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It is a little bit out of date as the NHS doesn't tend to have a WiFi connection in hospital and I can only post when I get home and posts take a while to write.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, 28 December 2011

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!!

Thursday, 22 December 2011

A celebration

I meant to post this on Wednesday but coupled with a sickly Isaac I forgot.

I am now 1/2 way through chemotherapy. I have survived 4 sessions and only have another 4 to go. Or 2 and a bit months to go. 

It feels good to get this far and know that I can do it. However saying that, I do know I am going to struggle with the next 4 sessions. 

Especially the sensitivity to cold. This has been terrible for this cycle. I am still getting the numbness, tingling and now slight pain in my fingers today - Thats 16 days after the oxaliplatin and I, naively, perhaps did not expect it to last this long. 

I have even lost feeling in my nose quite a lot this time and that coupled with the struggling for breath due to the cold air has left me feeling quite run down. 

But we are getting there, one day at a time and 4 tablets at a time and come Mothers Day it will all be over.

Sunday, 18 December 2011

Getting in the Christmas Spirit

So I have really been working on getting into the Christmas Spirit. Chemo has really taken it out of me and I had not been feeling at all christmassy. 

Coupled with being in hospital at the end of November and doing all my christmas shopping in one night on t'internet I was all for cancelling christmas but obviously wouldn't.

To help with the feeling christmassy I have been baking christmas cake, christmas cookies (made a bit of an error, used self raising flour not plain so they were a bit 'puffy') & yesterday I made icing from scratch and iced both the cakes & made chocolate roulade which I now need to roll, once I have whipped the cream.

Now I am feeling quite smug. The last christmas present arrived this morning from ebay and needs wrapping. All the rest of the presents are under the tree and haven't been touched by the children. 

There are three decorations left to put on the advent tree and the children have loved selecting one each morning and choosing where to put it. 

& finally to get in the christmas spirit I did these for the children

Isaacs Video from Santa

Imogen's Video from Santa

They loved them, and have watched them repeatedly.

Monday, 28 November 2011

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!!

Tuesday, 22 November 2011

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 ;(

Monday, 14 November 2011

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 :(

Sunday, 6 November 2011

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!!

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!!!!

Tuesday, 27 September 2011

& another thing

So I have talked a lot about the cancer and its effect on me and the family and the treatment I have received from the NHS, but not much about the other things this blog is supposed to be about....knitting

Since spending time in hospital I have definitely rediscovered my crafty mojo.

It reads 'Joanne, 22 September 1981'
I made this for my sisters 30th Birthday, based on an idea in Making magazine issue 9.

I have also had a lot of new babies to knit for.

Harriet Affinia Buck was born on 21st July 2011
Max was born to Amy & Matt on 31st August 2011
Baby Boden - Worsfold is due anytime soon & I believe Baby Stavrou - Kania is due at the start of 2011.

I love knitting baby things. The toys are so simple but so easy to make interesting with different stitch patterns and textures, or different stuffings to give interest. For 2 of the babies I have gone with this flower 

For baby Max we went for a few other little bits a pieces too. 

Baby clothes are so satisfying to knit. The Debbie Bliss Simply Baby book has some great quick & easy knits that are knitted in aran weight wool so they knit up nice and quick. I knitted Max the little shrug from the Debbie Bliss book, and at the same time thought that I would knock up another hooded cardigan for Imogen. See addicted to baby knitting.

The other two babies will also get some kind of toy and probably a cardigan as well. 

It used to be the remit of the 'Grandma' to knit for new babies. I want to change that perception. Knitting is so theraputic, rewarding & fulfilling. I love the comments when the kids or me are wearing something I have made for them.

Theres one more thing that having cancer has made me do, learn to crochet. 

I had managed to make a foundation chain before but hadn't been able to take it any further despite following numerous videos on you tube, and countless diagrams. At Beautiful days I took advantage of the craft tent, auntie Jo & sleeping children to sit and learn. It took about 20 minutes and less than a month later I made these

Crochet flowers - pattern courtesy of Mollie Makes, issue 3

 Not bad for a beginner I am sure you will agree. I have a veritable crochet garden & am suddenly thinking of all the ways I could use these in the future as I can knock them up in an hour or so!!

And one final photo. 

I knitted this the day before my operation, from a kit that came free with Simply Knittting magazine and it also helped to reinspire my crafty mojo.

Sunday, 25 September 2011

Whoops, I missed....

recording the start of spooks on BBC One :( 

I have been extra busy this week. & if not thats what it feels like.

Cancer & it subsequent treatment does not just effect you. It effects everyone.

This week I rang to make the appointment to get my PICC line inserted (4th October)

In with the confirmation letter for that was the date of my first treatment (5th October).

Alongside all of that I had arranged a flu jab for 6th October as well as the preschool cake sale.

So I have spent the week trying to arrange things for my children. 

To have the PICC line inserted I have to be in Guildford for 10am. This means that I need to leave home by 08.15am at the latest. This, in turn, means that Tony has to be home from work by 8am so I can check traffic, petrol & probably move car seats. He in turn has to drop Isaac at the childminders at 09.30 and then look after Imogen until I get home. 

On the Wednesday Isaac has preschool form 09.30 - 12.30, my appointment is at 11am & I know that that is just to see the consultant, that is not the chemo itself which takes at least 2 hours from what I have been given to understand. It also has to be prepared on site.

So Wednesday looks like this. 

Take Imogen to childminder, take Isaac to preschool, tell preschool that childminder is picking Isaac up. Drive to Guildford (again), see consultant, Hang around waiting for chemo. Have chemo, drive home, collect children collapse exhausted onto the sofa.

Before all of this though it is my birthday. Tony did have it booked off, but now with all of this I have to spend it without my husband. So we did what any normal family would do.

Spent this weekend on 3 different steam railways celebrating.

We started on Friday night on the Bluebell Railway fish and chip train. I love these as do the kids and so we had fish and chips on the steam train.

On Saturday we travelled slightly further East and went on the Spa Valley Railway from Groombridge to Tunbridge Wells, back to Eridge and finishing in Groombridge. I was ever so good. I love Tunbridge Wells' mix of shopping and so could spend hours browsing and spending, but I didn't :)

& today I forfeited the end of the Grand Prix to take the kids to Goffs Park to have a go on the Light Railway they have there.

And now I am doing admin. Not for me admittedly but Rainbow admin & NCT admin and blogging ;)

And now to bed!!

Sunday, 18 September 2011

I just found a cola bottle sweet in the washing machine

But unfortunately that's as funny as it gets today. I feel the need for honesty about how I am feeling before I loose the plot and collapse into a quivering wreck on the floor.

I am a wreck. I feel emotionally drained, tearful & on a rapid downhill rollercoaster I can't stop. 

So lets think about why I feel like this and what has bought it on?

1. Imogen. Or more specifically her sleeping. I have already talked about how, since we came back from Somerset at the end of August she has taken an age to settle and routinely woken in the night. I am at the end of my tether, her screaming breaks my heart but I know I need to let her learn how to settle herself. I just wish it wasn't so painful. More than that though I am fed up with everyone giving me an opinion and telling me that I just need to let her scream it out because by going in to her I am encouraging her.
Firstly I do not believe in letting her scream uncontrolled. I believe that it is harmful for the child and does not teach them anything. When Imogen is screaming I am sitting in the room providing reassuring words and keeping calm. I cannot do this in the middle of the night.
Secondly if I let her scream for to long she wakes Isaac up. Then I have 2 awake toddlers not one. Isaac can settle himself but if he is too awake he struggles on his own and cannot understand why he can't come into mummy's bed too. 
Thirdly although we have a third bedroom it is in no fit state to put a child in and let them scream it out. It needs at least a week of 'decluttering'. I fully intend to eBay, car boot, nearly new sale and recycle the things in there (and in the attic come to think of it) but at the moment: 
(a) I have more important things to do
(b) I have 2 children to look after and they need my attention, although I do do some things in the evenings.
Finally I like having the kids in bed with me. Although they wriggle and fidget there is nothing lovelier than when they snuggle in to me. I love being woken up by the children in bed with me rather than a screaming Imogen or the immortal toddler phrase 'Mummy, I need a wee wee'

2. The whole Cancer thing. This week has been a long one, awaiting decisions. There was the whole Wednesday 'pre chemo' appointment with the real information about how the treatment would work and the hope of the fertility referral. This was followed by the bombshell on Thursday from the fertility clinic, that because I have 2 children I would be ineligible. I do understand, honestly I do, that there have to be rules. But I also think that every case should be considered on its individual basis. 10 weeks ago I thought I had years left to expand my family; I thought I would be able to go through the pleasure and enjoyment you get from watching a new little person develop its own personality and traits; I was looking forward to breastfeeding another baby and watching the contented look on its face as it unlatched and stayed asleep. Yeah, after the screaming & things with Imogen it has crossed my mind that I may have another 'demon' child on my hands, but I still wanted another & now that choice may have been taken away from me. I know that it is not guaranteed that the chemo will make me infertile but I have to work on the worst case scenario and that is that there will be no more little Hayllars.

3. The final thing that is helping to fuel the exhaustion is the constant repetition of everything. When I come out of an appointment it goes like this. Tony and I talk about the appointment and the way forward. Then I call my parents and go through the whole process again. Then I maybe call my sister or brother or little sister and go through the whole thing again. 
I might then blog or tweet about it to get it out of my system. It does help talking about it and by putting it on the Internet I hope that I can help people who are going through the same thing or anything similar can get some support or comfort from the fact that it can hit anyone. 
What I find draining is explaining different aspects of the treatment, or the process or procedures again and again. 
Now, I am so overwhelmed by the support that I am getting from people. The offers of help, childcare, taking me to appointments etc are overwhelming. I also do not mind explaining things over and over again, but it is draining and I want to curl up under a blanket and sleep until it is all over. So please do not stop asking about how I am, what is going to happen, how am I feeling but bear in mind I may have explained something countless times and if I seem bored or disinterested then that is why. 

Wednesday, 14 September 2011

A trip to Guildford

Wow, today was intense.....

So lets take a few steps back and update you on a few things. 

We had a lovely normal day on Monday and went http://www.pooh-country.co.uk/ here to teach the kids how to play pooh sticks, a very important childhood game that everyone should now how to play.
explaining the rules
Watching for the sticks

I think that's mine mummy
Much cheating occured. Especially by Isaac. He liked to  drop his stick on  'steady', rather than the traditional 'GO'. Imogen on the other hand, has a fantastic throw and didn't really grasp the dropping of the stick as close to the bridge as possible. Instead she 'threw' it as far as she could!!
That's my stick mummy
I think the kids had more fun walking back to the car than they did playing. There were.....

We love each other
and rocks to play and pose on.

But enough frivolity, now to the serious business of 'pre' chemo appointments. 

Sometimes I despair of the NHS. My consultants secretary only works part time. She called me yesterday(Tuesday) and explained that I had been referred to 'gynae' for the fertility options. I then told her I was alarmed by the fact that I had received a letter about inserting my PICC line and I was worried that I was going to be bullied into having chemo before I was ready. 

She put me through to a nurse, who couldn't have been ruder. She told me that I WOULD be having a PICC line and obviously the consultant had decided I needed it now rather than later and there was no point in waiting and if I had any concerns I would need to talk to the nurses, but if the consultant had decided I needed it then I needed it. 

Wow, brutal, for someone who is already going through so much that was the last thing I needed. Tears flooded into my eyes and I realised that I wouldn't be able to do this alone. 

I had to go upstairs because I didn't want to alarm Imogen so went upstairs on the pretence of getting her a nappy (which she needed) and cried so loudly that I woke Tony. He gave me a quick cuddle and said he would come with me if I wanted. It was something I badly wanted however I also knew that it would not be fair on my mother in law to expect her to feed Isaac and Imogen dinner as well as lunch, although I would be preparing lunch for her to give them.

I came downstairs and logged onto Facebook and lo and behold my knight in shining armour had arrived. The lovely Nicola would be able to come with me and I was so relieved. 

I didn't sleep well on Tuesday night. I was woken at about 2.30am by my lovely smiley toddler, swiftly followed by the immortal toddler phrase...'mummy I need a wee wee'. Following a swift exodus of Imogen, then Isaac 'my bedroom is too spooky' into my bed I realised that I couldn't get back to sleep. A couple of episodes of Scrubs, How I met your Mother and then Deadliest Catch and I opted for a more unusual method of sleep induction....the night time shower. 

This really works. I got out of the shower, moisturised, dressed climbed back between my two toddlers and was asleep within minutes. Only to be awoken, what felt like moments later, by 'mummy can I watch Thomas now?'

I rolled over, found my glasses and saw that it was 6.40, so I told a little white lie and watched a bit of BBC Breakfast and the local news, and then offered a peace offering of Postman Pat. 

As a slight aside, did you know that Postman Pat is 30 this year?

Anyway I have digressed massively. 

So Guildford. 

After I had got Isaac from preschool (in the car, lazy mummy) Nicola and I set off. 

My appointment was at 2.30pm, I needed to be there 20 minutes beforehand for blood tests, so I was working on 2pm. We were massively early arriving at about 1.30. There was parking opposite the cancer centre and I qualify for subsidised parking which means it only cost £1.50 for the day.

After a quick cuppa we made our way to the reception, where I checked in. 

They gave me my blood forms and off we went for more sticking with needles, then back to reception to wait. 

We didn't have to wait long. We were taken through into a private room with a lovely chemo nurse called Liz. Liz went through everything. 

I am not going to bore you with everything we discussed (we left about 4pm so it was a lengthy meeting). But there are a few key points.

  • There are quite a lot of side effects which can be quite serious so I need to stay on top of my health and not asssume that everything will be ok. On the upside if I have to go to A&E I can get priority treatment.
  • I do not need to have the PICC line inserted just yet. I need to know what the fertility options are and once I know what is going on there I can call and make the appointment to have the PICC inserted. Before that happens I am going to make the most of being able to take the children swimming. ONce the line is in I won't be able to do that & I will have to wrap my arm in cling film to be able to shower!!!!
  • I am going to have to do a lot of wrangling. Liz explained that normally the procedure is go to the dept have bloods taken & see the consultant in clinic. The following day go back to the department and have the chemo. I expressed some distress at that. Not only is it a phenomenal fuel cost, but means additional juggling, childcare etc. Once I explained this Liz said I should be able to have my bloods done locally and then see the consultant in clinic in the morning and have chemo in the afternoon. I will need to be very cunning (in a Baldrick fashion)
  • Some of the potential side effects are quite intriguing. The numbness and tingling will be exacerbated by cold and so I may have to wear gloves when taking things out of the fridge or freezer, as well as not having ice in my drinks and making sure that things are room temperature. 
I left that appointment feeling so much more positive. I think in hindsight reading the Lance Armstrong book has highlighted some of the fears I had and still have about cancer and chemo, but it also prepared me for the fact that things could be a lot worse.

So my next steps....Waiting for
  1. Gynae appointment
  2. Once sorted call to book the line insertion (which is a 2 week wait)
  3. Arrange Flu jab and dental checkup (I think this is in the diary)
  4. Have chemo
And then I shall come back and blog, although I think I will probably blog before chemo starts because you are all travelling this journey with me whether you like it or not!!!!!