My name is Neil Gibson I was diagnosed in 2014 with stage 3 AL Amyloidosis. I had never ever heard of amyloidosis before this.
My prognosis was not good, a matter of months and if it hadn’t been for the CCC, Carmel in 2E outpatients in PAH, convincing me to start chemo, as I was a bit reluctant in the beginning, I would not be here today playing golf and leading a normal life.
So how did we, my wife and I, manage at diagnosis? We started the bewildering task of reading all the information given to patients, such as amount of salt sodium in my diet. That was an eye opener. Going to the supermarket and starting to reading labels for sodium. I could not believe the amount there is in almost all our regular items.
As I had fluid in both legs up to my knees, unable to wear shoes because of my swollen feet, salt and fluid was my main concern. I stuck religiously to my allowance of 1500 mils per day. Lucky for me it was in winter and most times I managed to cope.
My next concern was swallowing food, I had a swollen tongue and was unable to swallow anything of any substance, also I had lost my appetite due to either the chemo or the disease. I wasn’t that fussed on food. My wife had been a nurse for almost 40 years, so it is thanks to her as well as the PAH CCC that she worked out our program for a daily routine.
I’m hoping this article recounting my experiences may help new patients to get into a daily pattern of getting to know their limits and help them take some control of their health again, as when first diagnosed it is mesmerizing just to understand the disease never mind taking in all the does and don’ts.
So I have listed some helpful hints that we worked out over a number of weeks.
- Wake up, that’s the important one.
- Write, record your weight you have to know which way you are trending up or down.
We kept a daily diary, recording weight, fluid intake such as water tea, coffee soup, ice-cream all fluids. (It is easier if you get a 200mil cup, and count each cup at the end of the day you will know if you are under or over (, take) your limit.
I basically lived on soup for a number of weeks, until we bought a Magic Bullet liquidizer. This was the best thing helping me get some real protein back into my system. As I could not swallow we blended stews to form a soup the best one that I enjoyed was steak and kidney. Don’t laugh it doesn’t sound good but was really tasty.
Because I had kidney involvement most of my protein was escaping through my bladder, so using the Magic Bullet I made my own protein drinks it consisted of my basic 200mls cup of full cream milk two desert spoons full milk powder one desert spoon of egg powder (available at super market) and Milo, (I found it cheaper than buying them in a store.
With the swollen feet and legs my doctors wanted me to wear compression stockings. Unable to get them on without a big struggle my wife came up with the idea of woman’s tights. This was a god send as it gave my feet and legs structure easy to get on and off, I wore them for 6 months, until the fluid left my body and gradually improved over time.
I hope this will be of benefit to new patient.
I realize that every patient is different even if they have the same type and stage of amyloidosis. It is therefore important that you talk over any of the tips I have suggested with your doctor before trying them yourself.
If other patients have any tips they would like to pass on to my wife and I we are always ready to learn.
I have coped with my ongoing chemo for approximately 6 years now living a fairly normal life.
But in march I felt a lump beside my left ear, saw my G.P. had a scan and biopsy and presented to the P.A.
A cancer was found contained in one gland (a saliva gland) but it had to come out. I had a very good surgeon who took great care not to disturb the nerve which, had it happened, could have resulted in a drooping mouth and constant dribbling and being unable to close my eye lid.
None of these things happened and I am now undergoing a course of radiation treatment to stop the cancer returning.
When first diagnosed and treated with chemotherapy , I was told by the clinic to stay out of the sun, and use sun screen, as chemotherapy can make the skin very sensitive leading to the development of skin cancers
Most are basal cell carcinomas but unfortunately for me, mine was a squamous cell carcinoma, mainly because of not having enough skin checks.
I did stay out the sun as much as I could. When I played golf I made sure I “slip, slop, slapped”, but I had infrequent skin check-ups, much to my detriment. So today I am at the end of week 3 of 6 radiation treatment to the left side of my face.
So I’m passing this on to all of you, chemotherapy can make your skin very sensitive and skin cancers can proliferate.
This is a reminder to get regular skin check-ups.
Radiation is not the most pleasant treatment, but with professional and friendly staff at the P.A. they make it barrable I hope this will remind you to get checked.
Since I started my treatment at the PAH Amyloidosis Centre I have been involved in raising money for amyloidosis research. I would like to draw your attention to the PAH Giving Day on Thursday September 3
“This year’s PA Giving Day campaign, We’re all 4 the Heroes, will help to raise $500,000 for patient support, state of the art equipment, staff education and medical research at the PA Hospital Campus to improve health care and ultimately outcomes for patients, their families and the wider PA community”
Every $1 you donate will be QUADRUPLED thanks to our generous matching donors.
To donate; https://pagivingday.co/amyloidosis
For more information about this patient’s experience you can send them an e-mail using the form below.