I'm back

It's been a long long while but I'm back and I have SO much to tell you all. There is just one problem in the last 8 weeks I've lost a few brain cells, become an enforced "druggy" and my body has finally realised it's not very wel! 

Because of this I can't continue my well ordered, well explained on time updates instead welcome to my waffley blog! I'm pretty sure it won't be in any order I think I will just write about what comes to mind at that minute! Have a list of things to cover and il get there eventually, I think! 

Prepare to have your news feed bombarded by me again

Xx

Facts and figures about stem cell donation

In the process of designing some leaflets and posters to encourage more people to join the stem cell register, I discovered some startling statistics I thought I would share! Unless you have had any personal connections with someone needing a stem cell transplant it is unlikely that you have heard about it or understand the process. 

Every 18 minutes In the UK someone is diagnosed with a blood cancer and every 45 minutes it takes a life. Not everyone that has blood Cancer will require a transplant and some can be treated and cured with chemotherapy or a combination if chemotherapy and radiotherapy. 

Only 30% of patients that need to have a donor transplant find a match within their family ( usually with a sibling ). The remaining 70% rely on the stem cell / bone marrow register. The register started in the 70's by Shirley Nolan who's son Anthony needed a donor, unfortunately non was found and he sadly died however Shirley continued to build and grow the register and the Anthony Nolan Trust was established. Anthony Nolan do an amazing job in the Uk recruiting and managing the UK register. Earlier this year the charity Delete Blood Cancer was established in the UK to help recruit more donors. No matter which way you join up you will all end up on the one central UK register. 

There are currently around 400,000 people on the UK stem cell / bone marrow register, this is great however it only represents less than 1% of the UK population?!? Half the people waiting for a transplant never find a donor in time. This needs to change! 

Right now in the Uk there is 1600 people waiting for a transplant and 37000 in the world. They just need 1 bag of stem cells that once donated could go in to save their lives? Unlike an organ, the donor won't miss them! 2-3 days after donating the donors body will have replenished its stores. 

Unlike with blood where you can have any blood that is the same blood group as you, matching for stem cells is more complicated. It is called human leukocyte antigen (HLA) typing. There are over 8500 different markers and we each have 10.  As you can imagine there are millions and millions of different combinations of these. In order to be a match patients with donors for stem cell donation they need to have 10 matching markers ( although transplants can be done if 9 markers match, they are just statistically not as successful ). 

I am now trained via delete blood cancer to sign people upto the register ( via a quick form and a cheek swab ). Posters and leaflets are at the printers and im ready to go! If you are between 17-55 you can apply at www.deletebloodcancer.org.uk or even better if you can get a group of people together eg work colleagues, friends, Dance groups, sports groups etc let me know and il will come down. 

90% of people on the register will never receive a call but if you do this is a picture of someone donating their stem cells, doesn't look too scary does it! 

My radiotherapy

I'm over half way! Today is number 9 of 15 so I'm nearly there! Up to now it's been a very easy painless quick treatment that almost feels like it can't be doing anything?! The most time consuming bit is having a daily appointment you have to go to. 

Once your there it's very quick and I've mastered the stripping off and getting in to the correct position very well! I lie with my arms above my head and the radiologists have to line me up to the exact same position each time. I can't be more than a few millimetres out. 

In order to do this I have 3 small tattoos. One at the bottom of my sternum and one on each side of my ribs, using these and some green light beams the radiographers get me in the exact position and I lie super still. That is the most time consuming bit as the actual treatment is a 15 second blast from underneath me and a 17 second blast from the too then I'm free to go! 

The side effects are accumulative and up to now I've had none, although I can feel some internal burning today. Side effects peak shortly after the radiotherapy course has finished then get better in the following week or two. 

My skin still seems ok but will soon get a little tender like it would If I was sun burnt. I will get that front and back. The majority of my pain is anticipated to be in my oesophagus so that will be raw and at the moment can be compared to reflux. I have paracetamol liquid which I've been advised to take half an hour before eating to help with pain. 

Usually they try and avoid important things in your body as not give any radiation to organs. As my heart has a little tumour inside sat by a valve my heart has to be radiated. This isn't ideal and you would always try to avoid it but if all the cancer isn't gone it will just grow back and all this will be for nothing. My lungs will also get radiated as we can't move them out of the way! This means I may have heart disease sooner than I would have and may have things like scaring to my lungs which would rule me out of the 2014 London marathon but I'm happy to take the long term side effects as the name suggests long is good! 

Radiotherapy isn't usually used as a curative stand alone treatment for non Hodgkin's lymphoma however in some cases of Hodgkins, radiotherapy has been shown to really reduce the size and occasionally achieve a full remission. ( this would need to followed up by a stem cell transplant ). 

My tumour hasn't acted like a normal ( primary mediastinal diffuse large B cell ) non Hodgkin's lymphoma and after biological testing has actually been show to be genetically more like a Hodgkin's lymphoma. Working on this assumption they are hoping I may see some good response from radiotherapy. 

Unfortunately there is no way to see if it is working till you have finished treatment and waited a period of 4 weeks for a PET scan! This is because the effects build up over time and are still working after actual treatment days are over. You need to give chance for the body to 'cool down'. 

Once we have the scan results we can make a plan of action!! The action plan is to get me into some form of remission whether that be complete or a good partial remission, ( pet scan negative or very close ). There is no way of knowing how my tumour will respond to radiotherapy as we haven't tied it before and unfortunately is all trial and error.

The suggested plan after radiotherapy is to try a chemotherapy drug that isn't licensed for patients with Non Hodgkin's Lymphoma. It has however been shown to be amazing in patients with Hodgkins Lymphoma showing a good remission or partial remission in upto 75% of patients. As my tumour is so biologically similar it is hoped it could have the same effect on me. The drug will only work if the tumour has cd30 receptors on the tumour, only 15% of non Hodgkin's tumours have these receptors, luckily including mine! 

Even if I was to achieve a full remission with radiotherapy/chemotherapy I would still need to have a stem cell transplant. That is the only thing that will potentially cure me long term.

So that the plan of action so far! Xx

What is radiotherapy

I am currently just over half way through my radiotherapy have just woken with the start of my side effects so thought it would be a good time to blog about it!

What is radiotherapy? There is a very complex and in depth answer to that question somewhere but I'm afraid I will have to provide the easy answer! 

Radiotherapy is used in cancer care with or without chemotherapy to kill cancer cells. 

Sometimes radiotherapy is used to 'back up' the work chemotherapy has done and to reduce the chances of that cancer returning. Sometimes it is used to reduce a patients  symptoms and other times it is used in the hope it can kill all or a lot of cancer cells, ( that's what I'm crossing my fingers and hoping for ). 

Radiotherapy works by using high energy radiation beams to a specific area which kills the cancer cells. It works by interrupting the cells at a DNA level which stops them dividing and they ultimately die. 

The Beams come from a machine called a linear accelerator, the patient lies still on the bed and the machine moves around them delivering the beams to the correct area. This takes a matter is seconds or occasionally minutes and is usually repeated as a course. I was prescribed a specific dose of radiation split into 15 days ( fractions ). 

There is no pain immediately or during the procedure but side effects do build up in the area treated, this is because as well as killing cancer cells some heathy cells surrounding the cancer as affected, this is usually temporary and go a couple of weeks after treatment. 

The side effects are only in the area that was treated, so for me I have radiotherapy to my mediastinum ( if you put your palm over your heart with fingers reaching up to collar bone that is where my radiation field is ). I will have burning of the skin both at the front and the back. This is because the radiation beams are delivered from the front and the back of me. I will also 'burn' from the inside too, In the area I've been treated it will mean my oesophagus be very raw and swallowing will be painful, currently it just feels like a bit of reflux? I've been assured it will get worse! I have liquid paracetamol  to sip! 

There can be long term side effects from radiotherapy, especially if treating a big area like mine with important things in like my heart and lungs.  This can't be avoided though and I won't be complaining if all I have to worry about is long term side effects! 

That's my mini radiotherapy lesson, hope it made a little sense!! 

Ps the pics are from google and not actually me!! Xx

My heads spinning

I've been waiting for my head to stop spinning from all the things that have happened and are still happening before writing a blog, so It at least had some chance of it making some sort of sense! It seems however my head is just going to go into a bigger spin so I thought I would just bite the bullet and write something. 

I was released from what felt like prison and death row on Friday and was determined to come home and have a normal relaxed weekend which I did, although it went far to quickly! 

On Monday I was woken by nurses trying to sort out referrals to different teams, filling out more forms to enable benefits to come through more quickly now im more poorly. This was followed by another trip to Christies for bloods, seeing a Dr ( to re talk about all the jolly things we need to face ) followed by another CT scan and then home.

Today was a non Christies day and was meant to be a quick trip to Wythenshawe for an echo to establish a normal heart for when I have my transplant. That however like me ended up not being simple! I had my scan done in silence and then was told I'd need to see the doctor?! It seems I have something ' floating' on the end of my central line.  They wanted to do bloods to check for an infection but i couldn't face that again as been checked for infection and had routine bloods for last 10 days non stop and all normal. 

They then said that there was a concern with my tricuspid valve  as it had some ' vegetation' on it? They wanted to rule out endocarditis ( an infection of the heart ). Because that's all I need right now! So I now need to be admitted on Thursday nil by mouth for heavy sedation and to have a trans oesophageal echo ( via a hose pipe in my wind pipe ). Thursday was meant to be my one day off from hospital and appointments for 5 weeks but it seems it wasn't meant to be! 

So now I am under investigation in 2 hospitals just to make sure I don't get too bored!

Spoke to my consultant today and she is very sweet and is my own little fan club fighting my corner so it's always nice to speak to her. 

I'm always surrounded out of the hospital setting, with amazing family and friends who really couldn't do enough for me. Friends have set up a fundraising page called mend Maddie's mummy (  http://gogetfunding.com/project/mend-maddie-s-mummy ). Other friends have been doing things to raise money and awareness and so many people have signed upto the Anthony Nolan trust to go on the list to be a stem cell / bone marrow donor. I really am blown away. 

There is probably an awful lot of things I'm missing out of my update but my brain is a bit far behind and a bit back to front so I'm sure it will come to me at some point soon, maybe! 

How life can change so quickly

Life can change so quickly, I've just gone to find tweezers in the bathroom cupboard and decided it needed a clear out. 

I binned all my random conditioners seen as I'm about to be bald again, I cleared out my 27 pregnancy tests and 15 ovulation tests that aren't going to be needed again. Thought it was a good time to chuck all my Ivf medication I still had left over. This time last year  we had spent 7 months having numerous attempts at fertility treatment and were about to embark on our last go of Ivf of the year. We were told we had 70 % of twins and spent our evening talking cute baby names and looking at twin cots ( anyone that knows me knows that's me all over,  naming babies I haven't even conceived! ). 

Who knew a year down the line I'd be here, coughing my guts up with a temp feeling pants 9 months Into a ( never ending ) nightmare. Not quite what I had planned! 

My 'achievement' of the day was ordering loads of books for Madeline, my mummy is poorly, mummy loves you no matter what, mummy says I'm the best medicine, I miss my mummy etc etc 

I want to be getting up at 6 am and working all day, I want to be tired because I've not stopped all day and been running round after Mads. Not because I've lay on the couch and wasted another day watching tv. I want to be able to go on our holiday to Spain that was booked for next week because Madeline doesn't remember ever being on a plane. 

I spend every day trying to think of things to do that wont go away, things of me that can go in a box and last forever. I'm currently baking mine and Madeline's hand prints in play dough  so they won't get squashed and be gone forever. 

I want to press rewind 

how to be a bone marrow donor

Now i am a self taught lymphoma and stem cell transplant professor ( for strangers reading this, i do not hold any qualifications and may be over estimating my knowledge a little).I wanted to spread some awareness of things that people don't know much about. Lymphoma being one of those and stem cell transplants being another.

So my aim is to demystify these things a little! i will start with finding donors for people waiting for allogenic stem cell transplants,
Bone Marrow Donors...... has that always sounded a tad terrifying? It did to me i have to admit but when i gave blood i was a brave girlie and went on the list. I secretly hoped that no one would ever ring me as all that; hospitals, general anaesthetics, bone drilling and marrow sucking didnt sound like my cup of tea. i was never called and now i've been chucked off the list as i am no longer desirable!

Now with a little knowledge and 11 years older i realise that being a donor isn't that scary after all! You just need to get on the list and then in all likelihood you
will never be called. If you are called you would be asked to have a further blood test to double check you are a match with the person waiting for a transplant. If you were and decided to go ahead your cells would be collected.

Bone marrow donors are the same as stem cell donors. The transplant i will have can be called  a bone marrow transplant or a stem cell transplant. Traditionally bone marrow was removed directly from donors under a general anesthetic and actual bone marrow was removed via a simple procedure and that was infused to the patient. With advances in technology very very few collections need to be done by collecting bone marrow. The preferred method is collecting stem cells from your bloodsteam this takes 4 hours and no anesthetics or long hospital stay. You will have a daily injection of G-CSF (granulocyte colony stimulating factor) for the 4-5 days leading upto the harvest. I have these each chemo cycle and they are a pre filled syringe with a tiny needle ( like insulin needle ) that you can give yourself in your tummy or a nurse will come round and do if you prefer. I've never had any side effects but the ones listed are mild flu symptoms or leg pain, this is mild and may last for a a couple of days. The G-CSF encourages your bone marrow to produce stem cells and encourages them to be released into the blood stream so they can be collected easily.

On the day of collection you can eat and drink normally and go into hospital. you have a needle in one arm and a needle or a cannula in your other and blood leaves one arm and goes through a machine where it is spun, the stem cells go into a bag and the rest of the blood gets returned to your other arm. At any one time there is only 160 mls of blood out of your body and in the machine so you should feel fine although some people feel a little light headed. you have to sit still for 4 hours but are sat in a chair and can read or talk to a friend. When your 4 hours is up your free to go.......... that is it. You may have just potentially saved someones life!

Your stem cells are frozen in liquid nitrogen and defrosted on the day of the transplant, they are given to the patient over 40 mins and that is that ( i will cover that in detail next time)

I hope that sounds a lot less scary than my perception!

Less than 30% of people find donors within their families so rely on strangers. There is a 25% chance that each sibling you have may be a match however other members of your family are not tested routinely as not likely to be a match.  Currently there are 400,000 people on the uk register and so far 8000 people have been matched and had transplants. If there are no donors found in the uk then an international search is done which looks at 12 million people on registers around the world. At any 1 time there are 120,000 people in the world waiting for transplants. ( thats the statistics out of the way!)

How do you get on the list ? In the UK the Anthony Nolan trust do an amazing job of recruiting and managing a proportion of the register. If you are between 16-30 and weigh more than 50kg you fill in a form online at www.anthonynolan.org they send you a pot you spit in it and post it back, and thats it your done you will stay on that register till your old! If there was a choice of donor younger people would always be chosen first so that is the age group the Anthony Nolan trust focus on.

Delete blood cancer are a new charity in the uk that are working alongside Anthony Nolan and can recruit people 17-55 onto the register. Again this is a simple process that involves a cheek swab. You can apply online and te swab is sent to your home to do and return www.deletebloodcancer.org.uk

The other way of getting on the the British Bone Marrow registry ( if you are between 18-50 ) is to go and donate blood ( at any UK blood donation site ) and when you do tell them you want to be put on the register and they will send an extra sample of blood and you will be placed on the register and stay there til your grey and old . www.nhsbt.nhs.uk/bonemarrow

Hope that helped to make it a little clearer?

Meeting with the Transplant consultant

We went for a meeting with the transplant consultant yesterday. We thought it was just an introduction and for him to explain what we already knew. It turns out it was a little more complicated than that.

The meeting didn't start off well, I really fancied a diet coke and Rick went for one and came back empty handed? The consultant then turned up with his can of diet coke and made me look at it for the whole meeting. I was tempted at one point to ask him if he was actually going to drink it as if not i gladly would of. Thought against it seen as it was our first meeting.

That was the simple bit of this update, the rest gets a bit heavy and a bit complicated so leave now by all means.

I had thought it was a given that i would be having an autologous stem cell transplant, ( a transplant using my own cells ). Although this is still complex and not particularly 'nice' it was manageable and recovery after was quick ish and i could have thought about work within 3 months. The Dr explained that with practically everyone with lymphoma this would be the plan, however he was concerned that my disease was just too aggressive and even with an autologous transplant the chances of the lymphoma coming back after were very high.

He suggested that we may need to consider an allogenic stem cell transplant, ( a transplant using a donors cells ). This is a much bigger more complex procedure and if i had it there would be a 30% chance i wouldn't survive the actual transplant. I would be on anti rejection medication for life ( carries its own risks ),  wouldn`t be fit for work for at least 12 months, and a high proportion of patients have to live with graft vs host disease for a long long time or forever and can never work. This is where my new immune system from my donor attacks my body constantly. The symptoms can be any thing as depends what its attacking but can be debilitating and render me " proper broken".

Why bother i hear you ask! By taking on someone elses immune system that would fight off ( to a degree) any little bits of lymphoma around = anti lymphoma effect. This means it increases the chance of being cured. So its trying to weigh up the risks vs the benefits.

Just when it wasnt sounding a very nice option he said that most people have a low intensity allogenic ( donor cells ) transplant as their bodies wouldnt tolerate any more, but as my lymphoma is as aggressive as it is, and i'm young and 'fit' ( not sure i'm feeling very fit!) he would like to potentially try a high intensity allogenic transplant.

The other issue with a allogenic (donor cells) transplant is that i would need to find a donor. This can sometimes be easy and sometimes be really difficult. It will depend how common my tissue type is. Its not like a blood test where you are an A- or O+.you get 5 markers from your dad and 5 from your mum so you have 10 different markers. So i need to find someone that has the same 10 as me. Siblings have a 25% chance of being a match but the rest of your family are less likely than the general public.

David is (actually at the time of writing this ), having his blood taken although we are realistic that there is a 75% chance he`s not going to be a match, but you never know! The test takes 2 weeks to come back. After that if im not a match with david they will do an international search and then we will see if its easy to find a match.

The Dr didnt know which route we will take yet as it is dependant on so many things. If we cant find a quick and easy donor ( uk based or europe with a quick collection time ) then i may just have my own cells. If i cant achieve a negative PET scan an autologous ( own cells ) wont be an option as it it almost guaranteed not to work. Either way im glad its his decision and not mine, his life is quite literally in his hands. He better look after it!

On the positive side he said what ever we do we are going to do  we will do quick. He wants the transplant as soon as we have PET scan results which means it may be end of October rather than December

I apologise if you have made it to the bottom as your brain may now be as jumbled as mine! 

A week of eating and sleeping

Chemotherapy was over a week ago now and I've basically just eaten lots and slept lots. No puking for me! I'm so glad. I thought I was lucky last time to avoid being sick but thought I had no chance this time! Kept waiting for delayed effects but they never came.

The tiredness is so overwhelming! I have never felt tiredness like it! But when all you need to do is rectify that is close your eyes it hasn't been too difficult! I had been high on steroids for so long that being dopey is actually quite nice! Been having couple of hour naps in the day but again it's not a hardship.

If I had to have come home and carry on, it would be an impossibility, but I'm so lucky to have super, capable and willing husband and family and friends which have taken over doing everything so I can just sleep off my drugs! 

Feeling a little less tired today however yesterday being at the hospital I was shattered!!! I couldn't keep my eyes open between my 15 minutely observations my body just crashed! I actually looked like a patient lay under a blanket snoozing while having drugs pumping into me, glad I managed the stereotypical look once but hoping i wont be making that habit.

I assume it was more the steroids than the chemo but I developed a food obsession. Or should I say I developed an obsession with my obsession of food, this last week I have been 2 hourly fed! Once I eat I am already dreaming of what's next. So as well of lots of sleeping I've done lots of eating too! I've weaned off my steroids now and took my last lot this morning and already feel less obsessed so hoping to go back to as normal as I can manage under the circumstances.

Not in hospital till Wednesday now. Going to meet with the stem cell transplant consultant and have bloods and stuff then I will organise appointments to have my stem cells collected ( il go Into that another time but is relatively easy and quick ) in the next few weeks. 

My productivity in my creations totally ground to a halt and I have just been pottering around fiddling with making Maddie random hats and things like you do! Today I'm back on it though and I will have some things to send out very soon! 

Salvage chemo ( O-Dhap ) number 1

Salvage chemo number one all done and dusted. I'm trying not to be too smug as I'm lay here at home feeling okish when I was potentially meant to be in hospital for another couple of days managing my symptoms and supporting my broken body? 

I went in on Tuesday at 9 am and had my trial drug which is a monoclonal antibody, in simple terms this drug doesn't kill the tumour it changes how my body works and gets my own body to target the tumour. This given other chemotherapy is meant to work great. It better!! It took 6 hours to go in as has to be quite slow as your body can fight it as are foreign anti bodies. I avoided any major reaction and just needed a half hour break as my throat went funny for a bit.

After that I was admitted to the ward and got a nice little bed in the corner by the window and then my chemo plus litres of fluids and kidney protecting infusions could start, these took 42 hours to all infuse so I was booked up to 3 pumps and took them everywhere I went! As you can imagine with all that fluids trips to the loo with my pumps and wires were very frequent!! 

I sat watching my chemo go in and then waiting to puke..... And waited and waited but it never happened? It can be a delayed reaction but I'm now 60 hours post starting it? ). Every time dinner came I chose the biggest option. No salads for me! Just in case it was the last thing that went down! So had pork roasts, crumble and ice cream, chicken curry, gammon and chips and it was all very yummy. 

I purposely didn't take any snacks in as assumed they wouldn't be wanted but after the first night I sent out for supplies and managed some chocolate hob jobs, haribo and diet coke! The staff were amazing and there was a 24 hour 'bar' menu of hot and cold food at all times and they were always offering you food and drink. It really was like a nice little hotel stay! ( now I'm starting to sound crazy! ) 

I had 12  hourly bloods to keep an eye on my kidney function and they were always normal. I even ended up with a cannula ( for a half hour infusion, then It came out ) and even that was painless and the nurse was very sweet and used a tiny one in the fat bit of my hand then whipped it out. 

I had a noisy neighbour ( snorer! Well it was way worse that a snore! ) she did have tonsil cancer and had the worst radiation burns to her neck that I couldn't complain! But the first night I may have slept 3 hours on and off as did the rest of the ward!! A very sweet night nurse brought me a pair of her industrial strength ear plugs from home the next night and I didn't hear a thing! 

I really can't fault any of the staff at Christies, they will all go above and beyond their job description to make sure your ok. If I got visitors they always got offered drinks, if I was awake in the night they brought me toast, when Madeline visited hey took her off for chocolate then let us have picnic in a quiet room etc. when you asked for something you didn't get a 'huff' and "il do it in a minute" you got an " of course no problem!".

I would like to think I'm that kind of nurse, ( well intact I'm not being big headed I know I am! ). But I'd say although there are lots of amazing nurses out there they do seem to be interspersed with the ones that are maybe not quite so happy at their job, that although very capable at their jobs forget to put the patient at the centre and talk to them! Ask how they are,communicate and smile, it really will make you a better nurse! 

Not sure what else to cover in my first chemo post! Didn't make as many ' things' as thought I would. A cat a monkey  and 2 minion hats? I was too busy talking!! Time flew while I was there!! 

So I'm back home and do feel a little poisoned, a little hung over but certainly not too bad, long may in continue. The cytarabine ( chemo ) is meant to blanket bomb all my cells so my blood cells will be affected this time and drop significantly. So I'm be much more susceptible  to infections and probably need blood and platelet transfusions and my own body won't quite be upto it. Also I am still on a steroid high but I am weaning off those over the next week so by next week il be curled up in bed like a field mouse and be on dry crackers!

Back in hospital at least weekly for blood tests, next week for my antibody treatment then in 17 days il go back and do cycle 2 ( the above again ) and then I will have my stem cells harvested and a ct scan to check Mr Tumour  has shrunk

Oooooo have to mention Mr Tumour ( as I'm sadly very proud of his size and have to share it! ).  I don't generally have any questions for my medical team as have my own fountain of knowledge in husband / super Rick form. But whenever I've had a scan I always want a look at my scan pictures. This time I saw my latest PET scan and although I knew my tumour was back and big as could feel it trying to poke out my shoulder blades as well as my chest was nice to have it confirmed! On the pet scan ( one with all the black bits ) it looks quite square but when they showed me the cross sectional images could see it was very deep and long. It fills the space where my left top lung lobe should be ( from heart up is just tumour ) and my lung has just given up and deflated out of the way. The pic attached shows it a bit, the black circle on left of pic is my normal ( right) lung filled with air and the thing that looks on fire on the right is where my left lung should be but it's filled with tumour. 

Right I promise I'm going now!! It's turned into a longer post than I anticipated but that won't surprise you as I struggle to shut tho once I start! 

 

High on steroids

I'm high on steroids, it's 5 am and I'm lay wide awake while the other 8 things in my house sleep soundly!

Been taking 10 tablets ( 50mg ) prednisalone for over 2 weeks now to stop the side effects of the disease eg tiredness and breathlessness. They really are he most amazing drugs I have ever had, EVER.

I have never done so much in such a short period of time! Every day lasts forever as up at 7 and can't go bed till 1 am Ish and even then lucky to sleep inbetween those hours. You have so much motivation and drive! Today alone I've made some baby toys ( sewn ), read half a book, visited work and friends, done food shop, out for lunch, DIY at a friends house, phone calls and paper work, popped to few shops for bits I need for my admission on Monday and took computer to be fixed. I wouldn't normally get all that done in a week! House is all freshly painted and actually tidy most of the time??

The down side to steroids is you can't 'come down'. You close your eyes to rest and it feels like you have just had 6 cups of coffee hit your blood stream. Also can make you moody ( although Rick wouldn't dare point that out! ). They make you feel like your blood sugars are low ALL the time so have to eat constantly. My face is trying to turn into a 'moon face' too, not the best look out there.

Despite the downside I do enjoy my little time on steroids and if I wasn't on them I would really struggle. Two weeks ago just getting up to answer the door left me out of breath and needing a nap!

Only on these till Sunday then I will double dose for 5 days to help me through chemo and then wean me off and my productivity levels may crash for a while! Must do a final coat of paint on the front door before then!

Well the sun is up and I don't think il be going back to sleep, up shortly for my PET scan. Mmmmmmmm but what to do now?

Bone marrow number 2

As the title suggests I had my second bone marrow yesterday. I wasn't sure if having previous experience made it better or worse!?! I'm still not quite sure!

I was having the procedure by a different team than last time and had decoded I may as well give sedation a go. Once there I was convinced not to bother and to just have gas and air.

It wasn't the pain I was worried out I was more concerned I would say 'ouch' or pull a stupid face! Silly I know because I know that doesn't matter but stupidly did to me! So my plan was get Into a position where I could cling onto the bars of the bed tuck head in and brace myself!

The first time I didn't expect the pain intensity down my leg and all i remember is gurning this stupid face at Rick! He assures me that people do much worse and scream and wriggle around the bed but I was determined not to do the ' face'! . Knowing what was coming I was able to put on my poker face and instead I I clung onto the bars and wiggled my fingers and eventually it was all over and really wasn't that bad. As with all things the thinking about it is so much worse and I had made sure I was billed before and hasn't even thought about it.

I loved my gas and air this time. Again first time I thought it would make me feel sick like it did in labour so I didn't use enough where as this time I well and truly used ( maybe over used! ) it and it was good! You just lie on the bed with the room spinning and feel like your floating, almost worth the procedure just for that!

If this one is negative I won't need another one with this treatment plan so fingers crossed!

Entertainment during my hospital stay

During my last lot of treatment I spent most of my time at home rather than hospital and was never sick. This time is going to be very different and I'm guaranteed to be feeling 'proper poorly' and being sick, tired and sorry for myself. So I'm making plans on what I can do to entertain myself.

I've got lots of books and my kindle il take although I'm not sure what Concentration I will have. I have decided to make the most of all the time I have and do something useful! I want to do crafty things so I've got myself a cross stitch for Madeline's zoom and I've decided I want to sew! I want to learn how to make little gifts and see some clothes for Madeline. Who knows I may be a natural and be clothing all the kids in Manchester!
So if you have any old fabric you aren't using or happen to pass any pretty bits and pieces I could make things from i would appreciate it lots! ( not that I'm being cheeky or anything; ok I am! But chocolate and grapes won't be appreciated as much! )

I started a diary for Madeline when she was a baby that I've never kept on top of as much I want to to I want to print out lots of pics and put them in and get upto date, that will pass hours and hours of even weeks as I'm so far behind!

Any other ideas to keep me busy would be greatly received! I don't want to be sat doing nothing till 2014 but I may have limited capabilities!

Where I'm upto!

I'm sure everyone is confused as to what's going in with me so thought I'd do an update post! I think I've just about got my head around things!!! Il try not to waffle but no promises.

My chemotherapy finished almost 3 months ago now ( how long ago does that sound when since then never quite got round to ever totally finishing treatment as my body has always thrown a spanner in the works!

After chemotherapy I was meant to have radiotherapy to my chest ( where the bulk of the tumour is ), this is a consolidation treatment and would just give the tissue an extra blast to make sure any abnormal cells were well and truly gone. Before radiotherapy I had a post chemo PET scan. ( the PET scan is the one that shows up the black blobs where cancer is ). The results came back and showed a great response everywhere apart from my left hip. Before I could complete my radiotherapy we needed to establish what this "thing" in my hip was.

The options for my hip were residual lymphoma, a totally separate bone cancer eg sarcoma or a benign tumour. I had to be investigated in Oswestry as its a specialist orthopaedic hospital and if I did have bone cancer would have my surgery there. I was referred for an "urgent" bone biopsy and was told this would take place within 10 days. 5 1/2 weeks later I had my bone biopsy. A report that contained 2 lines " not cancer, not lymphoma" was faxed over to Christies and I could start my radiotherapy. We are now 3 weeks past that and still no idea what hip thing is as haven't heard anything else but I have an appointment in Oswestry on Friday so maybe I will finally find out what it is!! That's the hip story over!

I turned up to my first radiotherapy session with my Fresh spray tan, pedicure and eye lashes and had a full tummy after celebrating actually starting the end stage of my treatment with some pub grub. I had already been scanned and tattooed ( 3 tiny black dots on my ribs to line up the machine ) at a previous appointment so I hopped on the table and was expecting a 3 min blast. They did a quick scan of my chest before they started. This showed that my chest was very different that in was 6 weeks before and there was a mass and my left top lung was collapsed. Treatment was stopped and the consultant was called. They explained radiotherapy was only a consolidation treatment and wasn't going to cure active disease and the delay in starting had allowed the few tiny cells in there to grow into a 9x7cm mass. ( in hind sight if my disease is so aggressive radiotherapy was only going to keep it at bag for a few weeks or so it was always going to come back ). Another " urgent" ct scan was booked and I did some more waiting.

I had a ct scan a week or so later to show the detail of disease ifr my neck to hips. My professor rang with results a couple of days later. He confirmed that I did have collapse of the left lung where the tumour was squashing it, I also had a lesion ( patchy bit of of disease) within both lungs ( still lymphoma! ).

So the plan of action! Well it's to start all over again with a harsher regime and then a stem cell transplant. I will have salvage platinum chemo as an inpatient 3 times in 9 weeks, within that time they will collect my own stem cells. I will then join the transplant list and when I have a bed I will receive conditioning chemo. This is chemotherapy that is very high dose and lots of different ones that will kill every cell in my body and my bone marrow production. After this I will need to be in isolation as will have no protection from infections. I will then have twice daily full body radiation for 3/4 days then when my body really is poisoned / battered / non functioning I will be given my stem cells back. Hopefully they will 'graft' into my bone marrow and start making my body work again! I will need to stay in isolation for a further 4-6 weeks after that and be getting regular blood and platelet transfusions and my body won't quite manage to do that for upto 4 months after my transplant.

They can't give me an exact date for my transplant as there may be delays and set backs and I may need more chemo than I think to get rid of my disease before transplant. At a guess I will prob be admitted at the end of November till the new year.

Gutted that that is my most exciting time of the year, is my 30th, Madeline's 4th bday and Xmas. I was so excited I booked me and Maddie a party in February! Maybe I was a little keen!

I fear I may have lost a few readers this far down, so well done if you made it this far!

Before I get started with my first chemotherapy I have a bone marrow tomorrow, then sign upto a research trial, then PET scan next week and then I'm ready to go! I'm on steroids now to keep me going till then as I was very breathless and tired without them.

My head was briefly all over the place and I was a proper grump when I realised I'm miss so much stuck in a room without my baby girl but I'm over it now. It's got to be done. It's not the path I would choose but it was chosen for me and I know I can do it no problem so head down and off we go..........

Ps the pic is of my hair now that's all coming through so nice but that will be falling out again in about 3 weeks :( this time I will also loose my eye lashes and eye lashes and be morphed into a shiny headed ET figure shuffling around but il be back to my normal self in 2014

My jolly holiday

I'm the sort of person that feels really hard done by if I don't get a "proper holiday" with a pool, beach and lots of sun. As we didn't go away last year I was desperate to get away this year.

After booking and cancelling holidays on multiple occasions this year I finally realised I wasn't leaving the country this year! The UK was very kind to me though and with July 2013 came sun sun and lots of sun! That eased the blow an awful lot! I could dig out my summer dresses and sniff my sun cream and felt all summery.

Even more surprisingly we are currently at the end of July and the sun is still shining!

After my radiotherapy was cancelled it meant I could join the family for a week in Anglesey. It's been a lovely break watching Madeline playing with her cousins Hettie and Clara. They had a whale of a time running round the gardens and beach and swimming in the sea. The doggies came and they behaved too and enjoying skipping around!

Time to go home today to get back to hospital appointments but I'm glad I got a lovely relaxing break in the sun, spending time with family and giving my body some nice food / drink and vitamin C before I'm locked ins. Room and poisoned!

Hip pain

Lay here at 5 am after my usual 430 am wake up call in the form of excruciating hip pain, and thought it would be a good time to write about it while the painkillers kick in!

I've had intermittent hip pain since Madeline was 1 ( 2011 ) and after seeing the GP and physio was diagnosed with trochanteric bursitis ( an inflammation of the muscle surrounding the hip ). As it was intermittent it wasn't too bad and although it was getting progressively worse, my high dose steroids I started on in December knocked the pain on the head immediately!

Throughout my chemotherapy regime dec-may I was pain free, it was such a novelty. No hip pain and my chronic lower back pain went away too. Once this stopped though the pain came back with increase intensity and wasn't much fun. It almost wasn't a shock to then find out on my post treatment PET scan that I had a tumour in my hip.

I was referred for an "emergency" bone biopsy with the specialists at Oswestry orthopaedic hospital and was assured it would be done within 10 days as I still needed to complete my radiotherapy treatment. 5.5 weeks later I was admitted to have this done ( better late than never as the saying goes).

Oswestry was so different to any other hospital I had been to, like a little cottage hospital where the staff are all very laid back! It even had it's own pet peacock! ). I did my own admission paperwork (as soon as they realised I was a nurse ), took my own bloods and didn't see the anaesthetists till I was lay on the table and he was pushing drugs down my line. Certainly didn't see anyone after and went home 2 hours after my GA.
Despite all that it was a nice little relaxed stay and I had some nutty neighbours to keep me entertained!

After 9 days of waiting for results wondering if I was the most unluckiest person to have 2 unrelated cancers at the same time, or some residual lymphoma in my hip. It was in fact neither and I still, ( 3 weeks down the line ) have no idea what it is! The phone call said " no cancer, no lymphoma but we aren't sure what it is" so I'm non the wiser! I have a 3x2cm "area of concern" in the sticky out bit ( well it would stick out if it didn't have such a covering / padding ), below my ball and socket joint.

I'm sure il find out one day! Due to go back for an appointment in a few weeks but until then I'm stuck with popping painkillers and being woken religiously at 430 every morning!

The wanderer returns!

As the title suggests, I'm back! After my influx of posts in January and my stray post in April I thought I'd come back and start blogging again.

Why I hear you ask?! Well I'm not really sure! It's a good outlet for a good moan, it ensures everyone is kept upto date with my weird and wonderful life, I'm going to have an awful lot of time on my hands and lastly I've had more than one person comment on how useful the blog was. It enabled them to be exposed to terminology and areas of life they otherwise wouldn't have had any knowledge of. Plus it's the only time il be able to educate my clever friends on family on anything.

So here goes I will be blogging lots in the coming weeks so everyone can try and make sense of what's going on, including me!

Waiting waiting and more waiting

It seems I've neglected my duties as "post writer" these last few weeks/months!

I have lost the "need" to write, I used to find it quite cathartic to write waffling blogs about all these weird and wonderful things that were happening to me. Now it's not weird and wonderful anymore, it all feels very normal?

I've fallen into the roll of cancer patient very well! I turn upto the hospital with a bag of magazines, food and my trusty iPhone and sit patiently and wait. Then wait, then wait some more. I'm sat in hospital now waiting, been here 5 hours already and they have managed to do bloods and establish I'm fit for chemo. Now I am waiting for my 2 Mls of chemo so I can go and get tucked up in bed and wait for my next appointment to roll round!

I'm not sure I have much more to report from last time I wrote. I have sailed through treatment quite nicely and am starting to feel a little 'hard core'. I've had some reflux and some stomach cramps and I'm tired ( but I think I've been tired for the last 3 years of my life working permanent nights with a little one and not that much sleep ).

I've now completed my 4th cycle of chemo and have 2 more to go. We are in April already so I only need to get to the end of next month then my chemo is all done and I move onto the joy that is radiotherapy.

I wasn't really worried about the radiotherapy while I had the chemo to face, but the thought of frying my heart lungs and oesophagus doesn't seem that pleasant anymore. Today ive been told of some of the side effects, difficulty swallowing, pain, difficulty breathing, blistered skin. Maybe it won't be as easy as I anticipated? Of maybe il breeze through it with a bottle of gaviscon and a pack of paracetamol.

Well I'm back off to wait a little longer for someone to administer my poison

Hair today gone tomorrow

Since the day I got diagnosed I always knew that the time would come when I would loose all my hair. I can't say this was one of the most distressing prospects that i would have to deal with. For some I can only imagine that this may be unimaginable but for me whether I was bald or not made no odds to me.

My only wish was that I keep my eye lashes and eye brows as i have no desire to look like ET!

I decided straight away that if you were to loose your hair 2-3 weeks after your first chemo then I would be shaving it off before then. I wanted to involve Madeline ( my 3 year old ) and not have her wake up one morning to a bald mummy.

I had organised 2 wigs at my first appointment at the hospital and had filled a drawer with head scarfs, hats and headbands and was all ready to go. It was almost a relief to get to the day I could shave it all off so this no longer "hung over me".

I ceremoniously snipped off a small pony tail and have kept that. Not for any sentimental value my hair gave me, but as a comparison as to what colour my old hair was when comparing to my new. I have heard lots I stories of people's hair who came back fluffy or a different colour so who knows what I will get!

After realising clippers killed when running them through long hair, we hacked off as much hair as we could with scissors and tried again. When we had finished Madeline insisted I go put on my yellow hair, ( blonde wig ) so we could be the same. I glanced in the mirror and it didn't look too bad!

I was relieved to find I didn't have an egg head or any weird and wonderful lumps or fat rolls. My head infact was perfectly round if not on he small side!

A couple of days later and on tugging my stubble bits did indeed fall out. This was some what exciting! After having a head of stubble for a few days that was like Velcro and stuck to everything i was looking forward to a smooth head! I'm now a week on and 70% of my stubble has now fallen out and I am waiting for the rest to follow, helped along with lots of towel rubs!

Loosing my hair hasn't made me feel any different. I feel sorry for rick and Maddie having I look at bald old me as I rarely have to and it sometimes surprises me when I do indeed catch a glance of myself in the mirror. I have to remember to keep a hat in easy reach incase someone knocks at the door. Not for my benefit but I appreciate it is awkward to be greeted unexpectedly by a bald woman in a onsie.

Side effects from chemo cycle 1

I have just checked the calendar to see how many weeks it has been since chemo and its......2, it feels like at least 5!?! 15 days is that really it! Looks like this may be a long few months! Roll on summer I say!

Saying that 15 days after chemo and all my side effect symptoms have now gone. so that's good. I get a normal few days before we start again. I only hope the next cycle goes as smoothly as this one.

I was expecting to be chucking up for a good week, lying in bed with Rick mopping my brow while feeling desperately sorry for myself. I did the lying in bed thing, but bar one or two painful moments it was very bearable.

I in fact got no nausea which was nice as I'm not sick often and I'm sure that's because my body knows I don't really like it! I took my anti sickness medication 'just incase' for the first 6 days then forgot after that and by the time I remembered I figured I didn't need it!

I have definitely felt tired, so much so I have even enjoyed a few siestas which I haven't done since before I had Madeline when I could quite easily nod off on the couch in an afternoon. Enforced naps aren't always as nice as naps when you feel 100% well but some days it was just nice to pass some time. The days have seemed very long when they don't seem to have much purpose. A couple of months ago I could only dream of having this much time on my hands but now I have I have lost all inclination to do all the jobs I had lined up. They are all still waiting!

On day 10 I thought I was in full blown labour! My stomach had swelled up and was really tense even putting my hand gently on it was really painful. Later that day I started getting really bad 'contractions' which had me doubled over in pain they got worse and worse over night and the pain made me vomit and sweat.

By the morning I decided to call the gp out ( as typically it was a Saturday). I was really hoping that they weren't going to say I just needed a big trump and it would be sorted! The GP came and she was really lovely, she said I had a bad case of bowel colic and made me feel better by saying they only thing on a par in regards to pain was labour, gall stones and renal colic. So I went from being miserable in pain and feeling very mard to being equally in pain but smug and slightly proud that I was actually a big brave girl. She prescribed buscopan ( an anti spasmodic ) which she promised would help within 12 hours and did. The contractions went away but for about 5 days I was left with a tender raw feeling abdomen. Day 15 this has just passed and I'm enjoying feeling normal again! Feels like it went on for ages!

All the fast growing cells in my body, the cancer cells but also some of my normal cells are killed off.'The place this normally affects is from your mouth all the way down, through and 'out'. This makes everything In between very raw. I had a sore mouth with a few ulcers and funny scar like lines.

This coincided with my neutropenia ( where my white blood cell count was knocked down very low, specifically my neutrophils ). I guess this was a side effect too and during these 4 days or so I was extra tired but it was painless enough. I just had to avoid any infections in this time as my body couldn't fight them and I'd be hospitalised :(

My only other side effect is that my scar on my chest I had ( from my biopsy back in December ) isn't healing. It was looking so good but since chemo it's all broken down and I've pulled random big bits of thick internal stitches out of the holes! I thought it was just a hair so grabbed and pulled and this thick acrylic/ wire like thing came out! Then about 6 hours later another one worked its way out of the hole. The day after the other end broke down and a bit of stitch came out that end too! luckily I stopped unravelling and my holes closed up. When I checked with the Dr at the hospital he told me off for tugging my internal stitches out and picking my scabs ( I couldn't help it! I had waited a whole month! ). He also said that unfortunately while I'm on chemo my scar won't heal and may get worse and worse. The added problem that I have is that area is then going to receive at least 3 weeks of radiation ( frying ) which will make it even worse or in the doctors words: you will be left with a big bit of 'funny skin'. I can choose at the end to have it all cut out and start again and hopefully the next scar will heal nicely?

Don't suppose I should be moaning about a scar, it's just a shame it is slap bang in the middle of my chest ( to left of my sternum over top of heart ) so 80% of my tops and 100% of my dresses are out and I will need to invest in some granny turtle necks! Another quick moan tho! It wasn't even from surgery to remove the blasted thing it was only a biopsy but they needed to open my up spread my ribs dig in my chest so scar is quite sizeable :(

Ok moan over! Roll on the next cycle if its as 'easy' as that!

Steroids, my miracle drug!

Who would have thought I would be raving about drugs! Rick has to force paracetamol down me when I'm in pain as I much prefer just taking myself off for a sleep! Unfortunately the sleep tactic had stopped working after Christmas and I had found myself not really in pain but breathless when got out of bed or tried to maintain a conversation for more than a couple of minutes, ( hard to believe I know!! ).

My heart was being squashed to its limit giving me the weirdest sensations. It beat so irregularly it felt like it was stopping every so often then bouncing round my chest the other time! If it was your foot or toe that was hurting then its easier to ignore but once my heart set off being funny it felt like I was in the middle of running a marathon. No matter how much I deep breathed or though of relaxing thoughts it made no difference. This used to happen for hours at a time where all I could do was lie down looking very relaxed but inside I was doing lots of strenuous activity!!

Many a time rick urged me to go to A&E as he was un nerved being alone with me! Feeling or listening to my pulse was also rather scary as there was many missing beats and it used to bounce so much you could see it against my chest. I found it more impressive but I know if it was happening to Rick I would have been having kittens!!

I was also having night fevers, these are classic B cell lymphoma symptoms but running a temperature of 39 each night not only made me sweaty, but also very restless and disturbed my sleep.

Because my PET scan was still weeks off I knew I could not carry on so the hospital started me on 50mg ( 10 tablets ) of prednisalone ( a steroid ). I took them one morning and by tea time I was a different person!! I was truly amazed.

As I continued on the steroids for the 2 weeks prior to my PET scan I felt better and better ( surreal really when inside getting worse ) and then got the steroid munchies! They were great! Not only did I fancy eating everything I could actually fit it all in too.

Another interesting fact about steroids in lymphoma is they act like suicide bombers and the steroids make the and normal lymphocytes kill themselves so can actually (to a point) reduce tumour size and manage symptoms.

Once I started my chemo I doubled my steroids and took 100mg ( 20 tablets a day ) and I'm currently weaning over the next few days till I'm on none! I'm not allowed to just stop as apparently il have a big drug withdrawal and end up in bed with shakes and sweats, I'm down to 6 tablets tomorrow and hoping I wean off without my body missing them too much!

I have really loved these things! I get 5 days of 100mg ( 20 tablets ) at each chemo cycle so il still have little tasters. Maybe now I will loose the 3kg I've gained just from being on steroids and the food shopping bill will also go down accordingly.

The long awaited PET scan

The long awaited PET scan! Since being seen on the 27th dec by the lymphoma team the plan had been to have a CT scan, PET scan and bone marrow then I could start a treatment plan.

Unfortunately after the world moving beneath me at the previous hospital, meaning I didn't have to wait for anything, I was to have no VIP perks here! I got my date through for the 15th Jan which sounded so far off. Especially as my symptoms were now coming thick and fast and my heart was really objecting to being squashed!

The problem with a PET scan is that there isn't many scanners around and accordingly to my VKR ( very knowledgeable radiographer ) they get 6000 people a year needed one at this centre. Without this scan we would not have a baseline and being able to see when I'm in remission would be very difficult.

Luckily I got a cancelation on the 11th and was able to be seen a few days early meaning I could crack on with treatment. I had gone from stalling wanting treatment, just to feel normal for a few more days to desperately wanting to start at one end of the process so I could start counting days until at the other end.

Knowing i needed cannulating prior to the scan we rang our lymphoma nurse and asked if it was at all possible to come cannulated ( ricks a nurse! ), if he was to do it I don't worry as he never misses! The answer phone message we got back was that although this was not possible a very kind and thoughtful research nurse had arranged for a complimentary therapist to give me a massage during the cannulation?! What!!!! How embarrassing and how to make an issue out of it for the poor person having to cannulate me!

Luckily for me I turned up a little early and was ushered straight through and decided to omit the information about my forthcoming massage! My front sheet did say "NEEDLE PHOBIC BRINGING ASSISTANCE" I denied all knowledge of this saying I may just have been a little misunderstood!!

The radiographer looked so confident with the cannula and was but we still managed a miss, was a gentle miss though. Then a lovely passing lady said "lets just use a butterfly in your hand" yippee!!! I love those things!! So with I little butterfly in I was injected with my radioactive sugar tracer and then left to sit in a dark quiet room for 50 mins.

Apparently talking to a relative or reading in this time alters the images but listening to music was ok? I'd typically brought duff ear phones so ended up watching the clock instead hoping that was within the 'rules'.

I was then led through to the scanner and strapped on. It looked very much like a CT with a deeper donut. I initially felt comfortable and relaxed into my 45 min scan. The problem was that when someone tells you you can't move you start getting really uncomfortable! Lying flat on a hard plate thing did nothing for my back and lying flat with my chest tumour altered all the blood flow in my neck so that felt like I was being choked! To then be fed through a donut machine in silence for 45 minutes was a little testing! I can't imagine how people manage if have issues with space? I would have appreciated some human contact in the time, even just someone telling me I was half way through over a speaker would have helped as I had no concept of time at this point!

PET ( positron emitting tomography ) uses the sugar they have injected me with to see where the cancer cells are. Because the cancer cells are so high energy the sugar tracer sticks to them and they glow red on the image ( or look black on a still image ) it's all very clever!

Afterwards I was given some lucozade and a cheese butty as I had had to come starved for the scan so the cancer was 'hungry' for the sugar. I was advices not to go within 2meters of young children for the day, difficult when I had one at home!!

One of the doctors rang me later that day to say they had seen the PET scan and I have more disease than initially they had seen on CT ( this is to be expected as its so aggressive will have grown lots in the wait for a scan and also PET scans more detailed ). Unlike solid tumours haematology cancer grading isn't as scary sounding. A grade 4 solid tumour eg lung would mean you have a metastasis somewhere and the disease would be very advanced. In blood cancer grade 4 means that its traveled round in your blood and more areas are affected but these aren't true metastasis. It made no difference to my treatment plan or drug choice. So there were the results and I got to see my impressive pictures. I could now physically see my grade 4 primary mediastinal diffuse large B cell non Hodgkin's lymphoma and very impressive it was too!


Pics 1 a scanner ( not mine don't worry I didn't go in taking pictures! )

Pic 2/3 my scan results. My brain and bladder should be black the other bits are all lymphoma

Another day in paradise!

Day 2 and I'm still an inpatient, and still on my fluids while they flush out the initial tumour break down ( to avoid tumourlysis ).

It's been another nice day and I haven't felt too roughy at all? Again the only thing I can compare it too is waking up after drinking a lot the night before and having a dodgy tummy and feeling a bit tired? I assume that's a hangover feeling anyway, as I'm lucky enough to not get many of them!

I woke up, took my 20 steroid tablets, 5 others and followed that down with some rice crispies and the chewiest piece of toast I've ever had! Note to self...... Skip the toast tomorrow!

With a full tummy and a pair of dozey eyes I settled down with day time tv and a little complementary therapist appeared for me! She has been trying to track me down since the research nurse had contacted her to explain my irrational fear of bloods from my ACF ( elbow crease ) and cannulas! I wish if kept my mouth shut!!

I then lay in my 4 bed bay full of visitors and patients while the therapist ran her hands over my aura to relax my veins and channel my energy?!?!? Very sweet and nice thought but I had to try hard not to giggle! After this I was lay down with my eyes shut while she did some relaxation and breathing techniques with me followed by a foot massage! Was very nice but felt a bit of a Plonker in front of a room full of people. Especially when my 'fear' just makes me a moody cow and Rick gets his ears chewed off the night/morning before. At the time of stabbing I'm a big brave girl!

Next I tucked into my lunch of gammon and wedges, not exactly the light lunch I thought I would be forcing down but while my steroid induced body wanted it i had to oblige! Was yummy and had ice cream to follow!

Finally for some company. Rick came and we had a walk to get a Starbucks ( on site ) and bumped into Bill Roach ( Ken Barlow from Corrie ). Luckily for rick I didn't demand a pic and embarrass him to much!! We had an hour sat in the conservatory and tiredness hit me like a brick, could have happily curled up and slept there for a bit but we came back so I could beat Rick at card games instead! We watched the sun set from my bed and then my time was up. In out busy lives that's classed as a full on proper date! Bonus!!

Tea time; sweet and sour chicken and trifle followed by a few hours slob on the bed with entertainment from mum and David . I walked them out and jumped straight back into bed for supper and now it's bed time!

It's before 11 and lights are off! So I'm off to bed. Wow just realised I've got the end of my days blog and not mentioned blood needles or cannulas, ( directly! ). My original cannula is still going strong even though it throbs at times! The phlebotomist went in my ACF which I had covered with Emla that was fine, and a nice nurse kindly used a butterfly in my hand tonight. I may be getting brave. Ok so I'm not getting brave but I can see an end...... Tomorrow afternoon and no one will stab me for 10 days how amazing is that!! Its the small things that make the difference

Nighty night xxxx

Pic is sunset from my bed today

Day one of chemo all done

I'm sat awaiting my MRSA admission swabs at 23:00 ( despite being in hospital 14 hours?! ) then the lights may finally go out and I may actually sleep!

Today's been great, as well as I could have hoped for I guess!

I'm lay in bed not feeling too bad at all, I wonder if its the calm before the storm or whether I am actually superwoman?

After being admitted onto the haematology day unit I was allocated an actual bed ( apparently that's very VIP), right in the middle of the unit! My nurse today was super sweet and obviously good at her job and finally someone that's great at cannulating too! First time in, very gentle and all ready to go! Even needed some bloods and she was kind enough to do gently in my hand, perfect!

I'm not sure what I expected the chemo to look like but it was just pre drawn up in a syringe and slowly pushed in? My first part of the cocktail was bright red and the nurse informed me this was my super toxic one, doxyrubisin. The one that will make my hair fall out and give me the most side effects, on the other hand though its the bad boy that will do its magic in me too!

Before my chemo I has some piriton ( antihistamine ) so I then spent the day feeling I had had vodka cocktails for breakfast. So while happily watching the world go by I got all 4 of my chemo drugs in and felt ok.

The last of my poisons was rituximab ( prob spelt totally wrong ) which is a monoclonal antibody which will generate an immune response so my body can kill off the cancer. Because this can cause a big reaction it starts as a very slow infusion gathering speed till 500 mls has all gone! After about an hour I felt like someone had stuck a big splinter in my throat and my voice went all croaky so I had it turned off for 20 mins. After this it all went smoothly and after about 3 hours I was all done!

I think that I felt a bit weird by the end but couldn't decide!? So just forgot about trying to work it out!

I was promptly delivered to the ward and hastily tucked into my yummy tea of pasta bake and vegetables and manchester tart. Did feel slightly guilty as my 3 neighbours were trying really hard to force down half a cup of soup!

Rick stayed with me all day and then mum, David ( brother ) and Katy came to keep me company till I chucked them out to watch Coronation Street! Sat and munched some mint matchmakers and that's about it!!

I think I might feel a little dodgy now but maybe I just need to go sleep? My neck feels very full and i am sure it's as thick as Frankenstein's?

Well it's 23:15 now and the lights gone out! Finally. Still not had swabs but may just go sleep?

Nighty night!

Pics on way to hospital / waiting for lights out end of the day
First bit of Cocktail going in

A little bit about me

When I started this blog, I though a few of my Facebook friends and family would be reading it, but after logging in yesterday and noticing that 2219 people had indeed read ( or briefly glanced at ) it. How bizarre?! I was thinking id get about 30?!

So this was a little post about me minus and cancer stuff for those people reading that haven't got a clue who I am!

I was born and have lived all my life in Manchester, England. I have a younger brother David and my parents ( although split ) still live local as do the majority of my family so I have always grown up with family close.

I sailed through school and then went straight onto college to do my A-Levels. From an early age I knew that I wanted to be a neonatal nurse ( just like my mum ) so I chose appropriate subjects at school and then got a place at Manchester university to do my children's nursing degree.

At Uni I met my now husband who was a nurse on the course too ( adult ). I lived with 3 girls on the course and Rick lived with Jimmy another nurse from the course, ( the guys were totally out numbered and so had to stick together! ) .

Over the first couple of years at uni we fell in love and Rick finally conceded and became my 'boyfriend'!

After Uni I got a job on a regional neonatal unit and Rick at the same hospital on a haematology unit: both the jobs we had wanted.

We were soon engaged and bought a house the following year, we filled it with 2 puppies and 4 kittens and were married the next year.

Soon after getting married, we had some fertility treatment and were lucky enough to get pregnant with our super, wonderful and special baby girl. We spent the next 9 months talking to my belly not realising that this was as quiet as life was ever going to be for ....... Well for ever!?

Madeline was born ( eventually, 13 days late after a 3 day induction ) and we both fell in love with her instantly. Life then became focussed around this little bundle of baby, juggling house work, and enjoying life.

When Madeline was 6 months old I went back to work. I started at a district general hospital on a neonatal unit there. I had had lots of placements there in my training and it had always seemed a lovely unit, plus my mum worked on the unit and had done for years, ( lots of years! ) so I knew a lot of people there. I'm still there now and still love my job.

I'm glad that my career choice I made as a child had turned out to be just what I had hoped it would. I could never imagine doing anything else. I love all aspects of my job. I have met some wonderful families and babies over the year and feel special to think I was part of their early days.

That's about me really! No big exciting stories but I wouldn't swop it! I'm not the sort that wishes I took a gap year or did some travelling etc. I just wanted to be a wife and a mummy and then go to work and try and make a difference. I achieved this nice and early and was enjoying the contentment of life. Of course some more money and more holidays would have been nice but life was good!