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It is a little bit out of date as the NHS doesn't tend to have a WiFi connection in hospital and I can only post when I get home and posts take a while to write.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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Wednesday, 26 October 2011

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.

Tuesday, 25 October 2011

Lets talk about

Today was a particularly horrible day for me. 

It was the funeral of a friend who had passed away following bowel cancer surgery.

It led me to be quite reflective about my own diagnosis and whether I should have done something sooner.

Since Imogen was born I have had problems with my bowels. It started off as being diagnosed as piles. then a fissure but it didn't improve with all the ointments and tablets I was given and so I just learnt to live with it. 

Everytime the cramps kicked in and I thought about going to the GP I remembered the hassle about trying to get an appointment that would fit in with having 2 children and a hubby who works nights. 

The 2 times I did go to the doctors about the cramps I was fobbed off with it 'probably being ovulation pains' or 'menstrual pains'. Both times these were male GP's I saw. 

So I stopped going to the Dr everytime I had a bout of doubling over pain, mostly in the evenings when I was trying to bath the kids, but instead was bent double on the Loo wondering whether this was normal. 

2 days before I was admitted to hospital I went to see the GP again as I was convinced I was anaemic. I was constantly out of breath and kept getting dizzy all the time. This time I saw a female GP, but it didn't occur to me to talk to her about the fact that I kept getting fobbed off with 'womens problems'

She booked me in for a blood test, which I subsequently had to cancel as I was already in hospital and already had the blood tests, knew I was severely anaemic & had had a blood transfusion.

So, what is the point of all this. 

The last time I saw the lady who passed away was on Scout Camp, at the end of May. I had a horrible time on camp with bowel issues and I knew I had to go to the doctor but fitting it in again was a problem. Speaking to people today she had been unwell then too. 

But not only on camp, she had been unwell a lot in the past and had not been to the Dr and had blamed it on other medical things. 

Who knows, If I had been to the GP more frequently and been more demanding maybe they would have caught my cancer earlier, maybe I wouldn't be panicing about getting to Guildford for 9am tomorrow morning to catch the bus to the hospital to be there all day while Tony takes the children to the Mid Hants Steam Railway. Maybe I wouldn't have to endure the unpleasantness of chemotherapy and all the associated side effects and cock ups the NHS has made so far.

But, if by reading this & by knowing what I am going through it prompts you to go to your GP, get your bowel habits checked out, or anything else then it is worth it. I would hate for anyone I know either in person or virtually to go through the hell I have been through. 

I can see the light at the end of the tunnel. After tomorrow it is only 6 more sessions, but that is still 6 more trips to Guildford, arranging childcare & work, organising myself and generally feeling pretty rubbish while putting a brave face on it for the children who do not deserve this & and are what give me the strength to keep on going. 

So, Please Talk About Your Bowels

Saturday, 15 October 2011

After the flushing

Wow, what a difference a week makes.

This time last week I was suffering the side effects of the chemo, confused about the mis commuication between NHS professionals & generally feeling a bit down.

I picked up my prescription on Wednesday and cannot commend enough the staff in Boots in Maidenbower. The lady I dealt with there was amazing and really showed excellent customer service which makes a massive difference when you are going through what I am going through.

So to Thursday & 'the flushing', @craftyguider commented that it sounded like something the bullies would do at school.  Having been through it I can definitely  say it is not something that you would want to have done on a regular basis but I have definitely had worse medical procedures over the last 3 months!!!!

I was a bit worried because I had to take the kids to the appointment. I needn't have been. Liz, the IV nurse, was brilliant. 

She had to start off by taking my blood pressure, O2 SAT's & temperature and offered to let Isaac or Imogen put the O2 'thing' (technical term there :)) on my finger. They didn't want to, but it helps make the procedures less scary and medical. 

The actual flushing & change of dressing is a bit of a time consuming process. Everything has to be cleaned and sterilised multiple times. In order to flush the line through a little bit of blood has to be drawn into the line. Liz checked that this wasn't going to phase the kids and they were fine. They both had a look at where 'mummys wiggley' (its new name) goes into mummys arm and Isaac proudly declared 'Mummys special medicine goes in there so she doesn't have to go to hospital again'. 

The dressing was then replaced and appointments set for the next few weeks, including the district nurse coming out on 25th October to take Blood for the next chemo from my PICC line rather than having to have a needling. Then in future weeks Liz will come and do it rather than me going to have to go and sit in the hospital for ages.

Things are finally starting to come together. The pain in my neck and shoulder is lessening & Liz also reassured me that this is normal and I should only start to worry if when the line is flushed I hear a rushing in my ears.

So I have 3 1/2 more days of tablets to take and then a 'rest' week

Wednesday, 12 October 2011

More NHS stress

So, 2 phone calls this morning.

Pharmacy - can pick up prescription, big tick for them.

IV nurse - can you come to a clinic tomorrow to have your line flushed?

Ahhhhhh more stress

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Tuesday, 11 October 2011


What is the last thing you need when you are dealing with unexpected side effects,

More stress.

It actually started on Wednesday when, following the PICC being put in I struggled with moving my neck & shoulder. When I mentioned it to the nurse at the hospital her words 'Well it can't be the PICC' my immediate reaction, which I wish I had had the balls to say was 'Why?' 

My neck & shoulder were fine on Tuesday but since you inserted the PICC line they haven't felt normal and today (a week on) I am struggling with lifting my arm above my head, turning my head and lifting the kids :( This could be a long 6 months.

The stress levels were ramped up a gear on Friday afternoon when the district nurse turned up to 'disconnect my pump'. I don't have a pump, am not having a pump and was told the district nurse would be coming on Wednesday to flush the line and change the dressing. She then asked me whether I had collected my prescription. 

What?! I knew nothing about a prescription, although she had a photocopy of it which had been sent to the surgery and hence to the pharmacist (more on this later). The surgery had actually phoned me earlier to tell me I had filled in the wrong form for prescription exemption and to ask me where I had got it from. Umm, well actually you gave it to me and helped me fill it in almost a month ago. 

And so to Monday, where I got my next appointment through the post - for ....

26/11 ( yes this is what is written on my appointment card)

Now I knew it was supposed to be 26/10 but I rang them anyway to check and request a blood form as I thought I was supposed to have my blood tests done the day before anyway. Again the receptionist despite having my details in front of her didn't seem to understand the situation. Her initial response 'thats right, 26/11!!!'

And so to today & the prescription drama continues. 

I go to the GP's surgery to fill out the correct prescription exemption form and manage to get out of them that their is a prescription at the pharmacist for me to collect. So I trot over to the pharmacist to get it and explain that due to the surgery giving me the incorrect form I haven't got an exemption yet but am supposed to have one but can prove that I am having chemo etc and they can deal with that. However the prescription only arrived at the pharmacist that morning, they need 48 hours to fill it. 

Ok thats fine, its not my fault & almost not even my problem because if the district nurse hadn't shown up on Friday I wouldn't have even known I was supposed to have one. They said that they should be able to get it in for the morning and would give me a call when it was there so I could go and get it. 

10 minutes later my phone rings. Its the pharmacy. We won't be able to get your prescription filled by tomorrow as it takes 3 working days to order. 

Right now I have had enough.

I don't care, I say to the pharmacist. I didn't even know I was supposed to have a prescription, I don't even know what it is for, No one told me about it at the hospital. etc etc.

'What do you want me to do?' She asks

Well I suppose I will still need it eventually so you may as well order it but don't expect me to be happy about it. 

So in conclusion

The district nurse came to disconnect the pump I don't have and told me about a prescription I didn't know I needed
The GP gave me & helped me fill in the wrong form for prescription exemption charges
The pharmacist cannot get the prescription I supposedly need for tomorrow when the nurse is supposed to be coming to flush my line. 

Does this sound like a customer friendly service?

Thursday, 6 October 2011

So, what is Chemotherapy like?

Well, I shall try and answer this for you. Although yesterday was a bit underwhelming. 

I think I started off on the wrong foot because I tried to drive the wrong way into the car park, but honestly I went in that way on Tuesday & suddenly it was no entry on Wednesday. How random. So I had to leave Tony to park the car and hope that he would find his way to the ward. 

I thought, and this was how it had been explained to me in the pre chemo appointment that I would see the consultant and then have the chemo. With this being my first treatment, there was no consultant just straight to treatment. 

This wasn't great as no one really explained what was happening, I rolled up my sleeve, exposed my PICC and in it went. There was the standard checking of DOB's, names etc but nothing else. 

And that was it. It pumped it's way in. No drama, no issues, none of the incessant beeping that had blighted my first stay in hospital when I kept rolling over while they were transfusing the blood. 

Lunch was available, although nothing to write home about. The pump counted down how long it had to go and then when it finished then nurse came and reset it to make sure that i got eveything. Then they flushed the line with saline & it was time to go home. 

The whole thing took about 3 hours in total. 

I got my bag of 'goodies' to take home and off we went. Although it wasn't quite that simple. The nurse came to let me know about my next appointment's. Yep, appointment's, Now I understood that generally there were 2 appointments one for the consultant appointment & blood tests and then one the next day for the chemo, but I had been assured that I would be able to have the blood test done locally & then see the consultant and have the Chemo all in one day. I must have explained this about three times to this nurse. She didn't seem to grasp it. I have 2 small children, a 60+ mile round trip (& a car that thinks petrol is a lovely thing to drink) I cannot be doing two trips to Guildford when I can have blood taken locally & then have it all done in one day as it only takes about 3-4 hours. As soon as my next appointment comes through I shall be on to them like a rash.

The thing I didn't enjoy was the atmosphere in the treatment 'ward' I suppose you would call it. It had a lot of chairs with IV trees and pumps next to them and people connected to various bags of chemicals. But that was it, there was no chatting, no swapping war stories.The only person who spoke to me delighted in telling me how lucky I was. I do feel lucky when I read other peoples blogs and posting on bowel cancer and cancer forums, but I didn't feel lucky then & actually I wanted to get a word in edgeways but I wasn't able.

And then we left. 

And the side effects kicked in. Walking down the corridor the wind rushing over my damp lips made them tingle. Well that wasn't too bad, I suppose, except that they kept tingling & probably would have been worse if we had had further to walk. 

The stop at Starbucks for Coffee and cake demonstrated another couple. Washing my hands after going to the loo the hot tap took a while to warm up and so my fingers went numb. Then a beautiful looking blueberry muffin had to be nibbled so as to prevent massive pains shooting through my mouth and jaw. Crying was out too.

Driving home the nausea kicked in too. Once we had picked up the kids and got home I examined by bag of 'pills'. God you need a degree to decipher what to do with them.

There was..

  1. The box of chemo tablets - Take 4 in the morning and evening after food
  2. An antisickess to be taken the evening following chemotherapy, but as late as possible (Tony had to wake me up to take this)
  3. Another set of antisickness to be taken 3 times a day before meals
  4. More antisickness to be taken 3 times a day after meals
  5. Anti diarrhoea tablets to be taken as and when needed.
  6. As well as the anti MRSA stuff I have to stick up my nose three times a day and
  7. The anti MRSA wash I have to use everyday.
So, Tony went to buy tea and I started drugging up!!!

I felt sick & twitchy, and made the mistake of washing my hands properly under my hot tap & I lost them effectively. It took about 20 minutes for the feeling to come back. I ran a drink from the cold tap and lost the feeling in my throat momentarily which was scary. This is a whole new kettle of fish for me. I am not used to side effects kicking in this quick or being this severe. I leant against the dining room wall & my entire arm started tingling.

I drugged up, we bathed the kids and I had to go to bed because the twitching was so bad. It felt like I was about to get a migraine, another unpleasantness. 

The tingling & numbness has continued today. We went to Sainsburys and I nearly dropped the melon because it was too cold. Getting dressed was a problem as my jeans were too cold. They had only been in the wardrobe!!!

The interesting part was walking on the kitchen floor, my feet went numb and I needed socks urgently, again THANK YOU SOPHIE!!!

We are managing them now though. We bought bottles of sparkling water in Sainsburys and they do not cause the numbing of the throat and the sickness and twitching appear to have gone.

I do now feel fluy, but I had my flu jab today so what do you expect!!

Tuesday, 4 October 2011

P.... p .......p .....PICC up a line!

Well that was thoroughly unpleasant.

It is a very sterile process, involving sheets, orange arms, gowns etc.

There was local anesthetic, ultrasound, spasming veins, cutting, threading, measuring.

Then an x ray to check positioning.

And finally the drive home

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Sunday, 2 October 2011


I have the most amazing friends. 

Today we went for lunch at Goffs Manor. I could just leave it there. But I am so overwhelmed by the thoughtfulness & generosity of my friends that I have to have a little (virtual) blub.

Obviously I am about to embark on a new journey that only affects a few people and it terrifies me. I don't know what to expect and also what the cumulative effects will be. I have been worried about coping. I have had so many offers of help and assistance that I have been wary of utilising because I don't want to be seen as taking advantage of people or milking things. 

Today has made me see that people are there for me whatever and they mean what they say.

I was presented with an enormous box filled to the brim with wrapped parcels and surprises. It's label read

A Big Box of Love for Ruth (its downstairs at the moment, I'm blogging in bed while Imogen screams, I will post some photos later)

The instructions are as follows:

Whenever you are feeling low open a present, if the box is starting to look empty someone has to contact Lex so it can be refilled because she has more

I have honestly never been so overwhelmed. I knew that I had friends but this is just incredible. The love & support that I have been worried about having over the next 6 months is there, I didn't even need to ask or beg.

To everyone out there who has contributed to this box I cannot express my thanks enough


Some of the kids suggested that I open a couple of the presents today so I did. I am going to post thank you's here because there is no way I will remember it all.

So today's thanks go to 

Sophie for the socks & Debbie for the bookmarks, as well as the girls for their beautiful drawings & pictures. 

I have one more day left before things kick off & the weather looks lovely, so raise a glass to


I am so lucky

What a week.

We ended last week with a steam train fiesta and have certainly made the most of this beautiful weather this week. 

We spent Monday morning playing hide & seek amongst some of the evergreen shrubs at Nymans National Trust thanks to Tony finally finding the membership cards which had been misplaced over the summer. Once again I came home with a pushchair basket full of leaves, acorns and other assorted forest paraphernalia. Monday afternoon was spent mostly reading Charlie & Lola books at Nicolas and just generally relaxing. 

I am sure I spent all of Tuesday in my car, but it must only feel like that. After a lovely morning at Bumps, Babes & Tiddleypeeps promoting the Santa Special with Imogen, I swapped children with the childminder and we toddled along to the Dentist. Isaac was so good. He sat in the chair and opened his mouth beautifully so that the dentist could look at his teeth. He also got a certificate for having very clean teeth. After that we went and got Imogen back and went to our next NHS appointment for Isaacs pre school booster jabs. I was so proud. He watched the needle going in for the first one and then as the nurse was removing the needle a trickle of blood ran down his arm. He was not happy at this point and snuggled in ever so close. But he walked out of the doctor not screaming like the child we had seen earlier. Back into the car we headed up to get Vicky for an evening of chat and catching up. 

After Pre school & Jungle Tots on Wednesday morning, we headed out to Debbie's for more chatting and relaxing. The kids just played to nicely and I have to admit I started craving Debbie's house. It seems so idyllic living in the country and being surrounded by nature. It is something I have always wanted and one day I will have it!!

Thursday bought more Pre School for Isaac and a chance for cake with Imogen in the morning followed by the garden. I cannot believe how hot it has been. Nicola & her girls came around and were swiftly encouraging the children to play and leave mummy alone so Nicola and I could just sit and chat making the most of the beautiful weather.

Friday morning was the start of what is going to be a long 6 months. I went to the hospital to get my blood taken. After the comments by the phlebotomist (who will henceforth all by known as phleb's) about an interesting coloured blood form ('oh i've never seen one like this before' & 'I hope theres nothing serious in this') & the actual blood taking. I bled remarkably fast this time. I wandered along to The Olive Tree Cancer Centre which is just on the hospital campus and was lovely. I am waiting to hear from them now about being able to access some counselling about some of the issues that I cannot address on a public internet account & also some rather lovely looking complementary therapies.

Isaac hadn't been at preschool on Friday as they had an inset day so following a trip out to the Garden Centre to participate in 'The Worlds Largest Coffee Morning'  courtesy of Macmillan we headed to Horsham to grab a lift with Father in Law to a field in the middle of Surrey to see Tornado pulling the Pullman. It was then a quick dash back home to get changed before collecting Imogen and heading to .......Yeah thats right, the Bluebell Railway for more fish & chips. 

Here occurred one of many surprises this weekend has thrown at me. Tony had got a cake for me including candles so we had a little celebration just before the train got into Kingscote. After we got off the train and went on our ritual walk to see the engine, surprise number 2. Tony had managed to arrange for me to have a ride on the footplate while they ran the engine round for the return journey. I think this sparked something in me. I love riding on the trains with the kids, but don't do it for me. However I loved the heat & the noise in there and it did make me think that maybe in the future I would like to maybe drive one ( & I could if I did the required hours with the Bluebell)

So to Saturday. We went back to Nymans for their Green Living Fayre and had a lovely morning collecting things so that the kids could have made clay creatures (except that we left it to late to go back and make them, so now I need to buy some air drying clay so we can do them at home.) We also discovered that Imogen LOVES cheese and spent a lot of time in the food tent so Tony could chose some cheese for a picnic later on. 

The picnic wasn't a great idea - cheese, brownie & apple juice does not a picnic make. But we hadn't been very prepared and didn't realise how late it had got. 

Once we left Nymans we went back to the Railway to try and get some photos of the trains at West Hoathly as there is a lovely stretch of track just after the train comes out of the tunnel.

We rounded off the day with an indoor BBQ as we couldn't manage to get the gas BBQ reconnected!!

And I think Sunday deserves a post all of its own!!!!