About this Blog
Sunday, 9 November 2014
Monday, 20 October 2014
Friday, 10 October 2014
Whatever will be, will be
The future's not ours, to see
Que Sera, Sera
What will be, will be"
Thursday, 11 September 2014
Sunday, 7 September 2014
Friday, 5 September 2014
There are many things that you say to your children that you don't want to; "Stop That!" probably being the number 1 offender. However there is something that you never want to have to tell them and that is that their mother has died. This was my task on the 21st June 2014. I had been lent a book about Water Beetles and Dragonflies and this seemed to put it into a good context for me to help my kids understand. Isaac had stayed at his friends house overnight, so I went to pick him up and tell him. His , reaction was that of total shock, then the tears. Imogen too had stayed at a friends and she didn't come home until the afternoon. I took her upstairs and seeing her face melt with the words that I was saying was, well, heartbreaking.
Thursday, 4 September 2014
Everyone says I am doing well. I hope I am and gradually things are getting back together. A thick skin and a great smile put the illusion on that all is under control. Getting the call from my boss to ring the hospice that your wife needs me urgently is not the call anyone should get. Less than 24 hours earlier Ruth was fine, well chatty and apparently over the funny turn she'd had earlier that day. Emotions ran wild, I grabbed my bag and ran for the door stopped briefly on the way out to tell the deputy manager I had to go. In the car I rang my mother in law and told her to go. I rang my mum and told her to go, I was stuck at a level crossing just outside Bognor Regis. I screamed and cried and screamed to Ruth not to leave me, the journey back seemed to take hours. I got there, straight down the corridor with nurses looking at me as if the worst thing had happened and into the room I burst. Ruth lay there motionless, silent but breathing. Relief. Then the tears. I held her close, talking to her. My mum and mother in law were there too. Emotions filled the room. Hours passed, a few friends popped in which was really nice (thanks Rob, Lex, Francis and Nicola). Ruth's dad arrived, Ruth's sister arrived. Then she opened her eyes. It was a eerie stare no pain but full of fear. She needn't have felt scared. Around 10:30pm Ruth fell asleep and my world fell apart.
Monday, 14 July 2014
There will be a second celebration of Ruth's life on the 30th August between 4-6pm at St Andrews Church Hall in Taunton.
All friends and family are welcome.
It would be really nice if you have any photos to share of yourselves with Ruth at a young age (or older!), please write your name and where and when it was taken on the back - this can then be passed onto the children.
More information closer to the time, or contact Sharon Kinloch for anything more urgent.
We look forward to seeing you there, love from Ruth's Family.
Saturday, 12 July 2014
Monday, 30 June 2014
The details for the Wake / Celebration of Ruth’s Life as follows:
11/7/14, 3-6pm at Maidenbower Community Centre, Harvest Road, Maidenbower, Crawley, RH107QH.
It is open to all friends and family of Ruth. There will be a memory book for your comments and photos (if you do please write your name on the back of the photos and where and when they were taken). This can then be given to Isaac, Imogen & Hope to help remember Ruth.
To give us some idea on numbers attending please drop an email to firstname.lastname@example.org .
I would like to thank Ruths friends for helping with the organisation and running of this event. A subsequent event will be held in Somerset during the summer, further details will be released once they are known.
Please feel free to share this message!
Tuesday, 24 June 2014
Monday, 16 June 2014
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.
Friday, 13 June 2014
Thursday, 12 June 2014
Sunday, 18 May 2014
Friday, 16 May 2014
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.
Thursday, 8 May 2014
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.
Tuesday, 6 May 2014
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|
And very soon I shall be off to see my oncologist to determine what happens next. Keep your eyes peeled for that revelation.
Thursday, 17 April 2014
Thursday, 10 April 2014
My FB and twitter followers will be aware that round 4 was really quite rough. I started vomiting while the oxaliplatin was being infused and managed to fill 4 bowls (thats about 4 litres) and kept vomiting like the other three times.
What was different this time was despite taking all the anti nausea medication, the nausea did not go away. I have felt like death warmed up for the last two weeks. I was sick a couple of times as well. Proper gut wrenching vomit, which gave me back spasms and left me in an immense amount of pain as well as wondering what the hell was going on.
It got to the point where I was dreading yesterday as I didn't think I could put my body through another two cycles.
To cut to the point. I didn't have too. I still spent the same amount of time at St Lukes yesterday, but I was deemed to ill to have another bout of chemo and so yet again it comes to an end before the natural conclusion.
We are off to Somerset shortly and I will update further on why I was not able to have chemo yesterday.
Sunday, 23 March 2014
Sunday, 16 March 2014
Thursday, 13 March 2014
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
Sunday, 9 March 2014
Tuesday, 4 March 2014
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).
Saturday, 1 March 2014
Monday, 17 February 2014
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.
Sunday, 9 February 2014
Thursday, 6 February 2014
|We appreciate you taking the time to contact us. Thank you for your email. Unfortunately it is taking us longer than usual to respond following a much higher volume of contacts than usual. We anticipate responding to your email within 10-14 days based on our current volumes and we are working hard to reduce our backlog. If the matter is urgent please call us on 08451 272920 or tweet @southernrailuk or @gatwickexpress. Please note that if you have sent us a Delay Repay claim, our team will aim to respond within 28 days.|
Southern Customer Services
How ironic, despite having tweeted them at least 4 times, they do not appear to be able to respond at all. So I'll keep you updated on whether Southern Railway actually train their staff on their products and care about the impact one person tweeting and blogging about them can have.
While I'm on the subject of customer service, I'm having serious thoughts about whether I order anything else from Long Tall Sally. At the beginning of January I ordered a few items that were in the sale to compliment my very small wardrobe of clothes that fit. Everything I ordered was in stock at the time, so I was expecting one lovely parcel to arrive.
It didn't really work like that, and soon three of the items I ordered had arrived. I was just thinking I would need to chase them for the fourth item when all my hospital dramas of the last two weeks occurred.
Once I got home I contacted them querying the status of the order as it had taken so long to fulfill. I received several contacts from them assuring me that they were trying to source the item, and apologising for the delays.
I was ever hopeful that I would soon receive the item in question, today I learnt that this is not going to be the case. The item is now no longer in stock.
I have fired off a very cross email to them containing some emotional blackmail regarding aggressive cancer, very young children looking forward to seeing mummy in a onsie too etc etc. I shall keep you updated on the progress of this too.
I know I seem grabby and demanding, but as a consumer if something is in stock when ordered you do not expect to receive an email a month later informing you it is now out of stock.