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.

6 weeks to go

This post will contain irrational ranting and is probably best not read by anyone thinking of becoming pregnant for the first time.

Now that that is out of the way I can tell you a couple of things. 

Pregnancy and me do not get along. 

This time last year I had taken my last dose of capecitabine and my follow up appointment was about 6 weeks away. That was scary. I knew that they had removed all of my tumour and a large amount of lymph nodes around my bowel. I knew that the tests had confirmed that the cancer hadn't spread. I knew that the 6 months of hell I had been through in the form of chemotherapy were over and were only preventative rather than curative (?). But I was still scared. You can't help it. You're only human and however hard you try to focus on the positive the negative always creeps in.

In the same vein this pregnancy has been like this for me. I have seen the healthy baby twice on scans and, although scans are not infallible, know that there is very little likely to be wrong with this baby. I know that going into hospital to have a baby is very different to being refused an ambulance, having to wait 4 hours for an out of hours doctor who diagnoses appendicitis and calls you an ambulance to take you to hospital in the middle of the night. This doesn't stop me being terrified of the prospect of having to go into hospital again.

Childbirth represents a loss of control. You cannot predict when you are going to go into labour. I have had one child born at 40 weeks and 6 days and one born at 38 weeks and 6 days. This one could turn up at 36 weeks or 42 weeks. You genuinely live in the dark. When you have two other children to consider along with school and pre school runs this creates a dilemma. Add into that mix that your husband is starting a new job at the same time and you can see why there is a loss of control here.

For me at the moment though the main concern is getting through the next six weeks. Ever since I pee'd on a stick and it was positive I have had back ache. I have seen the physiotherapist, although to be frank she was very hands off and gave me a couple of stretches to do, which I could have worked out myself, advised me to sit on hard backed chairs and gave me a couple of massages. When I asked for some advice as to whether I would be better seeing a chiropractor or an osteopath she said she wasn't allowed to recommend either. 

The level of pain I was experiencing was getting so bad that paracetamol didn't cut the mustard any more so I dragged myself back to the GP and got a prescription for co codamol. I have now reached the stage where this is not even effective. 
I have just re read the dosage instructions. 

Take 2 tablets every 4-6 hours. Do not take more than 8 tablets in 24 hours.

I was coping on 2 tablets every 5 hours, but this meant that the pain relief was wearing off before I took more tablets and so had to wait for the next dose to kick in which involves spending at least an hour in pain. I cannot wait 6 hours between doses and need to take them every 4, but this means that I cannot sleep due to the pain. I am fighting a loosing battle. 

This has now culminated in me being awake since about 2am, as I took my last dose of tablets at 10pm. I finally succumbed to take more at 6am thinking foolishly I could try and get through to midday before I took some more. I probably got about 20 minutes more sleep before I was joined in bed by Isaac & Imogen. 

So I am writing off today. I may watch the Australian Grand Prix highlights later as I turned it off to let the children watch cbeebies while I dozed. I will also be making a GP appointment to discuss the pain management situation.

Goodbye and thanks for all...

The crap that you have inflicted on me over the last 6 months. 


If you are wondering what on earth I am talking about today is a day for celebrating. 


This morning I took my last handful of chemotherapy tablets which looked like this

and was looking forward to a morning 'bragging' about the fact that I no longer had to take chemotherapy. However things didn't quite go according to plan. As we were leaving the house to take Isaac to preschool he vomited all over the garden path so instead of having some adult conversation and lots of pats on the back I spent today watching this Thomas the Tank Engine film, which I can almost recite word for word and am planning on going on Mastermind with it as one of my specialist subjects and also a lot of cbeebies. 


The thing with Isaac and being sick is he seems to have 6 hour bugs. After the vomit he had a sleep any by 1pm was back to normal, demanding to do cooking, play on my iPad and building the Island of Sodor all over my living room floor. 


However this enforced sojourn at home gave me some time to reflect on my chemotherapy experience. 


The overwhelming feeling I have at the moment is a strange one. I feel like a bit of a failure and have been beating myself up over the fact that I couldn't tolerate more Oxaliplatin. I know I managed 4 sessions, but I was supposed to have 8. Ultimately I had to think of my children and the impact that the chemotherapy was having on them but I can't help thinking that if (or when, depending on what mood I am in) cancer comes back I will be thinking if I had continued the 'poxy oxi' would it have been better? 


Overall I have been very lucky and have not lost any of my hair, but there are worse side effects than that. 


I am still suffering some of the oxaliplatin side effects.Tonight I took a bag of chips out of the freezer and dropped them because my fingers went all tingly and numb. On top of that my hands and feet are raw and cracked and no amount of cocoa butter and cotton gloves and socks can sort out. Since January I have gone through 3 tubes of Norwegian Formula handcream and still I have splits all over my thumbs and fingers, but I still have to get on with it. Add into that the fact that walking feels like walking on glass unless I have insoles in my boots. 


And don't even get me started on the unpredictability of my bowels and the fact that this could be post surgery 'settling down' or a capcetibine side effect or some other thing that I hadn't even contemplated. 


I think my potty trained daughter sums it up best. Whenever she sits on the potty or the toilet do do a poo she tells me




'Big, Big  Scary  POO  mummy'

I'm full of Christmas cheer

So, I had my 5th chemotherapy appointment this morning and am currently sat in guildford friary shopping centre before heading back to the hospital to pick up my tablets. There will be no IV drip today. As regular readers will know I have really suffered with the sensitivity to cold caused by the oxaliplatin. After session number 4, I was regularly having to cover my mouth when out walking to stop me becoming very short of breath, I I was feeling the cold through gloves especially when pushing the pushchair & even struggled unloading the washing machine yesterday because the laundry was cold and my fingers went all numb again. I told all this to my dotor and he appeared to be concerned enough to stop the oxaliplatin and give me a larger dose of capceitabine(?). To be honest at this moment in time I am not sure what I feel. I don't know if this is a permanent solution or whether I will have to have it again in the future. I feel like a bit of a cop out. I was bought up that you finished a course of medication and having been on anti depressants for the best part of 10 years I know what the effects of missing one day/treatment can be. On the other hand, the side effects were seriously affecting my quality of life and more importantly my relationships with tony and the children. So what now? As mentioned I have been for a shop in Guildford and spent most of my Christmas money and have to head back to the hospital soon to pick up my tablets and have my PICC line flushed and redressed. But at least now I will be able to drink cold drinks and can go back to having cereal for breakfast rather than porridge, which I am not a massive fan off!!

Something on Side Effects

I am rapidly coming to the conclusion that the side effects are far worse than anything I have been through so far. 


A new one hit me today - painful soles of feet. I had forgotten that this might happen until it hit me this morning that my feet shouldn't really hurt. 


After a quick trip to Sainsburys to invest in Milk, Bread, Oil and some insoles, which might or might not work. I decided to look at the interweb.


I have found the forum on Beating Bowel Cancer really helpful and was not disappointed this time either. 


It seems that this particular side effect is going to get worse and I might have some days when I am going to struggle to put weight on my feet. This will be .....mildly inconvenient to say the least with 2 active toddlers who need entertaining. 


However I have also found out that reflexology may be helpful with this particular side effect and the local Cancer support centre, The Olive Tree, offers reflexology to cancer patients. So now I have to find time to locate my Olive Tree information pack, find out when they offer relexology, call them, book it & crucially attend the session. But I will, I have already managed to book a Yoga session with them for next Friday & more importantly it allowed me to invest in a new yoga mat, because mine was looking a bit the worse for wear.


So what other side effects have their been?


Well the weirdest one is the sensitivity to cold. That kicks in as soon as I leave the hospital. When I am walking down the corridor some moisture on my lips makes them start to tingle. It gets worse. I can't go in the fridge, freezer, pick up cold clothes, use the wet wipes, take wet clothes out of the washing machine, touch the wet car etc etc etc. I thought that it wouldn't last too long, but I am only on cycle 2 of 8 and there is still a little bit of tingling going on every now and then. 


Then there are the 'conventional' side effects 


- Tiredness normally kicks in about 2-3 days after the treatment and is sheer exhaustion. I need to sit on the sofa and sleep, but 2 toddlers do make that difficult, but I can then go to bed and try and get a full nights sleep.
 - Nausea can be controlled by the multitude of pills I am given and by the 2nd weekend I am normally eating normally, although the quantities are smaller so I am loosing more weight. I know most women would be excited by the prospect of loosing weight, but I have never bothered about my weight. I think with my height I can kind of pull it off and if I am too slim I think I look ill rather than healthy.


There are other side effects too. I think my hair is starting to thin, because I am certainly fishing more out of the shower than I used too. This doesn't really bother me. 


I am also a lot more irritable than I used to be. I am not happy about this. I am snapping at the kids and don't want to do that. Its not their fault. I am hoping that the yoga and maybe a massage well help reduce my stress levels and henceforth reduce my irritability although I also think that a good nights sleep would probably have the same effect!!


I am sure I will have more to say on this subject as my treatment progresses and things get worse, but for now I am done!!

Ding, Ding, Ding, ROUND 2

Wow, if you have a problem complain.


Although today was chemo day it was so much nicer than last time.


It was a long day. Left the house just after 7am, train at 7.25, change at Gatwick, train to Guildford, walk to Bus Station, Bus to hospital (£1.60 what a RIp Off), get lost in hospital due to really erratic signposting.


Let the receptionist know I was here, then wait and wait and wait.


I was called in about 20 minutes late and then I let rip.


I told the consultant all about the fiasco I had suffered the previous time. He looked shocked, he said that he had never heard of this kind of failure in the system and then he arranged for me to talk to one of the chemo nurses to explain what had happened too.


After getting everything off my chest, he checked all my blood results and how I had coped with the previous treatment. He explained that the some of the side effects would be cumulative so they would get progressively worse. Yay what fun, I can hardly wait, and I can already notice it. As I sit here typing my fingers are all tingley and I feel quite nauseous although I can't take the next anti sickness until bed time. 


I then spoke to the chemo nurse and went through it all again. You know the fiasco so I don't need to go through it all again for you here. 


 By now it was 11.30 and I was supposed to go for treatment at 12noon, but I was starving & did not want go have hospital food. The chemo nurse had told me that the treatment would not be delivered until 1pm at the earliest so I had some leeway.


I went to try and find the restaurant. I had a quick look and could not see any card machines. So I checked. What a joke - The hospital restaurant only takes cash. What happens if you have been admitted to A&E and don't have any cash. I was shocked, how in the 21st century can a major hospital restaurant not take plastic.


Then I remembered. When I had come into the hospital earlier I had seen a Costa, surely they would take cards and have sandwiches. Thank You Costa Coffee. They took cards, but not loyalty cards. 


I had a sandwich and coffee and headed back up to the Chilworth Day Unit just after midday and didn't have to wait very long until I was called through and told to find a seat. The nurse came and explained that they would flush the line, change the dressing and then once the treatment was delivered it would take about 2.30 hours to go through and be flushed again. 


So I was hooked up, took out the paper and educated myself about current affairs, taxed my brain with the suduko & crosswords, plugged into my ipod I can honestly say that it wasn't too bad. The Zutons kept playing, although I was on shuffle and I was transported back to 2004 and Glastonbury in the New Bands Tent and the mud and I felt happy. 


About 2.30 Tony & the children arrived. I wasn't sure about this as they might not have been too confident. But I am so glad they came up. The smiles on fellow patients faces were incredible. To know that my children could do that was fab & I hope I cheered up some peoples otherwise rubbish days.


So now I am home and the eyes have stopped twitching, but the tingling is bad. Wearing Gloves however makes operating a mouse, iPod touch and wiping bottoms inconvenient so I have to grin & bear it.

Chemotherapy - a lesson in timings

So, we turned up a the hospital prepared for a wait this time. The appointment was at 2pm and we were seen fairly promptly.


It started with me being weighed and measured. I know a women shouldn't talk about her weight, but I have always been slightly overweight, although with my height I have never looked it. The last time I weighed myself was on the Wii Fit, so not neccessarily as accurate but I was between 95 and 100kg. Yesterday I weighed 85kg, coupled with my height I am now officially (according to the BMI charts) 'Healthy'


When we went in to see the oncologist he made some small talk about how I was feeling, how I was recovering and did I have any other health problems. At this point we did have too mention the low blood pressure and whether it was since the operation or not. Too be honest I don't really know. I went too the GP about it the Wednesday before all this started. It had been going on for about 6 weeks before that and coupled with the anaemia, who really knows what was going on!!!!


Then we talked some more about the tumour. The oncologist categorise them as 'A', 'B' or 'C'. 'A' tumours are very localised and don't benefit from Chemo, 'C' tumours have spread and definitely require further treatment & 'B' tumours, which is were I fall in, are difficult to treat. 


It depends on the features of the tumour. Because my tumour had spread through the bowel wall (T4) chemo would be recommended. Chemo however is not a wonder treatment. It is only going to give me a 5% EXTRA chance of not getting cancer again based on someone who had the same type of cancer and didn't have chemo.


So onto the chemo itself, which is not going to start for a while yet.


I am going to have a combination of an intravenous drug called Oaliplatin, which will be administered once every three weeks at St Lukes Cancer Centre in Guildford and a 14 day course of Capecitabine tablets with a one week 'rest period' before the whole thing starts again. I will have 8 courses of this which is going to take 6 months.


However before all this can start I am going to have 'ovarian preservation'


I know I am very lucky that I have 2 beautiful children and should not expect more. But what woman could say that she would not be devastated at the thought that she might not be able to have any more children & that the choice was taken away from her through no fault of her own. So, yes, I am doing everything I can to allow me the opportunity to have more children in the future. If you think that that makes me selfish, then that is your choice, but unless you have been in my situation you cannot make any judgements.


So thats it, 8 lots of a 3 week chemo cycle, which will last the best part of 6 months, will leave me feeling rubbish and wanting and needing support from everyone