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It is a little bit out of date as the NHS doesn't tend to have a WiFi connection in hospital and I can only post when I get home and posts take a while to write.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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Tuesday, 27 September 2011

& another thing

So I have talked a lot about the cancer and its effect on me and the family and the treatment I have received from the NHS, but not much about the other things this blog is supposed to be about....knitting

Since spending time in hospital I have definitely rediscovered my crafty mojo.

It reads 'Joanne, 22 September 1981'
I made this for my sisters 30th Birthday, based on an idea in Making magazine issue 9.

I have also had a lot of new babies to knit for.

Harriet Affinia Buck was born on 21st July 2011
Max was born to Amy & Matt on 31st August 2011
Baby Boden - Worsfold is due anytime soon & I believe Baby Stavrou - Kania is due at the start of 2011.

I love knitting baby things. The toys are so simple but so easy to make interesting with different stitch patterns and textures, or different stuffings to give interest. For 2 of the babies I have gone with this flower 

For baby Max we went for a few other little bits a pieces too. 

Baby clothes are so satisfying to knit. The Debbie Bliss Simply Baby book has some great quick & easy knits that are knitted in aran weight wool so they knit up nice and quick. I knitted Max the little shrug from the Debbie Bliss book, and at the same time thought that I would knock up another hooded cardigan for Imogen. See addicted to baby knitting.

The other two babies will also get some kind of toy and probably a cardigan as well. 

It used to be the remit of the 'Grandma' to knit for new babies. I want to change that perception. Knitting is so theraputic, rewarding & fulfilling. I love the comments when the kids or me are wearing something I have made for them.

Theres one more thing that having cancer has made me do, learn to crochet. 

I had managed to make a foundation chain before but hadn't been able to take it any further despite following numerous videos on you tube, and countless diagrams. At Beautiful days I took advantage of the craft tent, auntie Jo & sleeping children to sit and learn. It took about 20 minutes and less than a month later I made these

Crochet flowers - pattern courtesy of Mollie Makes, issue 3

 Not bad for a beginner I am sure you will agree. I have a veritable crochet garden & am suddenly thinking of all the ways I could use these in the future as I can knock them up in an hour or so!!

And one final photo. 

I knitted this the day before my operation, from a kit that came free with Simply Knittting magazine and it also helped to reinspire my crafty mojo.

Sunday, 25 September 2011

Whoops, I missed....

recording the start of spooks on BBC One :( 

I have been extra busy this week. & if not thats what it feels like.

Cancer & it subsequent treatment does not just effect you. It effects everyone.

This week I rang to make the appointment to get my PICC line inserted (4th October)

In with the confirmation letter for that was the date of my first treatment (5th October).

Alongside all of that I had arranged a flu jab for 6th October as well as the preschool cake sale.

So I have spent the week trying to arrange things for my children. 

To have the PICC line inserted I have to be in Guildford for 10am. This means that I need to leave home by 08.15am at the latest. This, in turn, means that Tony has to be home from work by 8am so I can check traffic, petrol & probably move car seats. He in turn has to drop Isaac at the childminders at 09.30 and then look after Imogen until I get home. 

On the Wednesday Isaac has preschool form 09.30 - 12.30, my appointment is at 11am & I know that that is just to see the consultant, that is not the chemo itself which takes at least 2 hours from what I have been given to understand. It also has to be prepared on site.

So Wednesday looks like this. 

Take Imogen to childminder, take Isaac to preschool, tell preschool that childminder is picking Isaac up. Drive to Guildford (again), see consultant, Hang around waiting for chemo. Have chemo, drive home, collect children collapse exhausted onto the sofa.

Before all of this though it is my birthday. Tony did have it booked off, but now with all of this I have to spend it without my husband. So we did what any normal family would do.

Spent this weekend on 3 different steam railways celebrating.

We started on Friday night on the Bluebell Railway fish and chip train. I love these as do the kids and so we had fish and chips on the steam train.

On Saturday we travelled slightly further East and went on the Spa Valley Railway from Groombridge to Tunbridge Wells, back to Eridge and finishing in Groombridge. I was ever so good. I love Tunbridge Wells' mix of shopping and so could spend hours browsing and spending, but I didn't :)

& today I forfeited the end of the Grand Prix to take the kids to Goffs Park to have a go on the Light Railway they have there.

And now I am doing admin. Not for me admittedly but Rainbow admin & NCT admin and blogging ;)

And now to bed!!

Sunday, 18 September 2011

I just found a cola bottle sweet in the washing machine

But unfortunately that's as funny as it gets today. I feel the need for honesty about how I am feeling before I loose the plot and collapse into a quivering wreck on the floor.

I am a wreck. I feel emotionally drained, tearful & on a rapid downhill rollercoaster I can't stop. 

So lets think about why I feel like this and what has bought it on?

1. Imogen. Or more specifically her sleeping. I have already talked about how, since we came back from Somerset at the end of August she has taken an age to settle and routinely woken in the night. I am at the end of my tether, her screaming breaks my heart but I know I need to let her learn how to settle herself. I just wish it wasn't so painful. More than that though I am fed up with everyone giving me an opinion and telling me that I just need to let her scream it out because by going in to her I am encouraging her.
Firstly I do not believe in letting her scream uncontrolled. I believe that it is harmful for the child and does not teach them anything. When Imogen is screaming I am sitting in the room providing reassuring words and keeping calm. I cannot do this in the middle of the night.
Secondly if I let her scream for to long she wakes Isaac up. Then I have 2 awake toddlers not one. Isaac can settle himself but if he is too awake he struggles on his own and cannot understand why he can't come into mummy's bed too. 
Thirdly although we have a third bedroom it is in no fit state to put a child in and let them scream it out. It needs at least a week of 'decluttering'. I fully intend to eBay, car boot, nearly new sale and recycle the things in there (and in the attic come to think of it) but at the moment: 
(a) I have more important things to do
(b) I have 2 children to look after and they need my attention, although I do do some things in the evenings.
Finally I like having the kids in bed with me. Although they wriggle and fidget there is nothing lovelier than when they snuggle in to me. I love being woken up by the children in bed with me rather than a screaming Imogen or the immortal toddler phrase 'Mummy, I need a wee wee'

2. The whole Cancer thing. This week has been a long one, awaiting decisions. There was the whole Wednesday 'pre chemo' appointment with the real information about how the treatment would work and the hope of the fertility referral. This was followed by the bombshell on Thursday from the fertility clinic, that because I have 2 children I would be ineligible. I do understand, honestly I do, that there have to be rules. But I also think that every case should be considered on its individual basis. 10 weeks ago I thought I had years left to expand my family; I thought I would be able to go through the pleasure and enjoyment you get from watching a new little person develop its own personality and traits; I was looking forward to breastfeeding another baby and watching the contented look on its face as it unlatched and stayed asleep. Yeah, after the screaming & things with Imogen it has crossed my mind that I may have another 'demon' child on my hands, but I still wanted another & now that choice may have been taken away from me. I know that it is not guaranteed that the chemo will make me infertile but I have to work on the worst case scenario and that is that there will be no more little Hayllars.

3. The final thing that is helping to fuel the exhaustion is the constant repetition of everything. When I come out of an appointment it goes like this. Tony and I talk about the appointment and the way forward. Then I call my parents and go through the whole process again. Then I maybe call my sister or brother or little sister and go through the whole thing again. 
I might then blog or tweet about it to get it out of my system. It does help talking about it and by putting it on the Internet I hope that I can help people who are going through the same thing or anything similar can get some support or comfort from the fact that it can hit anyone. 
What I find draining is explaining different aspects of the treatment, or the process or procedures again and again. 
Now, I am so overwhelmed by the support that I am getting from people. The offers of help, childcare, taking me to appointments etc are overwhelming. I also do not mind explaining things over and over again, but it is draining and I want to curl up under a blanket and sleep until it is all over. So please do not stop asking about how I am, what is going to happen, how am I feeling but bear in mind I may have explained something countless times and if I seem bored or disinterested then that is why. 

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!!!!!

Sunday, 11 September 2011

A week of communication

Monday morning, just as we are leaving to make the most of the nice weather the postman comes. 2 handwritten envelopes and one from the hospital.

We go off for play and cake, but are early so I open the letters in the car. What a shock, the letter from the hospital is a summary of my construction and has a hand written note explaining that fertility treatment 's not available locally, so they have referred me to a clinic in London. The other one is from the fertility clinic asking me to call and make an appointment and pay the 'initial' consultation fee of £180. I was shell shocked. Nothing had been mentioned about private treatment.

When I got home the clinic called, I was still in shock, tony was still asleep and I hadn't talked too anyone about it. I told them I couldn't make an appointment as I was expecting NHS treatment. They were lovely, they offer NHS treatment, and told me to call my consultant.

That was easier said than done!!

I called on Tuesday afternoon, and got her voicemail, she was out of the office. I left a message thinking someone else must check her messages. No one has returned the call yet.

Wednesday morning I had no children so got on the phone.

First call Macmillan, whose call I had missed earliest in The week. They were great, gave me lots me information about benefits I might be entitled too and the numbers to call.

Second call the support nurses at east surrey. No answer so I left a message.

After I'd got Isaac from preschool, I got back on the phone. I got the nurse at east surrey this time and she told me to call the secretary in guildford, and that she knew nothing about paying for fertility treatment.

Then job centre plus about benefits. It all seemed so simple when I was talking to Macmillan, unfortunately the person I spoke to didn't seem to listen very well. I must have told her it was cancer and I needed chemotherapy about 4 or 5 times. Eventually we got there and she agreed to send the relevant info out.

Then I called the secretary in guildford, she struggled with what I was trying to explain but we got there eventually and I am waiting for the returned phone call.

Finally the GP to arrange a medical certificate.

Thursday was about preschool and sleeping Imogen. No phone calls made or received.

On Friday the stuff came from both Macmillan and job centre plus. Also letters from guildford. Talk about short notice, pre chemotherapy appointment on Wednesday & appointment for the 'line' the following Monday.

I realised I hadn't heard from the secretary and tried to call her. She doesn't work Friday or Monday, so I'll have to wait til Tuesday. But I have been thinking that I don't want the line inserted until the fertility stuff has been done, so will make more phone calls on Monday!!

Once I got to looking at the benefits stuff I realised I need to call them too as they had some very random info in there too.

So looks like another week of phone calls

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Thursday, 1 September 2011

A nice normal day

Today, for the first time in a long time, I felt like me. 

A mum & not a cancer patient. 

It was Isaacs first parents morning at playschool. 

So of we went, en masse. Isaac walked, Imogen in the pushchair and mummy and daddy.

There was drama before we left. We have misplaced Isaacs birth certificate, although we had it less than 6 weeks ago to fill in forms for the childminder, it is now in 'a safe place'.

Then there was the melt down from Isaac because he wanted to watch Mr Tumble before we left.

But we managed to get out of the house all in one piece and 'chugged' away to playschool.

For all those of you without children, this is a common theme when going anywhere with a toddler. To encourage them to walk you will probably do anything. In our case that involves becoming Isaac's coaches, trucks or on rare occassions Annie & Clarabel!!

We got to playschool, Isaac got his name sticker, Daddy collected the paperwork while mummy took Imogen and Isaac into play.

That was that, both of them were in like a shot playing with cars, babies, puzzles, duplo (other building blocks are available), outside, colouring..... The playing was endless.

After only an hour and a half it was time to go. Isaacs parting comment

'I like playing there mummy, can I go everyday?'