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It is a little bit out of date as the NHS doesn't tend to have a WiFi connection in hospital and I can only post when I get home and posts take a while to write.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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Saturday, 30 July 2011

After the bombshell

So I was home. 

It was lovely if surreal. I had to remember to take my own medication. No one reminding you!!

Because I had been taken in so suddenly Imogen had had to stop Breastfeeding which had been incredibly hard for me to accept and come to terms with on top of everything else. This did mean that Tony had started putting her down while awake and letting Isaac sleep in our bed with a barrier between them.

This continued, although Isaac swapped Daddy for Mummy as daddy was now back at work. He provided just as much entertainment as a ward of older women discussing their hysterectomies and gynaecological problems, particularly when he sat bolt up right in bed and told me that 'no mummy I don't want a picnic in the toilet!!'

I would like to add that I have never expected my children to eat in the toilet and when we have a picnic we do tend to go and sit on some grass or a steam train!!

The highlight of the time back at home was going to be a trip to Nottingham for a wedding of a very old friend from Uni. Originally we had planned for all 4 of us to go and drive up. Given the current uncertainties in my health we called in the cavalry (My Dad) and him and mum agreed to have the kids over the weekend so Tony and I could go up on our own. This did involve taking the train, in fact taking several trains, but it was worth it.

Everyone knew what had happened but no one cared. It was like being back at uni, although I didn't drink but everyone else did!!!

On the Saturday evening I started to flag at about 9.30pm and Tony walked me back to the hotel, which was all of 500m and then went back to 'party'

I settled down for some sleep and it came back. Yep, the pain was back with a vengenance. I tossed and turned all night. I'm not sure what time Tony came back I know he started off on bed with me but ended up on the floor to give me some extra room. Not that it made any difference. The only way I can describe the pain is unrelenting. It came in waves and sometimes my 'stomach' went hard and then soft. It would be needle sharp and just wouldn't go away. It had me in tears due to the nature of it. I have had 2 children and this was a lot worse pain than either of those.

I was just drifting off when Tony's phone rang. It was our lift home asking how long we were going to be. I don't think I have ever got dressed that quickly and packed too!!

Because it was Sunday getting home was not as easy as getting there. The trains were off so we were being taken into Peterborough to get the train back to Kings Cross, rather than St Pancras where we had come from. 

Our train from Peterborough was not til 11am and we were there about 9.45. We thought that we would try our luck with getting on an earlier train. Even though I was in tears in the booking office the staff were really unhelpfull. Only offering us tickets at almost double what we had paid for our tickets. That was that then, we were stuck til 11am. 

The train arrived we fought for our 'reserved seats' and settled down to get home. I had already checked out the hospital phone number and had called my consultant, however they weren't in the office until 7am on Monday morning. 

Tony and I talked about what to do. Because the car was in Redhill we had to drive past the hospital to get home. I wanted to go home to the kids and so we did.

July 13th - The Colonoscopy

I spent most of Tuesday night up and down like a yo yo, and consequently was not too bothered about the noise on the ward and the new additions.

The day started as normal with 'obs', which consist of blood pressure, O2 SATS, temp and pulse measurements & then later on 'meds' obviously medication.

I kept asking what time the colonoscopy was scheduled for but just kept getting told that it was this morning. Now this is pretty frustrating as if I had been an outpatient I wouldn't have been expected to just turn up when the department opened at 9am and waited. 

Eventually the call came and rather than a porter this time I was escorted down to the department by a lovely healthcare assistant and the ward sister. This was after I had changed into a lovely hospital gown. 

The only time I have worn a hospital gown was when I gave birth to Isaac and then you put it on back to front to enable easy access for breastfeeding, skin to skin and all the other things that are important when having a baby. 

I put the gown on, they are rather tight around the neck, snuggled into the bed to protect my modesty and sat back to enjoy the ride. Yep, that's right I loved this part of being in hospital. I never had to get out of bed and I loved it, it meant you could sleep anywhere and had all the people wondering what was wrong with you. 

So we headed down to the endoscopy department and navigated all the corridors and doors and lifts and headed into a cubicle where I had to look over all the paperwork. Finally one of the healthcare professionals came in to discuss the procedure with me. At this point I explained my bad experiences with concious sedation and they were quite sympathetic and offered me a local anaesthetic instead, I was very greatful for this although I think this did lead to more discomfort.

I shall stop there and not tell you about the procedure. If you want to know about colonoscopy's google it!!

Once they had finished they let me know that they had removed a small Polyp and sampled a larger one which was causing an obstruction.

I was taken back to the ward, although by whom I can't quite remember.

I definitely had quite a long sleep after lunch, although what I ate is slightly hazy!!

Shortly after I woke up I had my visit from the kids, Tony and as an extra treat my mum. She had come over from Somerset to help look after the kids as the consultant had been very determined that I wasn't to go home until I had some help to look after them as I wouldn't be able to look after them fully due to the nature of the problem.

While they were all there, the staff nurse came round and said that the doctor was there to see me and did mum want to take the kids off for a few minutes.

This was when the bombshell broke. 

There was no easy way to say it. I remember reaching for Tonys hand and and holding it and squeezing it while he said (& I can remember exactly)

'its not good news, we've found a tumor obstructing your bowel and taken biopsies to determine whether it is cancerous or benign'

My world fell apart. I am 31 years old and am being told that I potentially have bowel cancer.

They explained that the next step was to wait for the results to come back and then they would be discussed in the meeting amongst the consultants, surgeons and associated personnel on the following Tuesday and I would have an appointment the following Wednesday to determine what the follow up treatment would be.

They left then and the staff nurse came back in and asked if we needed anything. We asked her to go and find mum and the kids so that we could tell them the news. 

How do you explain to a three year old that mummy has a potentially cancerous tumor?

When they came in we got them to sit on the bed and explained that the Dr's had found something in mummys tummy and that they had taken lots of pictures to find out what it was but that it would take some time to look at all the pictures and find out what it was.

Then the best news of all. I could go home. They gave me tramadol (a nice strong pain killer) and told me that I would have to call on Monday to find out when my appointment was on Wednesday. If I had any problems in the meantime it would be worth calling the hospital as well.

And then I was home and had to start telling people.

I called all my family and explained what I had been told.

There was a tumor in my bowel that was obstructing it. Biopsies had been taken and the results would be back in a week. It was probably going to require surgery to remove it.

That was it. I was home. 

Friday, 29 July 2011

What a week - THE BOMBSHELL - Part 4 - Monday 11th July & Tuesday 12th July

As this is now so far behind I have to put some dates on this so that you know when I am writing about.

Monday started the same as every other morning in hospital, ie someone trying to take my blood pressure at about 6am. I think I may have told them to 'leave me alone as it was obvious I wasn't dead'.

We were still no closer to figuring out what was wrong and eventually the entourage came about and told me what was happening.

There was an area of inflammation on my bowel in and in order to find out what it was they wanted to do a colonoscopy and get some samples for a biopsy.

I thought that meant I would get a bit of a break then until a porter showed up for me. It appeared that after all the fighting that had happened over the weekend I was going for another CT scan, this time of my chest. 

This was good news for me but there was a woman on the ward who had been bleating since her admission on Saturday about going for a CT scan of her lungs. The look she shot me was unbelievable!!

Once I got back I finally got a hot meal. I can honestly say that the Shepherds Pie had never tasted so good, even if it was only luke warm and a little bit 'crusty'

Tony and the kids came in later on again and we had lots of fun playing on the bed and colouring in. At one point I overheard one of the women complaining about Isaac's thumb sucking, and wondered whether she would have the guts to say anything to me about it. 

More sandwiches for tea and then more visitors. 

I then decided to have a look at the booklet and information about the colonoscopy that one of the staff nurses had given me earlier on. I started to worry at this point. Specifically about the sedation that they use to do the prodecure. They use a type of anaesthetic called concious sedation. I had had this before when I had a wisdom tooth removed and did not like it at all. The only way I can describe it is like loosing parts of your memory. Crucially 'parts' of your memory. You can remember some things then you have a gap and that was what I didn't like. 

And so to sleep.

Tuesday was pretty boring. You can only have clear fluids before a colonoscopy. However it is not nil by mouth. You can have black tea and coffee (bonus, I only drink black tea and coffee), clear soup - I think this means that they take the normal soup and sieve all the bits out because it definitely tasted of something, and best of all JELLY!! Thanks to all my Facebook and twitter friends I also had a lot of forbidden suggestions as well - Gin, Vodka etc.
You also have to 'clear out' the less said about that the better, after all this is a public blog and things cannot be deleted from the internet!!

I had my visit again and this time actually left the ward to walk Tony and the kids back to the exit. When I got back to the ward the 'windy geriatric' asked to have a word with me. She accused me of being a negligent mother for allowing Isaac to suck his thumb and Imogen to suck her fingers. According to her it was unhygenic, not nice to be done in public. When I politely told her it was none of her business she told me that it was her business when I was 'neglecting' my children's health. I reiterated that it was none of her business and she kept shouting that it was. Eventually one of the health care assistants had to come and tell her to calm down and leave me alone.

That definitely made me more determined that I was going home tomorrow whatever the outcome of the colonoscopy. 

They say lots of things about KARMA and I like to think that was what happened about 9pm when the 'windy geriatric' was moved from the ward to the 'discharge lounge' because she was able to go home. 

I didn't get much sleep on Tuesday night - partly due to nerves about the colonoscopy and for other reasons that are best not discussed here.

Wednesday, 27 July 2011

What a week - THE BOMBSHELL - Part 3 - Sunday

Saturday night was just as eventful as Friday night. 

New people arrived - the windy geriatric being one. More on her later.

Hospitals definitely have a routine and this morning was no different to Saturday morning, 'Obs', 'Meds' then breakfast.

Lovely to be able to have a cup of tea, and some branflakes and then bread and butter. I wonder why hospitals don't do toast?

I thought that I would be spending the morning, reading, tweeting and waiting and was not far wrong. 

My bed was next to a window looking over the nurses station and about 12.20 the phone rang and the staff nurse, who I think was a bank nurse, came into see me. 

Good news, finally my CT scan was happening. Someone would be along to take me down about 1pm. I asked what would happen about my lunch. I had really been looking forward to a hot meal. I was told that it would be kept for me. 

So the porter came, and having learnt from the length of time it took on Saturday I took my book and phone to keep entertained. The staff nurse came with me as well having finally remembered that she needed to give me a new canula as I had managed to pull the other one out the night before.

A CT scan is an interesting experience and I shall share it with you.

The machine itself looks like a donut and you lie on a bench which moves up and down and in and out of the machine. In order to enable it to get the best images you need to have a dye injected into your blood stream. So I was hooked up to the dye and the machine started. A robotic voice told me to take a deep breath and then breath normally and I moved in and out of the machine and followed the instructions. The technicians voice then came over the speaker that the dye would be injected. That was the weirdest sensation. She had warned me that it might feel warm and I would get a metallic taste in my mouth and that was what happened. 

Then it was done and it was back to the ward. The staff nurse apologised that had missed my lunch and asked what I would like. I had order cheese sandwiches for tea as that was the only option. I asked if it was possible to get some soup or maybe a ham sandwich. No that wasn't possible the only option was.......

A DRY CHEESE SANDWICH. That was it, no biscuits, no fruit nothing else. 

I got very annoyed and blogged something at that point, that never got published due to very poor mobile internet connection.

I was annoyed as earlier on in the day the windy geriatric (when I say windy I mean belching and passing wind and never once excusing herself) had had yet another rant at the nursing staff as she 'was unable to eat' and they had offered her jelly, ice cream, soup and finally nutritional shakes. Here was I, who had not eaten a proper meal since Wednesday evening and all I was being offered was cheese sandwichs. Good job I wasn't lactose intolerant!!

The kids and Tony came back in that afternoon and it was a lot more fun than when they had been in the day before. Isaac loved climbing on my bed and playing with it to make it move up and down and also playing with the head and foot movement. 

The time came for Tony and the kids to go home and I decided that I had had enough of cheese sandwiches, but ate the pudding, I can't really remember what it was but know that it was better than DRY CHEESE SANDWICHES.

Monday, 18 July 2011

What a week - THE BOMBSHELL - Part 2 - Saturday

I know it says Saturday in the title, but obviously there is a fairly important part of the process that happened on Friday night which was the blood transfusion. 
Blood transfusions are fairly annoying things, especially the pump and it's incessant beeping. My canula was in the crook of my right arm and I tend to sleep on my left hand side with my hands curled up around me. If you are having a blood transfusion you need to keep your arm straight and believe me that is really hard to do. 
They started the blood at around about 5pm and alongside IV fluids I was pretty much attached to the bed. The first unit went in quite quickly, a couple of hours. Then the next 2 took a total of about 6 or 7 hours. I think it finished about 1am and was really quite fustrating as everytime I moved, the machine bleeped and then I had to buzz a nurse to come and silence it. They also had to, continuously, it felt take my blood pressure, SATS and temperature, so just when you thought that you could relax it was time for 'obs'.

Something you don't realise is that hospitals are 24 hour operations. I thought that once the blood was in I would be able to get some sleep, but no. I think the noisiest healthcare assistant on the planet worked on my ward. People were being transfered in and she didn't seem to understand the meaning of the word quiet. 

Hospital days start around 7am with 'Obs' and then following handover 'meds'. 

I think the consultant came to see me around 10 or 11am and told me that they were wanting another CT scan and it was booked for me at 1.15. I asked why it hadn't been done the day before and was told that the radiologist hadn't wanted to subject me to radiation as I was so young. So I whiled away the morning and then the porter came to collect me and whisk me away to 'diagnostic imaging' ( I love all the names hospital departments have). The lovely nurse down there bought me some trashy mags and I settled back for a wait.

'Oh lovely, you're here for your ultrasound' cut through my appreciation of Cheryl Coles latest romance drama. 'No, I had one of those yesterday and am here for a CT scan' I responded. She went off and came back, 'No, definitely an ultrasound. The chief radiologist wants to perform it as yesterdays was inconclusive' 

I accepted this, although was starting to get frustrated by so many people telling me so many different things. By the time the ultrasound started it was after 2pm. The lovely irish nurse kept telling me that they normally stopped work at 1pm and she had to check someone was available to type up the report. I kind of zoned this out. As far I was concerned I was the patient who still had no kind of diagnosis and didn't care if they were doing overtime or not. I wanted to know what was wrong with me and why they kept messing me around with promises of CT scans and delivery of ultrasound scans. 

The scan took about 25 minutes and the operator did express concern about an area of inflammation in my bowel. Then it was all over and I had a little wait in the corridor while the porter came back and delivered me back to the ward.

At this point I was still nil by mouth and was not sure whether I was hungry or not. I got back up to the ward by about 2.45 which was good timing as visiting hours started at 3pm and I could not wait to see Tony and the kids. 

Unfortunately, this was not as happy as I hoped. The kids were scared and sat either in the pushchair or on Tony and would not come and see me at all. This was quite upsetting and I started to worry about what was to come in the future. 

After Tony and the kids had left everyone else got served tea and I waited and waited and waited.

Finally I was thinking about settling down for some sleep around 9pm when the consultant/doctor came to see me. 

He apologised for it being so late and explained that the ultrasound had shown some 'anomalies' which would need to be investigated. When I asked why I had had an ultrasound not a CT he said that it was down to the radiologist. Then the ultimate question......

'Can I have a cup of tea yet?'

The best thing he said was 'YES' you can eat. I was ecstatic, finally something to eat. 

Then the comedown - the only thing available to eat........ A Dry Cheese Sandwich, digestive biscuits and a rather tired looking apple. I would like to say something profound like, it had never tasted so good, but it wasn't/didn't although I did look over the menu for the following day and was excited to be able to select roast chicken and potatoes as well as some jelly for desert. 

The cup of tea however was devine. I have never craved tea before but that cuppa was heaven and could not have been any better. 

And so to sleep, or so I thought

Friday, 15 July 2011

What a week - THE BOMBSHELL - Part 1 - Friday

Most of you will know some of what has gone on over the last week but here is a complete account for those of you who have missed bits of then saga and also for me to help me keep my emotions and feelings in check while I deal with this bombshell.

So it all started last Thursday when after dinner I had some discomfort in my lower abdomen. Now as a women you get cramping a lot and you tend to dismiss it as 'the time of the month' or something associated with 'that part of you'. This was way more than that. I was trying to watch The Apprentice - The final 5, as one of the contestants was at school with me (either year below or same year, I can't remember) and I could not concentrate or get comfortable at all. Tony was at work and I ummed and ahhhed about calling him to get him to come home so I could go to hospital. Eventually about 11pm I called him and told him that I was properly sick and needed to go to hospital. He called his mum and I called 999. 
This was my first shock of what has been a shocking process in all. After answering a few questions the operator told me that the pain was not serious enough for an ambulance and I should call the out of hours GP. I was incredulous. I knew from experience that the out of hours GP normally involved a trip to Crawley Hospital, I also knew that I would not be able to drive myself anywhere as I could barely walk to the loo let alone anywhere else. But as it was I called them. But you don't speak to anyone straight away you have to wait for a call back which I awaited and got - quite quickly it has to be said. The GP I spoke to reiterated that I would need to go for an appointment at Crawley Hospital and at this point I kind of lost the plot. I was in immense pain and had no one there to help and both kids had now woken up. I told them in no uncertain terms that they would need to come to me as I had someone coming over to look after the children but I would be unable to drive, could not afford a taxi and had been unable to secure an ambulance. They agreed to come but said it would take up to 2 hours. By now it was midnight and Mother in Law had arrived to look after the children. I tried to get some sleep but it was impossible I was not at all comfortable and had taken some Ibruprofen to get the pain. I may as well have taken calpol for all the good it did, except I don't like strawberry!!. By 2am the out of hours doctor had arrived and gave me a prod, took my temperature and blood pressure and said it was probably appendicitis. He again asked me how I was going to get to hospital and I told him that if he wasn't prepared to take me then he would need to get me an ambulance. Grudgingly he agreed and phoned for one, although it would take about an hour to arrive. 
I know the exact time I got on the ambulance was 3.19am as they had to note it on their forms. That was 4 hours after I had initally called them. I think I made a bit of a fool of myself on that ambulance ride as I was having some gas and air which definitely works but also makes things a bit like an out of body experience. 
We got to the hospital and I got some more lovely gas and air and was assessed and then given some more painkillers in the form of liquid paracetamol. Oh my God, that stuff is fab, in the vein and away the pain went, it was great. 
Then the great waiting game began. I was moved from triage into the corridor leading to A&E where I obtained a blanket and managed to get some sleep all but broken as there was an alcoholic yelling and the women in front of me kept vomiting, but some rest was better than none. I was lucky enough to get a cup of coffee about 6am and should definitely have appreciated this more. I finally moved from the corridor into A&E proper although not quite a cubicle, just a bank of beds in the centre. I got my first visitor at this point - Tony - he had managed to leave work at 6am and stopped in to see me on my way home. At this point we both still thought that it was appendicitis and assumed, although we never talked about it, that they would do an x ray, do an op and then I would be home. We never anticipated what was to come. 

Time rolled on and by 8am I had moved into a cubicle and had been seen by a Doctor who told me that my HB was low and had I been experiencing any breathlessness etc. At this point things all become a bit surreal. I had been to my GP on Wednesday because I had been experiencing breathlessness and lightheadedness and told that I had 'borderline positional hypertension' (Low blood pressure when I move) and advised to have blood tests taken which I dutifully booked in.  
When I asked how low my Hb was I was told 6.something. It should be between 10 and 12. At that point I was told that I would need a blood transfusion before going home. 
I spent the next few hours dozing and being proded by various surgeons, specialists and at some point I had a abdo pelvis and chest X ray. The X ray showed that it wasn't my appendix and so I was seen by a Gynae doctor, which started to scare me.
The Gynae doctor told me that he had booked a CT scan for 3pm to see whether there was any kind of problem with my ovaries or womb. 
About 2.30 I was moved to Brockham ward which is the home of the Early Pregnancy Unit and Gynae Assesment Unit. I was stuck in a side room in the waiting room and left. I eventually managed to wriggle around until I could see a clock and watched as 3pm came and went. Just as I managed to unhook my IV and overcome the pain to walk to the door the nurse came back and told me she was taking me for an ultrasound. Yep thats right an ULTRASOUND.
This is where it kind of becomes comical. I was wheeled across the corridor and into a waiting room surrounded by pregnant women of all stages. I was taken in and met the ultrasound operator who explained what they were going to do.
As she was performing the scan she was quite convinced that she could see a large cyst on my womb/ovaries. At this point she asked me if I needed to go to the loo, and I did tell her I hadn't been since the morning so off I trotted to the loo and low and behold the 'cyst' had dissappeared. Yeah it was my bladder!!!
By now it was about 4.30pm so I was taken back to the ward and settled in for my first night in the madhouse!!
This has taken a lot longer to write than I thought so I shall blog about subsequent days soon