Fec’d Right Off

So today was meant to be my last chemo session, but as I said in my last two posts I was worried that my white cell count wouldn’t be high enough and I was right to be worried. They were not high enough and they wouldn’t let me have treatment.

So I have to wait till next week now and that also means my radiotherapy dates will go back too.

I have had a little cry and was pretty pissed off but am calming down now, I can’t do anything about it, just have to hope I am ok for next week.

So no special celebratory sandwiches for next week, I made special sandwiches for mum and I to mark the occasion as mum has been to every chemo treatment I have had. I wanted this one to be special so packed a monster lunch with a monster sandwich with ham, cheese, turkey, mayo, tomato, cheese and pulled ham spread etc I was going for one of those American style mega sandwiches lol. Oh well it can be a special sandwich for International Women’s Day now lol xx

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Catching up after Chemo 4

Well I haven’t written for a while but to be totally honest, it’s taken me a while to want to write about my last chemo session which was number 4. Apart from it being a very very long day as we were in the hospital for 9 for mums eye appointment, we didn’t leave till near 7 and much as I love the nhs and all they have done for me, I don’t want to be there like that again.

To start with they had problems taking the blood samples as my veins seems to disappear and shrink at the sight of a needle now, so it’s a lot of digging and prodding and where as before I had no fear of needles or giving blood, now I get apprehensive which doesn’t help at all.

Eventually the lovely nurse got a vein and slowly my bloods were taken so I cold skip off or was it a run??? out of the bloods room. Then I had to wait a couple of hours to see the Dr. Now each time I have been to a chemo treatment I have seen a different Dr, most of the time I don’t mind this as they have been good and read my notes and see what’s been going on, this guy just rushed it through and I swear ticked ready for treatment before I’d finished explaining about the problems with my teeth etc. oh well at least I was going to stay on track with my chemo treatments.

So as I now had to wait about 3hrs before my chemo, mum and I decided to head to the Maggies Centre just down the road, we’d talked about going before but never made it. The good thing about the centre is you just need to tell reception you are going there and if they need to call you back they ring maggies and get a message to you so you don’t need to wait in the depressing and sometimes cold waiting rooms.

Maggies Centre was amazing, the building was architecturally beautiful and modern, so light and airey. They do this on purpose, as they know how depressing the Oncology waiting rooms can be, and it lifts the spirit. They have a main room with a big table in the middle so you can sit down and chat to other cancer patients, or friends and family. It’s open to anyone who has been affected by cancer and needs someone to talk to, or space to retreat to as they have little rooms you can shut yourself away in too. It’s a marvellous place and I will definitely go back.

After a few hours in there mum and I got hungry so headed back to the hospital to get some food. I had chips and beans and it took me back to being a kid and the birthday parties we used to have at primary school when we would go to the sports centre and do swimming, roller skating and trampolining then go upstairs for food which was normally, sausage chips and beans lol. Sorry I know that was a bit random 🙂

After that we went back and I think about 4ish I got called in, I was put in a little side room, each time I have been for chemo I have been in a different room, I think I preferred the smaller rooms as seeing lines of chemo patients at various stages of treatment is not the nicest. Especially as the majority of them are well over 60. It may sound strange but to see a younger patient like me makes me feel less alone in the room. Sometimes I get to talk to them, or just a nod or a smile is all it will take, it just acknowledges “I know what your going through” and that helps.

In this little room, there was another chair so I hoped I would get someone else in too, but to start with it was just me, which in hindsight was a good thing as it wasn’t the nicest of times for me.

The nurse usually starts with doing the paperwork and checks to make sure you are the right patient, then they get a big plastic bucket with hot water in and you have to put your hand and forearm in to warm up the veins and get them to show up easier and be more accessible. Then comes the cannula. Now each time I have been it has been harder and harder to find a decent vein as the majority of my veins on the back of my hand have either gone hard and sore. Or they won’t allow the flow of blood into my veins, something to do with valves etc. Or they just don’t want to play at all. So the nurse examined my hand and I told her that last time the nurse said a good vein for next time was just by my thumb as the vein she used was slow and not a good one. So I told the nurse but she said she preferred the vein on the back of my hand, so it’s the usual story of “sharp scratch” and in. It’s no longer a sharp scratch for me, it hurts especially the hard veins. It’s not a case of in and they hit the vein and hey presto I’m ready, it now involves digging and poking. This nurse had three goes and gave up, she found another “more senior” nurse, she took 3 goes and various veins including the hard ones will really hurt.

By this time I couldn’t hold it in any more and I started to cry, the two nurses were lovely and suggested they ring my consultant as they felt putting a PICC line in might be the answer. To see what a PICC line is, click here Macmillan info on PICC lines

When the nurse came back she said my consultant had recommended a central line that goes in via the chest wall, for more info click here Macmillan info on a Central Line

They said that this would need to be done via a surgical procedure and once again I got scared and got upset, by this time another lady had come in, she was a bit older than me and had a phobia of needles so seeing me upset and the hassle they were having getting the cannula in was upsetting her which made me feel bad.

They got the senior nurse in to have a look at me and she suggested I take a few minutes to calm down and compose myself, I jumped at the chance as I had been in there for nearly an hour so poor mum sat in the waiting room wouldn’t know I hadn’t even started the chemo. So I went out and saw mum and burst into tears as I told her what was going on. She said she knew I was having problems as a patient had come out saying there was a poor girl having problems getting the cannula in. She said she knew it was me.

I went back in and the senior nurse said, right let me try. I explained about the vein by my thumb, so she tried it and boom straight in and worked perfectly!!

So that was it then, after all that upset and drama it was all ready to go. So the drugs went in and took about an hour so around 6:30 I got out and boy did I want to run out of there.

So I got home (mums) just after 7, Di had text to say she couldn’t get down so I was glad I had decided to stay at mums for the night. As it turns out we had a big power cut so I had an early night and as usual couldn’t sleep and had a restless night.

Well that’s it for that episode I need to write another post about emotions as I want to keep that separate from this post. Xx

Emotionally discharged

I wanted to write a separate post about emotions as I have found that since my second chemo I have really struggled emotionally with things, my emotions, my feelings and the way I deal with things and most importantly my relationships with loved ones and family.

Part of the reason for writing about this is that from speaking to other people it seems a fairly common side effect of the treatment and processes we go through but it’s not really mentioned in guidebooks and leaflets.

I have found that recently I wanted to shut down emotionally, I wanted to bring myself to a point where I levelled out and didn’t feel highs or lows and I found them too much of an extreme. I found all I could think about was what was happening in the right now, not the future. It felt like everyday I could feel the chemo doing something to my body and although I didn’t feel really ill, your mind takes you to what is going on with your body and stays focused on that, the rest of your world goes into automatic pilot. You do things like eat, sleep, wash without thinking. I have heard people refer to “chemo fog” and I can see what they mean now, it’s like your wrapped in a fog and can’t see through it but you can see enough to live.

Since I met Di, the loving and romantic side of me has been bursting free, it’s the first time I have felt secure enough to let these emotions really come out and it was amazing, we had big plans for Christmas and New Year and I was excited about it all. Then all of a sudden I lost all of that excitement, I couldn’t think about Christmas and New Year as my treatments had gone off schedule and I didn’t know what was going to happen. I bottled up my emotions and it felt like I buried them as that was the safest thing to do.

The downside to this is for those who love and care for you, they don’t know what’s going on and only see you withdraw and naturally think that something is wrong and that causes more problems. Eventually I tried explaining what was going on and that I truly felt it was the chemo not my feelings changing, I felt as though I couldn’t say that I was on an emotional shut down as that would sound like I was rejecting them. So I kept quiet until it got to bursting point.

It’s a hard roller coaster for anyone in a relationship when you are ill, I met Di around the time I discovered the lump, so we have been together for 5 months now and all of that time has been shadowed by my cancer and treatment, so it’s a lot for a new relationship to cope with and I truly hope with all my heart we can survive this. We have some way to go before the end of my treatments and I know it could get worse, it could get better but it’s a lot of pressure on Di that I wish she didn’t have to go through.

All I can do right now is communicate and yes at times that lands me in hot water for being too honest, but I am not going to let cancer take Di away from me without a bloody good fight 🙂

So anyone who knows Di and is reading this, please give her a bloody good hug and support her as I know with the distance (physically and emotionally) I can’t always be there for her.

Thank you xx

Catching up

Ok so I haven’t kept my blog updated recently, the last you heard from me was I was in hospital after my temperature rose and my teeth ache got a lot worse.

Well basically I ended up being in hospital for 5 days and although I have the utmost respect for the Drs and Nurses that work there, I had a miserable time in there, I really struggled with it at times. So many ill people around me, all suffering with some form of cancer and at various stages of treatment.

I felt like a healthy spring chicken in comparison to the rest of my inmates, the majority were 30+ years older than me and some of them were going through a really tough time as a result of chemo or radiotherapy. A lot of them were being sick alot and also suffering from the runs and as they were not up to getting to the toilet just outside the ward, then this would mean the comode would be called in and they would go by their bed. I found this hard as my sense of smell has increased BIG TIME since the chemo started and my gag reflex is very strong, so I had a real job not to be sick a lot of the time and felt queasy and uncomfortable a lot of the time. I am also aware that I was on some strong antibiotics which made me feel sick too, but the whole combination made me want to escape and many a night was spent hatching up elaborate and unrealistic methods of escaping!

The positives that I learnt from my time in hospital is that I was lucky compared to some of those women, you could tell some of them didn’t have a positive future ahead of them, one poor lady still didn’t know where her cancer was, they could tell she had cancer but couldn’t trace the source and it was taking her down fast. I could imagine she was a tall, strong active woman when she was healthy, but in a few weeks she had been reduced to a shell, who couldn’t get out of bed and could only just manage a whisper.

Another lady who was my rock in there, had secondary cancer after going through breast cancer 6 years ago and had the all clear. All of a sudden she started getting headaches and pains in her head, so she went to the dr and after a while they discovered the cancer had got into her spine and had gone up into her head, it had travelled to her hip and I’m sure there was somewhere else. She was having daily radiotherapy when I was there and some days she was having 3 doses on the same day, she was so brave, it made her very very sick but she was always smiling and was so sweet to me, she made my day easier by chatting to me and I only hope I helped her too. She went home a day or two before me so I hope she is doing ok. I wish I had got her address so I could stay in touch.

Well after 5 days I was told I could go home, I was advised that I would have to have my bottom wisdom teeth out and that once my white cell count was above 1 then I could have the op. Apparently when I went in to hospital my white cell count was 0…. Oops! By the time I left it was 0.7 and by the following Monday after being at home it was 1.75 so luckily it shot up quickly.

My consultant came to see me when I was in hospital and she mentioned about getting a district nurse out to give me an injection a few days after my chemo to boost my white cell count, it sounded like I should have had it after my last treatment, but it didn’t happen, so hopefully it will happen this time.

My 3rd chemo was due on Christmas Eve but this got cancelled due to my teeth. So I was released from hospital (for good behaviour) on the 21st. (At one point I was starting to worry I’d be in hospital for Christmas)

Since then I have had my two bottom wisdom teeth out on New Years Eve, so no partying for me! And my chemo has been postponed until the 4th Jan (today) so I have my appt with the Dr at 12:50 and chemo at 2:45 but knowing how things go, it will be a lot of delays and waiting around!

So that’s brought you up to speed so apologies for the delay in updating the blog :-).

Toddle pip for now 🙂 xx

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