What helps? first of all, it is important that what you find here helped me, but it might not help you. There is not the one recipe that works for all. We are all individuals and everyone needs to find their own way of dealing with cancer! My chemo nurse always said „this is your movie, you are the screen director and only you decide what is happening!“ It is nobody else’s business – you need to feel comfortable and do everything that is good for you!
The other important thing – I am certainly not a doctor and will not give you advise on which treatment is the right for you. Talk to your doctor, get a second opinion and do what feels right to you. I am certainly not an expert either and what I collected here is simply to my best knowledge and I am happy to receive feedback & constructive criticism…
Diagnosis – you will hear a lot of medical terms, codes and numbers and here is little guide as to what that means.
example of a classification: G3 pT2 pN0 (0/3), cM0, ER2, PR2, Her2neu neg., Ki-67 80%
G = grade (1-3, where 3 is the most aggressive) ; T = tumor; N = nodi (sentinels) ; M = metastasis; c = clinical, which means the results are based on tests; p = pathological, which means that the results are based on the tumor pathology; y = post operation; ER = oestrogen receptor, PR = progesterone receptor; Ki-67 = growth rate – the numbers are different scores, e.g. T2 means that the tumor is between 2-5 cm
Find more information here: TNM staging system
If your ER, PR and Her2neu are negative, the tumor is commonly known as „Triple Negative“.
- Stage 0 means there’s no cancer, only abnormal cells with the potential to become cancer. This is also called carcinoma in situ.
- Stage I means the cancer is small and only in one area. This is also called early-stage cancer.
- Stage II mean the cancer is larger and has grown into the nearby tissues
- Stage III mean the cancer is larger and has grown into nearby tissues and lymph nodes.
- Stage IV means the cancer has spread to other parts of your body. It’s also called secondary, advanced or metastatic cancer
First steps after your diagnosis – one of my first call was to my insurance company to ask how they will support me. This is different in every country and the following information only applies to Germany, but you can use it as a guideline:
Get organised! After your diagnosis you will be bombarded with paperwork and information. What helped me tremendously was to get a pocket folder with different tabs – I categorized them by subject „prescriptions, insurance, hospital, chemo, etc…“ and this way I kept on top of it. The other thing was a notebook. I made notes everywhere… Doctors, nurses, the insurance company, anyone you are in contact with will give you a lot of information and despite the fact that it might seem logic at the moment, you will forget – especially, when it comes to your diagnosis and all the medical details. Make sure you ask, if something is not clear to you.
Sick note/ sick pay – your doctor will sign you off sick and you need to give the notes to your employer and health insurance. Your employer will normally continue to pay your wages for six month and afterwards that insurance company will grant you sick pay. You need to make sure to get the sick note each first of the month or the next working day. This is important, as otherwise, you will miss out on sick pay. The monthly rhythm ensures that you get a ‚regular income‘, as the sick pay is always paid in bulk for the period you are signed of sick. You are entitled to 18 month sick pay (including the six weeks your employer continued to pay your wage), but normally you will return to work nine month or a year later (all depending on the diagnosis, treatment and progress).
Some people decide to work a little bit during people and some people simply have to … there are all different models out there. If you can, try to do what is best for you and look after yourself.
Accept help – this is a difficult one, but one of the first thing I did with all the people, who said „let me know, if I can help in any way“: the ones, where I would be happy to accept help from, where put in a What’s App group called „Alex needs help“. It was a win win, as I told them that I would let the group know, if there was anything I needed and they could then see, who could help. It gave them the feeling of doing something and made it easy for me to cry out for help, if I wanted to instead of calling many people to find out, who could help. I only needed the group once, when I was suddenly kept in hospital and needed someone to fetch me some clothes, etc., but it is something that made me and my friends feel at ease with the whole ‚help‘ situation.
Household aid – in Germany you are entitled to an household aid, if you have at least one child under the age of 12 living with you, but exceptions show that some singles also got them…. check with your insurance company!
Paperwork – you can always ask the social services in your hospital to help you with your paperwork, e.g. to apply for a handicapped ID. Further paperwork awaits you to get your sick pay, to organize taxi rides to and from chemo or radiation, to name a few…
Wigs – you will get a perscription for a wig, if you want to. I did not want a wig, but my doctor said to get one anyway as a safety blanket to keep in my cupboard. She said that I would not know how I would feel during chemo and that I might get invited to a social event and if I would not feel like talking about cancer, I could simply put the wig on. Get a good address and personally, I would always go for artificial hair, as it stays in shape even after being washed while natural hair needs to be styled every time you wash it and it should be washed regularly to avoid itching 😉
First operation – now, this is different for everyone, but during my first operation I got my port, the sentinels were removed and a second tumor they had only discovered one day beforehand… the hospital will advise you, but after your lymph knot/sentinel removal, you should not lift anything, but start moving the arm straight away. First you will have a drainage, but that is usually removed quite quickly after the operation depending on the amount of discharge. Cabbage wraps helped my breast (put cabbage in the fridge, take a rolling pin and roll the leave until the juice is clearly visible and put the leave into your bra). Once the scars are healed calendula creme helped me a lot and regularly massaging the area, but your hospital will give you advise depending on the kind of operation you had. For the first day, your breasts might be tighly wrapped, but latest day two a tight sports bra is a must have to keep the breast tissue together, but in some cases you even get a prescription.
Breast care nurses – someone I met before my first operation in hospital, was a breast care nurse. These are special nurses trained to look after breast cancer patients. Not only are they experts with physical issues, but also with the psychological side of things and have useful advise, addresses, etc. My breast care nurse gave my addresses of wig shops, scarf companies, self help groups and registered me for a free „look good feel better“ make up seminar by DKMS LIFE , which is free of charge for cancer patients and not only do you get tips and tricks for e.g. drawing eyebrows, when yours are gone, but you also get a goodie bag full of products to keep… self care is so important and despite the fact that make up is the least you worry about right now, you are still a woman and still want to feel good
Teeth – during chemo you should not get your teeth professionally cleaned (due to the infection risk) and it is important that all your teeth are ok, so make an appointment. My dentist also recommended as special tooth paste and for mouthwash without alcohol.
Fertility – chemo kills your fertility and before treatment starts, you need to think about your family planning and the possibility of freezing eggs or ovary tissue… ask your doctor about your options, even if it is not a subject you want to think about right now…
Scalp cooling – my oncologist did not believe in it, but if you are interested. There is a cooling cap method, where you wear a cooling cap (which is permanently cooled by water running through it) for a while before, during and after chemo, which cools your scalp. The theory is that the chemo poison does not go all the way to the scalp and might not tackle the hair roots. Now, apparently this works for roughly a third, but some of these patients still loose a substantial amount of hair and if you have quite thin hair anyway it might not be worth the effort and possible pain (now this depends how you feel, but have you ever had a really cool drink really fast and had a brain freeze!?!? it is apparently similar, but for hours….).
Connect – now, again, everyone is different and while some want to keep to themselves, to connect to other cancer patients was my thing. only other patients will understand what you are going through right now and though I already shiver, when I hear the word ’self help group‘, I built my own – virtually via the social media and with people I met during treatment…. check out the Yes we can_cer website/ app to connect with other patients with the same diagnosis.
The first chemo (one of four rounds of EC for me) – sleep well and have a good breakfast, even, if you are not hungry. I always drank a bottle of hot ginger water before chemo and during chemo, which might have helped against sickness. Make sure you have everything to be comfortable with you – something to read (I also downloaded movies and had my meditation app ready), something to drink, fruit and candy or whatever makes you happy. Wear comfy clothes, as you will sit there for a few hours and mentally prepare yourself to relax. I was really nervous before I had the first one, but the psychologist said that I should picture a cancer cell and a healthy cell and then only think about my healthy cells how they protect themselves from the red poison… she said that one patient let them wear little raincoats, wellies and umbrellas, but I simply sent them on a little cruise 😉 What do you feel during chemo? I felt nothing, I just got tired…. so I went home, had the sickness medication ready and had some home made food my mum prepared – chicken soup and stews… the next few days I could not stand coffee and would eat stews with meat (which I am normally not a fan of, but I needed something tasty)… well, this is where everyone is different 😉 What you should not eat is grapefruit, as one of the enzymes stops the liver from breaking down the chemo poison, but your oncologist will advise you accordingly and check with any medication you take, if that is ok with your chemo (e.g. aspirin was something I was not allowed to take). I kept my nails polished during this time, as it apparently helps them…. and I always made an effort to dress for the occasion, but that was my thing 😉
What they speak about a chemo cycle, they mean that you get the chemo on day 1 and then you have a pause, e.g. 13 days for me, as I only had them every other week. Therefore four cycles take 8 weeks.
The next chemo type (Taxol) – now the cycles changed to weekly and I was told to remove my nail polish and treat them with a special treatment polish from the pharmacy. As described previously, cooling can avoid the chemo to reach certain body parts. This is what during Taxol, you might get cooling gloves and socks,
Genetics test – there are certain gen mutations (mainly known are BRCA1 and BRCA2, but there are several others), which indicate that you have a very high chance of a reoccurrence and might have inherited it. If you carry this gen, a mastectomy is often the consequence and therefore your doctor will need to know the outcome of this test before the operation options can be discussed.
Second operation – again – this is different for everyone, but after the chemos, the rest of my tumour and the tumour beds were removed together with my port. It is difficult to give common advice here, as all operations are different, but cabbage leaves are the way forward.
Radiation – now this is something that is highly technical, only takes a few minutes and you do not feel anything. I started getting really tired during the course of the 28 radiation sessions and my skin started being a bit red towards the end with a few soar spots. The advise the clinic gave me, was not to use any soap in the radiation area, no creams, lotions, oils and to apply baby powder twice a day (once directly before going to radiation). It worked for me and you should strictly avoid the sun…
Chemo pills (Xeloda) – here, a cycle is a bit different: you take the pills for 14 days every 12 hours and then you pause for one week. This chemo attacks the inside of your hands and the soles of your feet, but other side effects are common as well. Now what is essential and hand and foot cream. If you find a product with a high urea content, then go for it (e.g. Avène has one product with 30% urea – see link) and make it a habit to cream at least before going to bed. I also wore Aloe vera gloves and socks now and then, which also have a nice cooling effect… I still had to say good bye to a few toe nails during chemo and a good podiatrist is a must to avoid any infections.
Rehabilitation – in Germany you are entitled to go for a rehab paid by the German pension fund (depending which area you live in, it might be represented by another body, e.g. ARGE in my case). Normally the application is sent by the doctor, who is in charge of your final treatment, e.g. oncologist for chemo, radiotherapist for radiation, etc. If you start rehab within 2-6 weeks (depends on last treatment and area you live) after your last treatment, it is called Anschlussheilbehandlung and you can most of the time choose where you go to. Anything afterwards is called rehab. The intentation is to bring you back into life, but it all depends how fit you are and where you go.
… to be continued….