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. 

Chemotherapy round 3

This morning was hard.

After a night of not much sleep due to teething and screaming from our beautiful Hope. I faced the rush of organising everything in 30 minutes less time than normal and have the added stress of arranging everything me and a 7 month old would need for at least 12 hours away from home.

What I hadn't factored into my preparation time was just how hard my last chemotherapy session had hit the children. I had Imogen in tears, because she was so worried about me going. 'Do you have to go mummy?' 'Will you come home this time mummy?' 'I'm scared for you mummy'

As my heart broke for the millionth time I again marvelled again at how articulate she was and how together she was. While at the same time remembering she is only 3.

Isaac showed his fear in a different way. He became very quiet and withdrawn and snuggled into grandma. He did come for a cuddle, bit whispered to me that he was scared too.

So, I found my little butterfly notebook someone gave me last time I was having chemo, which I keep in my handbag for short shopping lists (having chemo gives you terrible baby brain) and ŵrote them both a special little message that mummy loves them lots and will see them when she gets back. They both tucked them into their pockets and went off happier.

And so now I am sitting in the coffee shop, waiting for my name to be called to see my oncologist, discuss the side effects I am experiencing and the emergency admission to hospital. After that we will begin the long wait before going to the chemo suite for round three.

And then we are half way through!!

More about support

It's almost a month since my new cancer journey started. I have been thinking a lot about that timeline today and I need to put it down to demonstrate just how amazing the NHS is.

October 15th 2013 - Secondary Bowel Cancer (Peritoneal disease & Liver Mets) diagnosed
October 16th 2013 - St Luke's called to arrange my first three appointments
October 17th 2013 - 4 units of Blood Transfused in Comet Ward at Crawley Hospital
October 21st 2013 - Initial nurse led chemotherapy information appointment at St Luke's
October 23rd 2013 -PICC line in (St Luke's)
October 24th 2013 - first chemo & last breastfeed (St Luke's)
October 26th 2013 - 5FU Pump disconnected (Cardiff!!)
October 30th 2013 - first PICC line flush and redress (Crawley)
November 4th 2013 - Family flu jabs (GP)
November 5th 2013 - Pre Chemo bloods (GP)
November 6th 2013 - Chemo round 2 (St Luke's)
November 7th - November 10th 2013 - Emergency Admission with acute pain (East Surrey), including 2nd 5FU pump disconnection, and 2 unit blood transfusion.
November 11th 2013 - Imogen gets UTI (GP)
November 13th 2013 - Counselling for the children at St Catherine's Hospice, Crawley & PICC line flush & redress (Crawley).

Still to come before my next chemo appointment

November 14th 2013 - Isaac's first play date ;)
November 15th 2013 - Tony comes back from Liverpool!!
November 18th 2013 - washing machine to be repaired!!
November 19th 2013 - pre chemo bloods (GP)
November 20th 2013 - chemo number 3 THE HALF WAY POINT.

We would not have got this far without everyone who has offered their services to us. Whether it has been doing a load of washing, hosting a Halloween party and feeding the children, cooking meals for our freezer, coming round to make me do something creative, providing all the generous and unexpected items for our boxes and bags of love, picking up the children, dropping off the children and just being there and helping me feel like a normal member of society. 

You know what you have done, if we have not taken you up on your offer, do not be offended. Unfortunately cancer is not a sprint, it's not even a normal marathon, I am facing marathon upon marathon upon marathon. Several things have happened this week to remind me that this is not a project with a definite end date. This is an unknown quantity that is going to be hanging around for years and years. 

We are so grateful for all the support and help we cannot say thank you enough, but if I don't get back to you straight away or I ignore you for a couple of days, it's nothing personal, sometimes I just need space to process things alone. Keep pestering me and I will respond it just might take me a while. This has hit like a tonne of bricks, and I have not really had the time to just sit so please indulge me if & when I do.

But incase you didn't get it yet.....THANK YOU FROM ALL OF US

The pressure on the NHS

I want to reiterate something before I write this. My blog is not about individuals in the NHS, it is about the massive pressure the system is under to deliver top quality health care with an ever decreasing budget. Today I experienced some of these pressures first hand.

Firstly, there are things about the system that are excellent. After some delays I arrived at St Luke's more than an hour before my appointment time. This is mostly so I could find somewhere to park but also because I hate being late and cannot rely on the M23, M25 and A3 to provide a delay free route to Guildford at 8am. If this was anywhere else you would be seen at your allotted appointment time. At St Luke's the notes of patients who have arrived are being constantly collected so you are seen when you arrive, meaning if you are held up you are not chastised for missing your appointment but seen in turn, and if you arrive early you are called for your appointment while you are on the loo!!

After the normal discussions with the clinician about the management of side effects and the effectiveness of the oromorph for the pain, I was told that everything looked fine and I'd be able to have chemo later on. 

A quick time check and it looked like it was nearly time for Hope to have a feed so settling down for the 4 hour wait, we found a secluded corner, I purchased a cup of tea and we got on with waiting it out. 

After lunch in Costa, during which Hope helped herself to her first piece of orange, I was getting increasingly bored and Hope was getting increasingly tried, I popped her back in the pushchair and tired to go the long way round back to the chemo day unit. There is a little waiting area outside and I figured although there was just over an hour to go before my appointment I could wait there until my time. 

Hope promptly fell asleep in the pushchair and I as I was walking through to the waiting area, one of the lovely chemo nurses spotted me and asked where I was going. Oh no, she said don't bother, your room is free, come and wait there. See above and beyond again. 

This meant that I got a lovely hour of uninterrupted sleep before chemo was supposed to start. 

Around 2:15 the nurse came and told me that my chemo hadn't come up on the 2pm box (my appointment was at 2pm) but it would be on the 3pm so she would make a start on changing my PICC dressing and flushing the line, so that when it & my notes arrived we were cooking on gas and ready to go. 

3pm came and went, the flush had finished and the machine was beeping at me, but couldn't be disconnected as the chemo had not arrived. Another nurse came in and switched the bleeping off and went to find out what was happening. 25 minutes later another nurse came in and asked if I had had any blood taken when my PICC was flushed. 

Yes I had, why?
Because I needed to come back in tomorrow for a blood transfusion of 2 units as my HB was low.
Not possible, I cannot possibly arrange that kind of childcare with less than 24 hours notice, but I could do it on Friday. Would that be in Crawley? 
No, Guildford as there might be additional complications due to chemo that Crawley cannot handle.

So now, I know I have low HB again, but no chemo and another blood transfusion looming.

Finally, at 3.45, the 3pm box of chemo arrived and there were my beautiful freshly made pouches of irinotecan and folinic acid. 

This is where the problems in the system lie. The reason I have to go to Guildford for chemo is everything is made fresh for you. So the 'chemists who make chemo' (there is probably a better, more technical term for them than that, but I don't know what it is and quite frankly can't be arsed to google it. You do it, if you want to know) have to make in 4 hours my chemo, chemo for everyone else on the ward that day, probably in excess of 70-100 people. Plus all the 2 day chemo patients chemo and all the inpatient chemo's. 

The poor nurses, and you don't have a nurse each, have to clean and redress PICC lines, portacaths and Hickman lines, make sure lines are being flushed between drugs where appropriate and not when necessary, dole out anti sickness drugs ( I take 5 tablets before my Chemo), carry out the injections of other side effect management drugs ( I get an injection that is supposed to help with he loose bowels!!) and monitor all the patients to check they are all tolerating their chemotherapy. 

There are 10-15 people in a room at any one time, 5 rooms, and 2/3 staff nurses per room and probably 2/3 HCA's.

Quite frankly they do an amazing job under an immense amount of pressure and uncertainty. The fault lies in there not being enough of them and enough of the people in the background because there isn't enough money in the system.

Think about that the next time you hear people talking about cuts in healthcare budgets.

Chemo round one

I realise that this is a few days late and I actually had chemo last Thursday. 

But we will go back one more day to Wednesday when I left mum with all three children and headed to Guildford to have my PICC line put back in. While having the line in I was chatting with the nurse about how demoralising I had found chemotherapy before and I was worried this time because I would be bringing Hope and found it really uncomfortable to sit on the ward with the more mature people who were giving you their life stories, which I don't care about. I have enough going on in my life without hearing about how you have had chemotherapy for 3 or 4 different types of cancer, or about how your cancer keeps coming back quicker and quicker. I don't want to face up to the fact that in 30 years time I might still be going back and forward to St Luke's to have yet another round of chemo. I need to keep the faith that this will be the last time I have chemo.

Judith the PICC nurse, listened and when I came back from having the X-ray to check the line was in the right place she introduced me to Claire, who is a Macmillan liaison nurse who listened and completely understood where I was coming from and came up with loads of solutions. These solutions made Thursday ( and going forward Wednesdays) much more approachable and hopefully bearable.

The unit where I have chemo has a 'treatment' room which has a bed and private bathroom ( essential for someone with my unpredictable bowel habits). Last Thursday we arrived at the unit and were able to use this room for my treatment. 

This made things a lot easier and less stressful. Hope did not want to settle for a sleep and if I had been in the main room this would have ramped up my stress levels massively while she whinged and screamed at me. Instead I snuggled her into bed with me and rocked and cuddled her until she fell asleep.I can't offer her the ultimate comfort anymore as I am not breastfeeding (& that is a whole other post coming up soon). But I can provide a safe and secure environment where her needs are met to the best of my ability.

Back to the actual treatment. We started with a saline IV, then the irinotecan which took a couple of hours to infuse. Another lot of saline, then the folinic acid, and finally the pump of 5FU was connected.

If I hadn't had the pump, I wouldn't have known I had had chemo. I remember leaving the unit after my first dose of oxaliplatin and my face hurt, it hurt to breathe I would not have been able to drive. This time there was nothing.

Ok, not nothing, there was a little bit of nausea, but I know that the myriad of drugs can control that. 

So we went home and hatched our weekend plans. I would not have got through the last couple of weeks without my mum being able to stop everything to come and get Hope to take a bottle and drop children at school, pre school and just provide general support. But  our house is not big enough for her to live with us so we had to take her home. 

Friday after school we loaded the car and headed home to the West Country. I had a nap in the back of the car and was very grateful to the spaciousness of the car for this pleasure. 

We eventually arrived back in Somerset by 9.30 and it was a relief to everyone, we got the big 2 into bed and hoped Hope would settle down and go to sleep which she was not really happy with, so she had a little play with Grandpa. 

Bright and early Saturday morning the children were up, despite a late night so we headed to Cardiff for the real reason for our visit. Tony had 2 tickets for the Rugby league World Cup opening ceremony and first two matches. 

While Isaac and Tony went to the match,  Imogen, Hope and I took advantage of Cardiff's shopping and came back to meet them significantly poorer!!

Tony and Isaac were supposed to watch both matches, but the late nights had caught up with them and we headed back to our hotel for some much needed r&r. Not much chance of that with a 3 year old, 5 year old and 6 month old. But eventually everyone fell asleep and I spent most of the night battling, I think, an irinotecan side effect in the form of bowel issues. 

5.38am - the clocks had gone back. But the children did not agree and so they were up and we were counting down til 8am and we could go for breakfast and then head back to Somerset. 

The reason I have told you all this is to illustrate the massive differences between all the chemotherapy regimes. After oxaliplatin I would not and could not have contemplated this. It didn't end there. 

Back to Somerset to leave Isaac and Imogen with grandma and grandpa for a few days. 

And finally back to Crawley at 11pm on Sunday night.

There are other bits, but I'll surprise you with those later!!

Cancer insomnia kicks in and pain prevents sleep

So, 2 days after diagnosis, cancer insomnia sets in. Actually that's a lie really it's not so much cancer related insomnia as pain prevents sleep.

And the beauty of this blog and my iPad is that I can blog when I feel like it and be honest.

Remember that, everything you read on here is the raw truth, there is no sugar coating, I tell it like it is. 

At the moment it's a roller coaster. 

On Wednesday , on my way back from toddlers with Hope, on my way to pick up Imogen I got a phone call. I was driving I ignored it. When I checked my voicemail it was St Luke's calling to ask me to arrange treatment. I thought I would have a week or so to get used to the idea that I was going to go through chemo hell again.

Nope, when in called them back it turns out they had had a cancellation and could I start next week.

Now starting chemo is not quite as easy as rocking up at the hospital and getting some drugs. 

My treatment actually started yesterday with my lovely blood transfusion. I needed to increase my blood count so I can actually tolerate the chemo. So I spent yesterday on the 6 th floor of Crawley hospital in a lovely private room, chilling with Hope and watching the planes take off at Gatwick.

This weekend the focus will be on reducing breastfeeding and getting Hope to take most of her feeds from bottles. I am hoping to do one last feed on Thursday morning, which will break my heart, but I know it is for the best.

On Monday I have to go to St Luke's to e nurse led clinic where they give you all the information that you need about your particular chemotherapy regime and what the side effects may be. This is the chance to ask any questions and I have a lot this time. The basic Macmillan info I have been given about my new regime looks intense and there are some inconsistencies with what I have read and what I have been told so I need to iron these out.

 I get Tuesday off, although Hotpoint are coming to fix my dishwasher which appeared on watchdog a couple of weeks as one that might potentially catch fire!!

On Wednesday it it back to Guildford, this time without Hope to get my PICC line fitted. You know, that annoying line that goes into my arm, under my skin and means no more baths, swimming or generally getting my arm wet for a long a time. Although I have decided that this time I am going to invest in something called a limbo Cover so I don't have to keep wrapping my arm up in cling film for a shower.

 Then Thursday, Tony, Hope and I will be starting my new chemo adventure, although I won't be able to feed Hope while I am having chemo I need my family with me for my first cycle. 

I am putting my body through all this again to kill these tumours so I can watch my children grow up and become parents. Watching my mum playing with the children today has scared me.

Because of the nature of these new tumours I am facing the very real (at 2.30am) possibility that I might not get to see my children get married or have children. I may never be a grandparent. I am trying to stay so strong for them, but this thought keeps creeping into my head and lodging there.

I know I can beat this, I have done it once, what I don't know is if I have the strength to beat it over and over again. If it comes back how many times can I keep fighting. 

If anyone knows, answers on a comment please. No postcards, the stamps are too expensive!!

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!!

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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