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.

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!!

Something on Side Effects

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


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


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


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


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


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


So what other side effects have their been?


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


Then there are the 'conventional' side effects 


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


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


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


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

Ding, Ding, Ding, ROUND 2

Wow, if you have a problem complain.


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


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


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


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


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


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


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


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


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


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


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


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


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


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

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

20th - 22nd July - The Operation, the first night & agony

Wednesday was fairly uneventful. I got something to unblock me, I signed the consent form for the operation, A right hemicolonectomy, and I had to drink the worst drink I have ever had known as 'preload'. It was just really sugary water, but it was very unpleasant. 


I became fluids only from 6pm, other than the preload, I had one lot at 6pm, another at 9pm then was woken at 5.50am the following morning because other than a sip of water to take my pain killers I was now nil by mouth.


Thursday morning things were still up in the air. I was still an emergency operation so I could have been bumped if something else came up. Luckily nothing did so I had a visit from the anaesthetist, then the colorectal nurse, who I had seen a couple of times before to talk about things came along & then the porter arrived at about 9.45.


I settled down in my bed and was whisked off to pre op, where I had to repeat myself over and over again and confirm it was my signature about 3 times to ensure that they definitely had the right person and weren't going to remove a section of some poor unsuspecting persons bowel and associated lymph nodes.


At 10.15 I was taken to be anaesthetised. Here the constant pricking of the last two weeks caught up with me. Having had 4 canualas in when I had been in hospital previously as well as some stand alone blood tests both on the previous visit and current visit my veins had decided enough was enough!!.


Initially they couldn't find a tourniquet so one of the surgical nurses acted as a human tourniquet starting with the back of my left hand, then the back of my right. Nothing, Nada, No luck with that, my veins declined to play ball.


The anaesthetic doctor than bought out the big guns - the ultrasound machine - he scanned the inside of my left elbow, 'oh, lovely veins' he said, took out a needle and Nothing, Nada, No luck there either. So he scooted him and his machine around to the other side, scanned my right elbow and again 'Oh, more lovely veins' I even got to see them on the screen. He took his last needle, put it in, wiggled it around (yeah that sounds rude I know) and again Nothing, Nada. 


They had a little muttered conversation behind me, it was now about 10.30am and I was starting to worry about how they were going to anaesthetise me if they couldn't find a vein.


Then they came back. 'We're going to have to put a central line in'


It turns out a central line goes into your neck. 


This was one of the scariest things I have been through, at this point anyway. My head was covered with a plastic sheet, I had, in total, 3 injections of local anaesthetic into my neck and then was manipulated, proded, poked and manhandled for about 25 minutes while the anaesthetist inserted the central line. I was terrified. All your instincts tell you that needles and necks don't mix, but here I was voluntarily allowing someone I had met about 2 hours ago inject me and manhandle me to put something in. I am not ashamed to say that I squeezed the nurses hand incredibly hard, and cried quite profusely too. It got really hot under the plastic sheet and you feel very claustrophobic. 


After that I had to then roll onto my side while they put the epidural in. I didn't have much faith in this as I had had one when I had Isaac and it hadn't worked all that well. I don't remember much after that.


My next vague memory is of being made to sit forward, and I think they put something behind me and took an X-Ray, but I am not sure.


I did eventually come round and was in a slightly more sitting position and felt very drowsy and uncomfortable. 


I spent about 3 hours in recovery. Periodically I remember someone touching me with an ice cube and a needle. I think this was something to do with the epidural. Eventually the consultant came in and he told me that he had phoned Tony and told him I was out and then I asked the question that I was not sure I wanted to know the answer too.


'Was it a success?'


He told me the tumor was the size of a golf ball and he had removed a lot of the surrounding lymph nodes and tissue and that he was fairly sure that the tumor was cancerous, but it would have to be sent off for histology before we would know.


At the same time he set up one of mans greatest inventions, a PCA. PCA stands for patient controlled analgesia. It is basically a morphine drip that you, as the patient, control. You get a button that you can press and it delivers morphine into your blood stream. I could only press the button once every 5 minutes but that was enough.


About 5.30pm I was moved into the High Dependancy or Surgical Stepdown unit. 


This was a most unpleasant experience. It started with my epidural being turned off after about an hour in there. It eventually got restarted about midnight despite me being in tears due to the pain despite pressing my PCA button almost constantly. On top of this, I received all my belongings from the ward along with a note from Tony telling me Becci and Phil had had their baby at 3.30pm and he had decided to take mum and the kids to Somerset to see the baby rather than coming to see his wife in hospital. As soon as I got this message I tried to call him. He didn't answer his phone. I managed a one word message on his voicemail. I then called my dad at home and told him what ward I was on, what the hospital phone number was and to get Tony to call me as soon as possible. Tony didn't call me til 10.30 because they had been to the hospital first - again New baby comes before sick wife. Yes I was annoyed about this. 


After speaking to Tony and telling him what the surgeon had told me about the tumor I thought that I might get some sleep. This was harder than it sounds. I was in a lot of pain, I had to have my blood pressure, temperature and O2 SATS taken hourly throughout the night. As I said earlier someone finally came and restarted my epidural about midnight, and I managed to get about 3 hours sleep, until the morphine ran out. Then I encountered another power hungry doctor who obviously did not like night shifts. This doctor refused me more morphine and I had to make do with liquid paracetamol. 


This was not good and I think I might have blanked out what happened next because I want to speak to my consultant and see what actually happened so I  know rather than relying on my memory.


Writing this, although cathartic, has made me sob several times so I shall let you know about my day in surgical stepdown unit soon.