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

The ultimate rollercoaster

No need to spend extortionate amounts of cash on days out to theme parks, no queuing, no bank loans needed for food. 

Does this sound like something for you?

If so you need CANCER in your life.

I can honestly say that this week I have gone from the biggest highs to one of the lowest points of my cancer journey.

We'll start with the highs. 

After a very lazy day on Monday with Hope and I just chilling and catching up on some sky plus, I accomplished a lot on Tuesday and Wednesday. This was not without its pitfalls. The trip to IKEA on Tuesday was more costly than I was anticipating, but toys need to be stored and I really want to create my rogues gallery of school photos. 

Wednesdays playroom decluttering and decorating was immensely rewarding, although there are still a couple of bits of the mural that need completing. Once it is done I will post a photo on here. 

Even Thursday and Friday left me with a sense that I had achieved something. Admittedly only rearranging a few bits and pieces in the kitchen and rediscovering my love of the bread maker. But these two accomplishments would not have been possible without the lovely people who organised and invited my children and me to Halloween activities meaning I didn't have to focus on ensuring the children were entertained. 

Today however has been a rock bottom moment.

I'm going to talk about it here, where everyone can read it and where people can share it, because I want thoughtless people to realise that cancer is an invisible disease and just because I may look normal on the outside I am anything but on the inside and your comments are really hurtful.

The morning started like most Saturdays as we made the shopping list before heading to Sainsbury's. For a change I had had a reasonable nights sleep (about 5 hours all in). My tummy was feeling a little tender and unsettled but hey what's new!

As we were going round Sainsbury's it became clear that the tummy tenderness was more than normal and with some urgency I needed to go. Luckily we were very near the toilets and as I pushed the trolley towards Tony and headed away I could feel things already starting to move. 

I very quickly walked through a checkout and headed towards the toilets overtaking two young people who were heading the same way. 

I made it to the cubicle sat down, and let go. I couldn't help it. It was noisy, it was unpleasant, I was doubled over in pain. 

Then I heard the door open to the toilets. The two young people I had passed earlier had come into the ladies. No problems normally. It's a toilet.

I am not going to repeat exactly what was said by these two girls, as the language was obscene. But it went along these lines.

'It f'ing stinks in here'
'Why can't people do that at home'

Then as I let rip again (I can't control it) 

'OMG, they are still in here, how f'ing disgusting'

Then the door went and I imagine they left.

Now, not only am I doubled over in pain and farting like a trooper I am also sobbing with embarrassment, because I genuinely have no control over this.

This is not the first time I have encountered issues in the toilets. I have had someone knock on a cubicle door and tell me to f'ing hurry up because people are waiting. That time when I went in there was no queue & as I left I apologised that my inoperable stomach cancer was inconveniencing her, but she might like to spare a thought for my 3 under 5's who have to live with a mummy going through this and the thought that one day my consultant might tell me there is nothing else he can do. 

So, why am I telling you this. I am embarrassed about this. I am mortified that I almost soiled myself in Sainsbury's due to my condition.

Because the next time someone is taking a long time in the toilet, or there is a queue or an unpleasant smell bare in mind that the bowel and stomach illnesses are invisible.  The size 10 (mostly) well dressed mum dealing with 2 exuberant children and an adorable 6.5month old is also battling stomach cramps that leave her unable to stand up straight, have her wincing in pain when she carries her baby and has a stomach that churns so much it feels like a washing machine spin cycle.

Maybe I should use the disabled toilets, I certainly am considering it, but would I then face the backlash of not 'being disabled'.

Cancer insomnia kicks in and pain prevents sleep

So, 2 days after diagnosis, cancer insomnia sets in. Actually that's a lie really it's not so much cancer related insomnia as pain prevents sleep.

And the beauty of this blog and my iPad is that I can blog when I feel like it and be honest.

Remember that, everything you read on here is the raw truth, there is no sugar coating, I tell it like it is. 

At the moment it's a roller coaster. 

On Wednesday , on my way back from toddlers with Hope, on my way to pick up Imogen I got a phone call. I was driving I ignored it. When I checked my voicemail it was St Luke's calling to ask me to arrange treatment. I thought I would have a week or so to get used to the idea that I was going to go through chemo hell again.

Nope, when in called them back it turns out they had had a cancellation and could I start next week.

Now starting chemo is not quite as easy as rocking up at the hospital and getting some drugs. 

My treatment actually started yesterday with my lovely blood transfusion. I needed to increase my blood count so I can actually tolerate the chemo. So I spent yesterday on the 6 th floor of Crawley hospital in a lovely private room, chilling with Hope and watching the planes take off at Gatwick.

This weekend the focus will be on reducing breastfeeding and getting Hope to take most of her feeds from bottles. I am hoping to do one last feed on Thursday morning, which will break my heart, but I know it is for the best.

On Monday I have to go to St Luke's to e nurse led clinic where they give you all the information that you need about your particular chemotherapy regime and what the side effects may be. This is the chance to ask any questions and I have a lot this time. The basic Macmillan info I have been given about my new regime looks intense and there are some inconsistencies with what I have read and what I have been told so I need to iron these out.

 I get Tuesday off, although Hotpoint are coming to fix my dishwasher which appeared on watchdog a couple of weeks as one that might potentially catch fire!!

On Wednesday it it back to Guildford, this time without Hope to get my PICC line fitted. You know, that annoying line that goes into my arm, under my skin and means no more baths, swimming or generally getting my arm wet for a long a time. Although I have decided that this time I am going to invest in something called a limbo Cover so I don't have to keep wrapping my arm up in cling film for a shower.

 Then Thursday, Tony, Hope and I will be starting my new chemo adventure, although I won't be able to feed Hope while I am having chemo I need my family with me for my first cycle. 

I am putting my body through all this again to kill these tumours so I can watch my children grow up and become parents. Watching my mum playing with the children today has scared me.

Because of the nature of these new tumours I am facing the very real (at 2.30am) possibility that I might not get to see my children get married or have children. I may never be a grandparent. I am trying to stay so strong for them, but this thought keeps creeping into my head and lodging there.

I know I can beat this, I have done it once, what I don't know is if I have the strength to beat it over and over again. If it comes back how many times can I keep fighting. 

If anyone knows, answers on a comment please. No postcards, the stamps are too expensive!!

Moving forwards

Earlier this week following my disappointing colonoscopy, I managed to get one of those rare things, A same day GP appointment. I don't quite know how I managed it? I wasn't on the phone constantly pressing redial at 8am when the lines opened, instead I called about 9.10, when we got back from dropping Isaac at school and was able to get an appointment for later that morning.

Please don't hate me.

Why did I feel the need to go back to the GP? Well, I weighed myself again & was shocked to say the least, ready for it??

58.4kg, that's under 9.5stone, that definitely makes me underweight. It means I've lost about a stone in the last 6 weeks. This shouldn't have happened, I've been eating better - jacket potatoes, salad, soup, chilli, tuna and lots of fruit - plums, apples, pears, melon, grapes, bananas.

When I walked into the GP's room he took one look at me and made me stand on the scales. Finally someone agreed with me.

'There is definitely a problem he said.

We talked some more about my bowel issues, the clear colonoscopy, the referral for an endoscopy.

He agrees with me that my body is not processing something. He kept mentioning malabsorption issues. I bought up the coeliac connection and he has agreed to test for it, alongside a plethora of other blood tests and stool samples.

So, my endoscopy letter came today, it's on Friday. Not sure whether to go for the local anaesthetic or the sedation again? I am inclined to go for sedation given the discomfort I experienced when having an NG tube inserted almost 2 years ago. 

Blood tests are also on Friday, it does take a couple of weeks for results, but hopefully we are moving towards some answers.

24 months is really quite a long time

They say a lot can happen in a week (or a week is a long time in politics).

I am definitely not a politician and a week to me is far too long, mostly because of bickering children and the weather being far too hot for all of us. 

But I want to look even further back than a week, to Thursday, July 21st 2011. This was a date that will forever be etched in my memory as the date that I found out I had cancer. 

But, if you remember even then it wasn't definitely cancer. It was just a stage 4 tumor. The cancerous nature of it was not known. 

I have been reminiscing a lot over the last couple of weeks about this and how I feel now. I have to be honest since having Hope (14 weeks old and looking lovely) a lot of fears have resurfaced. 

Prior to my cancer diagnosis and since having Imogen I knew something was not right with my body and kept going backwards and forwards to the GP trying to get them to agree that it was more than just 'ovulation pains' or 'IBS'.

Since Hope was born, these fears have resurfaced. My body appears to have regressed to a post surgery state again. I veer from having very uncomfortable blocked bowels to liquid ones in the space of 36 hours. I am loosing lots of weight and am feeling tired, dizzy and rundown. 

My GP's are great at reassuring me and running goodness knows how many tests to try and put my mind at ease and constantly reminding me that I am breastfeeding a very hungry 14 week old as well as running myself raged looking after a 5 year old and a 3 year old. 

However the heat, coupled with the never ending back pain means that I am not looking after me properly. Some evenings I don't eat as I can't face any food. Other times I will eat three decent sized portions of food before midday .

At the moment I am feeling fairly confident that the cancer has not returned, but I cannot shake the fear that it will return and I won't know about it. It has snuck up on me once before, what is to stop it doing it again. 

Sometimes I look at the three beautiful children I have been so privileged to have and wonder whether it was fair to have a third knowing that she might carry my faulty gene and have the inherited risk of bowel cancer? I do have these fears for Isaac and Imogen, but I had them before I knew of my cancer. Was I selfish to have a third child knowing that I might pass on that gene?

Only time will tell, but if my children read this I am sorry if you have inherited the gene's that make you predestined for bowel cancer. I am sorry that I have exposed you to this nasty, evil disease. But I love you and you have made my world complete (sounds really cheesy).

So, 2 years on, I continue to live in fear, but also surrounded by the most wonderful things in the world

Isaac, Imogen and Hope and my fantastic husband

Amazing

Lets take a second to think about all that I have put my body through in the last 18 months.

Before I even knew I had cancer there was the 'anaemia' & 'low blood pressure'
Then there was the Cancer, and not just cancer, lets not forget I had a stage 4 tumour. The only saving grace was that it hadn't spread and was confined to my bowel. 
There was surgery involving an anaesthetist unable to find a vein to inject the anaesthetic and having a central line put in while concious (something I never want to go through again).
Then there was the chemo - only 4 rounds of oxaliplatin as my body just couldn't take it and 8 lots of capcecitabine. It all took its toll.

And now the most amazing thing has happened. I thought that this would never happen again.

I'm currently 15 weeks pregnant with my third child. Against all odds I have managed to not only beat bowel cancer, suffer chemo and all the side effects but about 4 months after getting the all clear my body felt sufficiently healthy & strong to go about the incredibleness that is creating another life. 

So to quote an incredibly annoying cbeebies programme which made me incredibly cross when I was going through hell last year

Brilliant Bodies

Cancer, one year on

Ok, so not strictly one year on as I didn't get the final diagnosis til 3rd August.
But never the less this last week has been really hard for me. I have been coming to terms with the fact that this time last year we knew there was something wrong but not what. In the last year I have undergone 8 hellish cycles of chemotherapy, been told that potentially I might not be able to have any more children and have lived with the very, very real fear that this might come back. 


It is certainly easy to say think positive but I defy even the most positive of people to not have their down days. This week has been a down week. 


There have been some lovely memories made this week. The olympic torch arrived in Crawley and we headed down to see that. A friend actually got to carry the torch in East Grinstead and Tony managed to get his hands on it too. It has also been Isaac's last week at pre school. 


Now that is quite significant for me. In my downest moments last summer I occasionally thought that I wouldn't get to see him start pre school, let alone graduate. But I did, I fought the cancer and saw my brave little boy graduate from pre school, and now we have the next big adventure, Infant School. He is so excited about the new challenges and adventures ahead and so am I. I am entering the world of lost jumpers, reading books, homework and lunch boxes. On top of all of that I am so proud of the way that he has coped over the last year. I don't know if the children understood how significantly ill mummy was, but I do know that last summer was probably a bit of a let down for them.


So this year we are going to have the summer of our lives. 


Tomorrow we are off to Scout Camp for a week, then there will be at least one trip on the Bluebell Railway, the Tulleys Farm Maize Maze, hopefully some picnics with some very good friends who have supported me massively over the last year. Then there are 2 massively significant events. 


Beautiful days Number 10. Last year it was all I kept asking my surgeon 'Can I go, Can I go?' So we went, it was hard work but I felt normal. This year will be awesome. I am planning heart bunting, heart t shirts and a fab menu.


Then there is Jo's Jump for Beating Bowel Cancer. If you haven't sponsored her yet, I urge you too. I will be there, albeit on the ground cheering, taking photos and generally being there for her as she has been there for me over the last year.


Beating Bowel Cancer have been a huge support to me and continue to support me even now and every penny raised goes towards raising awareness of this disease.

If you've got a moment

This is my incredible sister, Jo. 


You may notice a couple of additions too my blog layout today. It's because of Jo that they are there. 


On the 27th August 2012, she is going to do a skydive to raise money for Beating Bowel Cancer.


Please take a moment to click on the link and sponsor her. She has been an incredible support over the last year. From driving across the country to pick me up from the hospital and help me look after the children for 1 night. To sending me little packages through the post with things I might like or need in. I could not ask for a better sister. 


And now she is going to jump out of a plane to raise money for the charity that has provided me with the most support over the last year and ongoing support even now.


Beating Bowel Cancer is a charity which provides support to bowel cancer patients and their families. I have used their patient information leaflets, their forums and have found them so supportive and informative throughout the horrible year I have had. 


Please support my sister in her incredible challenge

Take that Bowel Cancer

So its true, I am in remission. The CT scan showed nothing there, the blood I had taken before the last lot of chemotherapy showed normal tumour markers and everything can gradually return to normal. 


Except things are not normal. As I mentioned before there is the paranoia that I am carrying the faultyy gene and so could be rediagnosed at any time. 


Then there is the bowel stuff. I have not known anything like it - I can veer from blocked to loose in the course of a day.


I addressed this with the consultant yesterday. Although I have asked my surgeon & my oncologist several times if there is anything I should be avoiding or including in my diet the answers have always been there is nothing you should cut out.


Speaking to the consultant yesterday and discussing (like an adult without being embarassed or sniggering) she suggested that it might be worth cutting out 'healthy food'. So things that you eat because they are good for you like muesli, wholemeal bread & pasta, and seeds and pulses should be cut out to see if it has an impact on your regularity. 


Now I have already reduced my caffeine intake. Every 3 to 4 weeks I think 'oh I really want a coffee, it can't be that bad' and then my stomach & intestines remind me why I am cutting it out (Decaff has the same effect). Funny enough I can drink tea though. 


So once the current muesli packet is finished I shall be looking for a new breakfast cereal. 

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'

Paranoid Android

Wow, this weeks feels like it has been so busy.


Monday I had a follow up with my consultant at East Surrey. I know the NHS is free, but I waited almost 75 minutes after my appointment time to go in. Luckily I didn't have the children with me, otherwise I think we would have gone stir crazy. 
I have to admit something now. Since November when I went back into hospital with the adhesion/blockage, I have been paranoid about what is going on inside me. And not just me, with the children as well. Someone on a well known parenting forum linked to this and I have been over analysing everything since. Particularly with them, I am so worried about them and especially the likelihood of them getting cancer in the future and it all being down to me and my crappy, faulty genes. It was good to see my surgeon and hear yet again how well I was looking and talk to him about the over analysis I am doing and the paranoia I feel about everytime something is a little different I worry about having to come back into hospital again. I never used to worry about going into hospital but having been in so often and having to go for chemotherapy has really made me, not scared about being readmitted, but annoyed more than anything that this cancer has taken over once again and I am not in control. 
He was very reassuring, and helped me realise that things are probably not going to be normal for a while and it is usual to be overanxious, especially given the fact that I had been readmitted. 
It has also forced me to reassess some of the things I do and more specifically my sedentary lifestyle. 
This Blog is written by a friend of mine, who I really admire for putting this on the internet and chronicling everything. It has inspired me to unearth the Wii Fit board and associated game and also start back with my yoga practice. Its also made me look at my diet and I realise that I need to set a better example to the children. After all how can I expect them to eat things that I don't. So I have started feeding them, and hence me, more fruit and veg. 
I have realised that I do actually enjoy the taste of fresh, seasonal produce and can make a real difference to my health if I continue with this. 
In other news, I am due to have chemotherapy number 7 on Wednesday, which means that after the obligatory 2 weeks of tablets I will have one left. That last one falls 2 days after Imogens 2nd Birthday. 


I can't quite believe how far I have come. When I think back to October and having my birthday, PICC line inserted and first chemotherapy session all in one week, I look at where I am now and know that this blasted disease has made me a stronger, determiend person who is assessing what they want from the next few years of their life. 


Watch this space!!!!

Be loud, be clear

This week is all about raising awareness about bowel cancer. Reading other peoples blog posts on this made me wonder how long I have been living with this without knowing. This post is going to look back over the last few years and point out some of what I believe were indicators which I ignored, or put down to other things. Let's go back almost 2 years to when I gave birth to Imogen. Something wasn't right in my nether regions. I can vividly remember going to my 6 week postnatal check and telling the doctor I felt that everytme I opened my bowels it felt like I was passing a hedgehog. That is the best way to describe some of the pain I was in. Sometimes it would take a long time to come and the pain would be quite long lasting. One time on the way to Somerset to visit my family I went to the toilet at Fleet and was still in pain when we left the A303 and joined the A358. For those of you whose geography is not to good, that's about 2 hours of pain. Not excruciating, unbearable pain, but the kind of niggling pain that you are aware of. Going back to the 6 week postnatal check, the GP had a look (not something I enjoy,but something I have experienced a lot over the last 2 years) and diagnosed simple piles. The solution - lactulose. This is supposed to work by softening your stools making them easier to pass. It did, but there was still pain. So I went back to the GP. Saw a different GP this time. I remember him being impressed with Imogen's sucking blister as she was about 10-12 weeks old. He was also impressed I was still breast feeding. But that is a whole other story. He had a look (see not even 6 months in and 2 people have had a look!!). He diagnosed a rectal tear and pescribed a rectal ointment which gave me incredible headaches about 25 minutes after applying, not good when you have a not yet 2 year old and maybe 3 month old baby. The rectal appointment worked, but I had to use it for about 6 weeks so kept on going back for repeat prescriptions. Now I am wondering whether the intermittant bleeding might have been an early warning sign. To be frank here this probe has been around for the last two years and in the end I tarted to just accept that I would get a bit constipated, pass some very painful stools and then things would clear up. Over the remainder of 2010 things settled then flared up and the settled down again. Towards the end of 2010 or the start of 2011 I spoke to my little sister, who was training to be a nurse about that fact that sometimes I would be constipated in the morning, but have unbelievably loose bowels in the evening. At the time she saidnothing. Since then she has said that it did raise some red flags for her, but she was dealing with her own issues at the time. Following our car crash in February, I started too notice a few other health problems. 1. I was loosing weight. Not massive weight dropping off me but enough that some of my clothes were starting to get lose. Several people commented on it. I assumed it was down to the fact that I was walking a lot and eating healthily with 2 toddlers to encourage to eat. 2. I was getting dizy spells. Sometimes when I stood up too quickly which is common if your blood pssure is low. However these were not exclusive events. Sometimes I would almost black out when hanging the washing out, or standingat the hob. Another thing that was not ideal with 2 young children. 3. Stomach and bowel problem were getting worse. Not only was I having constipation and loose stools in the same day at least one every couple of weeks, but the stomach pains that went with them were immense. I would be doubled over Iain. A couple of people have asked how I knew they weren't period pains.lets leave it with as a woman you know. 4. Finally the breathlessness. Pushing a pushchair with two toddlers is hard enough work, but I remember taking the children to Wakehurst and being absolutely exhausted so much so that they fell asleep in the car and whe we got home I fell asleep in the car too. Towards the end of May things came to a head on camp with Anthony's scout troop. I was camping with two toddlers at the tool of a massive hill and had horrendous diarrhoea and vommitting. But still I put off going to the GP. Eventually after another 6 weeks I finally managed to get a child free day and a doctors appointment on the same day. The outstanding diagnosis - low blood pressure and come back for blood tests next week. I never made it to those blood tests, by then I had been admitted to hospital and was causing a lot of medical professionals a headache. So, in hindsight, what would I have done? It seems such a easy thing to say but I would have badgered my GP. I would have gone every month and made a fuss about the pain I was in, the discomfort I was experiencing and I would not have taken no for an answer. If I knew the what I know now about bowel cancer and complications I would have lived at my GP surgery until I got investigations and knew why things were so bad. What do I want you to do? If there is anything worrying you about your bowel habits please go to the GP. Yes it might be cancer, but it moght not and if it is you want it caught it early so you don't go through the uncertainty that it have over the last 6 months.

Another eventful weekend

Things are never quiet in my life. Just once I'd llke a nice restful weekend, where I can look after my kids and not rely on others. Ut not this one it would seem. Two points here.... 1. This post will be graphic, squeamish people may not want to read it 2. It is written from my hospital bed using my fancy new iPad! Things kicked off on Friday with more stomach cramps. These were different to the summers cramps and were more all over. Oh great I though, nice after weeks of loose motions courtesy of chemo now comes the blockages!! Phone call to the gp, emergency appointment and a prescription for suppositories and movicol followed with instructions that things should be moving over the weekend. So we went home and started operation 'get Ruth's bowels moving'. Suppositories went in & then came straight back out again, almost like there was some sort of force field preventing them working. I took the movicol, and although it tasted unpleasant it had no noticeable effect. That evening things went from bad to worse. Ate about three mouthfuls of tea before I bought it back up. That started to worry me. The gp had asked if I had been vommiting, and I started to wonder whether this was more than just a bit of constipation. I took another dose of movicol and thought that would be that. How wrong I was. Almost immediately it came back up. This pattern continued all night, I must have vomited about 6 or 8 times & I still hadn't been to the toilet, despite sitting on it for what felt like hours. I resolved over night to go to a&e in the morning because I knew this wasn't right. So he next morning we drove up to Redhill and found out what a magic word chemo is. No waiting around for me, straight to assessment. I explained about the vomitting and feeling blocked up, so they sent me for some X-rays to have a look at want was going on. This doctor didn't seem to concerned about the vommiting, which worried me as I was mow concerned about this. He decided to give me and enema and wait and see if it worked. They also gave me an IV drip and some senna, then sent me home with more senna, movicol and some painkillers and instructions to come back if things hadn't moved by Monday. Thanks at this point go to the lovely Sophie, who came all the way to East Surrey to collect me and took me home. I tried to have some tea, then sent Tony out to get the prescription. After a Strictly Come Dancing fix and a Merlin perv I bit the bullet and took some more movicol & the senna and vomited he movicol straight back up, and then spent the night vomitting what looked and smelt like senna tablets. Sunday was a repeat of Saturday, back to Redhill, back to assessment, back on fluids, back to x ray. They seemed to take the vomiting a lot more seriously and I got moved into surgical assessment unit. The consultant I saw said that they were concerned about a blockage caused by my summer adventures & scar tissue, so by were arranging a ct scan and I would need to have an NG tube and a catheter to monitor my outputs. Having an NG tube is a very unpleasant experience. There was a lot of vomitting and choking having a tube inserted through your nose and down the back of your throat. Watching what comes out is an interesting experience! There followed another ct scan, with a difference this time, the contrast leaked into my vein and so there was some pain and swelling in the back of my hand. The ct scan showed an obstruction in my small bowel linked to my scar tissue which needs clearing. So it looked like I was in for the long haul again. Finally at midnight I got moved onto the ward and things became explosive and remained explosive all night! So now I am sitting here in my hospital bed, with the NG tube disconnected, and am on free fluids, which I think means jelly, jelly, jelly!!

And so it goes on

We are now nearly a week into round three and I can definitely say that it doesn't get any easier. The worst thing is the sensitivity to cold. Just when you think you are getting used to it, you pick something up or go to hold a child's hand and it is too cold and the tingling is back. But we are keeping things normal too. Hard to believe, but Isaac will be starting school in September so we have been visiting. Tony and I are terrible for only looking at one option!! When we bought our first house we bought the first one we saw, when we were looking for a childminder we saw one (I emailed a few, but we saw Fran and loved her from the off!!) So far we have only been to our 'catchment' school but we both loved it and Isaac and Imogen both enjoyed having a look around and hearing about the different ways that they teach the children and the opportunities they will have. We do have two more that we need to visit but 'he'is in charge of arranging that. I am just shocked that there are not formal open days which the schools promote on their websites, and that there is not more support for parents. All we got was a letter telling us which our 'catchement' school is and to log onto the web site. The was nothing about how to contact the schools or even dates of open days to help you out. But with all the government cuts maybe they are making us work for it. There has been another development this week. On Wednesday I was given an injection to stop me ovulating and hopefully increase my chances of conceiving in the future. This is still a new treatment and there is no telling whether it will work or not, but in for a penny, in for a pound!! This injection has to be given every 4 weeks, the nurses have shown me how to do it myself, but the needle is quite large and it does scare me slightly. I am wondering whether the if nurse will be able to do it for me ;(

Keepin' it.....

People that know me, either 'in real life' or 'virtually' will know that I am not the type of person to sit back and let things pass me by!!


With this in mind I have had a week of 'keepin' it real!!'


Things started well, this appeared in the local paper on Wednesday. It took a while to come to fruition, but was worth it due to all the positive comments I have received and all the new people who have come to read this little old blog.


On Friday I bit the bullet and went along to my first yoga class in a long time at The Olive Tree Cancer Support Centre, which was so relaxing. I really started to feel normal and have even booked to go back next week despite it being 2 days after the start of round 3.


But the real highlight of the week was Saturday. 


You should by now have realised that I am a bit of a music junkie. 4 weeks after surgery I went to Beautiful Days. So, on my rest week off we went to Tunbridge Wells Forum, for an evening of organised choas courtesy of 3 Daft Monkeys, who released their single yesterday. Check it out on you tube.


It was a great evening. The Forum used to be a public toilet, but is a fantastic venue. Small, Intimate, but with plenty of space for dancing!! It was also great to finally meet some twitter friends, Jeff & Lukas. It was also great to see Rich back with 3 Daft Monkeys. 

Rich, Lukas, Athene & Tim - AKA 3 Daft Monkeys

If you haven't heard of them, check them out. Fantastic Fun and lots and lots of dancing!!!


We are off to Guildford this week for round 3, so I can see lots more cold sensitivity, sore hands and feet, sickness & loss of appetite in my future :(

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!!