All tubed up no place to go….

Well after the stress of yesterday i forgot to mention any of the nice points! I did manage to treat myself to a manicure (although I stupidly chose a shade of red that clashes with my hair…. idiot!!) and had a good catch up with Holly and Liz!!

It was very strange being back in london though. Back in my flat, but none of my stuff being here. Its like its my bedroom, but its not really.`Very strange!!

I treated myself to a quick run this morning around Battersea park and felt much better for it!! Being active makes me feel so much more alive. One of the things I’m dreading most about the treatment is losing all my fitness and becoming weak.

Not a great picture, but you get the idea!!

Then it was time to head off to hospital for another fun filled day seeing the consultant and getting my line inserted.

Things actually went fairly smoothly today! Cannula was put in early and quickly. And I made it through to see my consultant before heading off to get my line put in.

After chatting to my consultant it seems that the plan still hasn’t been finalised. I still haven’t got the funding for my transplant signed off, they haven’t decided what pre transplant chemo regime I will have AND they haven’t actually got any 10/10 donors for me………… So it is highly unlikely I will be admitted next week for chemo until at least a few of the above have been sorted out!!

Funding 

This should be sorted in the next week or so, and also I will look into private healthcare that I have with work to see if we can speed this process up

Chemo

So with regards to the chemo there are a few different options of pre transplant regimes. Now I am no doctor so don’t quote me on these as it was a long time ago, but in 2011 I was “offered” the options of 3 different reduced intensity regimes:

1. FCC – lowest intensity – usually used for Aplastic Anaemia patients
2. FBC (2 days of bulsulfan) – mid intensity – used for AA/MDS
3. FBC (4 days of busulfan) – higher intensity – used for AA/MDS where higher level of blasts of chromosome abnormailties.

In 2011 I had option 2 with no pre chemo. This time round they had previously suggested I would first have chemo for 10 days (DA), then have a 3/4 week rest period and then have a reduced intensity pre transplant regime likely of option 3. However, after chatting to the consultant today they are debating giving me a standard pre transplant regime which is usually used in patients with full blown leukaemia because of the speed that my MDS is starting to progress. This is not good news for me as it will give me much much worse side effects so I will feel like bollacks for during the transplant and likely my recovery time will be longer too…..

Donors

At the moment it seems there are 2 donors on the register for me, but they are only 9/10 matches (last time I had a 10/10 match). Now with a 9/10 match the chances of the graft failing is much higher and also the chances of GVHD are much higher. (GVHD – graft versus host disease – this is when the new donor cells start attacking my body. It can affect my skin, gut, liver, kidneys, mouth, eyes. Apparently GVHD can be good though as it means the donor cells are more likely to kill off my leukaemic cells, however again its more likely i will feel like shit, stay in hospital longer and it can be life threatening. They are going to continue looking for a 10/10 match but I think it might be unlikely at this stage 😦

Line insertion

So after all this news I finally went to get my line inserted. Check me out:

The procedure was actually very slick this time, and they didn’t struggle with all my scar tissue as i thought they might. I think the idea of the procedure and what they are doing is actually worse than the actual thing.

At kings they do it in an x-ray room with an ultrasound and x-ray to hand to look for the veins and position of the line then and there. For me the worse part is being made to lay flat (I get nasty reflux sometimes, especially when anxious) and having the surgical cover draped all over your face, it can be a little bit claustrophobic. You have the local anesthetic put in, which is nasty and stingy, but after that point all you can feel is a lot of pushing. It was all over within half an hour and i was set free.

My neck now feels a bit stiff, and I had to go get my dressing looked at as I continued to bleed for a while after, but generally I feel ok.

Spinathon – fundraising event – Pain for Paine!!

Tomorrow will be day 3 at the hospital for the dressing to be changed…… but most excitingly its the fundraising event at work!! https://www.justgiving.com/teams/pain4paine

I’m hoping to cycle the full 4 hours if my neck isn’t too sore and my body will let me!! Please sponsor us if you can spare a little dollar!!

In limbo

I really do feel like the hospital seems to think if you are sick then you have no life. Currently waiting on a phone call at 9am to say if I need to go in for my line. So I’ve got to be showered and ready to go in case they can squeeze me in early…. Equally I might not get an appointment at all today.

It’s OK…. It’s not like I might be tired and want a lie in….. Or its not like I have anything better I could be doing….

 

Hospital life!!

 

Waste of time and money!!

So today was a sadly a typical hospital day where everything goes to sh*t due to a lack of resource and communication.

last night and this morning: I showered with the lovely hibiscrub as requested by the Angio team. Apparently this helps to kill off any bugs living on my skin and reduces the risk of my line getting infected.

8am: I left the house to get the train to London from Peterborough

11am: I arrived at haemotology outpatients as requested to have my blood test and two pools of platelets prior to my Hickman line being inserted at 2pm.

12:30pm: I eventually get called through by my clinical nurse specialist (CNS) who takes my bloods and inserts a canular for the day unit staff as they are so busy. She then hands over to the nurses

1pm: I get a visit from my lovely friend Tannis!! Great to see you looking so well (minus some nasty water retention) xx

1:45pm: The nurse eventually puts up my platelets and says she will try and contact Angio to let them know I will be on route shortly

2:30pm: The nurse comes to tell me my appointment for the Hickman line insertion has been given to someone else and they have cancelled my appointment…….

3pm: I leave the hospital and go get my nails done to try and destress!!

Now what a bloody waste. I made a trip to London today purely to get my line put in, I didn’t need to be here till tomorrow/thursday and I could have got a cheaper train if so. I didn’t need a pool of platelets so this was a waste of NHS time and money – I will have to have another bag if I have the line inserted tomorrow. I lost a day I could have been doing lots of other things. Mentally I psyched myself up for nothing.  I’m bloody knackered. And imagine if I wasn’t as well as I am, or if I was elderly or if I didn’t have anywhere to stay in London?!?!?

What a shambles!!!

So now all plans are on hold for tomorrow to see if they can get me in for a cancelled appointment…… Not like I have a life outside of hospital or anything……

More preparations…..

On Saturday it was back to sorting out all my stuff that I have brought back from London (see picture below- this is my dad’s front room when I arrived home….). Separating items suitable for hospital and putting the rest in the loft (or getting my dad to!!), buying any hospital essentials and most importantly organising all my knitting wool and projects!!

I did find some time to enjoy the sunshine and being out of hospital with a few walks with my family and dogs and enjoying some nice food. Here is a piccie of me (in a terrible jumper i knitted!!) out walking with my brothers Sprocker pup Jasper and Marleigh my mums liemburg x german shepherd :

Hospital wise I was in every day for my dose of IV antibiotics, which only takes 30 minutes to infuse but in true hospital style there is always lots of waiting and thaffing making visits more like 1.5/2 hours in total! Last dose of antibiotics today so I’m looking forward to being able to taste food again over the next few days!

Tomorrow I am getting my hickman line inserted ready for  my treatment next week. A hickman line is a long thin tube inserted into the vein in your chest. It will be tunneled under my skin to stop it falling out, and assuming I don’t get any infections I will be able to keep it in for the duration of my treatment and when I am discharged from hospital. The hickman line will be used to administer all my IV’s as well as being used for blood tests. This reduces the number of stabbings I have to receive and also means I can have 2 different IV’s running at once.

More info: http://www.macmillan.org.uk/information-and-support/treating/chemotherapy/being-treated-with-chemotherapy/central-lines.html

I’m not too bothered about the process of getting the line put in. The previous few lines I have had inserted haven’t been particular painful process, just slightly unpleasant!! The worst part is the stiff neck you get that evening and the next day. However, for me getting the hickman line put in kind of signifys the start of my treatment. Makes it all feel a bit more real and me realise that I am actually ill again!

Getting ready and Super bugs!

So I’ve been spending the last week or so trying to sort my life out before hospital admission. I’ve written my to do list and have been slowing working through the list. The main things on the list were:

1. Move back home to Peterborough – I know that after my treatment London life will not treat me well, I won’t be able to work and having mummy and daddy around will make life a lot easier!
2. Unpack all my clobber I’ve bought back to Peterborough – 5 years worth of junk has got to make its way into my childhood bedroom that is still full of junk!!
3. See various friends
4. Go do some nice trips/meals/adventures!
5. Write the hospital list and pack the hospital bags
6. Achieve a headstand and crow pose without support! (becoming a yoga bunny)

The list had been going well…. I managed to fit in a few meals/drinks with London friends before moving back to Peterborough last week. I’ve cleared out my old room. I cut my hair off and dyed it some wacky colours.

I had an adventure to Edinburgh, travelling first class on the train for the first time, walking up Arthur’s seat and spending time with a lovely boy! I’ve pretty much finished my hospital list. But then I came back to Peterborough on Monday for the brakes to be put on my progress…..

After a week of running around doing lots of things, various hospital appointments and stressing about moving back to Peterborough/going into hospital I had burnt myself out. Monday I woke up with a hideous headache and just feeling ridiculously tired and achy. I felt so rotten I even had to ask my dad to take me to hospital for my routine blood test, where as normally I would drive or cycle there myself. I was very anaemic (hb 75) and was booked into have blood the next day, however this was not the cause of my all symptoms.

By midnight I had woken up clammy and shivery knowing I had a temperature….. 38.2.  As I am currently so neutropenic (neuts 0.03 at last check!) it was all systems go and my dad got me straight to A&E to be treated for neutropenic sepsis. Here we went through all the standard procedure…. blood tests, urine tests, blood cultures, chest x-ray and I finally made it to a ward at 6am!! Goes without saying that I pretty much slept the rest of the day!!

So I’ve spent the last few days being poked and prodded and being shoved full of IV antibiotics…… what horrid things. Now I never understand why people are so keen to go to the doctors and get antibiotics, they are nasty. I have a constant nasty taste in my mouth, no appetite, my wee smells, my poo smells, I’ve got diareaoh, bad wind, cramps, etc etc! But they seem to be doing the job as my temperature has remained stable, so yay for antibiotics!

Amazingly (anybody who has had blood cultures knows this is a rarity) they were able to grow a bug out of my blood. Some form of super bacteria that isn’t sensitive to hardly any bloody antibiotics!! Good news is that the have worked out which antibiotics it is sensitive to….. Bad news is that so far none of them can be given as an outpatient so I’m stuck here for a weeks worth of antibiotics!! Although at least i’m not feeling too rotten!

Hello world!

So I have decided to venture into the world of blogging…….

I will let you in on all the details of my journey through chemotherapy and bone marrow transplant. This comes with a warning though….. it won’t be for the faint hearted… I am not leaving out any details!! This is to help others that are going to go through the same process and if I glamourize the treatment it won’t make it any easier for them!!

At the moment I am making the most of my last few free days before admission, but will try and share some of my pre transplant adventures if I get the chance!!

Em x