Chemo advice

Day 121-Saturday

Have a nice day spent with Matt. Manage to get out to go to the cinema and then out for dinner. We see 'Safe House' and it is good. Gets going quickly so you don't have to wait for the action to start.

Been having lots of stomach pain again. In fact last night it was keeping me awake. Lying on my right side was the only position that didn't hurt. Really frustrating and worrying. Keep trying to rationalize with myself that it is not cancer that is causing the pain therefore it must be scar tissue. Also really suffering with heartburn! I'm turning into mum and dad. They are always moaning about heartburn and indigestion! Hopefully is just due to all the drugs I am taking and it will pass once this is all over.

I am turning into a right whinge –bag!

Today's quote- ' The best things in the world cannot be seen or even touched, they can only be felt with the heart'.

Day 122-Sunday

I said a prayer last night for God to stop the pain. This is only the third time I have ever prayed to God in my whole life.  The first time was when I was 7 years old and my mum told me my granddad was in hospital and needed an operation. I remember lying on my bed, facing the wall, asking God to make sure he was OK. He wasn't and he died and since then I swore I would never prayer again. Instead, like I have mentioned before, I ask my dead relatives to help me.  The second time was when I got all the bad news last week. I prayed to God and my relatives to help me be strong and give me some good news. And they did. Last night I prayed just to God. And my pain eased and I slept well and I have had less pain today. Could be coincidence or my prayer could have been answered. Either way I don't think you can go through something like this without looking at the bigger picture.

Head to the cinema again. It's very limiting having fatigue, I am basically only good for the cinema, being wheeled around the mall or eating! Mum, Holly and I see Beauty and the Beast 3D. It was amazing and definitely one of my favourite Disney films. We were the only ones in the cinema (Obviously as all the kids are at school!) and it felt like a private showing!

Pick Matt up from school and we head to Safa Park for an hour. Nice just to lie there on a blanket reading our books. We used to go to parks a lot in England and I know this is something that Matt misses. A little bit of calm right in the middle of the city. Great to feel grass as well as we now officially have none left in the back garden! We agree to do this more before the weather gets too hot.

Wanted to write a little something about my experience with chemo in case people are reading this as they are about to start treatment. Before I started an old friend said to me "chemo is horrible but it is manageable". I think about this a lot and it is true. It's manageable one because it has to be but also because you have to keep remembering that it is improving your odds and hopefully saving your life. I think each chemo cycle is getting easier and I don't know if that is my body getting used to the drugs or my mind. There will be one cycle where you hit your wall, mine was cycle 3. Where you want to give up and run away. Re-group and re-focus and get back into it. Time passes quickly. Take each hour as it comes and keep distracted as much as possible. I think if we had a car that mum could drive, and she could take me out for even an hour each day on my bad week, I would feel better.

My side effects are changing as the weeks go on. Here are my side effects and what I find helps:

·         To start with I was getting mouth ulcers every cycle now I don't. Use a baby's tooth brush and alcohol free mouthwash- these really help. On the good week go back to your original toothbrush to clean the teeth better

·         Spots on my face, neck (really badly), chest and upper back. These are weird because they are not like normal spots. I have been using my camel soap and keeping my face moisturized. Nothing seems to help but the nurse assures me this should pass after a month with no chemo

·         Change in my sense of smell and taste-only lasted for the first 2 cycles

·         Jaw pain- for the first 24 hours I have a few seconds of jaw pain when I eat or drink. It only lasts for the first swallow but is really painful.

·         Muscle twitching- random twitching of different muscles. This was happening more for the first 6 cycles and normally lasts a few minutes. Feels weird but not painful

·         Sneezing- for the first 48 hours I sneeze a lot! The nurse said this is just me being sensitive to the drugs

·         Dandruff- just on my hairline and normally just for a few days once the pump comes out. Normally one wash with 'head and shoulders' sorts it out.

·         Thinning hair- handfuls start to come out when my pump comes out. My advice is a good volumising mouse and a good roller brush to blow dry your hair! Dry shampoo is also good at giving more volume. This one really stresses me out but, as my hairdresser points out, I do have new hair growing back! Have asked the Drs about taking something to help hair, skin and nails but they don't recommend taking anything whilst you are on treatment.

·         Hair feeling dry and brittle- my hair doesn't feel like my own. I normally have silky shinny hair but know it feels like a horse's mane. I have found that a Boots own make Henna mask does help to make it feel smoother and softer.

·         Bleeding nose every time you blow your nose. This only started after my cold which was about cycle 4/5. No solution to this one!

·         Pins and needles in my hands. Always worse with cold so don't touch anything in the fridge without gloves on for the first week. We have to keep all our fruit in the fridge here because of the heat and I find that I have to re-wash them in warm water before eating and I have to hold them in a napkin. Remember to always turn the hand taps to warm before you wash your hands- been caught out a few times. Avoid touching metal

·         Throat constriction with cold- only drink hot or room temperature drinks for the first week. Avoid all frozen foods! The other day I had a PinkBerry frozen yoghurt (these are amazing and we don't have them in the UK. You get different flavoured frozen yoghurt with different fresh fruit around the egde) and although I was 5 days post chemo I wasn't ready for the cold! Caused my whole mouth to fuzz and go numb and then gives you the feeling of something being stuck in your throat. Not pleasant but I carried on eating because it was soo tasty!

·         Spasms in the hand- this can happen randomly! you will be using your hands and suddenly a few fingers gets locked in a straightened position. I find that rubbing them warm and gently using the other hand to bend them helps. Normally passes after a few minutes

·         One time I had a painful sole of the foot (called hand-foot syndrome by Drs). Felt like my sole was covered in blisters and sore to walk on. Lasted just one day.

·         Weak nails- generally my nails have been good but this last cycle they are just starting to become weaker. Haven't had them painted so this obviously helps with their strength

·         Diarrhea- just had badly after cycle 2. I have been really lucky with this as it is meant to be a really common side effect. To prevent the diarrhea I tend to use the BRAT diet for the two days after the pump comes out. Toast for breakfast, banana sandwich for lunch and meat and rice for dinner. I avoid fruit, raw veg, dairy and fizzy drinks for those two days also

·         Heartburn- this is my new thing for the last 2 cycles! Yet to find anything to help but will keep you posted

·         Nausea- this is the biggy! I recommend taking ginger tablets for the two days prior to chemo ( Dr K got me onto these after a study done with breast cancer patients), eat little and often (you feel worse if you are hungry), plain biscuits help, distraction and stick to the anti-nausea meds religiously. I take them every 4-5hours whether I feel nauseous or not for 5 days.

·         Fatigue- this can be the killer if you don't control both mentally and physically. The best advice I can give is regular exercise in the day (I do my 2-3 walks), scheduled sleep sessions during the day, distraction, pacing activities, keep supportive messages so you can re-read if feel down and don't be too hard on yourself.

Today's quote-' You never know how strong you are until being strong is the only choice you have'.