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UPDATED -FUNDS NEEDED FOR Medical Costs for Bev's Cancer and Norman's KidneyDialysis
19th October 2019 UPDATE (original message is below)
As families now prepare for Christmas, gifts, holidays and restaurant outings - we contemplate how we are going to put food on our plates for another day or get to Groote Schuur Hospital for Bev's appointments. We humbly ask that you Please share this post with anyone you feel may be able to assist us.
After many exceptionally challenging months, Bev has completed her chemo and radiation treatment (for now). Sadly the side-effects of both treatments have taken a massive toll on Bev's body. Her taste buds have been affected, to the point that virtually everything tasted and smelt like rusted metal. Whilst the worst of those side-effects are slowly abating, Bev still battles with the smell of most food cooking. She still eats a very bland diet because eating anything "rich" causes her the most severe abdominal pain. Bev is avoiding all sauces, spices, gravies and most especially garlic, rosemary and onion, which are still aroma's and tastes that nauseate her.
Bev has had many trips to Groote Schuur in the past few months, trying to deal with the issues of pain and new challenges which have developed as a result of the radiation and chemo treatment.
Firstly we have been told after numerous tests and another CAT Scan, that the radiation has cooked Bev's bladder so badly that she has a hole (fistula in the bladder), as they call it. When she asked if they can repair her bladder, she was informed that unfortunately the tissue is so badly damaged and thin, that it will just tear open again. She was also advised on Monday last week that the radiation will continue damaging and killing her tissue for another TWO YEARS !! This news is just shocking, given that we were not warned of the excessive dangers and possible side-effects she would be facing after the treatment.
So... the CAT Scan also revealed that she has a mass on her pancreas which they have suggested will need to be biopsied, in due course, however she has bigger issues which require their immediate attention.
More urgently, they have also discovered that her right kidney is now double the size of the left kidney and is at serious risk of rupturing. Going forward the doctors have advised us that they intend to perform an attempted drainage of the right kidney and if this does not work, they will have to do a nephrectomy to remove the right kidney. Whilst she is in theatre, they will also have to remove a portion of her colon, rejoin the colon, then use the dissected portion to create a diversion from her left ureter and create a stoma on the right of her abdomen. This will mean that Bev will have to wear a stoma bag for the rest of her life, as the doctors have told her there is zero chance of ever repairing her bladder. The stoma surgery will be approximately 6 hours. If the doctors also have to remove her right kidney, she will be in theatre for around 12 hours.
Doctors have motivated for the Theatre Sister to allocate theatre time as urgently as possible. In the meantime, Bev now has to undergo counselling with the Stoma Clinic, as she is in a very dark place since hearing the news. The doctors at the Stoma clinic will not clear her for the surgery until they feel she is mentally able to deal with this massive change to her life-style.
SEVEN DAYS LATER
Apologies - it is now a week later and Bev has had the meeting/counselling session with the Stoma Clinic. We both felt it was more of an anatomy lesson than any form of counselling. Virtually every question she asked, they said they would address when she was admitted and in the ward. So we left there with MANY unanswered questions. Unfortunately during the meeting I had a serious drop in BP and passed out. When I came around Bev had got me into the trendalin position (knees above the heart and feet above the head), because I had no blood flow to my brain or heart. In her words - as always I am seeking attention again :) After barking orders at the nurses, she got salt under my tongue, followed by tiny sips of juice until I was compos mentis again. Unfortunately
+-whilst lifting me - she hurt her back very badly and has pinched the nerve between her lower spine (S1, S2 and S3 and the Sacrum). She has been in awful pain and is still battling to stand up from a seated position or walk up and down stairs. She is now hobbling with a list to port-side. Personally I think she is mimicking me with my list to starboard. We really are a sight now, looking like two old doddery fools.
The challenges ahead are still immense and as you can imagine, Bev is not well enough to work and support the two of us at this point. I continue to have dialysis on Monday, Wednesday and Friday's (taking up 6 hours of the day), making it impossible for me to seek employment.
We desperately need financial assistance to see us through these next few months, whilst Bev waits for the surgery and then she will have a six to eight week recover period, before she can start looking for a new job. Our savings are now completely depleted and surviving each day is a stress and a massive challenge as we have no money for food, petrol, medication or available funds to assist with our contribution towards water and electricity. Our daughter Kirsty is shouldering the burden and she is now battling to make ends meet, which is adding to the stress in her tiny flat. If you are in a position to assist us, please know that every single Rand will help.
Many thanks and God Bless, Boxie
I am told by many that I have a propensity to "talk too much" - I usually tell a story using a 100 words where most people would probably only use 20. So.... I beg you indulge me for a short while as I try to precis the story as much as possible.
For the past 9 years my wife Bev, has been nothing short of amazing in the way she has taken care of me. I had a kidney transplant some 35 years ago but in 2010 everything suddenly started going pear-shaped. Firstly, my father-in-law was diagnosed with Cancer and he passed in my wife's arms exactly one month and one day later. Bev never had the time to properly mourn the passing of her dad, whom she loved with all her heart, because sadly I was getting sicker and weaker by the day. I ended up at Johannesburg General Hospital Ward 456 in Intensive Care and High Care (on and off) for almost 2 years out of 3. Bev spent nights sleeping in the car in the middle of winter when temperatures where in the minus’s, because we did not have enough money for her to drive to and from home to the hospital. How she kept going is nothing short of a mystery to me. Her love and prayers as I went through PCP Pneumonia, Aspergillus in my lungs which caused an Aspergilloma "black mould fungal ball" in the lung, a blood e.coli infection, heart failure, lung failure and renal failure all at the same time were the strength and faith that pulled me through.
Fast forward 5 or 6 years after Bev had done fund-raising, with a lot of assistance from my sister, to raise money to pay for my dialysis for one year.I had gone into full renal failure by the end of my stint in hospital and we had to wait for medical aid to kick in for a year before I could claim any benefits. SO..... Bev's full focus was on me and my dialysis and all the side effects of renal failure and NOT on her own health.
For at least a year she kept saying something was wrong with her, but she just could not put her finger on it and she was so busy at work, that her focus was on providing food, medical aid costs, medicine costs etc. for me and she kept pushing the worries of her own health aside. Towards the end of last year, she took a turn for the worst and we realised she needed emergency medical intervention to assess what was going on. Bev tried getting into the State Hospitals in Durban (sadly we cannot afford medical aid for her), but after being left sitting in a chair for FIFTEEN HOURS, whilst passing a kidney stone and also passing virtually pure blood and clots from the bladder, because they did not have a bed available for her - we realised we had to try and get her to Cape Town where we would have assistance in getting her admitted to Groote Schuur as an absolute emergency. Bev flew to Cape Town, whilst I stayed in Durban undergoing Dialysis 3 times a week.
** At this point Bev was required/forced to take unpaid Leave of Absence from work until she had her health sorted out, so she has not earned a salary since December 2018.
Months of tests and stints in theatre and scans and waiting for 6 weeks to be cleared of having Renal TB and then more tests and Reno-grams and CT Scans, before we eventually got the diagnosis on the 23rd December 2018 that she has Stage 3B Cancer.
Cancer - that dreaded word you never want to hear. ….Our world, as we knew it, fell apart. By then Bev was in so much pain she was admitted to Groote Schuur for a month whilst they battled to get the pain under control. She spent Christmas and New Year in hospital on morphine as one day faded into the next. Bev was eventually discharged towards the end of January 2019, at which point I was not well - so much so that Bev asked her niece in London to please assist her with an urgent flight back to Durban. As usual...Bev always put me first. Four hours later she was back in Durban. On arrival she took one look at me and could see I had lost a lot of weight and she suspected I had pneumonia again, so she called an ambulance.
I have no recollection of the next 4 or 5 days as I was admitted directly to ICU and was in a coma for 3 days. As soon as I was released from Hospital a week later, Bev loaded me into the car and despite her incredible pain she undertook the 23 hour drive from Durban back to Cape Town, as I was not well enough to drive. Watching my wife having to pull over on the side of the road and jump out the car in the most indescribable pain, was just mortifying. She would have to walk around and wait for the pain in her bladder to ease before getting back into the car and continuing along our journey. Bev had to stop at every petrol station to try and empty her bladder so that she could make it to the next stop. More often than not, she never made it and was mortified at having to resort to adult diapers. This beautiful woman who has worked so hard, has spent her life taking care of everyone else, nursing her best friend through her cancer treatment, until Sue passed away in her arms and always - and I mean always put me, her daughter Kirsty and everybody else ahead of her own needs.
On the 6th of February Bev pushed me in a wheelchair (I was still too weak to walk), into Groote Schuur to meet with the team of Oncologists to discuss the road forward. We were advised that we would have to wait about three months for treatment to start, as there was a waiting list, but that Bev would need 7 weeks of daily Radiation and 8 weeks of Cisplatin Chemotherapy.
** At this point Bev was advised via a WhatsApp message that her company could no longer hold her position and she had already been replaced.
I saw the shock and panic in my wife's eyes, followed by uncontrollable tears. Her worst fears were how would she afford to pay for my medical aid and medication, which on a monthly basis costs around R4 500.00 to R5 000.00. How would we afford to live and pay for food and petrol to and from Groote Schuur every day for treatment (96 Km's a day). For days she was inconsolable. The shock and stress of losing her job set her back so badly in her treatment regime that her chemo treatment had to be delayed on two occasions and then extended long past the time we had anticipated.
It was just through prayer and faith that we have got to this point.
Sadly we are at the point where our funds are now completely depleted and we face the reality of stopping treatment because we just cannot afford the costs of driving to Groote Schuur daily. The reality that if we do not pay for my medical aid at the end of this month, I will not be able to receive dialysis, which will result in certain death within about 5 or 6 days. Bev, in the meantime is dealing with the horrendous side effects of the chemo and radiation and she battles with nausea, vomiting, chronic abdominal cramps, skin in her groin burnt so badly from the radiation that it bleeds and most devastatingly ...bladder incontinence which reduces her to tears on a daily basis.
I thank you for taking the time to read my lengthy story and plead that if there is any way you can assist us by contributing to our Fund Raiser and sharing our story, to garner more support - I would be eternally grateful. There are just not enough words to express my gratitude at the love and support we have received to date.
God Bless and again Thank you for reading my message.
Norman (aka Boxie)
Medical Costs for Cancer & Kidney Dialysis for Bev and NormanUpdate posted by Norman John Boxshall Smith at 11:03 am
I am told I have a propensity to waffle, so please indulge me for a few minutes as I try to precis our story as much as possible.For the past 9 years my wife Bev, has been nothing short of amazing in the way she has taken care of me.. . . . .