Peripheral Neurophathy

Take a think about what you have done so far today. Even those unconscious things that you just do without thinking and take for granted and then I'll tell you how my evening and morning have been.

When I had chemo first time round (back in 2011) I had to have a stronger dose of Oxaliplatin as I was having it every three weeks not every 2. This meant that the side effects kicked in quicker. The breeze over my face or in my throat was enough for it to start seizing up and becoming painful. There were times I was wheezing as I walked out of the hospital. 

The poxy oxi is not so strong this time but last night the dreaded neuropathy kicked in. Alongside the vomiting this is just enough.

So even walking to the car my face is going numb, holding my handbag is uncomfortable because it is cold. I struggle to text Tony because the screen is to cold. 

Driving home we need the window open because I need fresh air when I am vomiting every 20 minutes. But this again makes my face feel really uncomfortable and sore because of the breeze.

Walking from the car to the house is just as bad and it is getting worse now, which is what I as expecting. The pain and tingling is horrid.

I go upstairs to go to the loo, the toilet seat is cold so I loose some sensation in my fingers lifting it and then loose sensation somewhere else while I am sitting on it. 

I need to take my painkillers, but need to run the hot tap first to get tepid water so I don't loose any sensation in my throat. But in order to do that I need to check the temperature so it is not too hot that I can't swallow it. Catch 22, fingers are numb, but throat is not. I decide to take some oromorph as my pain levels are quite high, but this is cold to swallow and causes some choking as I can't swallow it correctly.

Even the duvet and pillows being cold causes me problems and tingling.

Fast forward to this morning, I have had to find a pair of gloves to be able to take milk, butter and fruit juice out of the fridge to feed the children breakfast. Even bread which has been on the side all night gave my fingers a tingle. I had to run the tap again to get tepid water to make squash for me to drink and take my tablets as stuff that has been on the kitchen side all night is to cold. 

I am dreading changing Hope's nappy as I know that using a wet wipe will be agony, based on the fact that I used a face wipe on my face last night as part of my routine and didn't think about what I as doing. 

Peripheral Neuropathy - Making life difficult for cancer patients

Today's news

Well, the headlines.

The tumour hasn't grown, but equally it hasn't shrunk which seems to suggest that it hasn't responded to the current chemotherapy regime of Irinotecan, 5FU and Avastin. 

This means that I need more aggressive and evil chemotherapy. This means more oxaliplatin and 5FU. 

You may remember oxaliplatin or poxy oxy as it is known amongst the bowel cancer patients. It is the one that cause peripheral neuropathy, you know, the tingling in the fingers & toes and numbness in the cold. 

I cannot wait, luckily I don't have too. Dr Cummins wants this to start on Monday! yep like after the weekend!!

I will be having this fortnightly so at a slightly lower concentration than I had previously, and I'll have 6 initial sessions, then another scan to see what the progress is. 

Hopefully the removal of the Irinotecan and Avastin will curtail the bleeding and so that will alleviate some of my worries.

Don't be under any illusions though. I am still very ill. If this lot of chemotherapy does not work, we have to start looking into alternatives, radiotherapy, trial therapies, anything to try and target this awful disease. 

In the meantime I read about an app you can download to help scientists try and find a cure for breast cancer. So if you or your significant goer, or anybody else you know is a gamer, visit

http://www.cancerresearchuk.org/support-us/play-to-cure-genes-in-space 

and download the app. It's free, and helps fight cancer. 

Information overload

So today was chemo information day. 

Chemotherapy is a bit like pain killers. It's not one size fits all. Different cancers require different chemotherapy drug combinations and regimes.

For bowel cancer as a primary cancer there are 2 different regimes. The oxaliplatin and capceitabine that I had last time or oxaliplatin and 5FU. As you might remember the oxaliplatin completely wiped me out and I only managed 4 cycles before the peripheral neuropathy became unbearable.

I have left today's meeting feeling much more positive about the chemotherapy I will be receiving this time as the side effects all seem much more manageable.

I am going to be having irinotecan which is an infusion which will be given through my PICC line and then a 48 hour infusion of 5FU which will be deliverd through a small pump. There is also a third drug that I may be able to have called Avastin. Avastin is a monoclonal antibody and attaches to the tumour and targets specific proteins. Whether I can have this or not depends on the histology (make up) of my tumour. There is no point having it if I don't have the correct type of tumour.

One of the most well known side effects of chemotherapy is hair loss. This is something I didn't experience last time as this was not a side effect of proxy oxi & capceitabine. This is a side effect of irinotecan.

So, what am I going to do about that? I don't care about loosing my hair, I can rock a hat or a headscarf, and ultimately I want the cancer gone and loosing my hair is a tiny sacrifice too make. 

But I have 3 young children who would be scared if mummy's hair suddenly started to fall out so like everything else I have told them.

So far they know that mummy has baddies back in her tummy and they can't cut them out, but mummy is going to have special medicine to shrivel them up like fruit that we leave too long in the fruit bowl. 

Today I told them that the special medicine is going to make mummy's hair fall out, so to make sure that it likes nice when it falls out Auntie Jo is going to cut mummy's hair short like Isaac's. Imogen didn't say anything but I think she is scared by mummy loosing her hair. Isaac thinks it will be cool!!

So keep your eyes peeled for the all new look Ruth, coming soon to a screen near you.