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 weakest link

Throughout all of todays activities the weakest link has been me and my crappy veins. 

After a lovely 6 hours of uninterrupted sleep, and then several more hours of dozing the failure of my veins to give up a drop of blood has resulted in me having to spend a second night in hospital.

After seeing my colorectal surgeon and his minions this morning, and maybe showing off a picture of baby Hope. He decided that he wanted me to have the blood transfusion that St Luke's had cancelled yesterday because the new HB level was worrying and we needed to stem the decline.

A blood transfusion should be a fairly simple straightforward procedure. This would be my 4th so I thought I knew what to expect. 

However you learn something new everyday and today's revelation was that before they transfuse the blood they have to do a crossmatch. This means that they need a sample of your blood to mix with the blood that they are going to transfuse and check it is not going to clot or react. Far bette for this to happen in a test tube, than in my body.

This meant that they needed one tiny little pink lidded vial of my blood. Could we get one, not before lunch. 

It reads like a bad joke, what do you get if you cross one secondary bowel cancer patient with crappy veins and low HB levels with 2 very experienced ward sisters in SAU? Frustration!!

I am now modelling several new bruises where butterflies (which are tiny needles) have been inserted into promising looking veins, the wiggled around a bit and no blood was forthcoming. I think there were 5 or 6 attempts this morning. I had more a patches than the Black Pearl!!

The last resort was to call an anaesthetist or Dr, but before that the sister had one last try, in the back of my hand there was a vein. This vein yielded enough blood to fill the vial and we rejoiced. I have never been so happy to see my blood.

This blood was o precious she walked it to the lab herself rather than rely on the normal systems. 

So blood taken, time to disconnect chemo. This also overjoyed me greatly as it meant that my blood transfusion could go through my PICC line, which means far less beeping when you move as you do not 'occlude' the pump so much.

Here we encounter another drama. Apparently it is fine for Tony to disconnect my cytotoxic chemotherapy pump in a hotel room in Cardiff and leave the sharps bucket knocking around the boot of my car for a week. But here, I have to be wheeled to the chemotherapy suite, where I am surrounded by curtains and the pump is disconnected all officially by an oncology nurse who is not used to this kind of pump as they don't deal with this type of chemo in East Surrey. Why I don't know, my life would be a lot easier if my chemo could be done in my local primary care trust, but that is a whole other story.

So back on the SAU, and time for the observations before the blood arrives. But that is rudely inteerupted by the arrival of my family. Perfect timing.

Here the nurses were superb. I needed to have my cannula removed as the blood was now going to be going into the PICC line, so the children went and hid behind the curtain while it was taken out. Then we needed to do my BP, O2, pulse and temperature. The sister was fab, she asked Isaac to read off the numbers from her machine and check that everything was ok. 

While we waited for the blood to arrive I enjoyed the freedom of not being plugged into anything, I cuddled and played  with my children and enjoyed the sense of normality they provide. 

The blood arrived and is decided it wouldn't hurt for the children to see what was going to happen. The sister let Imogen feel the bag of blood and how squishy it was and how it looks like ketchup!! Imogen asked how they were going to take mummy's old blood out and we explained that it is more like topping the car up with disease rather than taking away old blood and putting new blood in because I need my old blood too!!

More BP, O2, pulse and temperature checks with Isaac doing the reading and checking all the figures. We also checked Imogen's pulse and daddies pulse, but Isaac was not ready for that yet.

My first unit of blood finished just as the nurses hand over so the lovely sister was prepared for the night staff to start the second unit about the same time I would need my next dose of morphine. 

That didn't happen. Instead I am sitting on a new ward, with liquid paracetamol, considering making a complaint about one of the most uncaring members of the nursing profession I have come across. Someone who left me sobbing and screaming in pain on the floor and made no offers of help to me to move. & who told me that as I was complaining about the noise last night,I should have the decency to keep the noise down as I couldn't possibly be in that much pain. But that is a story for a later date. I need some time to reflect.

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.

Children and Cancer

So, how do you explain something as complicated and all encompassing as cancer to your children?

I've already faced this dilemma once. Isaac was 3 years and 1 month old when I had my first operation and Imogen was almost 17 months. We explained it to them that Mummy had had a baddy in her tummy and the Dr had to cut mummy open and take it out. We explained chemo in the same way. We didn't want mummy's baddy to come back, so the Dr was going to give mummy some special medicine that would make her feel poorly, but it would make sure the baddies didn't come back. My PICC line became my wiggley, because it kind of looks like a wiggley worm where it goes into my arm.

But now that the cancer is back and inoperable it is a far more sensitive and difficult subject to explain. 

When we sat down after their bath on October 15th 2013 to explain that mummys baddies had come back. Isaac immediately said

'Are they going to cut you open again and take them out?'

We were honest with him and told him 'No, mummy has more than one baddy and they can't take them out'

His face fell. You could see his 5 year old brain processing the fact that mummy was not going to be getting better so easily. So we explained that mummy would be able to have some more special medicine. But this time the special medicine would be working on the baddies to shrink them and make them shrivel up like the fruit that we sometimes forget to eat in the fruit bowl. This made sense to him and he now talks about how my baddies are going to shrivel up and explode (I don't correct him on the exploding bit, but I really don't want exploding tumours!!!)

Then there was the blood transfusion. Imogen loved the fact that I would be getting new blood so I didn't feel so dizzy and sleepy anymore. She went around telling everyone that mummy was getting new blood today!!

On Sunday though I got the cracker. 

Imogen had obviously been thinking about this a lot and while we were at Crawley Garden Centre, having cake and soft play she asked

'Mummy why do you get baddies and other people don't?'

Now for a 3 year 8month old that is quite deep.

So I racked my brains for a child friendly explanation of cancerous genetic mutations and came up with this explanation.

Mummy's body is like the instruction books for Isaac's lego. There are lots of instructions for how to do things. Mummy's body is missing a few pages and this means that her body doesn't know how to do everything and so mummy gets baddies. 

She processed this, and then said 'does the same thing happen to everyone when they get poorly' 

'Sometimes, but sometimes people get poorly because they don't wash their hands properly after they have a wee or they get a cut and some nasty things get in. But sometimes peoples instructions are missing pages and they get really sick'

I am so proud of how my children are coping with all that is thrown at them and how well they respond to our explanations and equally that they are not scared to ask questions. 

I would never hide the truth from my children and I hope you can see that you can be honest without scaring them.

A 6 month old newborn baby

2 weeks ago, an angel arrived in Crawley and proceeded do something no mother, grandmother, parent or carer should have to do. Force a 6 month old baby to do something which goes against all their natural instincts and is completely alien to everything they have known so far.

This is not a bottle bashing, breastfeeding praising post. This is about the pain and struggles that my family, including my mum have been through in the last 2 weeks due to the reappearance of my cancer.

We had bought the formula a few days earlier and tried half heartedly to get Hope to take a little bit from a bottle. Tony had tried using the avent bottles that I had from when I went back to work after having Isaac. She took 3 oz at one point, but that was it. We would offer her the bottle at bed/bath time but if she didn't take it, no biggie, I still had my boobs and she was still more than happy to latch on and feed as normal.

All this changed on Tuesday morning. As soon as cancer, then chemo, then the aggressiveness of the tumours were mentioned I knew that this was it. My fabulous breastfeeding journey was coming to an end. 

When I say fabulous, I mean it. I never intended to be an extended breast feeder. I just wanted to do what came naturally. For Isaac that meant he fed until I was 5 months pregnant with Imogen and he was 16 months old. For Imogen that meant feeding her until I was admitted to hospital in 2011, she was 17 months old. I fully intended doing the same with Hope. 

I love breastfeeding, I love it's intimacy, accessibility, and the ability to be able to offer comfort to my baby. It is no faff, no fuss and quick, convenient and easy. 

I have never judged people that chose to feed their baby infant formula. I recognise that every one has a choice and what works for me, might not to for you. 

When I knew I had to stop, I knew I needed 2 things. My mum and some Tommee tippee bottles from my sister in law. Mum arrived on Wednesday and we sat down a worked out a plan.

The plan had 2 goals, by the following Thursday Hope had to be comfortable and able to take formula from a bottle. Also I had to drop feeds gradually enough to prevent myself getting mastitis or engorged and suffering from any of the painful side effects of stopping breastfeeding as I found out the drugs you can take to stop milk production are incompatible with chemo!!

I won't lie, I spent a lot of time hiding upstairs while Hope screamed at my mum. I sobbed my heart out, repeatedly, I felt guilt, I felt regret, I felt suicidal at one point. But after a little bit of trial and error Mum found that Hope liked a size 2 teat and very warm milk. 

The next step was Hope taking a bottle from me. We accomplished that over the weekend. Then on Monday, when I had my nurse led clinic appointment I took bottles and managd to feed her in the waiting area at the hospital. 

My final step was leaving Hope. I did this on Wednesday when I had my PICC line put in. 

I was heartbroken, I was not Hope's sole carer anymore. Now anyone could look after her. Some people are more willing to give her bottles than others. 

So on Thursday morning, I gave Hope her last ever breastfeeding. I sobbed, I couldn't stop apologising to her for not giving her the same opportunity that Isaac and Imogen had had. 

Now I am in a whole new world. It is like having a 6 month old newborn. I am having to learn a whole new set of feeding cues and associations. I need to plan, I can't just leave the house. I need bottles, formula powder, boiling water. Hope spends a lot more time screaming now because I cannot anticipate when I might need to feed her. Her sleeping is all over the place and I don't know how much she needs. 

Over the weekend she was having 4 7oz bottles a day. Today she has had 3 4oz bottles, 2 6oz bottles and a 2oz bottle. I don't know how many times she will wake up tonight. 

Then there are the nappies, ok so we are weaning as well, but no more lovely smelling breastfed baby poo. Formula nappies are unpleasant and far more frequent than her one every 2/3 days. 

Finally the cost. This is really annoying me. I don't want to feed my baby formula, but added to all the associated increasd costs with cancer I now have to add an extra £10 a week to my food shop, because of cancer.

So cancer, screw you, I will beat you again because of what you have robbed me off.

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!!

Paranoid Android

Wow, this weeks feels like it has been so busy.


Monday I had a follow up with my consultant at East Surrey. I know the NHS is free, but I waited almost 75 minutes after my appointment time to go in. Luckily I didn't have the children with me, otherwise I think we would have gone stir crazy. 
I have to admit something now. Since November when I went back into hospital with the adhesion/blockage, I have been paranoid about what is going on inside me. And not just me, with the children as well. Someone on a well known parenting forum linked to this and I have been over analysing everything since. Particularly with them, I am so worried about them and especially the likelihood of them getting cancer in the future and it all being down to me and my crappy, faulty genes. It was good to see my surgeon and hear yet again how well I was looking and talk to him about the over analysis I am doing and the paranoia I feel about everytime something is a little different I worry about having to come back into hospital again. I never used to worry about going into hospital but having been in so often and having to go for chemotherapy has really made me, not scared about being readmitted, but annoyed more than anything that this cancer has taken over once again and I am not in control. 
He was very reassuring, and helped me realise that things are probably not going to be normal for a while and it is usual to be overanxious, especially given the fact that I had been readmitted. 
It has also forced me to reassess some of the things I do and more specifically my sedentary lifestyle. 
This Blog is written by a friend of mine, who I really admire for putting this on the internet and chronicling everything. It has inspired me to unearth the Wii Fit board and associated game and also start back with my yoga practice. Its also made me look at my diet and I realise that I need to set a better example to the children. After all how can I expect them to eat things that I don't. So I have started feeding them, and hence me, more fruit and veg. 
I have realised that I do actually enjoy the taste of fresh, seasonal produce and can make a real difference to my health if I continue with this. 
In other news, I am due to have chemotherapy number 7 on Wednesday, which means that after the obligatory 2 weeks of tablets I will have one left. That last one falls 2 days after Imogens 2nd Birthday. 


I can't quite believe how far I have come. When I think back to October and having my birthday, PICC line inserted and first chemotherapy session all in one week, I look at where I am now and know that this blasted disease has made me a stronger, determiend person who is assessing what they want from the next few years of their life. 


Watch this space!!!!

Drawing a (PICC) line under it

Sorry about that, I just need to let you all know that I have my arm back. So, on Wednesday I drove across to Guildford because I knew I would not be having any 'proxy oxy' as defined on many bowel cancer forums. On speaking to my oncologist it spears that i was given a higher dose/regieme than is normally used. I should have questioned this but didn't think about it at the time. I think I will in next time, if I remember!! Then he said those amazing words 'i think that your PICC can come out' This means that tomorrow morning I can have a shower and not wrap my arm in cling film. Although this is a useful skill I have acquired over the last 5 months I can't see it being something I will advertise on my cv! If you think it sounds easy I urge you to try and wrap your own bicep in cling film one evening and let me know how it goes. So the PICC is out, the skin is very dry and shares in palmers cocoa butter are going to go sky high as this is the only thing that tackles my really dry skin. I have also started thinking about the direction of this blog once the chemo has finished. I hope you will still stay with me because I think I may start boring you with some of my craftyness. There will be pictures, rants about difficult patterns and hopefully some finishing of long term UFO (unfinished objects) and an update on my WIP (work in progress). I shall tell you about what I have OTN or OTH (on the needles or on the hooks) and show you my wishlists of projects. My first UFO I really want to finish are the bobble cushions I started when Imogen was 6 weeks old. I can't find a link at the moment but will make sure i do before long.

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

After the flushing

Wow, what a difference a week makes.


This time last week I was suffering the side effects of the chemo, confused about the mis commuication between NHS professionals & generally feeling a bit down.


I picked up my prescription on Wednesday and cannot commend enough the staff in Boots in Maidenbower. The lady I dealt with there was amazing and really showed excellent customer service which makes a massive difference when you are going through what I am going through.


So to Thursday & 'the flushing', @craftyguider commented that it sounded like something the bullies would do at school.  Having been through it I can definitely  say it is not something that you would want to have done on a regular basis but I have definitely had worse medical procedures over the last 3 months!!!!


I was a bit worried because I had to take the kids to the appointment. I needn't have been. Liz, the IV nurse, was brilliant. 


She had to start off by taking my blood pressure, O2 SAT's & temperature and offered to let Isaac or Imogen put the O2 'thing' (technical term there :)) on my finger. They didn't want to, but it helps make the procedures less scary and medical. 


The actual flushing & change of dressing is a bit of a time consuming process. Everything has to be cleaned and sterilised multiple times. In order to flush the line through a little bit of blood has to be drawn into the line. Liz checked that this wasn't going to phase the kids and they were fine. They both had a look at where 'mummys wiggley' (its new name) goes into mummys arm and Isaac proudly declared 'Mummys special medicine goes in there so she doesn't have to go to hospital again'. 


The dressing was then replaced and appointments set for the next few weeks, including the district nurse coming out on 25th October to take Blood for the next chemo from my PICC line rather than having to have a needling. Then in future weeks Liz will come and do it rather than me going to have to go and sit in the hospital for ages.


Things are finally starting to come together. The pain in my neck and shoulder is lessening & Liz also reassured me that this is normal and I should only start to worry if when the line is flushed I hear a rushing in my ears.


So I have 3 1/2 more days of tablets to take and then a 'rest' week

More NHS stress

So, 2 phone calls this morning.

Pharmacy - can pick up prescription, big tick for them.

IV nurse - can you come to a clinic tomorrow to have your line flushed?

Ahhhhhh more stress

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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

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