Advice for my friend about cancer.

Recently, a very good friend has had a similar diagnosis to mine, almost exactly one year later. I sat down and tried to think of all the little bits of advice that might be helpful.

Have an outcome in your mind- be clear that you want to get back to full fitness again. The side effects of everything are terrifying, so be clear about asking questions about what can be modified.

1. Surgery Consultations 

• Be smart and put together- it helps to be calm and methodical

• Bring someone with you and ask them to take notes

• Ask questions- nothing is too stupid

• Ask what would happen if…

• Ask for other options- it helps you see that what they are proposing is the right course

• Do go away, sleep on things, research and read. You can turn things down.

I managed to negotiate with my surgeon to not have all my lymph nodes removed. I was worried about lymphodemia. I also read all the latest literature and the outcomes of full removal wasn’t so great in my exact situation. Hard to find exact comparable but you can get really close if you keep digging.

Lots of outdoor walks and fresh air helps.

2. Staying as healthy as possible

Exercise as much as you can before and be as fit as you can without damaging your immune system

• Keep exercising after surgery

• Chording (thickening of lymph node channels) is real and painful and so you must work and stretch those arms a LOT- I started every morning in the shower then 3-4 x per day

• Massage under arm 

• Lots of oils and creams for scars- don’t let them harden 

• I set an alarm and put exercise in my diary so I moved every 1-2 hours

• Lots of walks

• Lots of fresh fruit, vegetables and lots of water

Supporting yourself mentally

• I got into meditation again, I practice TM, but any calming app would help. Sometimes you are exhausted but you can’t sleep due to the drugs etc

• Obviously support of family and friends is everything, but I did have to take some time alone with myself to get my head around what was about to happen. At times I felt emotional and it was hard to stay strong, but I’d made a decision that I was going to experience everything that was happening to me and observe it.

3. Surgery

• Comfy clothes to wear in layers- hospitals are either too hot or too cold!

• Decent slippers/ Birkenstocks

• Eye mask with gaps- such as Nidra

• Ear plugs

• A good book

• A couple of films

• Lavender and oil for massaging your feet- smells great, is calming and healing.

• Lots of fizzy water

• Be prepared for plans to change- shifting wards etc

  

  Pretty drowsy after 8 hours of surgery.

  4. Chemotherapy

• Its all about % and finding out yours

• I had my treatment modified to not cause nerve damage to my feet and hands

• Took 2-3 appointments and conversations with my consultant to really understand everything

• I had the cold cap- not so bad actually- first 10 minutes are painful- took paracetamol beforehand

• Wore warm clothes and had a scarf

• Good book, snacks, patience, little thermos of coffee

• I kept an eye on all my treatments and the timings- Fridays are especially busy

• It can be hard to see so many people, it can make you feel very vulnerable

• Staff are supportive

• Having a PIC line was incredibly upsetting, and took getting used to for showers etc

• But once in chemo its MUCH easier for your infusion 

• Pic line needs flushed 1 x per week and you get to know the staff- really friendly

• Bring a Book, buy a nice water…!

• Steroids are mad! Be warned- and make sure your family know about the side effects

• Apart from that it wasn’t too bad.

• Don’t eat too much!

• Exercised all the way through- started even dancing again during chemo 

• Hair loss- it was a really odd experience 

• Ice cap helped

• Castor oil is magic ingredient- put on at night (careful if you have a dog as it is toxic to dogs)

• Oils, creams are very important for keeping skin from becoming dry and itchy

• Mouthwash V important - keeping mouth really clean

• Look after yourself nails and watch for any skin issues

• I’d get a huge rash sometimes all over my back and legs, so would rest more and be careful with gentle products and it would go after 2 days 

The ice cap was painful for the first 10 minutes but I think was effective in reducing hair loss.

5. Radiotherapy

• Again first day was the worst- cried all the way through! People were lovely but often it was different teams each time which was unsettling 

• Really gruelling - going to hospital every single day

• I’d park a mile away and walk to the hospital and back along the canal to decompress 

• Naked, feeling funny about new chest

• Holding breath

• Exercised all the way through- danced as well.

• Tiredness afterwards was very odd.

• Feeling some consequences now- gallstones?

• Udderly cream was brilliant- very gentle and soft

  

  Negotiating my hair cut with my amazing hairdresser Simon, who was a great support.

  6. Tamoxifen/ hormones 

• Again- let consultant know exactly what life you want afterwards

• Mine didn’t give me more drugs as they would affect my joints too much

• Negotiate with them and what outcomes you want

• Read up the latest literature- cancer is changing really fast.

Life seems to have more meaning than ever after an experience like this.

Please note this is not medical advice and I am not a qualified doctor.