Neutropenia is a stronger force

Well I know I haven’t written for a while but I was going to write about the wisdom teeth pain I’ve been having. Last treatment my wisdom teeth hurt a little bit but this time it’s been a lot worse, it’s been a chronic pain for 4 days and I’ve been taking paracetamol like they’re sweets.

I came home from Di’s yesterday and felt really cold, so I went to bed and still couldn’t warm up so I had a nice hot bath. That felt amazing but I felt a bit dizzy afterwards so went back to bed. After a while I got too hot so took my temperature and it was 39 so I rang the chemo helpline and they said to come in.

So I had to ring my mum to ask if she could take me in. This was around 9pm and by the time we got in it was 10pm. A friend of the family had also come in and she looked awful so was a bit shocking.

I had my bloods taken after about an hour and had to wait about 3hrs before the doctor came to see me. I felt rough as a badgers bum, my teeth were killing me and they couldn’t give me anything.

My temp had come down to 37.5 so a lot better. I thought I’d be ok then.

Around 1am I was told I would have to stay in as my white cell count was so low. I was gutted as I wasn’t expecting it.

Around 2am I got taken up to the ward and there was some emergency going on so nurses were running left right and centre so I was shown to my bed and then had to wait 40mins before they came to check my vitals. My temp was still low and they gave me some painkillers so eventually I settled in to try to sleep.

Hmmm that didn’t last long, snoring, coughing, footsteps and talking kept me awake most of the night. They woke one lady at 5 and then the rest at 6.

A few hours later I finally got some painkillers as my teeth were killing me. I’ve had antibiotics (on my second dose now) and have been on a saline drip for the past 4 hours.

The doctor examined me and checked my teeth, she’s going to refer me to the dental team so they can see what’s happening with my teeth. They mentioned X-rays but I’m still waiting to hear on that.

So I may be in for a few days, I’m not sure. The nurse said its likely while my neutropenia is still low I will have to stay in.

I’m hoping to be out in time for sat, as I’ve organised a Christmas Party and will be gutted if I have to miss it 😦

Neutropenia 1 Me 1

Well after my last post I was waiting to see if my white blood cell count would come up enough on Monday after a re-test to be able to get my 2nd Chemo treatment, so after a weekend of isolation and keeping myself to myself in my flat and feeling pretty miserable I might add lol!  But it worked!

Apparantly my white blood cell count was only just acceptable, but I had my 2nd treatment on Monday and so far the new anti sickness pills that they gave me have done the trick. I havent been sick at all so far, the pills I was given are called “Emend” which is an “aprepitant” which apparantly blocks the nausea and vomiting signals from the brain to the stomach.  Well fair play its worked so far, I had my last tablet yesterday which lasts 24hrs so at 2pm today it should have worn off and then we will see what happens!

I had a long day on Monday as I had to arrive earlier than planned to get my blood test re-done, this was done very quickly but then I had to wait about 4 hours until I actually got my chemo treatment and about 2.5hrs of that was waiting to see if the blood tests were ok.  For some reason I was taken to the Private Wards to have my chemo, which was nice as I had a private room, a tv and a nurse all to myself.  Apparantly if they have any space they try to take some patients from the normal system to speed things up so I think I was just lucky that day.  It did make the process go a bit easier being able to watch tv and chat to the nurse.

Since then I havent really done very much, today is my first day of actually getting up and being dressed rather than lounging in my pjs.  I think I have scared a few people with my balding head, so if I hear someone coming, I try to cover up, but there has been times when I havent had a chance lol.

In all Tuesday wasnt a bad day in health terms, I was up and about most of the day, I did have stomach cramps and diahorrea for a short time, but thats hasnt come back thank god.  Weds I did feel pretty nauseaous for most of the day, it would come in waves and some stronger than others.  Sometimes eating or drinking would make it go away and other times it would make it feel worse.

Alot of people warned me about having a metallic taste in my mouth, I dont think I have had that yet, but I have lost a lot of the taste when eating or drinking, everything tastes bland or not what I thought it would taste like.  I made a whole load of soups at the weekend and I flavoured them to match my taste, but god knows what it will actually taste like for someone with normal taste 😛

Its flipping cold out, so my poor little baked bean head is feeling it a bit, woolly hats all the way for me I think!   Its my works Christmas party tomorrow night, it will be strange seeing everyone as I havent seen them in a month and I will be going as a baked bean head, I could wear my wig, but I am not sure about it, if Di can make it, then I may feel more confident wearing it, as I need help getting it to look right, if she cant make it then I will wear a bandana and hope it looks ok.  I am sure it will get a few good meaning slaps along the evening 🙂

Well thats it for now, cant think of anything else to write 🙂

Neutropenia 1 Me 0

I had my blood tests on Friday to find out how I was doing and if I was ok for my second chemo treatment (tomorrow/Monday) and I was gutted to learn that my white blood cell count was too low, aka neutropenia.

I was advised to come back on Monday morning early, have my blood test taken again and see if its improved. If not then my chemo treatment will get put back.

The Dr advised I take it easy over the weekend, stay indoors, avoid anyone with coughs & colds and avoid public places.

BOOM there goes my weekend plans with Di. 😦 Gutted! I walked out of the hospital and got into the car and burst into tears. I was so looking forward to seeing Di, we had planned on going shopping in Birmingham, a family meal on Saturday and I also had my best friends sons 8th birthday on Sunday late afternoon.

All of that had to be scrapped 😦 I couldn’t go to Di’s as her son had a cold, she couldn’t come to me in case she had her sons cold. I couldn’t go to Harrison’s party as a load of kids and family would probably be a cold/germ haven.

So I took the decision to isolate myself for the whole weekend. I kept myself busy Friday evening and Saturday daytime. Saturday was a making soup bonanza. I made chicken & vegetable, roasted vegetable and cream of mushroom soup. I had a good dollop of each and thought they tasted yummy.

But afterwards I thought that my taste buds are shot to pieces, what may found good to me may be disgusting to normal people lol. No one else has had a chance to try it yet thank god.

Saturday evening I admit I struggled, I knew Di had her family coming round and I knew she would have a blast with them as they are a very entertaining family 🙂

I watched tv but couldn’t settle, I felt stir crazy!

Sunday I woke with yet another headache. A tight band around my head. I got up and pottered and soon felt worse and was sick a few times so went back to bed.

A few hours later I felt a bit better so tried my chicken & veg soup. That stayed down so I rested up and then packed to go to mums in case my treatment went ahead.

I called in to drop Harrison’s birthday present off and found that hard as I stayed in the hallway and waved through the door at the family but didn’t go in so Reece, Sarah & Harrison came into the hallway. It was lovely to see them, I got a bit upset talking about the weekend and tmw. They were lovely, I couldn’t ask for better friends, they rock!

I didn’t stay long so came on over to mums where I’ll stay for a few days if my treatment goes ahead.

I admit to finding this weekend hard, it’s the first time I have had to miss out on something that’s hit home so much how even though I have felt ok pretty much my immune system is shot to pieces and I need to be more careful.

Ok lesson learnt, but please let my treatment go ahead else this weekends isolation will have been in vain xx

Baldilocks and the no hairs

Well today I finally took it all off. I am now an official baked bean head 🙂

I was starting to get bald patches in my hair and even though it was only a few mm’s long I was still able to pull it out. I found I was doing it without thinking and it became a bit of a distraction. So this morning I clipped it as low as it could go then used my razor to take the rest off.

I can’t say razoring it off was particularly nice, it hurt a bit so god knows why people do it out of choice. I don’t know if I will need to do it again but I am hoping that’s it now. The dark hair at the back of my head didn’t seem to be very loose, where as the top came out no problem. So I would probably end up with a patch of hair at the back of my head, would that be classed as a mullet lol.

I sat in the bath with the shower on, slowly razoring it all off, it took a while so probably looked like a prune when I came out 🙂

I have moisturised and polished my head so it’s gleaming nicely, ready for the rubbing I am sure it is going to get lol.

None of this has upset me, the initial feeling of the hair coming out did upset me, actually seeing it come out was wierd but I controlled this side of things and its felt better. Must mean I am a control freak ha ha.

So when I look in the mirror I keep wanting to sing an Albert Finney song from Annie….. Together again… Like birds of a feather… Do doo do doo

I now have Winnie the wig but will only wear her for certain occasions, if I’m going somewhere with people who know me they will know what’s happening so will only wear it for do’s when I just want to blend in and be normal for the time lol. Normal isn’t me that’s for sure lol xx

Edward Scissorhands

Last night my head was tingling and itching like a good un and it was driving me crazy. My hair didn’t feel like my own, it felt dead but up until tonight was still firmly attached.

Today wasn’t so bad so I decided not to shave my hair off. Well I did until I noticed it was starting to come out. I ran my hand through my hair and about 6 hairs came out. So I then proceeded to pull at various areas around my head and in certain places 5 or 6 hairs came away easily, others needed a firmer pull but seeing this hair in my hands had an unexpected result on me.

I cried…. I really didn’t expect to get upset about it, I knew it was coming and wanted to see the process but now it didn’t feel nice at all. I spent the next half an hour pulling various areas looking for more weak spots. Obviously I found some but other areas were firmly attached so it hurt pulling them.

I told Di what I was going to do, I think she wanted me to wait a few more days so that she could do it for me but she understood I’m impatient and just wanted to do it.

Soo I stood in the bathroom with the clippers in hand and 10 mins later its all off. I am not sure what grade it is, a 2 or a 3? It feels more manageable now, I can’t pull it and when it falls out easily it will just be short little hairs.

So I swept it up and said goodbye:

I’m really sleepy now so will write more tmw xx

Wigtastic

Well I’m now well into my second week after treatment and this week is my most vulnerable apparently as my white blood cells will be at their lowest so I’m at most risk of catching an infection so am supposed to avoid people with coughs and colds etc. hmmmm that’s hard when you have hospital appointments and funerals to go to!

Well after a rough few days this week the last few days have been easier. Friday last week and the weekend felt good, I was relieved to feel ok then as it made me think its just 4 days of feeling like its hit me and the rest I can cope with.

I have started noticing little side effects such as:

Sore Mouth – It feels like I’ve burnt the roof of my mouth, I have that rough sensation on the top of my mouth and it has spread around my mouth. Where my wisdom teeth poke through a bit at the back have got quite sore too. A good mouth wash (alcohol free) helps with this.

Not sleeping – I have found it hard to sleep on a few occasions, my body felt like it was on fire, I was so hot and twitchy that I was up and down like a yo yo for three nights on the trot. My mind would race and my imagination was running wild. I found if I watched tv before bed my imagination would carry on the film in my head, not always in a nice way lol. My imagination is frickin wierd 🙂

My arm where the chemo went in has been really sore since Friday, it feels like the vein in my arm is really sore and hurts if I lean on my arm. I remember the nurse saying one of the drugs is really harsh on the veins so guess its that. I guess that poor vein/artery is in for a real bashing! 😦

Hair – well it’s still there, but it’s changing. It’s prickly and feels like I’ve used a strong shampoo that makes your scalp tingle. It’s not behaving and won’t style as I’m used to and feels flat.

I feel like I have a cold but am not sure if I actually have a cold or it’s the side effects as I know I was warned it made you feel like you had the flu/bad cold. Time will tell I guess 🙂

Well that’s it on side effects that I can think of, they’re not too bad, I can cope with these. 🙂

Yesterday I went for a wig fitting and after being undecided about having one or not I did end up buying one. It’s very realistic and I couldn’t get one to match my usual style as my hairstyle is too short but this one is close enough 🙂 I’ll add a photo in a bit as the one I took yesterday wasn’t very good 🙂

Well that’s all folks! Have a nice day! 😉

A Few Days On – Post First Chemo

Well I had my chemo on Monday and reported all was ok in the afternoon and in most respects it was to be fair, but I have to report the side effects that happened after.

Around 3pm on Monday I suddenly felt violently sick and was so, this seemed to come out of the blue a bit so caught me on the hop slightly, my Dad had come to visit me so was a bit of a “there one minute and gone the next” lol.  After that I pretty much continued to be sick regularly until Tuesday 7:30pm when I ended up going to the Out of Hours Doctors at Cirencester Hospital after speaking to the chemo helpline and they advised I should call the out of hours and get given an anti sickness injection there.  Once this was done (into my arm) I started to feel better.  I was able to drink and keep fluids down as I was pretty dehyrated by this point.

I managed to eat some toast and lunch the next day followed by a hearty supper, so everything was looking up.  After the meal Mum and I watched “Water with Elephants” the lovely movie that Di had lent me.  During the film I kept thinking that it was going blurry so was squinting and rubbing my eyes but put it down to being tired.  I went to bed feeling ok and was looking forward to heading home on Thursday as I needed to sort out clothes for a family funeral on Friday and also I had a family party with Di on Saturday and I felt it was time for me to come home and check my post and leave Mum and Ron in peace.

I got up early, packed my bags and started wandering out to the car and felt all dizzy and my vision was even worse, I carried on for a bit but after a while I told mum my vision was blurry and basically got upset as I so wanted to be able to nip home and retain some normality and Di had said she wanted to pop down and see me for the evening.  Mum persuaded me to stay put for longer and not to worry.  So I rang the chemo helpline and they said it was probably down to the Dexamethasone anti sickness drugs that I was on as that could cause blurred vision.  Knowing that was a huge relief, especially when she said once I stop taking it (Thursday night was my last dose) it should start to wear off.

Thankfully that appears to be true, so now I am sat at home having ironed my clothes for the funeral this afternoon and have put the heating back on as its frickin freezing in my flat as I turned it all off while I was away.  So I shall return home tonight then head to Di’s on Saturday in the day light as I will feel safer driving then.

So thats all for now folks xx

One down five to go!

Well chemo day has finally arrived, luckily I had a 9am appointment so it wasn’t too long to wait before heading off to Cheltenham Hospital to the Oncology unit. We got there in good time and clocked in. Oncology patients getting chemotherapy are given a pink permit for the car park so you don’t have to pay for your car parking. There are assigned parking bays for oncology patients and after getting it wrong on Friday, (I did not have a pink slip then!) we had the knowledge to get it right this time.

We sat in the main waiting room which was good as I could get a phone signal there, so sent a few messages until we decided it was too draughty so moved closer to the oncology unit. Once I was in there is a communication blackout, no signal which I’m afraid I don’t like.

I made the Dr laugh last week as I asked if the chemo rooms had wifi and he said I was the first person to ask that 🙂

Just after 9 a nurse called my name and I recognised her from Gloucester Hospital, she had treated me after one of my surgeries. She apologised and said that my meds hadn’t come down from the pharmacy yet and she was hoping they would be here at 9:30, I said that was fine, she asked if I was nervous and I said “no, not yet!” She replied, “Good, you have no reason to with me” 🙂

At 9:30 she came out again and apologised saying that my meds still hadn’t arrived, she was going to chase it up for me. So it was back to the waiting game and my game of choice was Angry Birds 🙂

I think it was just after 10 that the nurse came and found me, she said my meds were in and that she would come and get me in a few minutes. I was just in the little shop buying a “Buffet Bar”….. Note to self don’t buy it again, it wasn’t very nice and gave me really bad heartburn! I was also buying Mum a coffee so I went back and said we were about to go in.

I managed to shovel the buffet bar down as quickly as I could, (not a pretty sight!) and for those who know me, yes I did drop bits down myself!

Within a few minutes the friendly nurse was back and it was time to go.

I was taken into a room with 5 armchairs in, two people were already in there, attached to their drips and both were fast asleep. I was shown to my chair and a stool was brought over for mum so she could see what was happening.

I was told to remove the jewellery from my right arm and then she brought a big bucket of hot water and told me to out my hand in it. It felt lovely and warmed me right up. I could have stayed like that for hours but sadly it was removed and I had to dry my hand and then a tourniquet was strapped around my arm and the usual, clench your fist, now you will feel a slight scratch…… Hmmmm bollocks was it a slight scratch. Normally I don’t feel them going in, but I did this one, it wasn’t bad but I did wince a bit 🙂

I then had the cannula fitted and all the tubes taped to my wrist, the pillow, my hand, you name it. Then the drip was connected and this was the anti sickness drug, she warned me it could feel cold and to say if it got uncomfortable, oh boy was it cold! It was like getting brain freeze in your hand, so I left it for a while and then said something so she got a heat pad to rest over my hand and that felt loads better. She also warned me that this drug could make me feel like I am sitting on a hairbrush, lol that made me chuckle. Luckily I didnt get that sensation, so she let that go through for a while then injected a different anti sickness into the port on the tube. I did however feel like a space cadet and it reminded me of that fluffy blurry feeling when you have had a smoke or two….. Not that I admitting to doing that, I’ve just been told that’s what it’s like ok 😉

After that it was the red stuff, ok I’ll look up the real name…. epirubicin (ep-ee-ROO-bi-sin) or Ellence® (ell-ENCE) apparently this is pretty toxic stuff and can damage your veins, so they give it first so that your veins are nice and strong at the start and then the other drugs come in after and push it all through. Again this felt really cold and I had a slight tingling sensation in my hand as this went in. Se checked the cannula and could see it wasn’t going in quite right so made some adjustments and then it went in better. She put 4 syringes of this stuff in, each syringe was 30ml I believe so took a while to push it through as she does this manually. After this, I then had the 5-fluorouracil (5-FU) put in, there was less of this one but she said it was quite thick so took a while. The last treatment was the cyclophosphamide or Cytoxan® this was in a drip bag and went in over 15 mins. Once this was finished I was flushed through with saline, now this made me feel a bit funny, my nose started to sting and tingle and I sneezed quite a lot.

Then it was all over, it had taken around an hour, so that wasn’t bad 🙂

I felt a little light headed for a few minutes so Mum drove me home and I am feeling ok so far, the doctors said to drink a lot and keep my intake of fluids up, she didn’t mean alcohol though… GODDAMIT! 🙂

So that’s all for now folks, time to eat before my taste buds get corrupted and I can’t taste the nice things anymore 🙂 xxx

Getting Close Now

Well I rang on Tuesday to speak to my Oncologists Secretary as she had told me that I should hear within a week when my appointment with the Chemo Nurse would be so I did and was told that my appointment was this Friday!  She then told me that I had two appointments on Friday, one to see my Consultant and one to see the Chemo Nurse and then she said, I can see they have also scheduled in your chemo appt for Monday. I asked if she meant this coming Monday and she said Yes.  I nearly fell off my chair.  I had expected to have to wait another week or two.

OMG!

I have to admit I felt shocked, even though I really wanted to start the treatment, this short notice was unexpected and I had to try and sort out work and getting to my appointment.  Luckily work were really understanding as I had said I thought I had at least another week at work before anything happened, they were very understanding and said that I can do some work from home when I feel up to it, I can do what I want when I can, I have a project to work on that doesnt need customer input, so thats good, I can just plug away when my brain is in gear.

I quickly messaged my Mum and Di to let them know and also check that Mum was free for both dates, everyone was surprised at the Chemo starting on Monday and I am still trying to sort out transport etc.

Up until today (Thurs 8th) I have not had any form of communication from the NHS or Hospital about my appointments on Friday but have just had two final reminder texts that just says the date and time of my appointments not where or who I am seeing, so I am so glad I rang and asked otherwise I would have been up shit creek without a paddle!

I have been busy reading up on information about the chemo and hair loss, there is a special unit in Cheltenham Hospital for Cancer Patients to help offer advice and tips with hair loss etc. So I want to pop in there and see them tomorrow as they suggest seeing them before starting your chemo and tomorrow is the only time I have got to pop in there.

I admit I am getting nervous now, I’m glad to have my appointment and be able to roughly plan my treatment dates, I presume they wont be doing treatments on the 24th Dec so guess I will get put back a week but that takes it to New Years Eve, so who knows what will happen around those times, but I guess its not going to be party time for me!

I am going to try staying at Mums for the time immediately after my treatment and then hope to come home when I feel up to it.  Time will tell how it goes I guess.  All I know is that chemo effects people in different ways, there is no set reaction to it, so I am going to give it my best shot to be one of those who doesnt suffer much 🙂

Strong!

FEC It!

Dont worry I am not about to do a skit from Father Ted, I wish I could as it was very funny, but the title of this blog is due to findout what type of chemo I will be given whenever I start.

So I will be on FEC which is named after the initials of the chemotherapy drugs used, which are:

• fluorouracil, which is also known as 5FU
• epirubicin
• cyclophosphamide.

I had my appointment with the Oncologist on Weds evening and being the good time keepers that we are, we got there early as the appointment was 6:15pm so both Di and Mum were able to make it which was good as I wanted them both to hear what the Oncologist had to say, as its hard to take in a lot of the information when you are the patient and as I believe that Mum and Di are going to be directly affected its important for them to hear whats happening first hand, as it is difficult to pass on everything as your brain in like a goldfish or a Blue Tang Fish.

So we arrive on time and get told there is at least an hour and a half wait to see the Oncologist! Hmmmmm we could have got some tea after all!

I wont bore you with the wait, but eventually we got to see the Oncologist and she went through all the information I needed, most of which I already knew to be honest as I had done a lot of reading but it was useful to know what chemo treatment I would be getting.  She said I would get further info from the Chemo Nurse and I should get a call with an appointment date within a week, if I didnt then I should ring her secretary.

I think the appointment was useful to both Mum and Di, but I was hoping to get a date for my chemo really, but just have to be a patient patient 🙂 xx

(I started writing this last week and got writers block and its taken me over a week to finish it, by which time I have now written another post too! – DOH!)