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.

Resoutions

Now most people have made their resolutions and broken them by the 2nd of January. However I promised myself at the start of the year that I wouldn't make or indeed break any resolutions until I was free of chemotherapy.
I suppose technically that was 14th March, the day I took my last handful of tablets, but I haven't felt like I am free of anything just yet
You see that's the thing about Cancer. It is now a permanent part of my life. I will forever be concerned that it will come back. I know plenty or people go on to live a long and healthy life and never have to deal with it again. I also know people who knock one type of cancer on the head and then have to deal with another and another and another.
I cannot say into which camp I will fall as I am still in the processing mode I have had part one of my follow up which was yet another CT scan, and on Tuesday I see my oncologist to confirm I am all clear.
Honestly I cannot see past that date at the moment. It will be at Crawley Hospital which is the same place I was when I was told that it was cancer, where I had to go to have my PICC line flushed & where there is a lot of negativity for me. Its not as bad as East Surrey which will forever be associated with the surgery and readmissions, or Royal Surrey where I had all the 'poxy oxi'
So until Tuesday life is still on hold, although there are crafty goings on, including purple prickles for a Gruffalo Costume...photos to follow

I'm full of Christmas cheer

So, I had my 5th chemotherapy appointment this morning and am currently sat in guildford friary shopping centre before heading back to the hospital to pick up my tablets. There will be no IV drip today. As regular readers will know I have really suffered with the sensitivity to cold caused by the oxaliplatin. After session number 4, I was regularly having to cover my mouth when out walking to stop me becoming very short of breath, I I was feeling the cold through gloves especially when pushing the pushchair & even struggled unloading the washing machine yesterday because the laundry was cold and my fingers went all numb again. I told all this to my dotor and he appeared to be concerned enough to stop the oxaliplatin and give me a larger dose of capceitabine(?). To be honest at this moment in time I am not sure what I feel. I don't know if this is a permanent solution or whether I will have to have it again in the future. I feel like a bit of a cop out. I was bought up that you finished a course of medication and having been on anti depressants for the best part of 10 years I know what the effects of missing one day/treatment can be. On the other hand, the side effects were seriously affecting my quality of life and more importantly my relationships with tony and the children. So what now? As mentioned I have been for a shop in Guildford and spent most of my Christmas money and have to head back to the hospital soon to pick up my tablets and have my PICC line flushed and redressed. But at least now I will be able to drink cold drinks and can go back to having cereal for breakfast rather than porridge, which I am not a massive fan off!!

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

So, what is Chemotherapy like?

Well, I shall try and answer this for you. Although yesterday was a bit underwhelming. 


I think I started off on the wrong foot because I tried to drive the wrong way into the car park, but honestly I went in that way on Tuesday & suddenly it was no entry on Wednesday. How random. So I had to leave Tony to park the car and hope that he would find his way to the ward. 


I thought, and this was how it had been explained to me in the pre chemo appointment that I would see the consultant and then have the chemo. With this being my first treatment, there was no consultant just straight to treatment. 


This wasn't great as no one really explained what was happening, I rolled up my sleeve, exposed my PICC and in it went. There was the standard checking of DOB's, names etc but nothing else. 


And that was it. It pumped it's way in. No drama, no issues, none of the incessant beeping that had blighted my first stay in hospital when I kept rolling over while they were transfusing the blood. 


Lunch was available, although nothing to write home about. The pump counted down how long it had to go and then when it finished then nurse came and reset it to make sure that i got eveything. Then they flushed the line with saline & it was time to go home. 


The whole thing took about 3 hours in total. 


I got my bag of 'goodies' to take home and off we went. Although it wasn't quite that simple. The nurse came to let me know about my next appointment's. Yep, appointment's, Now I understood that generally there were 2 appointments one for the consultant appointment & blood tests and then one the next day for the chemo, but I had been assured that I would be able to have the blood test done locally & then see the consultant and have the Chemo all in one day. I must have explained this about three times to this nurse. She didn't seem to grasp it. I have 2 small children, a 60+ mile round trip (& a car that thinks petrol is a lovely thing to drink) I cannot be doing two trips to Guildford when I can have blood taken locally & then have it all done in one day as it only takes about 3-4 hours. As soon as my next appointment comes through I shall be on to them like a rash.


The thing I didn't enjoy was the atmosphere in the treatment 'ward' I suppose you would call it. It had a lot of chairs with IV trees and pumps next to them and people connected to various bags of chemicals. But that was it, there was no chatting, no swapping war stories.The only person who spoke to me delighted in telling me how lucky I was. I do feel lucky when I read other peoples blogs and posting on bowel cancer and cancer forums, but I didn't feel lucky then & actually I wanted to get a word in edgeways but I wasn't able.


And then we left. 


And the side effects kicked in. Walking down the corridor the wind rushing over my damp lips made them tingle. Well that wasn't too bad, I suppose, except that they kept tingling & probably would have been worse if we had had further to walk. 

The stop at Starbucks for Coffee and cake demonstrated another couple. Washing my hands after going to the loo the hot tap took a while to warm up and so my fingers went numb. Then a beautiful looking blueberry muffin had to be nibbled so as to prevent massive pains shooting through my mouth and jaw. Crying was out too.


Driving home the nausea kicked in too. Once we had picked up the kids and got home I examined by bag of 'pills'. God you need a degree to decipher what to do with them.


There was..

1. The box of chemo tablets - Take 4 in the morning and evening after food
2. An antisickess to be taken the evening following chemotherapy, but as late as possible (Tony had to wake me up to take this)
3. Another set of antisickness to be taken 3 times a day before meals
4. More antisickness to be taken 3 times a day after meals
5. Anti diarrhoea tablets to be taken as and when needed.
6. As well as the anti MRSA stuff I have to stick up my nose three times a day and
7. The anti MRSA wash I have to use everyday.

So, Tony went to buy tea and I started drugging up!!!

I felt sick & twitchy, and made the mistake of washing my hands properly under my hot tap & I lost them effectively. It took about 20 minutes for the feeling to come back. I ran a drink from the cold tap and lost the feeling in my throat momentarily which was scary. This is a whole new kettle of fish for me. I am not used to side effects kicking in this quick or being this severe. I leant against the dining room wall & my entire arm started tingling.

I drugged up, we bathed the kids and I had to go to bed because the twitching was so bad. It felt like I was about to get a migraine, another unpleasantness. 

The tingling & numbness has continued today. We went to Sainsburys and I nearly dropped the melon because it was too cold. Getting dressed was a problem as my jeans were too cold. They had only been in the wardrobe!!!

The interesting part was walking on the kitchen floor, my feet went numb and I needed socks urgently, again THANK YOU SOPHIE!!!

We are managing them now though. We bought bottles of sparkling water in Sainsburys and they do not cause the numbing of the throat and the sickness and twitching appear to have gone.

I do now feel fluy, but I had my flu jab today so what do you expect!!

P.... p .......p .....PICC up a line!

Well that was thoroughly unpleasant.

It is a very sterile process, involving sheets, orange arms, gowns etc.

There was local anesthetic, ultrasound, spasming veins, cutting, threading, measuring.

Then an x ray to check positioning.

And finally the drive home

Posted via Blogaway

A trip to Guildford

Wow, today was intense.....


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


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

explaining the rules

Watching for the sticks

I think that's mine mummy

Much cheating occured. Especially by Isaac. He liked to  drop his stick on  'steady', rather than the traditional 'GO'. Imogen on the other hand, has a fantastic throw and didn't really grasp the dropping of the stick as close to the bridge as possible. Instead she 'threw' it as far as she could!!

That's my stick mummy

I think the kids had more fun walking back to the car than they did playing. There were.....

PUDDLES

We love each other

and rocks to play and pose on.


























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


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


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


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


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


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


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


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


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


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


Anyway I have digressed massively. 


So Guildford. 


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


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


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


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


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


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

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

I left that appointment feeling so much more positive. I think in hindsight reading the Lance Armstrong book has highlighted some of the fears I had and still have about cancer and chemo, but it also prepared me for the fact that things could be a lot worse.

So my next steps....Waiting for

1. Gynae appointment
2. Once sorted call to book the line insertion (which is a 2 week wait)
3. Arrange Flu jab and dental checkup (I think this is in the diary)
4. Have chemo

And then I shall come back and blog, although I think I will probably blog before chemo starts because you are all travelling this journey with me whether you like it or not!!!!!