Just diagnosed with cancer?

Few tips for those recently diagnosed with cancer, getting ready for a surgery & chemotherapy treatment

I can’t help & give advice how to cope with the diagnosis. I probably can’t make it easier to face this terrible news. It’s dramatic, mind-numbing and very personal experience which I wish none of us have had to go through. I will try however give you a few practical tips which I learnt while going through all of this myself.

Preparing for hospital stay & surgery

Don’t pack too much stuff to the hospital. Remember that there will be someone visiting you every day if you stuck for something. Before you go to the hospital make sure that you have these in one place at home ready:

• spare pyjamas,
• spare socks,
• spare dressing-gown,
• sleepers,
• spare towels,
• and anything else you think you may need

It will be so much easier for someone from your family or friends not to have to search for these and bring exactly what you need and when you need it. In the hospital keep just one spare pair of socks, one pyjama, bath towel and one small hand towel.
It’s nice to have your own pillow and blanket so bring them too.

Cosmetics – try to minimise quantity and sizes. Don’t think about smokey eyes, beautiful hair and nails. Depending on what kind of surgery you will be going through just being able to brush your teeth will be a big success. Buy small, travel size bottles of soap, shampoo, hand cream, body lotion and a toothpaste. Make sure you have a vaseline for dry lips and a good moisturising face cream.
Baby wipes and hygienic hand rub – your two best friends to protect from germs!

Don’t bring too many books or magazines. First week after surgery I didn’t even touch any book or magazine. My husband brought me a kindle but it was too heavy for me to hold in my hands or lie on my belly. He took it back home. Your family/friends can always bring you something new and there are always other patients willing to exchange. Some hospitals have a mobile library as well so you can have books delivered to your bed.

No one likes hospitals. Sometimes time is dragging so slowly. First few days after surgery I wasn’t even able to move or do anything due to high dosage of morphine, fentanyl and other opioid drugs. Later on, crossword puzzles and  sudoku kept my mind occupied. Definitely have your phone, charger and headphones.

Information

Financial Help

Make sure you talk to a social worker. Ask any nurse and they will arrange a visit. Remember cancer apart from being a dreadful disease it’s also very expensive one. I never had a medical card before but the social worker from the hospital advised me to apply for one. She/he will talk to you, will help you to fill in all necessary forms & documents. I got it for two years. You may also qualify for once of payment from The Irish Cancer Society. It is definitely worth a try as you will be visiting your GP a lot and the medicines for chemo are expensive.
If for some reason you will not qualify for a Medical Card make sure you sign up for a Drug Payment Scheme.

Hospital Car Park

Talk to a nurse or guys managing the hospital’s car park about a parking ticket. My husband spent almost €700 on hospital’s parking before I found out that I could have gotten a special ticket which would allow him to pay a maximum of €5 a day regardless of how many hours parked.

Psychological Support & Help

Talk to your doctor about meeting oncological psychologist. Cancer, surgery, chemotherapy and recovery is a very hard and long road ahead of you. You must be strong and positive and believe me on your own it’s going to be extremely hard. Those doctors will help you to go through it. I am still, over a year after surgery and 8 months after my last chemo, visiting them and trust me I could not have done it without them.

Going home

That was a scary moment for me. In the hospital you can always ring the bell and a qualified nurse will be at your bed in no time. Don’t worry though… home is home and believe me you will feel much better in your own bed.

Before leaving the hospital you will get a lot of information from your doctor and the nurse. The amount of it was a little bit overwhelming for me and I am not sure I remembered half of it. Just remember that you will get a sheet of paper with names and phone numbers to call if you have any doubts, questions or worries. If there is the smallest thing you worry about – don’t think twice just give them a call. These are people who deal with the same or similar questions and worries on a daily basis. They will be able to help and 9 out of 10 times they will put you worries away.

Rest, rest and rest even more

Try not to worry too much. Eat healthy. Medicines and pain killers will make you constipated. That was one of the biggest problems I had after the surgery. The fact I had my bowel cut in two places didn’t help but what I found working was slow walking and gently massaging my belly. Drink plenty of water and try to move as much as possible – that will help. Don’t hesitate and ask your family and friends for help. If you have a partner it’s overwhelming for him/her as well and they will need all the help as well. Your friends and family most likely want to help but maybe unsure of what they can do and how. Don’t hesitate. Tell them exactly what you need and what would make you feel better. If you have kids ask for help in providing them entertainment. Ask them to cook for you. Maybe a big pot of your favourite soup which you can freeze and use whenever needed. Ask if they could do some grocery shopping for you or maybe clean your house for you. If you need someone to stay with you, watch tv or lie in bed with you and talk – ask for it.

If you have kids ask them for help. You will be amazed how much they can help and how proud they will be if you let the help. My son was 4 years old when I came back from the hospital. He was amazing. Very helpful, careful and gentle. He didn’t know exactly what was going on. He only knew that his mummy’s tummy was ill but he was so happy he could help with the smallest thing. Even now, 14 months after the surgery he’s often asking am I ok and if my tummy is ok and is there anything I need him to do or do I want to rest and have a nap.

Chemotherapy

I was lucky. It wasn’t as bad as I expected it to be. I had 6 sessions. One session every three weeks. It was taking 6.5 hours to get one. I always had my blanket and my pillow with me and they made me comfy. Wear comfortable clothes, going to toilet with a drip in your arm is not nice. Make sure you have plenty water to drink, some snack, hygienic gel and baby wipes. Bring a magazine or just sleep this through. Chemo itself wasn’t that bad. I found the injection I was taking within 72 hrs after the chemo much worse. This injection’s purpose was to stimulate my bone marrow to produce blood cells. I felt after it as if I was hit by a train. It was causing my bones to hurt really bad. Started in a big bones like hips and  legs and slowly moved to the small ones. The way I managed it though was thinking that it’s just temporary and it’s helping me to go through chemo.

Hair loss

They will fall out most likely after your first chemo (it also depends what kind of chemo you will receive). Don’t worry too much. I know it is very hard but remember it’s temporary! If they fall out think of it as chemo doing its job. Chemo attacks quickly growing cells like cancer cells and your hair cells are similar in this aspect. They multiply quickly. If they die cancer dies as well.
Think ahead about shortening them, cutting them very short and then shaving them. Think about a headwear. I found it frustrating not being able to find suitable turbans or scarves. If you have kids ask them to pick some with you.
My husband shaved mine when I pulled the first lock of my hair. At least for once he could return the favour ;-). I didn’t want to see them falling off in bunches and seeing them lying around. After you shave them, look in the mirror and cry, cry, cry and when you are done don’t go back to this moment. They are gone. In the next few months you will get a new silky, healthy  and possibly curly hair.

My life and thoughts 8 months after chemo…

When you eventually get better try to stay positive and try to find balance. I worked very hard before I got sick. I was stressed and depressed. I believe that all that has happened to me had a reason. Now I know I have to slow down, find a balance between job and personal life.
Take it easy, side effects after surgery, chemo or radiation are quite bad and sometimes long lasting also some of them are coming later. Your body fought a very hard battle, is exhausted and needs a rest. Your immune system is weak. Look after yourself, even be a little selfish, think what is good for you and what your body needs. Eat healthy, start to exercise, stay close with your psychologist, maybe get involved in some activities you like. For example, I have organised with friends charity Bingo Night to fundraise money for Arc Cancer Support Centre. Even though it was so tiring, I felt absolutely great afterwards. It was fantastic, successful night and we raised a lot of money. Arc helped me and I was proud I could give something back.
I volunteered to help Special Olympics Ireland in their annually collection day in April, again, I was exhausted but this gave me a lot of satisfaction. Now my husband will take part in 5k Colour Dash for Irish Cancer Society as I can’t do it myself due my form…or rather lack of it ;-). But I’ve started to swim and do gentle exercises so hopefully next year I will be there!

It takes time to get better, it really does. People around don’t even realise it. They think that you look good, your hair is back that means you are healthy again. Personally, I don’t like it when people compliment me. I think they have no idea that myself and my family live with cancer now 24/7. I am still attending hospital so often that I think it is my second home (4 clinics, MR’S, CT’s, mammograms, ultrasounds). I am still having different kinds of side effects; still having pain in my bones, belly, bowel; my immune system is still weak and I am waiting for another surgery for my breast removal and reconstruction. Every new kind of pain gives me and my husband heart attack as we  immediately think that the cancer is back.

We need to learn how to live as a survivor. This is the hardest thing for me, to live a present moment and not to think too much and worry about future. So I am trying to:

• be positive (having better and worse days),
• be strong,
• take my time with everything,
• do not rush,
• do things  that I like,
• find the balance between job and personal life,
• enjoy time with my boys,
• exercise,
• eat healthy.

I want to believe that all above will help me and I will live long and happy life!

Useful links:

Irish Cancer Society

Arc Cancer Support Centre

Medical Card information

Drug Payment Scheme information