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It is a little bit out of date as the NHS doesn't tend to have a WiFi connection in hospital and I can only post when I get home and posts take a while to write.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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Wednesday, 14 September 2011

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.....

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!!!!!