Was I actually a statistic??

Since leaving hospital last week I have been pondering about what happened while I was in hospital and whether things actually worked how I expected them too.

Let me explain that a bit better. 

I was admitted to A&E, and moved to the Acute Medical Unit, then a general ward and finally a gastroentrological surgical ward. Sounds OK, those were the problems I had and have. 

But here is the cruncher, I am also a cancer patient. I never felt like I was being treated as a cancer patient. The Consultant that I saw was not an oncologist, I am not even sure if they were used to dealing with cancer patients, or whether cancer was something that they were using in their diagnosis, treatment plans or ongoing care plans. 

I don't even think I should have been discharged from the hospital. I have to think that they should have been helping me look at long term options as I do not feel any better than I felt on discharge last week and the hospital should maybe have done more to look into the type of care I am going for now. 

Where does this fault lie. Not every NHS trust can have specialist cancer services. Services in this part of the country feel very spread out. When I was admitted where should I have gone? Would I have been better being admitted to Royal Surrey where they have the cancer specialists and wards to provide better care for oncology patients? Would I have ended up with better 'holistic' treatment? 

I don't know, I am not an NHS commissioning manager or who ever makes these kid of decisions. But what I do know is some of the decisions I have made over the last week have been incredibly hard and have almost been made more difficult because of some of the levels of care I did or didn't receive when I was in hospital.

Approaching the end

As the end approaches a lot of people are going to question the decisions I have made and the ones I have taken. 

You can judge all you like, some people may think I am being selfish or ignorant. Others will not understand why I am making the decisions I am.

Today I have made one of the hardest decisions I have had to make in my short, yes, short, I'm 34 years old, not 74 or even 54, i'm 34 remember that.

I have decided to go into respite care. I cannot be the burden upon my family anymore that I have become. 

I want my children to have happy memories of their home with mummy in & lots of love and fun and laughter. There is already so much pain for me in my house, where I have yelled at them for no reason other than that I can't cope. 

That's not their fault. My uncontrollable pain and suffering has been taken out on them for too long and now we can create happy memories in their home while I receive the round the clock 24/7 care I need.

So, on Monday I enter a new phase of cancer living. I am going into respite care at St Catherine's in Crawley. My new home, the place where I can relax and receive the specialist 24/7 care I need.

You might not understand this decision, it has not been taken lightly, but rest assured it is the best decision for me, my family and my health.

Long time no blog,

That sums it up recently. 

We came back from legoland on the Tuesday after bank holiday Monday and my pain was so strong, I really thought that we were approaching the end. At times now I know it is not far off.

Hopefully, my new morphine delivery system which has to be recharged daily by the district nurses will help with the pain control, but will severely limit where I can go and what I can do. 

It seems safe to say, that overnights are out, and day trips are restricted to what we can do as a family, as all my strength appears to have left me too. 

Let's be realistic, soon I'm not going to wake up, but keep living for me, check your poo, and keep crafting those of you who have been inspired, help raise awareness of terrible, secondary cancer killers throughout the uk.

Silent Sunday

A months supply of medication!!

some random musings

Just over  a year ago I wrote a post about how much I hated being pregnant, but how I loved how my body bounced back and how much breastfeeding helped with the weight loss. I had found that after each of my children I had dropped a dress size without really doing much different, except running around after more and more children. I even speculated as to how many I would have to have to be down to a size 10.

How times change. I am now that fabled size 8-10 and have been since October. I hate it. I still look in the mirror and hate what I see. I look ill and drawn. I look tired and no amount of amazing make up or BB cream is going to improve that, especially when my body has me up and down several times a night and regularly waking in pain at 5.30am as all my medication starts to wear off.
Add in the 3 children under 6, who wake in the night because they are ill or who don’t go to sleep because they have had a nap during the day at the wrong time and I am permanently exhausted. 

Of course, I don’t show it all. I try and put a confident, friendly brave face on it but inside I am falling apart. 

The palliative care I am receiving is excellent, but while sometimes the pain relief is adequate sometimes it just isn’t enough. I see the consultants and have to be honest that sometimes I feel the pain relief is adequate and sometimes i am swearing and squirming in pain. If you took one look at me you probably wouldn’t guess it though.

At the moment though, as the weather warms up I am waiting for someone to congratulate me. 

Why? You might ask. Well I told you that my tumour hadn’t responded to treatment and hadn’t shrunk. The truth is, its not just bloating, but I look as though i am 5 months pregnant at the moment and I can only imagine that it is going to get bigger and bigger. 

Now that I have had time to come to terms with the fact that my tumour is growing I have been thinking about what the options are. I wonder whether surgery to remove part of the tumour might now be an option as it makes my stomach so tender and uncomfortable. 

I struggle with lifting my children and cuddling them. rolling over in bed can be painful and no matter how many wheat bags or heat packs I use, how many paracetamol I take I cannot seem to manage the pain. What i need is liquid paracetamol which works incredibly fast and well. but no one seems to believe me, when I have been in hospital i have had to fight for the liquid stuff as it works so much better for me than capsules or tablets. 

Anyway back to the matter at hand. I am slowly coming to terms with what has happened over the last week. But make no mistake I am still coming to terms with this momentous moment. So, i’m sorry if having a coffee or lunch is not a priority for me right now. I need to focus on my health and managing expectations over the next few months. 

Becoming an animal

Things are not looking up.

What I thought was bloating is not bloating, but my tumour. Chemo has not worked, the tumour has grown and we can now see in my stomach is the cancer getting bigger. 

This means options are becoming more limited.

There is one more form of chemotherapy that my oncologist thinks I might be suitable for.  But here is the kicker, its not commonaly prescribed within the NHS and so my oncologist has to apply for funding for this treatment, which may be refused and so I couldn't have the treatment, or I would become one of those people you see on the local or national news, appealing to the NHS trust to try and obtain funding. 

Once that has been tried and seen if it works then I become a human guinea pig. This means phase one clinical trials. A phase one trial is the next stage once it has been through, I suppose, animal testing. Again my oncologist is hopeful that he has some colleagues locally (Guildford) that are conducting trials at the moment. But there is also the option to have treatment at the Royal Marsden. 

This also looks like it might entail some stays in hospital so that they can monitor the side effects and after effects of the treatments more effectively.

So 7 months down the line we are heading towards the end. However brutal that sounds its the honest truth. I have put my body through hell and back. I have spent 6 months having chemotherapy to no avail. 

Nothing has worked. How do I feel about that. How would you feel? How would you feel knowing that you had a time limit left? 

All I can do is live life to the full at the moment. 

So we have our trip to Legoland planned for half term and some more exciting opportunities coming up, all health dependant. 

And in the meantime I came across this BBC article. It makes me feel better knowing that if I get accepted onto a trial then although it might not save my life, hopefully it will save someone else's life.

http://www.bbc.co.uk/news/health-27323474

May the Fourth be with you and Revenge of the Fifth

Sorry, I don't pun very often but I couldn't resist this after seeing it all over twitter today. 

Also sorry for not posting much recently. I have been very caught up in my own little world and feeing kinda sorry for myself and just doing some reflecting on things.

So much has happened over the last month that I find myself wondering where the time has come from and equally where the time has gone. 

So round 5 & 6 didn't happen. Basically my bowel was on the verge of becoming obstructed again and so they deemed it prudent not to introduce any more drugs into my system and add to the pressures exerted on my digestive system. So once again I have not completed a course of chemotherapy. 

I can't decide whether this is a good thing or a bad thing. I have had some chemo which will have had some effect on the tumours, we hope, but I have not had the recommended amounts and so the effect on the tumour won't be as great or miraculous as should be expected.

It is bitter sweet, knowing that my body is failing, but can tolerate some treatment but not enough to complete the course.

But I cannot dwell on that, I had more important things to plan for... a certain young lady turned 1.

Yep, on the Thursday following non - chemo we headed to the West Country for some much needed rest, relaxation & family time. 

L-R Jamie, Sharon, Phil, Becci, Mum, Dad, Me holding Hope, Tony, Jo
Front Row Isaac, Hattie, Imogen, Alfie

We had a lovely time and managed to get this lovely family shot in my parents garden. In the afternoon we took Hope to her first Taunton Scout & Guide Gang Show, and their 25th show. This brings back all sorts of memories for me. I was in the first Gang Show in 1989, I've been an Edwardian Lady, an Alien and all sorts of things in between. I was presented with my Baden Powell trefoil by Betty Clay (Lord Robert Baden Powells daughter) on the opening night in 1994, setting a trend that had been followed by a range of guides and young leaders through the years. 

On our return back to Crawley it was time to start preparing for our next big adventure & one of our once in a lifetime events. It was time to think about Thomasland.

I think Thomasland deserves a post of its own, so i'll save that for later and just tease you with a photo....

Following Thomasland there was my Mummy & Isaac day. We went to Brighton and had a great time in the sea life centre, where Isaac overcame his fear and touched the starfish in the rock pool. We also took a trip on the Brighton Wheel and had some lovely chips on the beach while Isaac played and collected stones for our garden.

On the wheel

Looking at the turtles

Through the rest of the time I have been back and forward to Guildford to see the palliative care pain consultants, eventually got my 'emergency' CT scan, 3 weeks after it was requested!!!

And very soon I shall be off to see my oncologist to determine what happens next. Keep your eyes peeled for that revelation.

Peripheral Neurophathy

Take a think about what you have done so far today. Even those unconscious things that you just do without thinking and take for granted and then I'll tell you how my evening and morning have been.

When I had chemo first time round (back in 2011) I had to have a stronger dose of Oxaliplatin as I was having it every three weeks not every 2. This meant that the side effects kicked in quicker. The breeze over my face or in my throat was enough for it to start seizing up and becoming painful. There were times I was wheezing as I walked out of the hospital. 

The poxy oxi is not so strong this time but last night the dreaded neuropathy kicked in. Alongside the vomiting this is just enough.

So even walking to the car my face is going numb, holding my handbag is uncomfortable because it is cold. I struggle to text Tony because the screen is to cold. 

Driving home we need the window open because I need fresh air when I am vomiting every 20 minutes. But this again makes my face feel really uncomfortable and sore because of the breeze.

Walking from the car to the house is just as bad and it is getting worse now, which is what I as expecting. The pain and tingling is horrid.

I go upstairs to go to the loo, the toilet seat is cold so I loose some sensation in my fingers lifting it and then loose sensation somewhere else while I am sitting on it. 

I need to take my painkillers, but need to run the hot tap first to get tepid water so I don't loose any sensation in my throat. But in order to do that I need to check the temperature so it is not too hot that I can't swallow it. Catch 22, fingers are numb, but throat is not. I decide to take some oromorph as my pain levels are quite high, but this is cold to swallow and causes some choking as I can't swallow it correctly.

Even the duvet and pillows being cold causes me problems and tingling.

Fast forward to this morning, I have had to find a pair of gloves to be able to take milk, butter and fruit juice out of the fridge to feed the children breakfast. Even bread which has been on the side all night gave my fingers a tingle. I had to run the tap again to get tepid water to make squash for me to drink and take my tablets as stuff that has been on the kitchen side all night is to cold. 

I am dreading changing Hope's nappy as I know that using a wet wipe will be agony, based on the fact that I used a face wipe on my face last night as part of my routine and didn't think about what I as doing. 

Peripheral Neuropathy - Making life difficult for cancer patients

Hypocrisy

Hi, my names Ruth & I am a hypocrite.

As I sit here giving Hope her lunch of nice healthy carrot sticks, cucumber pieces, water, cheese, ham and fruit I realise that yet again cancer has given me something to beat myself up with.

I'd love to be tucking into a healthy salad with plenty of greens and veggies. However if I want to have a peaceful afternoon not in pain I will settle for some supernoodles, or a pot noodle or some other piece of processed food.

These are the foods that don't mess me up and mean I can function on something like a normal level. 

But there are some many sticks as a parent to beat yourself up with and one thing I always thought I would abide by was the saying that I wouldn't make my kids eat something if I wasn't going to. 

Nothing makes me crosser than people that make their child eat something but won't try it themselves. There are some exceptions to this rule. I don't like olives, I occassionally try an olive but I still don't like them, but I would not force my child to eat one either. 

However the number of children I have come across who do not have these boundaries enforced is insane. Children on scout camp who do not like potato wedges, but will happily eat chips. I don't like chicken casserole, but will eat chicken nuggets. 

So I am now a hypocrite. All too soon I will sit at the dining room table with my children while they tuck into a roast dinner with all the trimmings and I will try and force some down, knowing that it will wreck havoc on my digestive system and I'd far rather have a bowl of BBQ  beef supernoodles, sweetcorn relish and baked beans, followed by a muller greek style corner cherry yogurt (no other flavour will do at the moment).

Sacrifices

When you first pee on a stick and get that positive reaction you know your life is going to change beyond recognition. You know you are going to have to make sacrifices. 

No more long Saturday & Sunday lie ins with the papers and a huge bar of dairy milk. No more spur f the moment walking weekends to Scotland or the Lake District. Things need planning. 

However having a baby does not mean you have to sacrifice everything. 

Flicking back through thus blog will show you some of the amazing things we gave done with our children. Imogen went to her first music festival at 6 months old, we've been on scout & guide camps. Weeks in the open air with no distractions. My children gave  a healthy respect for outdoor cooking on open wood fires, they have been caving & to the home of scouting & guiding. They have celebrated girlguiding uk's centenary at he top of the London Eye. 

They are also well versed in British steam railway history, they love nothing better than the smell of coal and the slower pace of life illustrated by a steam train.

This is something you accept when you make the monumental decision to have children.

What I cannot accept at the moment is all the sacrifices I am having to make because of bloody cancer.

Everyday I have on this planet is now so precious to me, I am edging ever closer to that moment when my children and my husband will have to move on without me. The time I have left is all about creating memories. 

I did not ask for this. I did not ask to have my lifetime taken away from me. I did no ask to have to listen to unsympathetic doctors who have no idea of what you are living with, have no idea about the realities of living with death being just around the corner and the balancing act you play dealing with that and the demands of a running a household, with a very young family. 

Your life is no longer your own, it is dictated by hospital appointments, district nurse appointments, making sure you have enough pain relief or other drugs in the house or on you to ensure that you can get through another day without weeping in pain or snapping at the children because everything is just so exhausting. 

So today we created some beautiful memories for Imogen. I truly cannot believe that she has been in my life for 4 years. She is a whirlwind of tantrums and determination, of tenacity & love. Her smiles and intelligence are second to none and I would not have missed a moment of her life so far. 

The absolute delight I have experienced in being her mummy is incredible, from the way that she saved half her birthday presents on Thursday so that she could open some when daddy got home puts a lot of grown adults to shame. To the way that she chose her birthday party so carefully. Who would have thought that a group of 3 & 4 year olds would respond so positively to making & decorating biscuits and cupcakes this afternoon, but they did and I am pleased to say that there are some definite GBBO winners out there!!

More on customer service

I blogged a couple of weeks ago about some disastrous customer service I had received over a couple of days, and am pleased to say that some things have been resolved and some are still on going. 

The Long Tall Sally issue was resolved remarkably quickly. A lovely CS rep agreed that it wasn't good enough to leave me waiting 4 weeks before informing me something was out of stock so I got a more expensive item for the same price and had a refund of my delivery charges which I was very happy about. 

Southern Railway unfortunately have still not responded. I have chased them up today to limited success. But I shall keep blogging about them until they rectify the situation that left me embarrassed and out of pocket.

In the meantime the news last week that the NHS has drafted in Sir Stuart Rose to help with customer service is music to my ears. I have long wanted to write about the woeful customer service that I have experienced in the NHS and now at last I feel I can. 

Imagine this scenario.

You have decided to take advantage of one of THOSE sales, you know the ones I mean, that start at 8am Boxing Day and definitely end some time on a Monday. You've driven to the retail park, found a parking space, (persuaded the husband that you really need a new sofa/bed/dining room table), entered the store and found an assistant. You've chosen the furniture you want and it comes to sign the deal.

But instead of signing the deal there and then, the sales person disappears and comes back a few moments later and says that you can't sign the deal until Wednesday. 

Do you accept that? No, why would you. You are there to make a purchase and want to make a purchase there and then. 

Why, then do we accept this from the NHS?

My previous admission to hospital and subsequent transfer to Royal Surrey was, I was told, an emergency. Why then having been transferred on Friday did I have to wait until Wednesday to get any kind of treatment or test? Then having had the treatment and tests was I told that there was nothing they could do this time and left sobbing on my bed with no one (nursing staff etc) knowing that the Dr had even been in to see me. 

Imagine another scenario. 

You have £50,000 to invest (yeah, wishful thinking, I know). You call the bank/financial advisor to make an appointment to see them and discuss this. Rather than offering you a specific appointment they tell you that the only way that you can see someone is if you arrive at 9am on Tuesday morning and wait until they are free. This means that you might be seen at 9.15am or you might wait in the waiting room until 4,15pm. Do you accept this? Of course not, you call another company that offers appointments. 

But as an inpatient in hospital this is precisely the scenario you face day after day. You see someone who says you are going to have an endoscopy, or a CT scan or some other procedure. But no one can tell you what time it will be. Frequently I have found myself being taken for procedures during visiting hours. This leaves me wondering whether my visitors will turn up and then leave or what they will be told. Some procedures mean that you don't get taken straight back to the ward so you might miss your only bit of normal life due to the inability of the NHS to schedule, 

Now, I know there are emergencies and these take precedent. But what about the patients. These people are in hospital and are at their most vulnerable and there is no thought given to treating them like human beings. Because you are an inpatient you feel like you are not an equal member of society. 

I was transferred to Royal Surrey as an emergency, yet it wasn't to much of an emergency as I wasn't given any kind of treatments or tests until Wednesday. 5 days of waiting. 

This wouldn't be acceptable anywhere else, why is it acceptable in the NHS?

Why can the NHS not give people times for appointments as inpatients to ensure they don't miss out on seeing their loved ones, who may have travelled a considerable distance to see them. 

I could go on and on. I could tell you about the fiasco of dealing with multiple NHS trusts with different rules and procedures who can't communicate with each other. The contradictons and excuses given. 

What it comes down to though is that because the NHS doesn't have shareholders and profits, it isn't accountable in quite the same way as a business and so the 'customer' will never be the focus of the organisation in quite the same way. This is the real problem with customer service in this country.

Today's news

Well, the headlines.

The tumour hasn't grown, but equally it hasn't shrunk which seems to suggest that it hasn't responded to the current chemotherapy regime of Irinotecan, 5FU and Avastin. 

This means that I need more aggressive and evil chemotherapy. This means more oxaliplatin and 5FU. 

You may remember oxaliplatin or poxy oxy as it is known amongst the bowel cancer patients. It is the one that cause peripheral neuropathy, you know, the tingling in the fingers & toes and numbness in the cold. 

I cannot wait, luckily I don't have too. Dr Cummins wants this to start on Monday! yep like after the weekend!!

I will be having this fortnightly so at a slightly lower concentration than I had previously, and I'll have 6 initial sessions, then another scan to see what the progress is. 

Hopefully the removal of the Irinotecan and Avastin will curtail the bleeding and so that will alleviate some of my worries.

Don't be under any illusions though. I am still very ill. If this lot of chemotherapy does not work, we have to start looking into alternatives, radiotherapy, trial therapies, anything to try and target this awful disease. 

In the meantime I read about an app you can download to help scientists try and find a cure for breast cancer. So if you or your significant goer, or anybody else you know is a gamer, visit

http://www.cancerresearchuk.org/support-us/play-to-cure-genes-in-space 

and download the app. It's free, and helps fight cancer. 

Dorothy, we ain't in Kansas anymore

To be more accurate, actually I am not in Redhill anymore. I'm on (I think) the first floor (C) of Royal Surrey Hospital in Guildford. 

Earlier today things took a turn for the worse. Not physically for me but in the interpretation of all the results of all the tests I have been having recently. 

Things appear to have been getting aggressive in my stomach and treating me was beyond the scope of the consultants and teams in East Surrey. 

The consultant rang and spoke to Dr Cummins (my oncologist) and he agreed that I needed to be treated, we were not and are not going to let this beat us this early on in the year. 

So, it was decided that the best place for me to be was Royal Surrey. They have the consultants, the experience, the oncology department and can treat me far more effectively here. The plan was for me to stay in East Surrey over the weeknd and move to Royal Surrey when a bed became available probably Monday. 

This all took place just before lunch this morning. Which incidentally I didn't get to eat as I am back on free fluids/clear fluids. Which basically means soups with no lumps, jelly, ice cream, mouse etc etc.

I spoke to Tony and he would come to the hospital as soon as he finished work. 

At about 3:15 the registrar came to take some blood from my PICC line and then the nurse came in with the news that there was a bed at Royal Surrey now. 

So, that was that. Luckily Tony arrived before I got whisked off and I got to update him on all the information I had been given in the last few hours. We quickly called my mum on the bedside phone to give her a quick update, skyped Isaac who had spent the day with grandma as he was sick this morning and had a cough (?) and then the ambulance crew arrived and I was being wheeled through the hospital and loaded up.

It turns out that out of all the ambulance crews available I get two gents. One of whom went to school with my husband and one of whom is a scout leader in Crawley, I mean what are the chances of that happening?

We left East Surrey at 16:23, we arrived at Royal Surrey about 30 minutes later. I have officially now been bluelighted through Reigate and around the M25.

At present I am waiting for pain relief because they can't use my drugs chart from East Surrey, but am clear that solving this problem is going to involve some fairly hefty medical procedures, maybe as an emergency if something happens over the weekend, but more than likely next week as long as I can get through the weekend with no WIFI now ;(

Living with cancer

Living with cancer is much more than just going to weekly, fortnightly or other frequency chemo appointments.

There is all the side effects and problems that tumours, especially ones that cannot be operated on cause.

Consider this, since December 23rd I have been admitted to hospital 4 times (3 of those via ambulance).

The latest admission rounded of a lovely evening of drinking tea and teaching some of the people who made my very special quilt how to knit.

Here's how it happened.

I ate a biscuit (never again), got up to go to the loo, and face planted into Emma's under stairs shoe rack, unconscious. I imagine panic ensued. You don't expect your friend, even if she is suffering cancer to faint when she has seemed fine all night. I also have several small cuts to my chin and lip to show for the ordeal.

An ambulance was called, but Emma lives on a new estate so someone had to chase the ambulance up the road, while the lovely Jennie had been woken and came to provide some medical reassurance. 

Luckily for Emma I managed to contain the nausea I was feeling for the ambulance and I'm glad I did. 2 and a half bowls of blood later and I was worried. Blood remains in your body, vomiting blood is never a good sign. 

I was then hooked up to enough painkillers to fell a small elephant (entenox and my favourite liquid paracetamol) and took another trip to A&E.

A&E was pretty uneventful, until the vomiting started again, Tony arrived and was greeted with the sight of his wife being rushed into resuscitation while vomiting blood. 

They gave me some anti sickness drugs, one of which gave me an awful rash up my arm and so now needs to be added to the list of allergens (along with penicillin & liquid tramadol). They also took a chest X-ray and then Tony was allowed to see me. I can only imagine what had been through his head and I apologise with all my heart to you my love. I do not ever mean to scare you and I am sorry about that.

I was moved to the Acute Medical Unit where I am now and 48 hours later have not vomited anymore blood, but am still suffering from Melena (Google it if you wish).

I have had a CT scan and another endoscopy (camera down the throat), but came round from the endoscopy to the most beautiful thing in the world, back on the ward with my husband and children just arriving. 

This uncertainty about whether I will collapse, when I will collapse and what happens dogs every step of my life & panics me everyday, thanks to those closest to me, my amazing friends who so far this week have looked after my children so Tony can go to work and continue to earn, rather than taking the time off either unpaid or cutting into our precious holiday time together as a family.

Finally, after reading this please do one of two things

Visit www.blood.co.uk and register to give blood 

Or my very good friend Emma Patterson is completing dryathlon for cancer research uk, please sponsor her and make my dreams of an artificial stomach come even closer.

Dinosaurs suffered with cancer and a cure will not be found in my lifetime, but other research can help patients suffering from cancer, and giving up alcohol is a massive sacrifice to raise money.

What cancer does to you

When you have cancer eating becomes very important to you. You eat what you want when you want. Because I have lost so much weight this is even more true for me.

This afternoon I have been in tears because I wanted emmental cheese to go with some crackers. Tony couldn't find what I asked him for, so he bought me Brie. Which normally I love melted onto a bagel or toast. But I wanted emmental.

I cannot get over how pathetic I'm being about cheese.

There is no point crying over missing cheese.

Hospital patients

I've been spending a lot of time in hospital lately, and have been using my keen powers of observation to notice that the same patterns occur amongst patients!! Whether in Somerset or Sussex, surgical admissions or a proper ward, there are some characters that get everywhere. 

I thought I would share this with you. It is intended to be lighthearted and tounge in cheek and not designed to offend at all.

1. The queen bee (remember there are no mixed sex wards so I can only comment on women's things!!)

She has normally been on the ward for a few days and has an opinion on everything. I mean everything; the nursing staff, the clinical staff, the food, the support staff. Given half a chance she'll even have an opinion on your medical condition and care. She spends a large amount of time talking about her numerous and varied medical history dating back to her giving birth in 1901 when you stayed in hospital for a month etc! You really need to tune her out.

2. The rule breaker (May very well be the above, but not always)

Visiting hours are 2 - 8, but her visitors rock up at 11am, always with some sob story. Throughout the course of the day more and more are added until you wonder whether you have crashed a family party. The most I have seen is a total of 15 people coming and going. They are generally loud and will spend a large amount of time talking to other family members on mobile phones. Yes, visitors are lovely, but spare a thought for us who do not have that many people to tag team, or who simply want to spend the morning sleeping and processing what the consultant has told you.

3. The long termer

This patient has been admitted several times to the same ward, or is generally elderly and is awaiting additional support from the community to enable them to go home. They have a lovely relationship with the staff and are always treated with absolute respect & dignity. I always feel a little bit sorry for them as I am sure they would recover better at home, but resources are so limited they have to remain in hospital.

4. The emergency admission.

Again this is normally an elderly patient who has maybe had a fall or been taken ill at home or in their care home and been brought in by ambulance. They spend a lot of time moaning as they have nothing. They don't have their glasses and home comforts. Even a pair of slippers or nightie that is familiar. Their possessions that they came in with are normally bagged up in a patient bag and staff spend time phoning friends or relatives to try and get them some home comforts. 

5. The mystery admission

A person who has a range of symptoms that mean they could have anything and are under a completely different team to the rest of the ward. So when rounds are done, their consultant is either really early or really late. This is normally me - I have been on gynaecology wards, urology wards and sometimes the correct surgical ward!!

6. The Phoenix

When you arrive on the ward this person looks like they are at deaths door. They have probably had major surgery and are recovering well. 2/3 days later the transformation is incredible. They really are a testament to the amazing power of the NHS and it's caring staff.

Then there is the postnatal ward. There are generally three types of mums on these wards. Again this is lighthearted and no offence is intended!!

1. The first time mums.

Nervously gazing at their new additions in awe. Terrified of doing the wrong thing. Sleep deprived as they don't dare sleep in case their precious bundle of joy wakes up. I am so jealous I will never experience that again.

2. The second time mums

Slightly jaded, having been through it all once before. But terrified of having forgotten it all and very nervous about introducing their elder child to their new sibling, especially if the eldest is still a baby themselves (under school age)

3. Third time plus mums

Taking advantage of being able to get a rest from the running of the household and delegating to Dad for a change. When Dad does make it in the children are wearing last years summer clothes despite the fact it is October, there is evidence of a healthy diet of sweets, fruit shoots and fast food and the only thing you asked him too bring for you was clearly forgotten!!

Obviously there are the mums who don't have their babies with them as they are in NICU or SCBU. My heart goes out to these mums, it must be awful for you to have to sit there without your baby, I hope that in the future the NHS can have a private space for you where you are not faced with the heartache.

There you go, a lighthearted guide to the patients in the NHS. If you are ever in hospital, have a listen and a look. I bet you'll see them all. If there are any you think I have missed please leave me a comment and let me know.

What happens after Chemo?



Apologies for poor quality of photo and the reflection of my hand.



I've talked alot about how my specific chemo regeime works but I haven't told you about all the other drugs I have to take to ensure that my body copes with the chemo. Before every chemo I get a nasty injection. When I say nasty I mean one that actually causes about 5-6 minutes of pain after it is injected. The nurses try to couter act this by slapping your arm after they have performed it. But it still causes pain.

Then there is the plethora of anti sicknes drugs. 4 tablets in total. I am lucky I do not seem to suffer with sickness during the chemo, but I have seen people vomiting while their chemo is being administered. It truely is horrible stuff. You cannot predict how someone will react until the chemo is being administered.

Once chemo is finished you get your bag of drugs. Yesterday, due to some of the staffing shortages I have mentioned before I had to collect mine from the oncology pharmacy. No great problem, it is on my way out, but it closes at 5pm and I was cutting it fine. The previous three chemo's I wouldn't have made it as my final infusion didn't finish til 5.30. As it is it wasn't ready for another 40 mintues so I was still waiting at 5.40.

So, when I get home I have to sort my drugs. Some have to be taken before food, some after food, some before a certain time. Some have to be taken 3 times a day, some 4 times a day and some twice a day. It is a real nightmare remembering what to take and when.

At the top of this post is a photo of all the tablets I took this morning.

The top two are the most important.

Morphine has to be taken 2 times a day, about 12 hours apart. This is slow release morphine and I can really feel it working now. I take this when I get up and before I fall asleep.
Paracetamol is standard over the counter paracetamol. No more than 8 tablets in 24 hours. What I also have to run alongside this is liquid morphine (oromorph) which I can take as and when I need it for 'breakthrough' pain relief. It works within 15/20 minutes and is amazing. The main problem is it is so liquid I need to take it with a syringe which looks a bit dodgy when you are out and about and need to take some.

The busacopan is a new addition this time as towards the end of this cycle of chemo I was suffering more and more with excessive cramping and discomfort. This has to be taken 4 times a day. I think that means Breakfast, Lunch, Dinner and before bed.

The next three are antisickness. All have to be taken with or around meals.
Domperidone is the nicest of the three. It has no nasty side effects and I can continue to take it if I feel sick through the whole of the cycle.
Dexamethasone is a steriod. Steriods keep you awake if taken to late in the evening. This I have to remember to take before 6pm otherwise I spend most of the night in fitful sleep rather than nice restful sleep.
These 2 I have to take for three days.
Ondansatron is another steriod. I have this before chemo and as a one of dose the morning after.

Finally Loperamide, better known as Imodium. I am sure you know what this is for!! However my dosage instructions are far more intense and to all intents and purposes I don't think it works. I take 2 after the first 'loose stool' and then 1 tablet every 2 hours, until things firm up. I normally only have to take this for 2/3 days as it is to counteract the evil side effects of the Irinotecan.

Finally I have my 5FU pump. Which some of you have seen and starts of as a hard tennis ball sized pump connected to my PICC line and gradually deflates over 46/48 hours when I go and see the most annoying IV nurse to get it disconnected.

So you see, chemo is much more than long day in Guildford!!!

A very special quilt

Yesterday I went to what I thought was a normal grown up Christmas party. There was food, music, good friends, sober people (me & the other drivers), drunk people (people that had managed to arrange a lift) and a secret Santa.

So the time came for the secret Santa. I expect to be last at these kind of things, I was normally picked last at school for most things, and my name would never be picked for any of the extra curricular stuff. So it was no surprise when 'Santa's sack' was getting emptier & emptier and I was still presentless.

What I was not expecting was what happened next. 

I was given a card. There was a message inside from everyone there and then I was given the biggest present by far.

Inside was the most incredible, beautiful handmade quilt. It had been made by my amazing friends most of whom had not sewn since school days, I would imagine. Coordinated by the amazing Button Becky from her incredible stash of vintage and quirky, kitschy fabrics. 

I was speechless, again. Once again my coniving, devious friends have managed to reduce me to tears with their generosity of spirit, their thoughtfulness and the time that this must have taken. We're not talking people with amazing amounts of time on their hands. These are mothers, wives, people running households and errands for between 1 & 4 children. Juggling their lives, their husbands lives and their children's lives and they had made time in these lives to spend time making something for me. 

I am humbled by this. Words fail me (clearly not, seeing as I'm blogging about it!!) 

So to Carol, Sarah L, Sarah S, Becky, Debbie, Kathy, Karen, Charlotte, Emma, Alison, Rachel and Becky's neighbour who made my beautiful quilt thank you from the bottom of my heart. 

As you can see from the photo above the children and I love it, even Tony was blown away by your generosity.