About this Blog

This blog started as an online diary and place for me to rant about annoyances in my family.

However since July it has become a place for me to catalogue and express my views and opinions on the treatment I have recieved following the diagnosis of a potentially cancerous tumor in my bowel.

On 3rd August 2011 I was told that it was cancerous. In April 2012 I was given the all clear.

October 15th 2013 I was diagnosed with peritoneal disease and liver metastases. The cancer was back and this time it is inoperable.

It is a little bit out of date as the NHS doesn't tend to have a WiFi connection in hospital and I can only post when I get home and posts take a while to write.

It is NOT about individuals or the nursing profession. It is about some of the inadequacies in the system and the way the NHS is failing some people.

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Thursday, 31 October 2013

What do you get if you cross a Skeleton, A Cat & A Pumpkin?

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Wednesday, 30 October 2013

A 6 month old newborn baby

2 weeks ago, an angel arrived in Crawley and proceeded do something no mother, grandmother, parent or carer should have to do. Force a 6 month old baby to do something which goes against all their natural instincts and is completely alien to everything they have known so far.

This is not a bottle bashing, breastfeeding praising post. This is about the pain and struggles that my family, including my mum have been through in the last 2 weeks due to the reappearance of my cancer.

We had bought the formula a few days earlier and tried half heartedly to get Hope to take a little bit from a bottle. Tony had tried using the avent bottles that I had from when I went back to work after having Isaac. She took 3 oz at one point, but that was it. We would offer her the bottle at bed/bath time but if she didn't take it, no biggie, I still had my boobs and she was still more than happy to latch on and feed as normal.

All this changed on Tuesday morning. As soon as cancer, then chemo, then the aggressiveness of the tumours were mentioned I knew that this was it. My fabulous breastfeeding journey was coming to an end. 

When I say fabulous, I mean it. I never intended to be an extended breast feeder. I just wanted to do what came naturally. For Isaac that meant he fed until I was 5 months pregnant with Imogen and he was 16 months old. For Imogen that meant feeding her until I was admitted to hospital in 2011, she was 17 months old. I fully intended doing the same with Hope. 

I love breastfeeding, I love it's intimacy, accessibility, and the ability to be able to offer comfort to my baby. It is no faff, no fuss and quick, convenient and easy. 

I have never judged people that chose to feed their baby infant formula. I recognise that every one has a choice and what works for me, might not to for you. 

When I knew I had to stop, I knew I needed 2 things. My mum and some Tommee tippee bottles from my sister in law. Mum arrived on Wednesday and we sat down a worked out a plan.

The plan had 2 goals, by the following Thursday Hope had to be comfortable and able to take formula from a bottle. Also I had to drop feeds gradually enough to prevent myself getting mastitis or engorged and suffering from any of the painful side effects of stopping breastfeeding as I found out the drugs you can take to stop milk production are incompatible with chemo!!

I won't lie, I spent a lot of time hiding upstairs while Hope screamed at my mum. I sobbed my heart out, repeatedly, I felt guilt, I felt regret, I felt suicidal at one point. But after a little bit of trial and error Mum found that Hope liked a size 2 teat and very warm milk. 

The next step was Hope taking a bottle from me. We accomplished that over the weekend. Then on Monday, when I had my nurse led clinic appointment I took bottles and managd to feed her in the waiting area at the hospital. 

My final step was leaving Hope. I did this on Wednesday when I had my PICC line put in. 

I was heartbroken, I was not Hope's sole carer anymore. Now anyone could look after her. Some people are more willing to give her bottles than others. 

So on Thursday morning, I gave Hope her last ever breastfeeding. I sobbed, I couldn't stop apologising to her for not giving her the same opportunity that Isaac and Imogen had had. 

Now I am in a whole new world. It is like having a 6 month old newborn. I am having to learn a whole new set of feeding cues and associations. I need to plan, I can't just leave the house. I need bottles, formula powder, boiling water. Hope spends a lot more time screaming now because I cannot anticipate when I might need to feed her. Her sleeping is all over the place and I don't know how much she needs. 

Over the weekend she was having 4 7oz bottles a day. Today she has had 3 4oz bottles, 2 6oz bottles and a 2oz bottle. I don't know how many times she will wake up tonight. 

Then there are the nappies, ok so we are weaning as well, but no more lovely smelling breastfed baby poo. Formula nappies are unpleasant and far more frequent than her one every 2/3 days. 

Finally the cost. This is really annoying me. I don't want to feed my baby formula, but added to all the associated increasd costs with cancer I now have to add an extra £10 a week to my food shop, because of cancer.

So cancer, screw you, I will beat you again because of what you have robbed me off.

Monday, 28 October 2013

Chemo round one

I realise that this is a few days late and I actually had chemo last Thursday. 

But we will go back one more day to Wednesday when I left mum with all three children and headed to Guildford to have my PICC line put back in. While having the line in I was chatting with the nurse about how demoralising I had found chemotherapy before and I was worried this time because I would be bringing Hope and found it really uncomfortable to sit on the ward with the more mature people who were giving you their life stories, which I don't care about. I have enough going on in my life without hearing about how you have had chemotherapy for 3 or 4 different types of cancer, or about how your cancer keeps coming back quicker and quicker. I don't want to face up to the fact that in 30 years time I might still be going back and forward to St Luke's to have yet another round of chemo. I need to keep the faith that this will be the last time I have chemo.

Judith the PICC nurse, listened and when I came back from having the X-ray to check the line was in the right place she introduced me to Claire, who is a Macmillan liaison nurse who listened and completely understood where I was coming from and came up with loads of solutions. These solutions made Thursday ( and going forward Wednesdays) much more approachable and hopefully bearable.

The unit where I have chemo has a 'treatment' room which has a bed and private bathroom ( essential for someone with my unpredictable bowel habits). Last Thursday we arrived at the unit and were able to use this room for my treatment. 

This made things a lot easier and less stressful. Hope did not want to settle for a sleep and if I had been in the main room this would have ramped up my stress levels massively while she whinged and screamed at me. Instead I snuggled her into bed with me and rocked and cuddled her until she fell asleep.I can't offer her the ultimate comfort anymore as I am not breastfeeding (& that is a whole other post coming up soon). But I can provide a safe and secure environment where her needs are met to the best of my ability.

Back to the actual treatment. We started with a saline IV, then the irinotecan which took a couple of hours to infuse. Another lot of saline, then the folinic acid, and finally the pump of 5FU was connected.

If I hadn't had the pump, I wouldn't have known I had had chemo. I remember leaving the unit after my first dose of oxaliplatin and my face hurt, it hurt to breathe I would not have been able to drive. This time there was nothing.

Ok, not nothing, there was a little bit of nausea, but I know that the myriad of drugs can control that. 

So we went home and hatched our weekend plans. I would not have got through the last couple of weeks without my mum being able to stop everything to come and get Hope to take a bottle and drop children at school, pre school and just provide general support. But  our house is not big enough for her to live with us so we had to take her home. 

Friday after school we loaded the car and headed home to the West Country. I had a nap in the back of the car and was very grateful to the spaciousness of the car for this pleasure. 

We eventually arrived back in Somerset by 9.30 and it was a relief to everyone, we got the big 2 into bed and hoped Hope would settle down and go to sleep which she was not really happy with, so she had a little play with Grandpa. 

Bright and early Saturday morning the children were up, despite a late night so we headed to Cardiff for the real reason for our visit. Tony had 2 tickets for the Rugby league World Cup opening ceremony and first two matches. 

While Isaac and Tony went to the match,  Imogen, Hope and I took advantage of Cardiff's shopping and came back to meet them significantly poorer!!

Tony and Isaac were supposed to watch both matches, but the late nights had caught up with them and we headed back to our hotel for some much needed r&r. Not much chance of that with a 3 year old, 5 year old and 6 month old. But eventually everyone fell asleep and I spent most of the night battling, I think, an irinotecan side effect in the form of bowel issues. 

5.38am - the clocks had gone back. But the children did not agree and so they were up and we were counting down til 8am and we could go for breakfast and then head back to Somerset. 

The reason I have told you all this is to illustrate the massive differences between all the chemotherapy regimes. After oxaliplatin I would not and could not have contemplated this. It didn't end there. 

Back to Somerset to leave Isaac and Imogen with grandma and grandpa for a few days. 

And finally back to Crawley at 11pm on Sunday night.

There are other bits, but I'll surprise you with those later!!

Monday, 21 October 2013

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.

Friday, 18 October 2013

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!!

Wednesday, 16 October 2013

Treating myself

When I was in Sainsbury's a couple of weeks ago I got one of those temptation vouchers. You know the ones..spend £20 on TU clothing and get 8p of a litre of fuel. 

Well I needed fuel, and thought that I needed a new pair of boots. Instead I am cuddled up in bed in some georgeous new fluffy PJ's which are slightly to short, and some fleecy slipper boots which I think I am going to need as this cancer must be serious.

I've just had to rearrange my whole week next week as I am going to be commuting to Guildford on Monday and Wednesday and then chemo starts next Thursday. 

This chemo is going to be different to before, and I promise to keep you updated every step of the way.

Tuesday, 15 October 2013

Guess who's back, back again

I can't help but have the lyrics to Eminems 2002 hit going round and round my head at the moment.

I have had a feeling since Friday, let me explain why.

I saw my GP for the results of my blood test. My HB (blood count) was down to between 7 & 8. It should be 12. Deja vu there, this happened in 2011 and I needed two blood transfusions to get it back up.

He then expressed his surprise that I hadn't heard from the MDT team yet. That's the colorectal nurses, surgeons, oncologists etc who review everyone's files and decide on their treatment paths.

Finally, he is the GP who does the baby clinic, asked whether I had managed to introduce a bottle to Hope and he strongly recommended that we do it ASAP. I thought that this was because he wanted to be able to prescribe me stronger painkillers. I now know differently.

When I got home I phoned the upper GI nurses who I had spoken to before and left them a message asking why I still hadn't heard anything. 

Later on I got a call from Jackie, which was lovely, but she's a colorectal nurse and she talked about arranging me an appointment with Dr Cummings, who is my oncologist. It's OK she said he knows your history, he'll be able to help.

Alarm bells start going off gently. These start blaring on Saturday when a letter arrives dated 10th October telling me of my appointment with Dr Cummings and having the 'bring a friend or relative line'

So fast forward through the weekend, cancer rolling around my head, staying away from Google, but hoping it could be nice and straightforward like last time. Operation, tumour out, chemo to kill the rest, boom cancer free. 

Nope, nothing so simple this time.

I have peritoneal disease and liver metastases, these are inoperable. So the only solution is chemo. But before I can have chemo I need to stop breastfeeding. 

So, we are persevering with the bottle as Hope screams at Tony while he tries to feed her and I hide upstairs. 

I am coming to terms with the fact that I have inoperable, Incurable cancer. The chemotherapy can shrink and manage the tumours but my understanding is that they won't go and they could spread.

I always knew that cancer could come back. I never thought that it would be so soon. 

On Thursday I need to go and have a blood transfusion, and sometime in the next couple of weeks I'll be getting another PICC line and starting a new killer regime of drugs to beat and reduce these tumours again.

Tuesday, 8 October 2013

2013 or 1913???

I am sitting here listening to my children happily playing with their train set. 

Actually, I am listening to Isaac and Imogen playing with their train set.

It reminds me of an advert I saw recently on the TV for these.

On seeing the advert I was disgusted. Why in 2013 are we still perpetuating the myth that girls need pink and boys need blue? 

Can girls not play with cars, or trains? Are boys not allowed to play families and use dolls houses & tea sets?

Mumsnet have been campaigning against this here, and yet major, international companies are still perpetuating the myth that blue is for boys and pink is for girls. 

So, people of the internet, I urge you not to be sucked in and buy a blue egg for your boy, or a princess yoghurt for your daughter, ignore the gender stereotyping and allow your child to choose.

Wednesday, 2 October 2013

The aging process

Tomorrow will be the 34th anniversary of my birth. Yep, with crappy timing my birthday has rolled around again.

Last years day was pretty awesome. We took the children and 10 week old bump to Disneyland Paris to meet Mickey Mouse and generally have fun and experience something new. This included quite a lot of train spotting, luckily our accommodation was close to a railway line and learning lots of new words especially Pomme for Apple.

The year before, 2011, I'd been diagnosed with the cancer and had my date for chemo starting which was 2 days after my birthday. So my actual birthday was spent with some friends enjoying the last of the sunshine before 2 days of PICC lines and oxaliplatin infusions. 

This year I fear will be another wash out. 

I had my endoscopy on Friday 27th, actually I kind of had 2. I opted initially to not be sedated and have the local anaesthetic. I thought I coped remarkably well with the tube being put in and did not have to much gagging or choking. However when it came to it I just could not tolerate it for too long, so the tube had to be withdrawn and I had to be cannulated and sedated. 

It turns out that there was still a lot of fluid in my stomach despite not eating or drinking anything for more than the prescribed time. 

I have to say the local anaesthetic is nasty, it is supposed to taste like banana. If that was my first taste of banana, I'd never have it again. It burns and tastes most unpleasant, but it does numb your throat and makes you dribble everywhere!

After a short time in recovery we saw the consultant. Finally I was going to get some answers.  Or not. 

There is an area of inflammation in my stomach, which he has sampled and sent off for histology. In order to investigate further I will need yet another CT scan. 

Since the endoscopy I have been in almost constant abdominal and back pain. Now I know that there is inflammation in my stomach I can't take anymore NSAIDS, so ibuprofen is out for pain relief and I am relying on trusty paracetamol and constipating cocodamol.

The last few nights have been so bad I have managed about 3 hours sleep a night. 

So, with all this behind and in front of me, I am not looking forward to tomorrow as a special day, but as one more day towards answers.