There are so many books, CDs, tapes, and other useful products available that can be helpful before and during surgery and other medical treatment and afterwards to help us stay positive and healthy, that I can only scratch the surface.
I am going to list some that Iíve found useful and any others that Iíve heard or read about. In time I hope to add resources that visitors to the site tell me about.
I was going to divide them into 3 categories:- Body. Mind and Spirit until I realised that they are so interconnected that it was an almost impossible task. So Iíve organised it from diagnosis onwards.
People power - This was a shocking and terrifying time for me. It would have been much worse had I been alone. So my first suggestion and the most important resource in my opinion is to have someone with you on those hospital visits. I was lucky that my partner is self employed and could always come with me and was able to visit me often twice a day in hospital. This was a time when I needed to talk to friends and gather as much support as I could around me both for practical help (like childcare and looking after some of my work for me) and emotional support.
This is not the time to be strong and independent but to have compassion for yourself and to allow people to support you in dealing with this trauma. This is the start of a big journey, or as one friend who had recently had surgery and chemotherapy for breast cancer called it, ďan adventureĒ. I found it hard to see it that way at first but then, later on, sometimes I have been able to see it that way.
Anyway however you see it, you need to get your supplies together like those old pioneers in their wagon trains heading off into the unknown lands.
This is time to get prepared as best you can. It might help to sit down and write a list of all the practical, emotional and spiritual support you can think of and then check out who or what is available to meet those needs. Consider all your senses as you do this - sight, hearing, smell, touch, taste and plan how to take care of these needs.
Bach Flower Rescue Remedy - Just a few drops on your tongue or diluted in water can help you relax and regain your equilibrium. It is widely available from many health food shops and chemists.
Aromatherapy oils - these can be very soothing and Lavender is probably the most used and has the benefit of being suitable to apply directly to the skin without dilution in carrier oils (please check that your skin is not likely to react to it if you have sensitive skin). Others that are recommended for shock and fear are - Camphor, Melissa, Neroli, Basil, Clary Sage, Jasmine and Juniper.
These will need dilution in carrier oils. I suggest buying a cheap book on aromatherapy or looking on the internet for advice.
A couple of drops of Peppermint oil sniffed on a tissue really helped me relieve feelings of nausea
A recipe for a relaxing bath is:-
Camomile - 2 drops, Cypress - 4 drops, Orange Blossom - 2 drops, Lavender - 4 drops, Marjoram - 4 drops, Rose - 2 drops, Sandalwood - 4 drops, Clary Sage - 4 drops.
Relaxation Tapes - there are so many of these available that you can take your pick. The Biame network sell very good relaxation and grounding tapes (see websites). I use these and various soothing classical or New Age CDs and tapes to help me relax. Music really does help to calm and relax us.
Meditation - Alongside relaxation this can really help you to stay calm and focussed. There are plenty of books and CDs or tapes around (see Biame network and Buddhist websites). See the section on meditation. I have found the Mindfulness Body Scan CD very helpful to really help me relax and stay with myself as I am. Sounds a bit new age or weird maybe as most of the time when we have a life threatening illness or are enduring the extreme treatments for cancer the last thing we may want is to focus on our current experience. I can only tell you that my experience has been one of feeling peaceful, calm and more resourced after doing it. You can find more information on the CDs and books at www.mindfulness.com.
Visualisation and Guided Imagery - Although you are likely to be in shock for some time after your diagnosis, when you feel ready it is very important to start to focus on the outcome you want. If you use the power of your imagination to visualise a positive outcome then you will do all in your power to help create that. There are many useful books and tapes, etc. available but simply getting relaxed and using all your senses to focus on the outcome you want and imagining yourself being well and healthy can really help. It seems clear to me that a positive and optimistic attitude can only help us get well again. It does not mean that we have to deny our fears and indeed it is important to acknowledge them and talk to people when we need to but we can still focus on the outcome we want.
Healthy Lifestyle - whether you have to have surgery or other treatment the healthier you are the better the prognosis. If you smoke please give it up now. I know how hard it can be especially in times of great stress but it is not going to help you get well.
I will talk more about diet, nutrition and exercise in other sections but basically if you can eat a well balanced diet with plenty of fruit, vegetables, whole food and at least 2 litres of fluid a day, cut right down on fat, sugar, refined foods, caffeine and alcohol you really are doing yourself a favour. Keep up or start regular exercise if you can and give yourself enough rest.
Hospital supplies - I was in hospital for 8 days having my hysterectomy and I took books, CDs and personal stereo, crossword puzzles, photos of my partner and friends, food treats, fruit squash, new night clothes and slippers, toiletries, Rescue Remedy, Arnica tablets to reduce swelling after the operation and a little spray bottle of Lavender and Tea Tree oil mixed in a little water which can help fight infections. There wasnít much room in my locker!
Visitors - My partner, Mark arranged visits so that I always had enough but wasnít overwhelmed. Obviously some people like to see lots of people and others want to withdraw and have time alone. Just remember its your call and although its great that people love you and want to see you it might not be right for you on the day. I had to learn that it is OK to cancel.
The type and dosage of drugs used in chemotherapy vary according to the type of cancer and health needs of each individual. This means that it is difficult to predict how you will be affected by the treatment. You are likely to be given a leaflet which a nurse or doctor will run through with you on your first chemotherapy appointment. My understanding of how the drugs work is that they attack the cells that divide the fastest which includes cancer cells. Unfortunately it also includes the mouth, digestive system, hair, immune system and bone marrow. It may affect other parts of the body but these seem to be the most common. You should be given anti-sickness drugs and maybe steroids to combat the first after effects. I can only recount my experiences and what helped me through the experience.
I recovered very well from my hysterectomy and four weeks later was having my first chemotherapy treatment. I am lucky to live near the Christie Hospital, which has a reputation for excellence in cancer treatment so I felt pretty trusting in the choice of treatment. I have had 6 lots of Taxol and Carboplatin intravenously once every 3 weeks and finished a week before Christmas, so managed to be well enough to celebrate!
I didnít like the idea of having such powerful drugs, which in essence seemed like a poison to my system. Then I thought about it and realised that animals use natural poisons to cure themselves (cats and dogs eat grass when they need to be sick) and in all civilisations we have used poisons and painful methods like fasting, blood letting and leeches to cure ourselves of diseases and actually Taxol was originally made from the bark of a Yew tree. (There are websites that give more information about chemotherapy drugs.)
So this somehow reassured me and although I felt very tired, had aches and pains and flu-like symptoms and my system was upset for a few days after my chemotherapy I was pretty good for around 2 weeks of the cycle.
I found it hard to stay positive for the worst couple of days and I imagine the drugs had an impact on me emotionally as well as physically, but again I knew that meant the medicine was doing its job and getting rid of my cancer.
As having chemotherapy has felt a bit like living through the cold, barren winter, as leaves and plants die away and I eagerly waited for spring to warm the air and for new life to show through the thawing ground. I am glad that the seasons have actually matched my experience. It helped me to think of it as a sort of hibernation period which would end in time for spring. I looked forward to emerging from my cave into the sunshine and having the energy to walk through the bright spring flowers and visit the countryside to see the first new lambs and ducklings celebrating their newness!
I shall list some of the things that have helped me through the side effects of the chemotherapy, although I did not have as many as the long list that the nurses read out on my first treatment!
Upset Stomach - I felt nauseous for a few days after chemotherapy and found it hard to eat and drink much, especially the good stuff like fruit and vegetables. The anti-emetics that worked best for me are called Zofran. I also use ginger cordial, fresh ginger chopped and lightly fried with rice and crystallised ginger to help when I felt nauseous. I have found that one or two drops of peppermint essential oil to be sniffed on a tissue can help as well, although NOT for anyone with a brain tumour as it can bring on epilepsy.
I also took Aloe Vera liquid to help soothe my stomach and Slippery Elm Bark in milky drinks. I found that I could only stomach ďbaby foodĒ like milk, mashed potato, porridge, rice, custard, scrambled eggs, etc. I was also advised to eat little and often rather than trying to digest big meals. Dry biscuits, rice cakes, salty rather than sweet food suited me best for a few days after chemotherapy. So for those days I treated myself like a baby, which included resting whenever I needed it and not expecting too much of myself.
I got a useful tip from a visitor to the website, Kara, who found that drinking Sprite lemonade really helped her when she felt nauseous.
Aches and Pains, flu like symptoms - Resting, paracetamol, plenty of fluid, calming music, lavender and other oils, relaxation, meditation, reminding myself that this time will end and I will feel better soon. Just surrendering to my bodyís needs seemed to be best (although not easy for someone like me who likes to be active and doing lots!).
Sore Mouth - I got a sore mouth and often mouth ulcers for a few days with a nasty, metallic taste. I got antiseptic and antibacterial mouthwash from my GP and also found pineapple (fresh or tinned) helped too. It has an enzyme in that naturally soothes the mouth. Some people say that sucking lollies or ice cubes has helped them.
Hair Loss - Not everyone will lose their hair. It depends on the type of chemo and the individual. There is something called a Cold Cap that you may be able to have that helps prevent hair loss. I couldnít have it because my treatment took about 6 hours and that was too long for a cold cap. I decided to get a very short hair cut at the start of my chemotherapy as I was assured that I would lose it a couple of weeks after the first treatment. I did, but it wasnít quite so bad from a short cut. When most of it had come out I got it shaved, which felt better to me. I really didnít like losing my hair and later as my eyebrows and eye lashes also gradually disappeared (apart from a few loyal soldiers!) I found that especially hard. Most people didnít notice of course, but I did! In fact I lost almost all my body hair, but the rest I didnít mind so much and at least it saved me money in waxing!
It was only a few weeks after ending chemo that my hair began to grow back and I just loved feeling my eyelashes growing a bit more every day!
Guided Imagery - When I felt a bit better I used various tapes and CDs to help me focus on my goal of getting well. See section on Positive thinking for some examples that you can try.
Diet and Nutrition - The Bristol Cancer Centre provide a down-loadable leaflet that gives useful advice on this and there is lots of information in the book Everything You Need to Know to Help You Beat Cancer by Chris Woollams (see bookstore).
I did my best to stick to a mainly wholefood vegetarian diet with oily fish and took extra Vitamin C, Selenium, Primrose Oil, and Echinacea for 10 days between chemotherapy treatments. I also drank between 2 and 3 litres of fluid a day, 2 pints of which were diluted with a very tasty apple Detox squash sold by Holland and Barrett.
I used Linseeds every day and found that, apart from a few days after chemotherapy when the anti-emetics constipated me, my system worked very well. This is what the nutritionists want us to achieve as the theory is that the better our systems flow and the least time food sits in our guts being digested the better our immune system can function.
Care for yourself as if you were a young baby.
When suffering the worst effects of chemotherapy I felt as if my system had regressed almost as if I needed to treat myself the way I would a newborn baby, with a sensitive digestion and needing really sensitive handling.
I experienced radiotherapy when my cancer recurred 2 years later. At first I was mightily relieved to have this option offered as I had found the chemo really hard going. I knew a few women who had had radiotherapy for breast cancer and told me that it was much easier than chemo and had mainly just made them really tired and occasionally caused some side effects on their skin at the site like sunburn. I was warned that because it was near my stomach and bowel it may cause me to feel nausea and maybe diarrhea plus tiredness. Not bad I thought - I can cope with that! Unfortunately I may be one of those people who are more sensitive to radiotherapy and of course just like chemo, how you will be affected depends on where the tumour is and how often you have treatment as well as your general health and resilience at the time.
I did feel some nausea and bad pains all down my legs probably because it aggravated the sciatic nerve - not very common apparently. I certainly didnít feel as bad as I did while having chemo and still managed to eat a pretty healthy diet although I did need to rest a lot.
The main benefits for me were that it was over in 2 weeks and I was pretty much fully recovered from the treatment about 2 months after it ended, although I did struggle to stay optimistic some of the time. Mentally it was draining and I felt pretty low at times especially as I just felt too tired to keep up my running and to do the things I love like swimming and riding.
All the tips I gave above for side effects of chemo could apply to radiotherapy. One difference is skin care - they suggest you avoid washing the affected area with soap and stick to E45 or emulsifying ointment, avoid swimming (chlorine can make your skin sore) and wear loose cotton clothing.
I also used Aloe Vera gel and had some Rescue Remedy cream handy, although my skin wasnít really affected, apart from a small patch on my back that was slightly sore and itchy for a while.
I only had 8 sessions which probably saved my skin from burning but many women have to have about 15 sessions for breast cancer treatment and I have heard that it is common to get some soreness. Iím not sure if suntan lotion is OK to use as it might affect the radiotherapy.
Expressing your feelings
Although I felt down and much more vulnerable and insecure just after the chemotherapy treatments, most of the time I felt quite positive, optimistic and even happy!
However just before my last treatment I began to feel strangely anxious and upset. I began bursting into tears over ďsmallĒ apparently insignificant things and often felt grumpy. Yet Iíd been longing for the chemo to end. As I talked to friends and to my chemo pal Joyce about it I realised that it wasnít strange at all.
The chemo might be unpleasant but it gave me regular structure in my life and some sense of security as something was being done to me to get rid of the cancer. When that was finished then there was just me to keep it away and that was scary even though I have been doing what I can to build myself up and focus on a positive outcome. The ďwhat ifĒ questions kept forming in my mind and a desire for a guarantee of wellness.
Having accepted that this is most probably natural and common and also realising that I really didnít have the right space to deal with the trauma of diagnosis, a major operation and then the assault of chemotherapy, I believe that I needed to allow myself to accept and express all my feelings about the whole process and what it meant to me. It is probably like Post Traumatic Stress as during the trauma, when action needs taking to save our lives, we usually go into autopilot mode in order to survive and just get through the initial phase.
So I guess I entered a phase where I needed to allow myself time and space to fully account for the trauma and what I had lost in the process. Having the support of my partner, friends,the Beechwood Cancer Care Centre, a therapist, reiki and acupuncture has helped me immensely. We all need support from people who can listen and cope with our different and sometimes contradictory emotions and needs after the treatment is over.
I expected too much of myself afterwards and was getting ready to return to work a few weeks after the last treatment. When I noticed how anxious I got in this process and found myself saying I never wanted to go back to work and bursting into tears I knew it meant I needed more time to recover. The hospital told me it would take at least 2 months to recover physically from the chemotherapy. So I gave myself a break even though it made me feel the loss of my old life even more sharply. At least I could give myself the space to do what I needed to in order to help the healing process.
I did not find it easy to give up my plan to return to work a few weeks after finishing chemotherapy. It really intensified my feelings of loss and had financial consequences as well. I realised there is no escape from the grief of losing so much, even if some of it is only a temporary loss. Some people may find it hard to understand why we might feel more vulnerable at this time as they could expect us to be delighted that the chemo is over and want us to be well and happy. You really need to be with people who can accept your feelings and manage their own feelings about your illness.
The main thing is to accept whatever you feel now as valid and natural and to share it with understanding people or maybe write it in your diary. Feelings come and go and the more you can allow yourself to feel and stay OK the more fluid and free you will be. It might not be easy but you will feel the benefit. Remember it takes more psychic energy to repress and deny emotions than to let them be!
Positive thinking - As long as you are not denying your vulnerability then focussing on a positive outcome can only be helpful. As already stated we cannot underestimate the power of our minds to aid our healing. I was given a CD that claims to combine the science of affirmations and technology and conceals positive affirmations within gentle sounds of nature thus bypassing our conscious mind and getting straight to our subconscious which then realigns itself towards the positive messages. They sell many different CDs but give the one on Cancer Remission away free. See www.innertalk.co.uk.
I used mine everyday during my treatment and I was able to maintain a positive attitude much of the time.
Something to look forward to - I did find the chemotherapy pretty gruelling and at times in the worst moments I found it hard to keep the end in sight. Having something special planned to treat yourself and celebrate coming through it all is vital in my opinion. I had 10 days in Spain booked for the next Easter as my main treat. I also planned to have a day of pampering at a health spa and a party to make up for losing my birthday to chemotherapy that year! Of course we all have our budgets but there are lots of ways to treat yourself. Go on and get something in your diary now!
I think itís also useful to plan treats and do things that you really enjoy when youíre well enough during the treatment. My great love is horse riding and I could have kissed my consultant when he told me I could go riding again after my hysterectomy check up. So although I rarely managed a ride the week after chemo, I usually managed 2 the week after that and the riding school, who have been wonderful, were very happy for me to go down and feed and stroke the horses whenever I want to. This has been very therapeutic for me even when I couldnít manage a ride.
Having experienced radiotherapy 2 years after chemo I would say that pretty much all the above hold true in managing that treatment too. But once again I have got through and feel like I have got my life back again - hopefully for a long time!