Tag Archives: leukaemia

ALL the way home…

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Just over 2 and a half years since this all started, December 17th 2015 marked the end of my treatment for ALL. Clever pun in the title? Anyone? No? I’ll stop! But I have been waiting two years to use that one.
 In December I had my last ever lumbar puncture (hooray… those of you who have been in this for the long haul will recall my not so brilliant track record with those!) as well as finally saying goodbye to bone marrow procedures for good.
It still hasn’t really sunk in. Being the ‘cancer girl’ is such an intrinsic part of my day to day life that tablets, blood tests and texts from nurses became second nature to me. I liked the security of knowing exactly what my bloods were doing each week, since this is the fastest indication if anything is wrong. Now don’t get me wrong, I’m not complaining. Waking up on December 18th and not having to worry about taking my tablets brought a new freedom that I’ve taken to very well. I’ve lost count of the times that I used to stare angrily at my tablets and think about how much I hated them and wished I didn’t have to take them (which I always would do in the end… the fear of relapse would have me swallowing those darn things faster than you can say chemo).
Although I was originally told that my treatment would end in the summer of 2015, the timing worked out well in that I was all clear of chemo for christmas. It also meant that stress alone rather than the pesky steroids was the reason I stayed awake at night before my mocks! Although I have definitely regained a lot of my ordinary life through the maintenance treatment allowing me to go to college, this final step of finishing treatment has given me another bit of much needed and greatly cherished normalcy.
With university interviews happening sporadically and my A2 exams looming *gulp* life is fairly busy. I’ve struggled a lot to find motivation with studying this year so I’m now working extra hard to ensure I don’t waste my good work from last year.
So this is it. I think I’ll write one last post on the lessons I’ve learned from this whole experience as that seems a good way to round this blog off. I’ve loved every minute of crafting posts, reading comments and most of all having a creative outlet where I’m able to be totally open about my experiences. Thank you for reading and for encouraging and  supporting me over the years. It means more than I can say.

 

Another Throwback

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Hi guys. Sorry it’s been a while!
Like I said before, life is kind of the same now with college, medication and socialising so it’s more difficult to write an interesting blog post for you all!
I have just had my monthly dose of IV Vincristine which went smoothly. That was followed by the 5 days of steroids which actually felt much better this time around, I wasn’t up in the night too much and I didn’t want to eat everything I saw for a week (thank goodness!). I felt pretty exhausted today but it is wearing off so tomorrow will be better!
I know I say things like this a lot at the moment, but I really can’t get over it… exactly a year ago today I was escaping hospital for my first EVER day at home. I’d been in hospital for one and a half months and could count the number of times I’d been out of the ward on two hands (if not one!). It still hasn’t lost it’s meaning, every time I walk somewhere I appreciate the freedom and fresh air so much more than before! I know the collage is bad quality (I had a terrible phone camera at the time!) but it is me escaping, the first time I stepped back into my bedroom at home (one of the happiest moments!) and my first local trip down to Bosham…

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On a sadder note, recently some people close to me have had possible cancer diagnosis’s/diagnosis/diagnoses (can someone who does English at a higher level tell me the plural of diagnosis?!) and are waiting further tests and results. It’s scary as it’s supposed to be a fairly rare thing. You can’t help wondering where the justice is sometimes, especially when it’s a type of cancer that you can’t prevent yourself from getting. I’m not saying that people should be wrapped in bubble wrap and living in fear of cancer, because that’s not what was intended for us. It’s not life to the full. Sure, there are things that you can do to cut down your risk which are just sensible but (in my opinion, you are totally allowed to disagree!) letting fear govern your life is pointless. My attitude when I was diagnosed immediately became “what happens happens. I can’t do anything to change this so I just have to get on with it” seriously, it was almost freaky how much in my head I just accepted it! Yes there was crying and frustration, it would be abnormal if I didn’t feel that way at all, but having an amazing support system helped me incredibly.
I’ve kind of brought myself to an accidental point here (how convenient), and in my case it applies to most of you who are reading this… never underestimate the power you have as a friend. Not just with a cancer diagnosis, I am sure any situation of need can be transformed by people’s kindness. Cards, texts, prayers, visits, meals… I’ve mentioned this list so many times because I want to emphasise how much everyone’s show of support meant to me. I guess I just want to say you guys are amazing and you all make a difficult thing a whole lot easier to deal with!

5 Years Time

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A lesson I learned recently is that a lot can change in a year. It comes up a lot with family and friends- one of the days at CYE this summer my friend Ella and I were stood chopping up potatoes and reflecting on the fact that at around that exact time a year ago I was in Southampton, under general anaesthetic having my diagnostic bone marrow taken. The situations were so different that it was encouraging to think about where I am now compared to this time a year ago!

I have this book called “Q&A a day journal” where you have 365 questions (one for each day of the year) and 5 slots to fill the question in, the idea being that you fill it in for five years, and can look back on your answers each time. Yesterday’s made me laugh at the comparison, which got me thinking and inspired this post. Here is the difference between last year and today…

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I was in a totally alien and new situation, embarking on an unexpected (and what appeared to be at first an unpleasant and unwanted) journey. Currently I don’t see it at all that way, as I feel quite distant from the person that stayed in hospital for around 6 months, who was slowly but surely losing her hair and whose world became her illness, treatment and blood results.

This year I am in a new situation again, but this time it is something altogether more welcome than Leukaemia! I won’t bore you with more talk of college but be assured that it is going brilliantly so far! I have offered to be a student representative for Psychology- their job is to meet with the teacher and the head of A levels to discuss how our class feels about the course and provide any feedback and I have already signed up for two trips so it’s all excitement!

I’ve had many people ask recently where I am at with treatment (being back in normal society is still a thrill!). Since most people know nothing about this (oh you lucky, healthy people) and often people don’t realise how much is still going on I thought I would show you what maintenance treatment looks like. Conveniently it happens to be a Wednesday, the day I take my weekly Methotrexate dose!

First up, morning tablets. Folic acid, an anti-viral drug and a stomach lining capsule. 5 days out of every month this will include 4 tiny Dexamethasone tablets- the dreaded steroids! At lunch time it’s the anti-viral again, along with a second dose of steroids if it’s during that 5 days.

The evening dose is the most complicated and contains the proper chemotherapy drugs every day. The four smaller tablets I am taking every night for the next year (they are a chemotherapy drug called Mercaptopurine) so the larger yellow ones are the methotrexate. In the evenings I have a few other ones I can take if I need them which depend on how I feel e.g. pain relief.

leukaemia maintenance chemotherapy tablets

Along with these tablets I have the monthly IV and a lumbar puncture every 3 months, which you have heard me banging on about multiple times so I won’t go into detail here!

I think the journal I mentioned before is a great idea, as it helps you to explore odd questions about yourself that you wouldn’t normally think about. As a nostalgic person who keeps even the most ridiculous thing simply because it is a memento, the idea of documenting the changes in my life over the 5 year span is very welcome! Who knows where I’ll be in five years time… maybe I’ll be finishing at university… maybe my Leukaemia will have relapsed… maybe I will be travelling… maybe I will have completely changed my career choice… maybe I’ll be winning Britain’s Got Talent (yeah, that’s likely, ha ha ha). Anyway, it’s not up to me! I’ve learnt to take life as it comes now, enjoying the highs and learning from the lows each time.  All I know is that it’s not worth stressing over, because that stops you from looking around and appreciating life in the moment. You lose sight of the small things you’re blessed with and forget to be someone who does those things for others. I’m not saying I am perfect at this all the time, but it is something I am trying to work on every day.

Just Married (NOT ME!)

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** WARNING! due to photos and my ability to ramble this is going to be a long, descriptive post!! **

I mentioned we were down in Bath in my last post, but I haven’t written one to talk about the weekend yet. On Saturday morning we woke up early, so we managed to squeeze in the Roman Baths and an open top bus tour before the wedding! I enjoyed seeing the Roman Baths, as a previous Latin student it’s a place I had heard quite a bit about and wanted to visit. The steam coming off of the water was eerie, mum even stuck her hand in to see how warm it was (I then overheard a guide telling another visitor to make sure she washed her hands straight after as the water contains so much bacteria. At that point I was very relieved that I had decided not to put my hand in!)

The architecture of Bath is just beautiful. It is largely filled with Georgian town-houses for any of you who haven’t been, but places such as the Roman Baths and the Abbey with its Gothic look are some of the reasons that Bath is the only city in Britain that has been made a World Heritage Site. The open top bus tour showed us many of the highlights, but simply walking around  the streets of Bath offered us some lovely sights. We happened to be there on the day of a Jane Austen celebration, which we didn’t realise but I had a suspicion that something was happening as there were an abnormal amount of people in period costumes when we went around on the bus. Just as we were rushing back up to the hotel we saw a gathering of people so we stopped to see what was happening. I am not exaggerating when I say that there were HUNDREDS of people dressed in Austen outfits, all in a giant parade down the main street. I’ve never seen anything like it except the parades at Disneyland! There were children, the elderly, men, women and even the ‘militia’ coming down the road. As an avid Jane Austen fan I loved it, and since we didn’t realise just how many people there would be we stayed a little too long watching, which took away from our getting ready for the wedding time!

Trying to make a collage ruined the quality of the photos so if you click on a photo the slideshow should appear, let me know in the comments if it doesn’t work!

Soon enough we were in the taxi heading to Frome for the wedding. The first venue was a lovely converted chapel on top of a small hill in the town, it is now an art gallery but can be hired for weddings. The ceremony was lovely, and I’ll admit I shed a tear at the vows!

After watching the bride and groom, Ed and Emily, sent off in a gorgeous old car we slowly made our way to the reception at Batts Farm. This was a barn with a smaller room leading into a high ceilinged main room where the tables were laid. Both looked absolutely beautiful, the smaller room was filled with fairy lights, bunting and the bar, and the bigger room had the tables in a U shape with mismatched table clothes and colourful wildflowers on the table, as well as bunting hung from the tall wooden beams. Each seat had a piece of slate with our name written on and some seeds to plant as a favour- such delicate and lovely touches! Outside there were hay bales with blankets set in circles for people to sit and chat on, along with even more bunting, this time made by the beautiful bride, Emily!

The rest of the day was filled with photos, excellent food and bouncing on the bouncy castle- props to Emily who managed it very well despite the wedding dress! One of the nurses who no longer works at Southampton had come down for the reception so we got to catch up on everything.  And yes, I did tear up at the speeches, I tried not to let any loose but when people get emotional like that then I am gone too! Mum and I had the loveliest day despite being nervous because we didn’t know many people, which didn’t even matter because everyone we spoke to was kind and welcoming (even if they didn’t know who on earth we were or why we were there- an interesting one to try and explain!)

I thoroughly enjoyed the live band, it was a mix of country and bluesy type music I think so we all had a great laugh twisting, kicking and (attempting) jive like moves! They also had a lovely group of three musicians who were playing as people arrived for the reception, it made a sweet atmosphere whilst we sat in the evening light on the hay talking.

On Sunday it was mums birthday so I took her out for a birthday breakfast at Carluccio’s. We then did some shopping (or in my case, a mammoth amount… they had a Primark… I couldn’t resist!) then we caught the train home for a BBQ dinner with the cousins. I had such a lovely weekend and will definitely be returning to Bath in the future!

My bloods are still fine so far (touchwood) as my Hb was 113, Platelets 116 and Neutrophils 3 this Tuesday. Later in Human Biology we are looking at samples of our own blood that we took on Monday, so I am really interested to see if mine looks any different to the healthy people in my class! The only other news is that I am on a serious health kick after Bath and my steroid hunger, college gym here I come!!! Hope you enjoyed the photos, there are more on my facebook in case you are curious or haven’t already seen them.

Summer Paradise

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At 7pm on Wednesday night I was picked up by Gracie’s mum Jo, blindfolded and driven to a mystery location for my birthday surprise evening! It turned out to be a lovely barbecue on the lookout area behind the Trundle Hill (some of you hardcore blog readers may remember when I went there with my aunty for a picturesque lunch and in stead the landscape was blotted out by the bad weather, I put a photo up!). The view is stunning and it is one of my favourite local spots. We stayed up there for a few hours chatting and having our meal, I had a really great time! It was so lovely and thoughtful of them to arrange it for me 🙂 There really is nothing like the smell of a lit barbecue in summertime! Here are some photos, but it has been confirmed by my brother that I “don’t take a nice photo” so I apologise for how awkward I look!

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On Thursday we went to the beach, and I had such a brilliant day! As my line was out I wasn’t panicking about it getting sandy or wet and since the wound has almost fully healed I went for two ACTUAL SWIMS in the ACTUAL SEA! Usually I detest swimming and wasn’t bothered by not being able to go with my line in, but it was such a lovely day and the sense of freedom was amazing. I appreciated it so much more than I would have before diagnosis. Using factor 50 sun cream I managed to stay in the full heat of the sun for 5 hours without burning at all! West Wittering beach was crammed with people, which you can see if you look towards the left side of this photo I took…

west wittering beach

This Friday I went to Southampton for what I thought would be the start of my maintenance treatment, but ended up just being a bloods check and a catch up with my consultant. I wanted to get it all under way, but I prefer to look at it this way- no poking around to try and get a cannula in my tiny and buried veins, no chemo and I didn’t have to spend a whole day in a stuffy room, that equals a victory for me!

I loved that as I was saying goodbye to a friend who is also having his line out and moving onto maintenance at the same time as me (although he was only diagnosed in January- how unfair is that?!) we both warned each other at the exact same time “Don’t do anything mental/crazy!”. Even though we can be more normal now we were reminded by the specialist nurse today to be careful and remember that a) our bodies have been through a lot b) we will still be on oral chemo every day. To be honest I don’t think that’s going to stop us doing much, unless our immune systems are REALLY bad!

My maintenance phase is set to start some time next week at the local hospital, I don’t know exactly what these doses are going to do to me but I have a party, my birthday and volunteering at CYE Sailing Centre to look forward to!

Family Affair

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This past weekend saw our annual family get together. A gang from mum’s side of the family all come down to our house for a meal and a catch up. We call it “D’Arcy Day”!

Despite the usual panic over the weather (which began with stressing about rain and then turned into will we be too hot and not have enough shade!) plus a tense few hours of the fridge playing up in every way it possibly could the day went smoothly overall! I don’t know how to describe it, basically we all sit around chatting, drinking and eating in the garden. I put up some old photos for people to have a nose at and organised a photo scavenger hunt for the children to keep them entertained.

I had only seen one of my more distant D’Arcy relatives since my diagnosis so it was great to catch up properly with everyone. I found that it was really lovely being free from my line and any treatment because I felt normal and the whole thing seemed like it was in the past. I don’t know if I am putting it into words well enough, I mean that I didn’t seem ‘ill’ and people weren’t pitying me and going “oh, she’s the one who had cancer”.

Anyway it was a beautiful day and here are a few photos…

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I was meant to have a rest day after that as I have a busy three weeks ahead, but in stead I went out to lunch with the Irish ladies (Grandma Olive and Mary, featured with their brothers in the top left photo) and my aunty.

On Tuesday I went to the cinema for the first time in forever after a lovely picnic with my friends so that was really fun! I went to see The Fault in Our Stars which I really liked. I thought that the film stayed really faithful to the book and the parts were perfectly cast. I also thought that they captured the mix of “cancer life is rubbish” and “lets make jokes out of this because we can” well and I really related to some of the poignant moments in the film.

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My birthday is 7 days away now which I am excited for, I don’t know what exactly but it sounds like Gracie is planning a nice evening of fun birthday stuff for us tonight so that will be lovely. I am going to be at CYE for the third year running on the actual day, but this year I am helping out rather than going as a camper so my family get to see me in the morning and evening.

Hold the Line

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My central line removal finally went ahead today. I can’t quite believe it and I keep forgetting that it has gone for good!

The removal took longer than planned, the doctor said that there was some really tough tissue around the line that was holding onto it which became quite tricky to separate! He injected a load of anaesthetic, then using a scalpel and forceps just cut away at the bits of tissue for around 40 minutes! After he had started I was wishing I’d asked for gas and air as there were quite a few sharp pains throughout, but the doctor was really helpful as he put more anaesthetic in whenever it felt too bad.

I took a comparison photo, one of the line so you could all see what the whole thing looks like and even got one of me holding the line once it had come out so here are some of those… if a little bit of blood will make you feel ill then don’t look right!

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hickman line

 

 

 

 

 

 

 

 

 

 

 

Afterwards we headed over to have a cuppa and catch up with a friend and fellow patient who is staying in a flat opposite the hospital while she undergoes her treatment. We sat out on the roof terrace and had a good old natter about all things Leukaemia related which was great!

It already feels lighter not having the line dangling from my chest but it will be more comfortable in a week once the stitch has been removed! For the moment I am using Paracetamol to dull any pain and hoping that there won’t be a load of bruising when I wake up tomorrow.

Hot in Here

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After what felt like one of the longest hospital days EVER, I was feeling down and really ready to get a great nights sleep tonight. Does anyone know my situation well enough to guess what happens next?
No rest for me, as my temperature has just spiked and I definitely do not feel right. I am shivering and aching all over- joints, head, throat, chest, ears… You name it, it has probably been hurting! My Aunty now has to drive me from Barnham back to the hospital (which I left just 3 hours ago).

10:22 pm
I’ve come into Howard Ward and am waiting to see a doctor now. It’s not likely that I’ll be getting much sleep but is probable that I’ll end up as an inpatient if the temperature goes any higher.

This couldn’t have come at a worse time as I was already in the worst mood earlier because I am utterly and completely sick of sitting around in a hospital room all day (which I have been doing way too much of recently)

10:48 pm
Live update: my temperature has already just gone up to over 38 degrees which means a course of antibiotics needs to start as soon as they are ready. The antibiotics mean that I will now be in here for 5 to 7 days depending on what is actually wrong. Any long time blog readers beginning to see a pattern here?

As the (cute) doctor feels my neck glands for swelling “blimey you are hot aren’t you sweetheart!” #melts

11:35 pm
I can’t believe that all of this rubbish is happening in the week when I was meant to be done with chemo and looking towards freedom. Is there no justice in the world?!

Safe to say my mood is even lower now, on top of that I feel hot but also absolutely freezing and generally unwell. I still have all my hospital bands on from earlier though, what a happy coincidence.

Will update when I know details.

My Last Dose of Intense Chemo!

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Today, 296 days (or 25, 401, 600 seconds) since my diagnosis marks the end of the “intensive” chemotherapy stages. I went into Howard Ward for the dose, which I actually really enjoyed… add that to the ever growing list of things I never thought I’d say! It was lovely because by now all the nurses know me really well so they were all popping in to say hello, plus one of my community nurses was there too so she gave me a very enthusiastic wave and smile. The Vincristine was given as a bolus (push in a syringe) so I didn’t even have to spend ages in hospital, which is always a plus!

The Flowchart- A Visual Representation of Treatment

The Flowchart- A Visual Representation of Treatment

After the chemo my aunty and I went out to West Dean Gardens for an ice cream as there isn’t much else I can do to celebrate! She sneakily bought me an absolutely gorgeous bracelet which I am in love with!  We got some seeds that sound almost like my name- “Rudbeckia” to plant and mark the occasion too. It is so amazing to say that this day has finally come, it feels like I have been counting down to this forever! On the other hand, sometimes I look back and wonder where the last nine months has gone, it’s been a crazy rollercoaster (I know this is such an overused statement, but it is so accurate- some parts of a rollercoaster are slow and drawn out, like when you are travelling to the top but other parts go by insanely fast, say when you are hurtling down a drop and screaming until your lungs hurt!).

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The afternoon ended less than pleasantly though with a phone call from mum saying “dad is in the hospital with a rash that they think is Shingles”. This is one of the main things that they have told me to watch out for and TRY NOT TO CATCH when I am immunocompromised. I am now really paranoid and convinced that every slightly odd feeling is me coming down with it! As a result I have to increase my dose of anti-viral drug  (800mg 4 times a day in stead of 400mg 3 times a day… seems a bit of a jump to me?!) coincidentally, this is the same drug that dad is on to treat his Shingles! From what I hear, Shingles when you are immunocompromised is NOT fun, so we’ve decided that to eliminate the risk I am going to stay with my cousins in Barnham for a bit, the way Daniel did when he had a cold and I was allowed home for the first time.

Treatment-wise, we are now waiting around for my counts to be high enough so that my line can come out and I can start my maintenance phase.

 

Lets Get It Started

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After a last minute change of plan which meant that I had to pack a bag for a 1 night stay up at Southampton, my chemo finally started on Wednesday. The day turned into a bit of a nightmare (it was a lumbar puncture day and you know I never have any luck with them!) but I was able to leave Southampton this afternoon as planned. Here’s the story of Wednesday…

11:30 am: The first thing that went wrong was that my bloods were taken too close to the time of my lumbar puncture. Without knowing my platelets they couldn’t go ahead due to the possible risks, so our first setback was that we would have to wait for the results to come back from the lab.

2:30 pm: THREE HOURS LATER, in which time we had been stuck waiting in the cramped intrathecal room on a busy and disorganised ward, the results finally showed my platelets to be at an acceptable level. Brilliant! So we can get started now right?

2.40 pm: Cue the next disaster: pharmacy were going to take another half an hour to make up my chemo, which to this very moment makes no sense to me since the intrathecal was booked for 11.30am! WHY WASN’T THE CHEMO MIXED FOR THAT TIME?!

3:15 pm: We get wind of a universal gas and air shortage. Only one of the five cancer care wards had a canister, but they needed it for patients who were having bone marrow biopsies. When the nurse asked me if I didn’t mind going without (casually, as if this was no big deal) I tentatively nodded my head and in what I’m sure was a hushed voice several octaves higher than my normal tone, replied “mmmm…. thats….. o..kay”. Ever since that first lumbar puncture which went oh so wrong I have always had the gas and air to take the edge off, so I couldn’t imagine the procedure without it. I was anticipating severe pain which of course didn’t happen, but you do notice a few more unpleasant twinges and sharp pains without it.
One of the main lessons you learn through this and any experience of hospital I’m sure is “take whatever pain relief they offer you”!

3:50 pm: The lumbar puncture is finally done, and so begins the hour of lying flat on your back afterwards to prevent headaches and sickness. Like I said it wasn’t as bad as I had expected but I did spend most of the time trying not to cry, not from pain but because of the way that everything had built up, also from being aware of everything during the procedure and the fear from right before that I had kept in! I knew it was irrational so I was lying there giving myself a silent pep talk and willing myself not to blubber like a baby!

Was that it? Could I relax now? No, of course not! The moment I could stand up again I was straight off to have my monthly nebuliser, that ghastly drug that I have to sit in a ventilated room and breathe in. I think by that point in the day I was so indifferent to everything that I couldn’t be bothered to get worked up by it. I put my headphones in and powered through the vile taste so even that wasn’t too bad in the end!

The day ended very well with the girls having a good old natter: Asheton, Kitty and I plus our mums all sharing news and having a moan about a few things! I also got to catch up with another friend who we hadn’t seen for a few months which was also good, she amazed me with her strength and bravery as she was facing a major operation today.

I had one dose of IV chemo today, my last ever shot of a drug called Cyclophosphamide so I have been feeling slightly groggy since then, but am glad to be home!

Juxtaposition

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Hello all!
After last nights post, it turns out that my platelets have actually gone up to 71 today!!!!!
YESSSSS!!
When the nurse told me over the phone I broke out into a grin and even did a little victory dance because that is only four away from what the regime specifications require for chemo. Hopefully the bank holiday weekend will be enough time for the platelets to increase that tiny bit more (AND NOT DROP, PRETTY PLEASE!).

I will start by having a lumbar puncture and drug called Cyclophosphamide next Wednesday, then four days of a drug called Cytarabine pushed through my line at home or on Howard ward. The drugs are not new to me so I have a general idea of what to expect: tiredness and possibly a bit of sickness, fun fun fun!
In the back of my mind it feels wrong to be excited for chemo and the two words don’t even belong in the same sentence but I am really looking forward to getting this month over and done with, as you well know from all my moaning blog posts!

I’ll leave you with my current thoughts/feelings:

HALLELUJAH!

Blood Culture Results

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It turns out that both of my lines have grown a bug in them, which is just great!!! (NOT.)
I am feeling well and everything is stable so I could technically come off of the antibiotics, but due to the fact that this is the 3rd incidence of a line infection the doctor reckons that doing the full 7 day course would probably be best in order to kill as much of the bug as possible.

They didn’t manage to get in contact with my main registrar at Southampton as he was off today, but tomorrow they will call him to make sure a plan is in place before the weekend.

For the moment I am still locked away on the children’s ward, and despite a few kids screaming and crying as if they were being tortured earlier which was quite moving I don’t actually mind being here as I am close to home. There is always a positive!

It did make me laugh when I first got here and the nurse came in to weigh me as she said she wished all patients were as easy to treat as me. I was confused as I wondered why any young child would resist what is probably the easiest part of all this, being weighed; it’s quick and pain free! She told me that they often have to bribe children onto the chair with stickers. Rewards for sitting on a chair for ten seconds?! The idea seems ludicrous to me, but then I got thinking… maybe I should be playing the cancer card a bit more, reaping some more rewards? Haha!

Hospital Again!

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We had to come in to Howard Ward at St Richards tonight as I got a temperature of 37.8 and had a few symptoms of illness. The temperature has since gone down but now I am here they are running through all the tests: blood cultures, peeing in a pot, throat swab (ugh) and regular obs just in case I’m brewing something.
If I am it will be good to catch it early on and be staying here rather than up in Southampton. It feels weird being in the same room as where it all began but not bad like it did when I was in here before. I think that’s because I’m so close to the end of my intense treatment that I see things a lot more positively than when I was in the middle and feeling worse.

Will do an update when any results are back or a plan is made!

New Blood Results

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Hello!

My platelets were exactly the same today as they were last week so that means no chemo for this week. On the plus side my neutrophils are up a bit at 1.4 so I have a bit more of an immune system. They are still beneath a normal person’s results but that’s expected at this point with the drugs I’ve been on and I’ll take what I can get! My hb is 105, it’s hovering round 100 which is a good level for me.
On Monday my aunty and I drove up to the trundle hill for a picnic because there is a lovely viewpoint up there, but within minutes of arriving the rain came and the whole of West Sussex was engulfed in cloud… which kind of ruined the view a bit, as you can see!
clouds over west sussex
Life is getting pretty dull sitting around waiting for the chemo, the only exciting thing I did today was catch up with a friend. After that I didn’t really feel like doing any of the tasks I’d set myself so I watched Breaking Bad and read a book all afternoon. In the beginning it took us quite a while to get used to the fact that you can have down days where you either feel rubbish or are just lazy, in fact you need to! When I came off the first course of steroids (on which I was buzzing and doing lots) I crashed and after reading MacMillan booklets such as “How are you feeling? : The emotional effects of cancer”  (honestly not something I thought I’d ever need!) I embraced the rest days as they are good for my body while its cells are killed!
The next step is bloods again on Thursday and who knows what those results will be!

Platelets Let Me Down

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Today’s blood test revealed that my platelets are too low for chemo which is

so annoying!

My results were HB 112 Platelets 51 Neutrophils 0.7. 

They have rescheduled to check my bloods again early next week and all being well my chemo should go ahead Wednesday. I really don’t want there to be a big delay so here’s hoping my platelets recover ASAP!

This evening some of the cyclists for the upcoming “Tour de Solent” I have mentioned met to discuss the plan and here is a couple ofTeenage cancer trust cycle  photos we took for the Just Giving page…

 

Also I noticed on the way back how wonderfully patchy my hair is getting, see either side of that weird shaped bit of hair left at the front…

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And just for some more embarrassment (a nurse once said to me

                                                                                                                                            “with cancer you                                        leave your dignity at the door                and pick it up on the way out”

and man he was spot on!) here is a video Ed, Harley, Josh and I helped to make which gives a tour of the ward at Southampton, I’m sure many are curious to know what it looks like! Apologies in advance for how inarticulate I am and how silly my voice sounds. OH and also how bad I am at dancing.

                                              Yes, I said dancing!

But it’s a cute video and it was really fun to film, as you can see a lot of the shots were taken while we were just messing around so it was a laugh!

http://jimmyteens.tv/2014/05/09/this-is-southamptons-teenage-cancer-trust-unit/

Back Home… For Good?!

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I come bearing good news!

I thought that since I don’t have any chemo for the next two weeks I’d be able to get a bit of leave to be at home rather than sitting around in hospital for ages, however the doctors have kindly gone a step further and unexpectedly arranged the REST of my treatment block through St Richards and the community nurses who come to the house!
This means I will be living at home with my bloods done twice a week and I only have to go into Southampton around 4 or 5 times in the next 2 months for the bits that St Richard’s can’t do. This is a much better deal than being stuck in the unit the whole time!

I am still neutropenic and will probably be up until June so I have to be careful about what food I eat and avoid people who are ill or have illness going round their family but I’m so glad that I get to be home that I’m not bothered! Now I just have to be super careful because I don’t want to end up in hospital when I don’t have to be because of an infection!

We had to pack up the room and there was so many bags and boxes that I have to confess I haven’t unpacked it all yet… so much stuff but so little space to store it!

So last night was possibly my last night on the unit ever! (I’m still a smidge sceptical as the doctors did say that before and then I ended up in hospital again but I will enjoy whatever time I can get at home and hope that it will all work out!)

Quick Update!

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Had 2 chemo doses again today and I am feeling ok so far except for a bit of back pain from one of the drugs. My next treatment isn’t for about 2 weeks so if all is well the consultant has agreed to discharge me on Saturday. There’s no point in me sitting around here doing nothing when the bed could be used for other people so I should be getting some more freedom which is great! I’ll just have to be super careful at home because it’s very likely that my immune system will be flat again pretty soon. Luckily Howard Ward at St Richards have agreed to give me a bed if I get a temperature and need anti-biotics like before so even if I get ill there is a plan in place.

So anyway, I will let you know whether I manage to get out or not!

Goodbye for now!

Perpetually Tired

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Hi!
Having felt a bit rubbish the last few days my mood did pick up considerably earlier and I was back to my more chatty self for a while!

I had my two doses of chemo in the morning, one of which I thought I’d put up a photo of as it is quite an unusual bright red colour…

doxorubicin It hasn’t come out that effectively as this was taken on my phone but it looks like Tango or a melted strawberry ice pop in real life!

It turned into a really pleasant day so when my cousins arrived at the hospital we escaped for lunch on Southampton Common. I really enjoyed getting a trip out into the fresh air but have been shattered ever since as the chemo has definitely kicked in!

My next dose is on Saturday so I am just waiting around now to see if I can grab some more time at home when that is done.

Before I go I just wanted to say a quick thank you to the people that sent me an email through the blog after my last post, it was a real encouragement to hear from you and all of the support is really appreciated!

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My first night back at the hospital last week was difficult and the few days I was in were quite a drag as I hadn’t adjusted to being back into hospital yet, so the extra weekend of freedom they gave me was much appreciated! On Saturday we ended up messing around on Felpham beach because we were forced to go on a windy and cold walk…
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… and Sunday we had a lazy day at home and saw some family.

I came back here on Monday morning but ended up waiting until the afternoon for the doctor to do my bone marrow. It was a bit more painful than they usually are but nevertheless a relief to get it out of the way.
There’s a lot of girls on the ward at the moment, obviously it sucks that we have to be here but having other girls to talk to is really helpful as we can share all sorts of things and it is really comforting to have similar people closer to my age around! In the evening a couple of us from the ward and a friend from next door got together in the social room for a chat and a movie which was really nice, Asheton and I were trying to be helpful and answer a new patient’s questions but I think we just shocked her a bit by telling her about 6am bloods and whacking out our Hickmann lines which she knew nothing about!

The plan for today is to start chemo which might include a lumbar puncture, that will depend on whether my platelets have gone up enough.

Bad News But a Very Good Day

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The bad news is not too bad so don’t worry!

The ward rang this morning and they want me back in on Monday because my platelets went up (which I was very surprised at!) After this time at home which has been (and still is for the coming weekend) filled with lovely friends and family moments it is going to be boring and lonely being shut up in hospital getting needles prodded around my back and starting chemotherapy again.

Today Gracie and I went to the art and craft walk in Bosham, which I am assuming most of you locals know about! It’s so adorable with all of it’s tiny shops and cute cafe, but we were there for another reason. Doodle and Daub- the pottery painting place! It was great as they got us started then left us alone upstairs so we could get on with painting and chatting away. I really enjoyed it and am very annoyed that I can’t fit more of that in while I am home, it was perfect as there were only about 13 other people in the whole two floor building the whole time so I didn’t have to worry about picking up a cold from someone. Most of you will know that I am terrible at art- I somehow managed to bluff my way through 3 years of it in high school and used stick men in any notes made on drama performances! This is why I was pleasantly surprised with the bowl that I decorated (I will admit it wasn’t my idea- wonders of the internet and all that!)

My Watermelon Bowl

My Watermelon Bowl

 

"Gracie's
The colours will come out much more brightly once the pottery has been through the kiln, so we are looking forward to seeing them!
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I thought if I put my counts in when I know them it might make more sense than when I suddenly drop in a random number and interest you to see the pattern so Thursdays bloods were:
Hb (haemoglobin/red blood cells): 98
Platelets (make the blood clot): 81
Total White Cell Count: 4.5
Neutrophils (immune system): 2.6

That’s all for now,
Becca.