running. Then I noted that everywhere that I had been seriously exposed to the sun over the years (arms, neck, face, hands etc.) started shedding skin like after a bad bout of sunburn. Then, for a few months in the middle of it all, I battled to get rid of the Diarrhea that settled in; the latter certainly got my weight down – a not to be recommended dieting procedure!! And I found too that my taste buds, especially for beer and wine were not passing on the pleasurable feelings that I am used to. People who had been there before though assured me that these would come back and, I’m happy to announce, that they have been proved correct!!  A sort of last gasp attack that the Chemo subjected me to though was that it messed up the nails on my hands and feet and left a lingering Neuropathy (a sensitivity of the nerves) in said hands and feet. This though has not prevented my running again and I am back on the road and, more poignantly than ever before, really enjoying it. My health guru and other  more rational souls than myself, have steered me away from Comrades for 2011.

You can imagine all the heavy medical warnings and anecdotes that have come my way of late (real scary stuff sometimes), but I’m happy to say that I have been blessed and would seem to  have got off lightly in the greater scheme of things. My Cancer was “the best type to get ‘cos you can surgically remove it” as was told to me by a rather down-to-earth nurse!! Through a host of positives, including  fantastic support from Terry, the rest of my family, my health guru, my running and Para friends, my other friends and a host of new ones, I managed to restrict the Chemo to a mere inconvenience in my life. I was fortunate too that my Chemo regime  was not the hair-fall-out  type.

 With the Chemo now finished though, I’m not quite sure of the technical jargon that defines my status, but I guess the term “in remission” or “clear” would seem to fit the bill. But now the fun and games start as the nasty reality of “predisposition” to Cancer has been placed in the forefront of my whole lifestyle, especially in what I eat and drink. Anything that throws the body out of kilter/balance can bring on a recurrence. So now I am Omega 3-ing, Probiotic-ing, Vitamin D-ing, juicing, watering, limiting sugar and milk, as far as possible avoiding foods containing preservatives (you’re not going to be charged by the way for all this earth-rending information!!), minimal red-meat consumption, steering clear of all the lekka Boerewors ‘n Biltong (sometimes), piling on the vegetables (cooked for as short a time as possible!!) etc. Fortunately alcohol “in moderation” and “not every day of the week” is allowed and I knew I had reached a major milestone in my Neuropathy recovery when I was again able to open a screw-top beer. The French seem to thrive on Red Wine (as a Cholestrol –lowering medication), so this too can be forced down my throat.

Bless you all and thank you for your interest and prayers. This has been, funnily enough, a very positive period of my life – not that I would wish it on anyone

Jim