Welcome to my cancer talk which I hope gives fellow cancer sufferers and carers some insight from a patient’s point of view.
It should first be noted I have no medical background, everything is written from first-hand experience.
In 20 years, I’ve had 3 unrelated cancers:
First: Non-follicular lymphoma a slow growing cancer which was treated with chemotherapy in tablet form.
Second: Colon cancer which involved the removal of the tumour at the exit of my colon. This required invasive surgery resulting in my back passage being sealed and a permanent stoma to my stomach. The whole tumour was removed so no further treatment was required;
Third: A large group of cells in my small colon which again involved major invasive surgery and removal. Analyses of the cells showed Large B-cell lymphoma which is now becoming quite common but requires a sledge hammer to crack a walnut. I had intense chemotherapy treatment involving 9 months of long hospital intravenous sessions, followed by 2 years of chemo management involving hospital injections into the stomach. For good measure, after 20 years, my non-follicular lymphoma also returned but was treated along with Large B-cell lymphoma.
Currently I am in remission with no requirement for further treatment.
I'm very lucky as I’ve always had and continue to have an abundance of energy. Generally I try to keep myself fit, moderate my diet and carefully watch my alcohol consummation. I’m very lucky because in life no matter how bad it gets I always stay positive and ensure plenty of fun and laughter.
This is a very emotional time, you know you have cancer but probably haven’t come to terms with it and you’re not fully sure of the treatment involved. One of the first problems is how you tell loved ones, friends, colleagues and how they’ll react. From their point of view, they often never quite know how to respond to you or how to approach you. They may already know through others that you have cancer and you must always remember they’re living through this along with you. They’ll be as worried as you are, and whilst you may understand what’s going on, they often don’t and may not even want to ask you about it. I always found the best policy is to get it out in the open, so they can take it on board. After all, they are on the front line to support and help you with your recovery.
I’m incredibly lucky that in life I see everything as a challenge and refuse to let things get the better of me. The very first thing I recommend is to try and understand your cancer, be open and don’t be afraid of it. We are very lucky in that there are so many experienced and dedicated doctors and nurses who will spend as much time as you want discussing your cancer and treatment. You should do as much of your own research as possible and these days there is no better place than on the worldwide web. Often you will unearth things from other parts of the world that are more up to the minute than the people treating you, but always remember they have to comply with strict, rigid, tried and tested treatments.
Living with cancer
It's very important that you listen to your specialist and take your medication seriously. Ensure you eat and sleep on demand as this will give your body the best and fastest chance of recovery.
This is extremely important as sleep helps your body to heal and recover.
A few good tips:
If it’s the middle of the day and your tired, go to bed. Darken the room as you would for a night's sleep, remove outer clothing and actually get into bed. You need to educate your body over time and you will find your body clock will adjust and take over naturally.
If you have big problems and things are playing on your mind, you must learn to pigeonhole them, don’t forget about them and don't ignore them but just tell yourself you’ll get back to them when you have time..
Equally as important as sleep is your diet. You will need to build yourself back up particularly if you have had a big operation or intensive treatment. Both will always involve quite substantial weight loss, think of cancer as something that is slowly eroding away your body and the need to compensate.
Always eat on demand. If it’s 3am and you're peckish, have a cup of decaf with toast and butter top it with peanut butter or other high protein spreads, all are very good source of much needed protein and they also help satisfy your taste buds. Don’t worry about losing sleep you’re on your own planet and now need to do as you see fit.
Think about what you want to eat and what you need to eat as this may mean eating different meals to the rest of the family. You may have loss of appetite, but this will come back.
You’ll need plenty of protein to build yourself up so first and most importantly, partially if you have no appetite, are high energy drinks. I know they many taste awful and we hate to complain but there are high energy drinks and soups made by AYMES that provide good flavours. They’re also available on prescription. I can't remember the correct figures but if you mix the supplement powder with water it’s around 270 calories, change water to full fat milk and it’s 370. The clever thing to do is to buy a Nutribullet machine and liquidise things like nuts and bananas which are all high in protein. Add full fat milk which you should now be using anyway, even add a bit of cream, and there you have a massive calorie intake. If it’s too thick you can thin it with milk and you can also freeze and eat like ice cream.
Porridge is very good. Simply Oats are quick and easy and if you compare the stats with whole oats it’s identical. Again using the Nutribullet, you can liquidise a handful of nuts (walnuts, almonds, hazel and pine nuts), add them to oats, add milk and 2 minutes in a microwave you have a quick wholesome meal. Top tip is when cooked add a dessert spoon of avocado or virgin olive oil. One of my favourite breakfasts is toasted Panini with sliced tomatoes in the microwave, topped with avocado oil or olive oil then top with diced black olives.
You will need to placate your taste buds and as you eat more, your stomach will start to stretch and you will find your appetite gradually returns. At first keep to things simple and consume fast and easily digestible foods. Homemade soups & shepherd's pie are good as you can bulk up with finely diced vegetables, also adding cream and cheese to the potatoes gives it a great flavour and even more protein. Omelettes are great as you can add any damn thing potatoes, asparagus, ham, cheese and most importantly, it’s very easy to eat.
Do re-think your food intake and go for high protein where you can.One point to note is that high protein may eventually increase your liver readings, but you can pull that back as I did by changing your diet when you’re ready. Look up fatty liver online as that will guide you and recommend the best foods options. You should note however that if you’re on chemotherapy certain foods should be avoided.
When you feel up to it, go to a large supermarket and spend a couple hours just picking up products, checking labels and making notes. You will be surprised at the contents and how much you often need to change your eating habits.
These are extremely important especially if you’re on chemotherapy in which case you will need to consume at least 2 litres a day. The best drink of all is water because you need to flush the chemo through your system. I personally can’t drink cold water so I top up with warm kettle water. Another alternative is very weak squash. When you get up in the morning and before you do anything, have a 1/2-pint glass of water and again before you go the bed at night.
If you’re on chemo and you don’t drink enough fluids, you may end up dehydrated with headaches and painful mouth ulcers and generally feeling quite unwell. Note, if you have side effects like mouth ulcers talk to your nurses as they can provide medication. There are various types so make sure you try a few.
Alcohol & Smoking
If you enjoy either that's fine but try to moderate. You may be fine with it, but your body may not be feeling the same way. Try to change your drinking habits with the many choices of non-alcoholic drinks, with the right mind-set it’s just as enjoyable.
This is also very important but only when you feel up to it, there’s no point walking a mile if you struggle walking a second mile to get back. Walking briskly is probably best, head up, shoulders back and walk with purpose, clear your lungs with nice deep breaths.
If on chemo, just after you’ve received treatment and especially in the early days, your immune system will be shot. Always try to avoid crowded areas where there are lots of people as you’re exposed to their germs, coughs and colds. Remember to wrap up warm and go for a walk, it’s great downtime to let your thoughts run wild or even catch up on your prayers.
Mind over matter
It’s most important that you try to take control both mentally and physically. You will need distractions especially when you’re in bed and your minds running wild. Try reading a few chapters, doing a crossword, Sudoku or just listening to the radio, for most music is very uplifting and gives you a feel-good factor. With music your spoilt for choice so if Jazz is your thing or films scores, you can find just about everything online. Use your mobile with head phones, go on YouTube or use Spottily to create your own playlists.
Spread the word
Pretty soon more than 50% of the population will have some form of cancer and the best way to prevent it is by educating other people. Most cancers have parallel symptoms and it’s annoying that the education system does not educate teenagers on how to look after their bodies and what signs you should look out for. In hindsight, each and every one of us will have had recognisable symptoms.
Remember many cancers are hereditary and if it’s likely yours is, you should tell your blood relations, so they can take the necessary precautions and in some cases be tested.
I have a theory that cancer never really goes away and our bodies just learn to live with it. So always be aware it can return and be mindful it can return as secondary cancer with completely different symptoms. If you’ve had cancer you need to constantly on your guard, early intervention is key to avoiding intrusive surgery and the ever harder uphill struggle that may well be avoided. I always tell people to look out for the following:
Unexplained dry coughs
Night sweats or itchy feet
Changes in bladder control and have to rush to the loo, especially in the night or passing blood
Changes in your daily toilet, more urgency and having to go more often, blood in stools
Stomach aches or craps, swollen or hard stomach or bloated feeling s
Tiredness and feeling lethargic for no reason
Lumps and bumps anywhere in the body, some can be swollen lymph nodes
Secretion from any orifice boobs, Virginia, penis, back passage, nipples, nipples, nose and ears
Post menstrual bleeding
Swollen spleen - you may be able to check this yourself. If you lie on the bed and slap your left side it sounds hollow, then press just under your ribs cage left and right should be equal if the left is hard or swollen it need to be checked out
From time to time ensure your check your body,
Top tip do it in the shower with lots of soap on hands and body soap, feel both groins, under both arms and down both sides of your neck. You’re checking for swollen lymph nodes or lumps, do it again lying down as lumps can move
Vitamins and Probiotics
It’s important to take multivitamins with minerals as well as fish oil capsules and probiotics. Take probiotics with a snack and a glass of water or cold milk as heat kills most of the probiotics. Research by Jamie Oliver and Jimmy did organise research and analysis and showed best form of probiotic to reach the gut was Greek yogurt.
There are lots of very good cold pressed concentrated oils on the market, I hear more and more people feel they have helped with their cancers. Thinking positive and telling yourself they’re good may all be in the mind but if it works for you then who cares.
A few things to maybe consider are Apricot Kernel Oil, Cannabis/Organic Hemp Oil both along with a list of others are available from www.biopurus.co.uk, and some from Holland & Barrett always buy form a recognised suppliers.
Finance (Note I am not a financial advisor)
One very big problem and one of the biggest mental strains can be finances. You may have all sorts of creditors, credit cards or a car on finance which all involve interest rates and may increase if you miss payments. I recommend you speak to a financial advisor or debt management companies who can discuss options with you a couple of useful things are;-
Debt management where you go to a Debt Management company who will compile all your creditors, work out your income and then deduct expenses They will come to an agreement with your creditors who by law who have too freeze interest rates and take a prorate payment no matter how small .
Equity release interest rates are now so low it's not the devil it once was. No one expected to be able to leave their children or relations so much equity and many will end up paying tax, why not release some and have the benefit of your unexpected windfall.
I have tried to filter what I consider important in the hope it will help anyone with cancer. Sadly, with cancer you are never alone so don’t feel isolated and do try to help others that are not as forward as you. For many, just a little chat with a stranger can often bring much comfort and hope to those in need.