ALL the way home…

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.

 

Quick Life Update…

A lot of medical things have been happening recently, beginning last week with a lumbar puncture (not good) then this week chemo (this went well!) and today ending on a bone marrow (again not good!). I don’t know why the two procedures went badly this time, I just felt a lot more pain than I normally do. Usually I can’t feel a thing and am having too much fun off in my own world (what I would do without gas and air I don’t know!) but these experiences were quite stressful as the doctors couldn’t seem to find the right spot, meaning that I had to do a lot of moving around. Shuffling around doesn’t feel right when the last thing you were aware of was having a big needle stuck in your back! Anyway, on the bright side, now there is NO MORE BONE MARROWS FOR A YEAR!

I even managed to be in college for the rest of the day, which to me was a sign of how far I’ve come. When weakened and in hospital they used to tire me out for the rest of the day and have me hobbling around in comfy clothes for at least 2 days afterwards!

My body has been amazingly tolerant of the maintenance chemotherapy, which is good as it means I am getting as much as possible. I think that should mean that the Leukaemia is less likely to relapse, which is definitely a good thing.

I am starting to pick up and successfully cope with small coughs and colds which is a good sign. Despite my immune system being lower than normal and still attacked with drugs every day it’s still pretty good!

College is still going well, I think I have a good balance between socialising and work (parents evening is coming up so I’ll get back to you on that…) and have made some great friends, so this term couldn’t have worked out better. I’ll probably never fully understand why Leukaemia happened to me, but I am starting to pick up little things in every day that I have learned or that I wouldn’t have seen or been able to do or appreciate before.

Hope everyone is well!

In case anyone hasn’t seen my hair recently, this is how it’s doing. Look at those curls coming!!!!

I didn’t choose the puff life, the puff life chose me…

Just Married (NOT ME!)

** 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.

A New Normal

4 days into college the work has started and mixed with a lack of sleep from my steroids last night plus studying the bit of biology I did not understand last year I am feeling rather sorry for myself today! I went to ask about dropping one of my A level subjects and it all moved along so quickly that I didn’t have much time to think, which led to me feeling really unsure about everything! I really wanted to do four, but I do also really want to focus and do the absolute best I can in my main three, so hopefully I made the right move today.

Sorry this is going to be such a ramble, I am a bit all over the place!

 I saw another Leukaemia patient’s post which I totally agreed with and have been meaning to write about for a while… her point was that sometimes she misses being ill. I know it sounds ludicrous… how could I miss being constantly poked and prodded and bothered? The truth is that life now seems simpler in those days. I adapted to my new life and had one thing to focus on: my daily blood results and just getting through my intense treatment. Plus it was totally OK for me to lounge around watching box sets all day! It didn’t matter if the steroids kept me up all night because the nurses would chat to me or I could just sleep it off the next day.

I feel like being back at college my brain is on sudden overload. It’s another new normal altogether. I have to worry about homework and timing and outfits and lunches and to be honest it does sometimes leave me missing those lazy chilled days! I am not saying I miss actually feeling rubbish, of course not! There were many times when I felt frustrated with my lot and ached to be able to leave the hospital and doing something productive! I appreciate it probably doesn’t sound that simple to you either, I know I am a mass of contradictions right now but I think my brain remembers parts differently and forgets how often I wanted it all be taken away.
I just miss having less responsibility and less to worry about. I didn’t have to worry about all the teenage dramas, I was primarily a cancer patient and that was my world.  I imagined life all aligning really well once my intense treatment ended and thought that I would be so up for everything, but sometimes I need to take a step back and realise that I can’t just throw myself into a full normal routine again. This is where I feel a bit lost, as I am still readjusting and trying to find that all important balance of chemo, work, sleep and exercise… currently feeling like a one armed man trying to juggle way too many balls!
Also I expected to feel amazing all the time once I started my maintenance and though I often I do, I still always have a nagging worry about relapse. I’m also now stressing about the fact that once a month I am going to be feeling really down and tired, which is not something I need when I am trying to stay alert in a three hour lecture! If only the steroid treatment was optional!

If I’ve caught up with you recently I am sure you’ll have heard me use the phrase “back to life” which  I do feel like I am, so despite the negative tone so far in this post, be assured that college life is going well overall! I have 4 main friends who are all lovely, two invited me to the cinema yesterday but the steroids had me racing to get home and lie down and another girl and I are going for something to eat or drink after our afternoon lessons tomorrow… TGIF!

We got a large list of enrichment clubs today and some sound really cool, so I need to chat with everyone and work out what we feel like doing… I am tempted to go for cooking, zumba, badminton and rock climbing so far so that will take some debating!

I made it through another zumba class this week (I even turned up without mum this time!) but I did have to stop halfway through as I felt a little off and thought it would be best to have a break seeing as I’d had chemo the day before… I did not want anything to happen in the middle of the scout hut with a load of strangers around me!

My other news was that I finally got to a TYA (teenage and young adult) meal, where all who have been treated on the unit at Southampton get a free meal out with CLIC Sargent. I had a great time catching up with everyone and was so relieved to finally be able to go… I’ve been eagerly awaiting one of these treats and free days out since last September!  Here’s a photo of the table, including Ed, Emily and Ollie who I have mentioned quite a bit!

 

High Maintenance

My first maintenance chemotherapy started earlier. I had a very thorough check up from the consultant who tests all my reflexes as well as the usual things such as listening to my chest and asking the detailed questions. I don’t know why but I always have to stop myself from giggling ever time she does the reflex tests, I think it just feels ridiculous pushing against her hands with my hands and legs and having someone prodding my stomach and neck! I do feel reassured that she checks every single thing though.

I’ve been told that every cannula in my maintenance treatment will be in my hand, which is not the greatest news. The hand is one of the most painful places and I could feel every second that the needle was sliding into my hand (though in reality it took less than 10, it felt like at least 30!). It was the most drawn out pin prick I’ve ever felt! Once it had plasters stuck all around it my hand just felt a little weird and I was nervous of moving it too much because y’know, there was a tube going into it and all!
That being said, it went a lot better than the first time I ever had a cannula inserted, when 3 different people had to have a go, then when the doctor checked the blood was coming back I saw an arc of my blood spurt out of my arm. Imagine feeling queasy and upset about that and then going into a room where your parents tell you that you probably have leukaemia… You can see why I dislike even the thought of cannulas!

I got a paediatric teddy plaster though which added a touch of humour to the situation!

A load of tablets accompanied me home from the hospital, there is quite a bit to remember as some are taken once a week, some for one week in the month and some every day- that’s going to be hard work trying to get the hang of and making sure I am not missing doses! I am back on steroids for 5 days now which I hate as they keep me up in the night or make me wake up at stupid times like 2am.
Another old friend, the chemotherapy tablet Mercaptopurine, is back for the next year  and I have to take that every night. I dislike that one too as I am pretty sure it exacerbates one of my most unpleasant side effects – but I’ll stop talking about all the drugs I hate now otherwise I’d be here until December!

I had a visit from the Make a Wish volunteers which was really exciting, but choosing my wish ideas then prioritising them was tough! I’ll find out in a couple of months which one of my wishes is possible, so that’s something to look forward to!

Devon On My Mind

We’ve had an action packed week down in Devon!

Since my last post we have been down to some caves dating back to the Roman era, climbed the rocks at the foot of a cliff, visited both neighbouring towns, hired motor boats and most recently been on a “Segway Safari”!

The caves were chilly but really interesting, in one place a worker signed the wall in 1868 but you could still read what he had written! We had to wear very attractive yellow hard hats in case of falling rocks and were given the option to wear a fleece poncho for warmth- something us teenagers politely declined!

Our climbing expedition felt very ‘famous five’-esque and despite being nervous and slow on the way there I was soon clambering around from rock to rock like the little kids around us! The water in the bay is beautifully clear even up to shoulder height, and is a lovely Jade colour. It gets waist deep just a few steps in which makes a change from having to walk really far out at West Wittering!

Two of our nearest towns were Sidmouth and Lyme Regis, we visited Sidmouth first and stumbled upon a morris dancing parade on the promenade, then we saw more of the Jurassic Coast through a guided ‘cruise’ down seafront. In Lyme Regis we did a spot of shopping and decided to treat outselves to lunch out. The high street was cute, but none of the other beaches have topped the one in the town we are staying in!

On Thursday we spent our time at Beer beach, mostly sunbathing but we also took two motor boats out for an hour on the sea- during which the boys managed to catch some fish and the girls succeeded in breaking the boat… we fixed it though, so no harm done! On the trip both boats caught sight of a seal in the wild, dipping in and out of the water which we were pretty impressed with!

The segway ‘safari’ Friday morning was superb, at first when we were being taught the basics everyone was a bit shaky and unsure but once we got onto the training track we were off! (If you don’t know what this is, open a new tab and google “segway” then come back!) When our leader took off the speed limits we went flying on the road, as we went over a gentle hill we got to try weaving from side to side which was so fun! It’s really exhilarating with the wind rushing past and the wheels carrying you- “it’s all about trusting the machine” as our guide would say! We were given the opportunity to go over a bump in the track, which we girls hurriedly shook our heads at and rolled backwards, but the boys were up for the challenge. My cousin even took off and made a little jump out of it by accident which looked good but terrifying at the same time! After a quick group photo we all tried going backwards, at which point my uncle falls clear off of the back of his segway onto the grass!

So I had a brilliant week of holiday, coming back to real life was sad but had to be done! I loved Devon and definitely want to go back again to explore more! Today I should be starting my maintenance chemotherapy which lasts for a year. That means an IV this afternoon: the dose will go through a cannula (really not looking forward to people trying to get that into my tiny, useless veins!) and some tablets. I really don’t want to do it as I feel like I am back to normal now and don’t need any more treatment, but I know that I have to go through with it to hopefully prevent  a relapse.

Will let you know how the hospital goes and whether I feel any different from this round of chemo anyway! Hope everyone is having a lovely summer.

Summer Paradise

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!

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…

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

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…

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.

 

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

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!

 

 

 

 

 

 

 

 

 

 

 

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.

The Course of Hospital Procedures Never Did Run Smooth

So today’s blog post was going to reveal some exciting news (and therefore excuse the fact that I neglected in writing as much last week). The plan was to have my line taken out and I thought I would surprise you by keeping it a secret until after!

*Now go back and read the title again…*

As you may have deduced just then, said removal was not completed. The consultant at Southampton wasn’t happy with my bloods yet, they need to be higher and stay up for it to be safe to take the Hickman line out. I don’t mind as I know it will happen sometime in the near future, another week doesn’t make any difference to me; I’m certainly used to it’s presence!

I don’t know if everyone experiences this but for me my thoughts and feelings about the line coming out are bittersweet. Just thinking about all the lifesaving blood products and drugs that they have given me via the Hickman makes my brain hurt! Without it I will need a fair amount of cannulas over the next year for my chemo, plus needles for the ever delightful peripheral blood tests. Also the line has been a part of me, not one that can be easily hidden or ignored since it’s been on my chest opposite my heart for 10 months and to be honest I can’t imagine it not being there! There are so many good things about it coming out though: no more worries about the infection, being able to wear nice tops again, not wrapping it up for the shower, not having to look at it coming out of my chest (which still feels wrong!) but most of all the closure. Like my final intense chemotherapy a few weeks ago, it is one of the milestones I have waited for and one of the keys to feeling normal again. In my head it feels like a confirmation that I am better because I don’t need it any more.

Anyway, the removal has been postponed for a week and the community nurses are going to test my blood a couple of times so we have a picture of what is going on. Hopefully everything will keep increasing in the next seven days so that Tuesday the 15th will be THE DAY!

I’m aware that I didn’t do a post to inform you all when I got out of hospital which was bad of me! You know from my last post that I wasn’t having the best of weeks, so ever since I got home I have been caught up in positivity and being free (the definition of ‘free’ being “sat in my room watching all six seasons of  Gossip Girl”). Just kidding, I have done a little more than watch Netflix, I promise. It was my grandma’s birthday the day I finally escaped from St Richards, so it was great that I could be home for a lovely family dinner. I’ve also met a few friends in the park, though my counts are on the way up I’m still not supposed to be around crowds of people yet so the open air is perfect.

In other news, since it is now July the countdown to my birthday has begun. 22 days to go!

I will keep you updated on the plans for the line removal next week,
sorry for leaving you in limbo and not telling you when I got out of hospital. I think I was subconsciously avoiding writing about it because I’d totally had enough and was putting it out of my mind!

Just Feeling Rubbish in Hospital

Today started off really well as I felt better and actually managed to shower, dress, apply make-up and put my wig on (one of the nurses said that when he saw me he didn’t recognise me, he thought “that must be Rebecca’s sister” because he saw a resemblance!). I ended up moving into a room with it’s own bathroom as my immune system is still down and I can’t have a bath with the line they don’t want me sharing a toilet and I should have my own shower.

I got to see the red arrows from a distance, craning my neck out of one of the windows. Not ideal compared to being in our garden at home where they usually fly right overhead though!

Then it took a turn for the worse as one of my old pains has come back again since I am run down and missed a few medications. This actually made me cry with how uncomfortable it got, so I had to speak to a few doctors and get some new pain relief and treatment going. One thing I have to try is an inhaler, I know it sounds ridiculous when you look at everything I have done to me but the thought of inhalers makes me so uncomfortable! I used to watch my mum and brother taking them and cringe.

Along with pain and tiredness I got very emotional and upset *queue ugly crying and nurses gathering* because I am totally frustrated with everything at the moment. I am sick of being in constant pain, feeling weak, being stuck in hospitals all the time (I know the phone numbers to both hospitals along with my ward extension numbers- a sure sign that I need a break!) and not having a normal life. This was meant to be my week of relaxing, recovering from chemo and looking forward to getting my line taken out but  instead I get to feel rubbish in hospital. To cheer me up the ‘play nurse’ gave me the wifi password and a stack of Disney DVDs to keep me distracted. If stuck in here all weekend I am having a Disney marathon by myself. I just finished How To Train Your Dragon (which I was pleasantly surprised with!) and am starting Frozen next, which one of the kind-hearted nurses asked her daughter to bring in for me!

I took quite a bit of pain relief including my good old friend Oral Morphine as well as some anti-sickness as I felt queasy and totally lost my appetite again mid afternoon. This has made me feel much better, the pain is at bay and I now feel comfortable and relaxed.

It seems they are going to try and get me out of here this weekend as a few of the nurses have said “hopefully won’t see you here on Monday!” on their way out. The anti-biotics will have to be tweaked around for that to work so we shall see. That would be brilliant though, I am so ready to leave!

Hot in Here

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!

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

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!).

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.

 

Home Again

Thankfully I managed to get home this morning, the redness and hives from yesterday have gone down but my hands are still slightly puffy which is ultra glamorous (not).

This wasn’t my ideal way to kick start the weekend but I am just glad it’s over and my symptoms didn’t get any worse. In case they did there were all sorts of drugs prescribed on standby, the doctor mentioned adrenalin at one point which made me worry as I didn’t think I was THAT bad, but then she said she didn’t want to give it to me as it would make me feel rubbish, mess around with my pulse and I wasn’t at that stage. I think she saw my discomfort as she was very reassuring, telling me not to stress and that everything was fine as long as I didn’t get any worse.

The nurses on during the day and night were all really lovely which made spending most of the last 24 hours in hospital a lot more enjoyable, it’s always nice when they make the effort to stay and talk to you. It makes you feel more like a person and not just their next patient to be dealt with! One of the nurses I had met on that first night back in August last year and she remembered the details such as what I was given on arrival (fluids and blood transfusions!) so it was really nice to catch up with her almost a year later.

I feel much better today but have to admit I am currently in bed taking it easy as I didn’t get much sleep what with itching in the night and waking up at 5 am for some unknown reason this morning!

Reaction

Hi all, today I had to come to St Richards for another platelet transfusion and ended up having quite a big allergic reaction to them. I broke out in hives and red patches all over my body, my face went hot and my hands have gone all puffy. It’s really miserable as I am lying here feeling itchy, shivery and uncomfortable despite the dose of piriton I was given. The doctor wants me to stay overnight as the reaction hasn’t gone down yet and I am not feeling right. The redness doesn’t come out as obviously in the photos as it was in real life but here are a couple to show you some of what happened, you can see the constrast of rash and normal leg and the redness in my face!

I’ve taken a photo of my hand and will take another tomorrow and do a comparison!

I’m going to try and sleep now and I will update you with how I am doing tomorrow.

Milestones and Melons

Wednesday brought a 9 hour long day at St Richards. I went in for a blood transfusion but ended up staying for chemo and platelets too. Each blood bag takes a painfully slow 3 hours to go through so by the end of the day I was going crazy from boredom and restlessness! After all that my levels didn’t even improve much, despite a big bag of platelets they went up by a grand total of…. 1. Really helpful!

The good news is that I only have three doses of this treatment block left! After that I will be waiting for my counts to improve so that I can have my line taken out and start my maintenance phase which lasts just over a year. I have spent 9 months counting down to this milestone and now that it is approaching I can’t quite believe it.

Now for an update in the nail art department, here are the watermelon nails I painted myself this week (I think I went a little heavy on the black ‘seeds’ though)…

 
… and as for my latest TV addiction, that would be Hart of Dixie; a show about a New Yorker called Zoe Hart trying to make it as a big-shot surgeon, who ends up living an unexpected life as a GP in a small town in Alabama. Cue red neck accents, founders day parades and endless love triangles… all very charming and American so right up my alley!

I am loving all the sunshine we are getting at the moment, but let me tell you the heat is a real nightmare for wearing a wig! If I walk anywhere with it on I soon begin to feel as if I am wearing a woolly hat, which is anything but pleasant in the hottest parts of the day! I do appreciate that it is a once in a lifetime opportunity (or I hope so anyway!) to see what I look like bald as many people will never have that experience (lucky them), but I’m getting pretty impatient for my hair to start growing back again. I’m hoping for curls.

Lets Get It Started

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

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!

Learning to Be Patient

Am happily back at home now and I had my last dose of antibiotics today. Hopefully that will hold off another line infection for the last big month of chemo, then it can finally be taken out! The microbiologist wasn’t worried about it affecting me after as she believes the problem is just in the line. Once it’s taken out it will be one less thing to worry about anyhow.

I still have no word on when the chemo will be under way. My platelets were only 45 on my latest FBC (full blood count) when they need to be up to 75 in order to go ahead. I’ve gone through a whole spectrum of emotions about this: from patient to annoyed, calm to angry. Honestly I have now given up thinking about it as much as possible. I have to accept that getting the full treatment is my priority and the chemo will happen when it happens. Plus I learnt early on that not much runs smoothly or swiftly in hospital! I’m taking it as a test of my patience, which is something I really need to work on! Even though it is unfortunate that it cuts into summer more now there is nothing I can do about it. That’s the way the cookie crumbles!

Now, do I have any Zumba fans out there?
(If you don’t know what this is, it’s like crazy dancing for fitness and it is great fun!)
If you like Zumba and would be up for raising money for the Sussex Snowdrop Trust there is a charity zumbathon on Sunday 1st June from 10am to 12 noon. The venue is Oving Jublee Hall, High Street, Oving, PO20 2DQ and tickets cost £12.50 on the door.
The Snowdrop nurses have been a huge help in my journey. Whether it is taking bloods, just chatting or providing vouchers for petrol (the constant drives to Southampton were eating up an insane amount!) the nurses have been professional, supportive and above all caring and kind. The charity deserves every penny that will be raised through the Zumbathon, so get your kit on and join in if you can! They have asked if people could wear the colours of the charity, green and white, but have said it’s not a problem if you’d rather not. I’m really hoping I’ll be able to go but it will be dependent on blood results and chemo.

That’s all from me!

Hospital Again!

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!