Thankful for the Good Days
Day + 237 Blood results (05/0815)
WBC:3.70 Hb:93, PLT: 146, NEUTS: 2.95
I’ve been out of hospital for a week now and it’s nice to be home. I found hospital really stressful this time. Mostly it was the needles but I think also because I felt like I was on the way to recovery, and I am but it felt like a massive kick in the teeth to be back in there. It really upset me and made me feel down, hey that was last week I’m back home now and I’m really thankful for the “normal” days I get. I remember there being a point when it all got on top of me so much, a day in hospital soon after transplant that a hormone doctor came in to my room to tell me casually I have some raised levels that indicate I could have a brain tumour (luckily I don’t) I was so upset, that was the icing on the cake and a bit too much to deal with so I called my mum in a mess. I remember telling her I wish I could just have a week off, no day was ever easy and I just needed a break to deal with all of this, hence when I think about how lucky I’ve been to be able to do the things I have been doing for the last few months I am extremely grateful.
So the rest of my time in hospital was ok with my Picc Line in. I went for a breast scan as I always do every time this flares up and this time they decided as it was the fifth time I had had it they would try taking a sample from one of the inflamed milk ducts… I’m sorry what! You wanna stick a needle in my boob and suck stuff out….with a needle….. Ummmmmm…… “Don’t worry we will do it under local so it won’t hurt” …yay….two needles in my boob! Well to my surprise I actually let them do it, no numbing cream or anything! I must have looked like a complete crazy lady as I spoke to myself all the way through it, muttering away how it was ok and how I could do it!
On the Thursday morning the councillor turned up back from his holidays, I told home “I don’t bloody need you now, I’ve been acting like an insane person for the last few day!” It was good to talk things through with him though, just how things are and how I felt and he reassured me that I am making a lot of progress with the needle thing compared to how I was when he first met me and it’s a great thing to learn coping strategies like I have. I know I’m quite honest about my fear of needles but it does make me feel a bit stupid. I’m aware it’s irrational and I’m aware no one likes them, I try and tell myself this but the thing about phobias is they are just that, a phobia, an irrational fear and I can’t change that about me, only learn to cope with it. In the afternoon after the “big Thursday meeting” one of the consultants came to see me and said they will keep me in on IV antibiotics over the weekend, “Noooooooooo, please let me out for the weekend, it’s my boyfriends birthday tomorrow and I feel fine!” To my surprise he agreed that as long as my scan came back ok I could go home!
So here I am at home, I got to go out for lunch for Mal’s birthday on Saturday, unfortunately I didn’t feel well Sunday or Monday but apart from being really tired now, I’m good. I went back to work yesterday and today I can’t keep my eyes open!
It feels good to be home so onwards and upwards from now on
My Needle Phobic Nightmare!
Day + 229 Blood results (29/07/15)
WBC: 2.95 Hb: 95 , PLT: 170 NEUTS: 2.20
My last blog may have stopped a little short as I hadn’t really finished writing it. It was meant to be inspirational but fell a little short of the amazing month I had been having and what can be achieved at only 7 months post transplant. I wanted to post it without mentioning all that has happened in the last few days to me, as I wanted it to be positive and these few days have been a needle phobics worse nightmare!
It’s been just over 100 days since my last hospital admission which in itself is a big achievement. I’m sitting here hopefully halfway though my most resent admission in a bit of pain but finally feeling calm after an extremely stressful few days.
I’m not here in hospital for anything I haven’t dealt with before, my stupid mastitis has come back. My transplant is doing well and apart from the normal worries there is for an immunosuppressed post transplant patient there’s nothing to really add to the list of concerns which is a great thing. Transplant is never straight forward, “it was a breeze with no problems after” said no one ever! it’s risky and there are always bumps in the road, this has been a bump!
I’ll start from the beginning. On Thursday I started to feel a bit of pain in my boob, I didn’t really think too much of it but called my team as it felt like the mastitis could have been coming back. I did however think it was highly unlikely as I thought that with the drugs to lower my prolactin level and getting the hormone tablet out my system, plus the fact that my last admission to hospital had been in April, still something didn’t feel quiet right. By Thursday evening although still not too painful I knew it was definitely on its way back and I was started on oral antibiotics with the hope they would kick in before the fever did. They did not!
On Friday I had a temperature of 37.8 most of the day and was in a lot of pain from the swelling, even though I knew I had to go in once it hit 38.0 I was still reluctant thinking “please please let these drugs work”. By the time the evening came the fever took over, my usual routine of throwing up, sweating, shivering and feeling dizzy had started. We drove to Kings for the fun and games to begin.
If you read the blog I posted yesterday (but had written before all this started) you would know I had my Hickman line (the line they plug all my antibiotics and anything else needed into as well as take my blood from) removed as it was no longer needed, I’m transfusion free, I hadn’t had a hospital admission since April and life was going great. Having your line out because you don’t need it is a milestone in your recovery. I had taught myself coping strategies for my weekly blood tests and although I would still struggle I loved being free of my line and I loved the showers that I could just stand under and not worry about getting my dressing wet (all 2 days I got of them!) and also I didn’t feel very attractive with wires hanging out my chest dangling around! that said my line was my best friend for a long time and played a massive part in my survival as well as making treatment so much easier but it was time for it to go now. To be honest this was the main reason I really didn’t want to go in to hospital, no line = lots more needles but an infection like this with a suppressed immune system like mine could easily kill me so it’s a no brainer really,.I hadn’t been though all the crap I have been though to let a swollen boob finish me off!
We arrived at A&E and due to the nature of my condition and the fact sitting in a waiting room full sick people would be very bad for my health, we are rushed into a side room, hooked up to heart monitors and blood pressure cuffs and I knew the next bit was coming… The blood tests for cultures, counts etc. Knowing that I will need IV antibiotics and knowing that when you insert a cannula first, you can extract blood from it for the tests (after that is all one way, in not out), I explain my issues with needles in my usual calm manner (haha ok maybe slightly crazed manner!) and asked if we could make sure all bloods were taken at the time the cannula was inserted. I must have either scared my nurse or he didn’t want to deal with me being a difficult patient (something I do stress I only ever am when a big fat needle comes out) as he sent a (I’m sure we’ll trained to do it but…) health care assistant in, of course that made me more frightened but credit where it’s due he put it in very well, bloods where taken and it was fixed in place really well. By this point I was really unwell and vomiting all over the place! Nice!!!!
Now in A&E they have one size cannula MASSIVE and one size needle MASSIVE! Just to make sure one fits all and does everything or maybe just to torture us! I had my giant cannula in and it’s all good. The A&E Doctor came in to speak to me and as my blood counts are not bad theses days and talks about sending me home as all I need to be on is antibiotics but oral should be fine (that would be nice wouldn’t it) I suggested he maybe spoke to my team before he discharged me as I would love to go home but very much doubt I will be! He came back 10 minutes later saying I’ve spoke to your team and “we’ve decided together that you should stay in” more like you’ve been told mate lol! He also said if you hadn’t had a transplant I would send you home, yeah… Really…. Thanks for that! I mean do you really think I would have come from the other side of London with a fever to an A&E department on a Friday night because my boob hurt a bit if I didn’t have any other health problems! After this another nurse came in and said “we need more bloods” oh my god! are you kidding me after me telling them to please please PLEASE make sure we get everything we need, I wouldn’t have minded so much if it was some extra special test (well that’s not true I would have freaked out anyway!) but it was the cultures for infection they had missed and tried to tell me it wasn’t standard it’s been added by request, yeah yeah, I believe you, strange how on the 20 odd other hospital admissions in the past year and a half they were standard now they suddenly are not! Anyway I manned up and took the MASSIVE GIANT painful needles that left me pouring with blood, scratched and bruised but it’s ok I told myself a cannula can stay in for 3 days and I’ve just got my morning blood tests to deal with and maybe one more cannula and it will be done, OK I got this, I can do it.
I got started on IV antibiotics through my cannula and lots of fluids. Eventually (about 5.30am Saturday morning) got transferred to a random side room on a cardiac ward whilst I waited for a room on one of my specialist wards to come up. By Saturday night I had moved to one of the haematology wards in a double room and had a really lovely room mate called Karen. I had managed to sleep for a few hours, my temperature was under control and it was all ok for now, I noticed my IV infusions had felt slightly sore when they went in but just dealt with it and carried on.
Sunday mornings infusion had really started to hurt and the Sunday afternoon one was more than I could bare, my veins were burning with shooting pains running along them and my hands where tingling, something wasn’t right’ the infusion had to be stopped and the cannula taken out after only a day and a half which obviously meant another one had to go in, still positive thinking… Ok I got this, I can do it.
This is where my real nightmare began, before my night time infusion the nurse identified a good vein that hadn’t all ready been damaged with massive needles and I prepared myself with my numbing cream, she came in I went though my “rules” (poor nurse!) and we put the cannula in… Then we took the cannula out, apparently my vein had “burst” sounds delightful hey??! So that veins gone now time to find another one, she found a good one in my hand, after a bit (and maybe a bit more!) of crying on my part. I prepared myself and we put it in my hand, cool I have done it, it’s in what a relief time to give it a flush through….. Oh no, it’s not flushing my vein has “popped” again… Um how gross! Please let this next one be third time lucky, after a lot more sobbing and crying we finally managed to get it in, it was in a very uncomfortable place on my wrist but it was in and as an added bonus as it was now gone midnight. I had my morning bloods taken through it too, saving me the stress of the 6am blood tests, trust me, being cannulated 3 times in a row no one would like but for me conquering my biggest fear over and over was getting a bit much, I was by this point a nervous wreck with very sore eyes from sobbing my little heart out! Once again I told myself ok I got this, I can do it! (Maybe/just about/I hope) every lot of antibiotics that went though that cannula hurt me, Monday nights were the really painful leaving me in a lot of discomfort.
It has been decided that day that I was to have a Picc line put in and would probably happen the next day. A Picc line is a more permanent cannula taking the drugs or whatever goes through it to a big vein near your heart, just like the Hickman line I had just had removed but not quite as invasive, I did feel a bit disappointed after passing the “no line needed” milestone but unfortunately my veins were not holding up at all and hospital was becoming very very distressing for me, I have never felt so on edge whist staying in hospital and I really wasn’t dealing with it all that well, also all blood tests can be taken from this line.
I left the painful cannula in my now very tender and swollen wrist overnight on Monday praying to myself I would be able to take what was going to be a ridiculously painful infusion in the morning. I didn’t sleep at all that night as it was very sore and I managed the morning infusion after which the cannula came straight out, high five to me!!! I was so impressed I managed it because it was bloody painful!
Around 9am Tuesday morning my nurse came in and told me my line is booked for Friday, FRIDAY, BLOODY FRIDAY! And I thought to myself OK I DON’T GOT THIS ANYMORE, I CANT DO IT. I literally broke down like some kind of irrational crazy lady, poor nurse, there was no way I could take another 3 days of this, I just couldn’t, I needed a solution, I needed my Picc line, she went away and spoke to the doctor who must have pushed something through because when she came back in at 10.20am she said right be ready for 10.30am it’s happening!!! WHAT, OH MY GOD, now I have something else to be petrified of… The minor but very needle and vein related surgery I was just about to have under local anaesthetic obviously put in by needles!!!
I went down to radiology to have it inserted as it is done under ultrasound to find a good vein. I was a really scared, shaking, big mess by the time I got down there but due to a lovely nurse helping to keep me calm and distract me I managed to do it! I was given the local anaesthetic an incision was made and with some kind of probe was fed in and up my vein. I noticed some glances that were not particularly reassuring between the team, and I started having a bit of a panic inside, still I did somehow pretty much manage to hold it together. It had not worked and my vein had collapsed, more local was given and they managed to get it in to another vein (I was later told that also nearly collapsed but they managed to do it in time) it wasn’t a painful experience but I can’t say I enjoyed it really! It’s in now anyway, I feel like I’ve been punched in the arm and my wrist is still very swollen and difficult to move but at least the swelling in my stupid boob has gone down and isn’t quite as painful now and I’m sure by tomorrow it will all be a lot less painful.
Blood test and infusions are ok again now and pain free and in a few days I’m sure I will have no pain at all, who knew I had such bad veins for cannulas! Maybe I do have a genuine reason to be afraid of needles and it’s not just an irrational phobia from out the blue!
Sorry about this entry, I normally always like to stay on the positive side both for me and you guys who read this going though something similar but this has been a very hard few days for me to cope with, I did though, I coped, I got over another obstacle in this long journey us survivors have to go through and now I can rest for the rest of my admission without the stress and just get better as I said I GOT THIS, I CAN DO IT!
6 Month Biopsy Results and Getting my life back
Day + 221 Blood results (21/07/15)
WBC: 2.90 Hb: 103, PLT: 159, NEUTS: 2.21
UPDATE: This blog was written before my recent hospital admission but I never got a chance to post, I will write another in the next few days.
A lot has happened since my last blog, my counts have been pretty much steady apart from one blip related to my lady problems mentioned on my last entry resulting in me needing a blood transfusion but since then my blood has become stable again and grown on its own which is a relief!
I have had my 6 months bone marrow biopsy (lovely as always!). The results were good, I’m now 90% donor but my cellularity (the amount of bone marrow working) has dropped down to 40%, when I heard this I was really worried but my consultant assures me this is not a problem as I have what they call a “normal transplanted marrow” and my counts are ok. I was told that most transplant patients settle at a 40-50% cellularity so fingers crossed it will all be ok.
Next bit of news is I had my Hickman line out, I can’t say it was the most pleasant experience! If you have been following, you will know of my severe needle phobia, now don’t get me wrong I have had to improve… but I still struggle a lot! The removal took an hour, it was pretty much wedged in there. A year ago I couldn’t have even had the local anaesthetic let alone had this procedure awake but I did it, I hated every second but I did it! An hour of tugging and chopping, numb or not isn’t a pleasant experience lol. My stitches came out yesterday and today I had my first proper shower in a year and a half (I’ve obviously been washing but I haven’t been able to get my dressing wet so was hosing myself down) I stood under the shower with the lovely water pouring down on me thinking about how nice it felt, I suddenly burst in to tears, it all hit me, I’m starting to get my life back, I’m feeling less like a patient and more like Sarah, simple things I couldn’t do I can now do again, I was just so happy and a little overwhelmed!
Now my lines out all blood tests come out my veins in my arms like everyone else’s, for the last 4 weeks I have had my weekly blood test this way, even with my line in. I was trying to prepare myself as this is one of my biggest fears. I know with all I have been though when I say choosing to have a blood test out my arm rather than my line is one of the bravest things I have ever done, you would probably think I was mad but for me facing my biggest fear like that is a huge achievement! I do feel a bit sorry for anyone taking my blood as I have “rules”, firstly I still use numbing cream, I don’t and never have found needles painful BUT I have discovered that if I don’t feel them going in and don’t look I can just about deal with it! I tell the nurse to get everything ready and when they have found a good vein and are good to go to tell me they are ready but don’t do it till I say “ok you can do it” (I say it straight away, I don’t make them wait!) I also don’t want to hear a running commentary on what’s happening “it’s in the vein now” “the bloods coming out” come on people, what are you trying to do to me!!! The last rule is please don’t say “sharp scratch” as a warning, I’ve never understood this… Why would anyone stint the arm out, needle phobic or not and want someone to tell them “I’m now gonna scratch you sharply, brace yourself!” I mean what the hell!
I also started back at work, it’s only 4 hours a week, which sounds easy but it’s really tiring, being a hairdresser is demanding, your perform, you stand, you create but… I have loved every second of it, I feel like I’m back in my natural environment and although I have no plans set to increase my hours yet I can’t wait until the day I can!
Well that’s the main news, let’s hope it all continues and life just keeps on getting better and I get to stand under as many lovely hot showers as I want!
6 Months post Transplant
Day +179 Blood results (09/06/15) WBC: 3.84, Hb: 112, PLT: 220, NEUTS: 3.18
Day +185 Blood results (15/06/15) WBC: 3.45, Hb: 97, PLT: 182, NEUTS: 2.84
So here we are just over 6 months post transplant, and things on the whole are going well.
In the last couple of weeks a lot has happened in my world, let’s start with the biggest news… Drum roll please… I’m going back to work (sort of!) I’m so excited, the doctor has given me the go ahead to go back to work for half a day a week!
For those of you that don’t know what I do I’m a hair stylist, for over 10 years (minus the last 16 months) I have worked in a salon in my home town. It’s a very busy and quite large salon with over 20 team members so you can imagine the amount of people that can be in the same space when all the clients are in as well. This is a very scary and daunting thought for my new, still suppressed immune system so we have put a plan in place to only work when the salon is quieter (I have picked a Thursday evening) and my clients must be pre-warned if they are sick in any way then we must reschedule them or book them in with someone else. I’m also having slightly longer appointment times, giving me an hour instead of the usual 45 minutes to do a client so fingers crossed it will all work out well. Now for those of you who maybe read this blog who have not suffered a similar illness or undergone similar treatment, especially hairdressers you will probably be thinking well that should be easy enough, I thought the same but the other day I went to the salon for half a day to do one of the training evenings (there’s me in the picture can you see me!) , I loved it, I felt at home, like I had never left, I felt like me again but by the end I was unbelievably tired.
Fatigue is still an issue and a frustrating one at that, when I wake up in the morning (on most days) I feel normal. If I have a few days that I’m busy my body just wants to sleep. I have and most probably will always have (as this is not a new development), had a tendency to be a bit hard on myself, I push myself to my limits. My limits now are very limited! In the last week I have had a trip to the sea-side, have visited 2 different hospitals, a lovely lunch out with my parents and a lovely Sunday lunch with Mal’s parents as well as half a day at work and given my Mum and Mal a haircut to make sure I remembered how lol (don’t worry if your one of my clients reading this, it was like riding a bike 😉 so it goes without saying that today all I am doing is sitting in my sofa!
I have also started some group therapy, it’s provided by Kings College Hospital for people that have been through major events linked to blood diseases and cancers such as chemotherapy and transplant. Phil leads the group and we are learning ways of dealing with fear. It focuses on the fear of relapse and teaches Mindfulness techniques as a way of coping, to be honest I’m a bit crap at it and feel a bit stupid when sitting in a room full of other people doing it but I gave it a go last night as I was finding it hard to relax and it did help.
GROSS BIT COMING UP, now I’m purely writing about this for any of you suffering out there and wondering what happens, it’s about girls problems so if you don’t wanna know skip to the next paragraph lol. You may have noticed my blood climbed back up nicely after being under the weather a few weeks ago, my platelets hit 220!!! A record by far then dropped again the following week. The reason for that is that they stopped the hormone I was taking called Northistorone, this stopped my periods and they have now put me on a normal contraceptive pill. Now in theory this in the long term should be fine, the reason for stopping the Northistorone is for 2 reasons, 1) I am producing blood cells now and unlike before should be able to cope with a normal period, 2) they thought (although clutching at straws) the Northistorone may be causing my reaccuring mastitis. Well it has not been pleasant and for the last 2 weeks I have lost so much blood, I mean sooooooo much it’s been hard to leave the house at times, so today I have been put on Transimic Acid which is a drug to stop bleeding, fingers crossed it works as I am feeling drained. The doctors hope it is just a withdrawal bleed and won’t happen every month, we will know next month!
So really everything is going well at the moment. It’s never simple, there are always obstacles in the way but I just over come them as they pop up! I’m having my 6 month Bone Marrow biopsy next week and for some reason this time I’m petrified, not even so much about the results just about the procedure so wish me luck.
That’s all for today, have a great weekend people
Getting Better each Day
Day + 171 Blood results (01/06/15)
WBC: 3.40 Hb: 99, PLT: 175, NEUTS: 2.72
Good morning everyone! I thought I would update you on my latest progress, since my last blog a month ago I’ve been doing quite well, in fact I would say I have been doing very well for someone who is just 6 months out of Stem Cell Transplant.
I have managed to stay out of hospital for 7 weeks as an in-patient, only going in for my weekly hospital visits for blood tests, that is about double the time I have managed since diagnosis! In my last blog I mentioned the BK virus was back and I would start treatment the following week, well I did, I had one, I felt like crap and the next day they found the blood results (as they take a few weeks to come through) to be negative and that instead I had a urine infection causing the same symptoms! I was so happy, the treatment for BK really does make me feel like absolute rubbish for days so…… I was given a two week course of oral antibiotics and it cleared up, amazing, my first infection treated at home, no hospitalisation, no temperature spike! I was so happy not only did I not have the dreaded BK again but my body had managed to fight and infection without the use of IV medication!
Unfortunately I have felt rather unwell for the last two weeks at first I couldn’t put my finger on it but when you have lived with a serious illness for a long time you become very in tune with your body, then my glands started to swell and a few days later I couldn’t get out of bed, “here we go” I thought, I had my hospital bag packed and my temperature had slowly been climbing over the day, I had phoned an spoke to one of my doctors at Kings College hospital to find out if the protocol was the same now 6 months in and they said as I am still very heavily immunosuppressed that it was and if I hit that magic 38 degrees I would need to go to A&E to be admitted… The night went on 37.7, 37.8, 37.9 then….. 37.9, 37.8, 37.7 back down to my normal 37 degrees by the morning! Yay no hospital!!! I will have to have swabs and tests done on Tuesday when I go for my clinic appointment but it seems I have just picked up a cold/viral thing on my travels and although I’ve been pretty ill with it which is not surprising as technically I have never had a cold before (SCT wipes out and resistance you had to any germs/cold/illness you have had in the past including all your injections you had at school like TB & MMR and your resistance to childhood diseases such as chicken pox) it’s a brand new immune system, like a new born babies but also suppressed by drugs so it doesn’t work as well!!!!
Well that’s the rubbish (well not so rubbish bit) the rest has been great, I still battle fatigue from time to time but Ive been pushing myself to see what my body can do, this is a little depressing as anyone who knows me knows I’m way to hard on myself and don’t accept limits very well, so realising my body is weak is not easy to accept, I’m trying to build up strength by exercising. and just doing a bit more but sometimes (most the time) I push myself too far and spend days falling asleep on the sofa, that said last year I couldn’t even walk 5 minutes without needing to sit down, this year is a different story!
My favourite thing about having neutrophils is that I can eat what I want (as long as I don’t get food poisoning) and I do! I love food, I love eating out, I love cooking, I just love stuffing my face with tasty food, I eat healthily normally (as I think my body deserves it) which is easy to do now I can eat fruit, salad, smoked fish, seafood and other tasty foods again but don’t deny myself treats, I figure I deserve it! If you follow my Instagram (follow my instagram by clicking here) you can see the pictures from it on the right of the screen you will see how much I love to cook and eat! I would love you to follow my Instagram, it’s my journey to recovery in picture!
Due to my love of food and my new blood count I have been eating out and socialising A LOT! As much as my body will allow! It’s no wonder I picked up a cold! As well as many lunches/dinner with my wonderful friends and family I have been to Brighton for the day for my birthday and even had a Friday night out in London (well I managed to stay out till 10pm lol) here’s a few picture of us out and about.
I have a consultants appointment on Tuesday and I am even planning on speaking to them about going back to work for a few hour a week, I would love that so much, I’ve seen my friends from work a few times recently and as well as missing my actual job I really miss them too so fingers crossed they will give me the thumbs up.
Anyway that’s it for today speak soon xxx