Tag Archives: hospital

The Course of Hospital Procedures Never Did Run Smooth

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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!

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Just Feeling Rubbish in Hospital

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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.

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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

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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.

Reaction

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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!

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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.

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!

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!

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!)

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!

Chemo Finally Starts, Plus Some Stir Crazy Ramblings

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I know all these updates and changes of plan that I have been posting recently have seemed a bit absurd and discombobulating but I can finally come to you today with my official treatment plan!
My current doctor (his name is Charles for future reference) told me that he has written up all my drugs for the next month which is very efficient and good of him!
Earlier on I had a lumbar puncture which means that there is currently a drug called Methotrexate happily floating around my spinal fluid and preventing any leukaemia cells from growing in there. Tomorrow I have two doses of IV chemotherapy through my Hickmann line and Friday brings the lousy lower back injections but thankfully after that I will be free until next Thursday!

I’m hoping that in the space where there is nothing happening they will ship me off home again for the weekend or at least grant me some day leave so I can go for a walk in the New Forest or a spot along the docks in Southampton we found once.

My immune system is currently at 7.8 neutrophils which is well within normal range and still so high that I haven’t got used to it so I’m currently feeling optimistic that it won’t drop too fast and I won’t be stuck in my prison cell too much!

Today everyone seems to be feeling a bit tired and listless which makes us good company for each other, when our moods coincide we know how to be friendly but not get on each other’s nerves because we all understand how the other people feel! I think these days are worse for our relatives as they don’t know how to cheer us up or that actually sometimes we just want to be down and lazy and can’t help being snappy at you!

I’m currently writing letters to people to alleviate boredom and feel more creative so if you’d like some correspondence (well really just me rambling on about nothing and doing some truly horrendous sketches) please go to the “ask me” page of my blog and fill in the form with your address as it will be emailed straight to me so no one else will see it and you’ll be giving me something to do! Even if you think I don’t remember you or it would be weird- trust me it won’t! It’s really lovely for me to see that people read the blog and care, some of my most appreciated messages have come from the most unexpected sources so don’t doubt how much even the little things mean!

Hope you are all enjoying the Easter holidays and don’t eat too much chocolate…
who am I kidding there is no such thing as too much chocolate. Stuff your faces!

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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.

Misusing Wheelchairs and Winter Outfits Cancer Patient Style

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Making Excellent Use of A Wheelchair

Making Excellent Use of A Wheelchair

looking absurd walking through the hospital!

looking absurd walking through the hospital!

I’m now back in the hospital and have just eaten dinner with my lovely Godmother Maria.
Leaving home was difficult and involved holding back a few tears but as Maria and mum’s friend Jo were there I was really cheered up and didn’t have time to dwell on what was coming! It gets easier the more I go back and forth.

I am going to attempt to do my own nails tomorrow as my aunty is on a weekend away, so I will post them if they look any good!
By the way you can click on the photos and enlarge them in case you had been trying to squint at them- I had to teach my technologically challenged mum that this weekend!
Tata for now 🙂

General Nonsense You May Find Interesting

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Hiya all!

I hope you have had a good weekend! I definitely have- I’ve seen some great people and been given EVEN MORE lovely presents! At this rate I will have nothing to ask for at Christmas because people have been so generous!
Speaking of gifts, earlier this week Ed presented me with these (which he no longer needs as he is not on a neutropenic diet) …
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He got them as his mum works for a school and they order them for the canteen there anyway, I think us “neutros” are not supposed to use ketchup bottles because it lets bacteria get in and possibly bacteria grow on it when the top gets all manky!

Like Ed, I have become one of those patients whose levels are consistently low- so much so that it interrupts treatment such as LPs. After dropping to 11 I had a transfusion which took the level up to 30, however I then dipped back down to 13. These are not at all good levels for the LP (they want my platelets at 80) so I am having two bags of platelets today and one is on reserve in case they drop again in the next 24 hours.

My next LP is scheduled for 11.30am tomorrow. I will let you know whether everything goes to plan or not!
Earlier I had a lovely chat with Yvonne, the specialist nurse for the TYA unit and C6 the adult unit (and accidentally ended up spilling my life to the poor woman!) First she got me very scared- asking about Daniel having a blood test to see if he is a match for me if I ever need a bone marrow transplant (BTW DAD/DAN IF YOU SEE THIS DON’T FREAK OUT, ITS NOT LIKELY TO HAPPEN AND I WOULDN’T FORCE YOU IF IT DID COME ABOUT!) and then she got me very excited by saying that her and another nurse are going to ring chichester paediatrics to see what parts of my next block “Escalating Capizzi” can be done at St Richards, so that I could be LIVING AT HOME! Somehow I think the doctors are going to be reluctant to allow it but that would be reaaallly good if they did! I do find the idea daunting though- I’m so used to being here and I can’t imagine what it will be like being home again for an extended period of time but on chemo too. It’ll be another big life change to adjust to, but I’m sure it will work out fine!

Anyway, I am now eating Heroes and mulling over whether to watch I’m A Celebrity or Fear of Flying: Caught On Camera at 9! Before i go, here’s this weeks nails…
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Today’s Biopsy

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I just had my second non sedated bone marrow test- it went fine! Thanks for all the prayers and thoughts, I know they are what is getting me through this all so smoothly!
One part of it was more uncomfortable than my previous experience but like the machine I am I said he could just power on- handled like a pro if I do say so myself haha!
So tomorrow I have my last dose of Vincristine, which marks the beginning of the last week of treatment in the ‘Induction’ phase. In this last week will they be tapering off the steroids and I don’t have to have the other drug Danorubicin. I can’t believe the first segment is almost over!
After that week ends it is a waiting game; waiting for the results of the bone marrow test to see what the next treatment regime will be and monitoring to see if my levels increase enough for some time at home before the next phase called Consolidation starts.
Ciao!