Reaction to the last chemo

Well the last post was about my last treatment of chemo and so i was very happy about finishing chemo but as per most thing with chemo its not always over when you think it is.

Saturday I didn’t feel too bad, Sunday morning I was ok but by Sunday afternoon I started to feel very nauseous and tired. Monday I didn’t get out of the flat apart from a brief walk to some grass to let lily out. I was glued to the sofa, dozing on and off all day. Tuesday I felt a little better so was up and about and Lavinia and Caroline came to see me which was nice. Then I went out for a meal with Mum & Ron as I’d booked a meal at a local pub a few weeks before as I’d been given a Living Social voucher for a meal for two etc. The meal was lovely and the Every Voice Choir were performing there that night which was good as my friend Libby is in it and I am signed up to join them next term, so felt it was nice for Mum and Ron to see what I was going into.

I got home about 10ish and felt fine, pootled about and went to bed.

At 2am I woke up with really bad stomach pains and stomach cramps, I then spent the next 30 mins with an upset stomach and I’d never had anything like that before, I thought my stomach was trying to tie itself in knots! I thought it could have been a reaction to the amount of garlic I had eaten for my meal as I’d had creamy garlic mushrooms and then haddock goujons with a garlic dip, which was a lot stronger than I was used to.

So I finally got into bed and was there for a few minutes before I had to rush off again.

After that I can’t really remember if I got really cold then or whether that was later, but at some point I felt so cold and was shaking so hard I was actually scared. I couldn’t get out of bed to try and put some more clothes on, my feet felt like blocks of ice and my head was freezing too.

I knew I should have rung the chemo helpline, but to be honest I was scared, I didn’t want to be told that I had to go in, I knew if I went in they would need to take blood tests and it would be likely that I would need a cannula put in and the mere thought of this made me physically sick. Plus it was around 4am and I knew that if they said I had to go in, I would have to ring and wake either my sister, my mum or dad to take me in as I wouldn’t be allowed to drive myself. So I tried to ride it out.

I remember at one point trying to cuddle lily for warmth but she felt cold, so I knew I must have a high temperature as normally she is a really good hot water bottle, she radiates heat big time 🙂 Even lily got fed up that night of me trying to cuddle her as I was shaking that much and my teeth chattering, it must have felt like cuddling a pneumatic drill 😀

Eventually this stopped and I started to warm up and managed to drift off to sleep, I then work just before 6 in a pool of sweat, I felt a bit more awake so took my temperature and it said 39.3 which I knew wasn’t good. I waited a few mins and did the same in the other ear. 39.3 bollocks!

I was still too scared to ring the chemo helpline, so text my sister as she was normally awake around 6 and she was, I told her what was up and she rang me straight back. She told me I had to ring the chemo helpline and I got upset saying I was scared that they would keep me in and I’d need a blood test etc and just saying it out loud made me heave and I was instantly sick… (Poor Lavinia had the phone but down on her at that point!) She gave me a few mins and then rang back and said I had to ring the chemo helpline so I said I would.

I rang the chemo helpline and explained what had happened and was told off for not ringing in the night, and that with my temperature being what it was I really needed to be in with them within the hour. I explained that I would try but my family didn’t live that close they they were all about 20-30 mins away. (It’s times like this when I do feel very aware of living on my own and although I have the most amazing friends in the world, ringing them at some ungodly hour to take me to hospital just seems too much)

Lavinia rang me back and I updated her, she said she could take me in but wouldn’t be able to be with me within an hour, so I rang mum, she was awake and up thank god, but I knew she had a busy day planned with taking my great aunt to a specialist, so she said to ring dad. I rang dad but couldn’t get an answer. Mum then rang back and said she was on her way, then dad and Lavinia both rang (one on landline, one on the mobile) so I was able to explain mum was on her way.

This is one thing I hate about what is going on, feeling vulnerable and not able to do things myself. I hate having to put my family and friends out and calling upon them to take me into hospitals etc I feel really guilty and I know I can’t help it but it doesn’t make it any better.

Well mum arrived and we got to the hospital just after 7. We knew we had to go in through A&E but Lordy lord, I’d forgotten how far it was in the maze of the hospital to find Lilybrook Ward, which is the chemo helpline area. I was quite out of puff by the time we got there, they explained they were full up in the main helpline area so I was put in a small side room with 3 comfy chairs in so Mum and I went in there.

Well they came to take my bloods and the nice nurse who did it remembered me from a previous visit and knew I had problems with my veins and as she had problems herself with giving blood etc, she knew some little places to try so managed to get one on the second attempt. It didn’t hurt and it didn’t upset me, so I was happy.

A bit later they came to put a cannula in and I was sick again, so they gave me some time and came back, the first attempt failed so the cannula expert was sent in. She had to go in to my hard veins so that did hurt alot but I was relieved she got in and was able to use the cannula. She hooked me up to antibiotics and so I had to have all of that then they switched it to saline and I don’t know what happened but feeling the saline go in made me sick again. It was cold and just made me feel really bad.

Eventually it settled down and I had to let that go in. Now I’m getting a little hazy as I wrote the majority of this a few weeks ago and had to stop as it felt a bit wierd and I felt sick.

Basically I ended up having to stay in over night and had 3 litres of saline pumped into me. I was up and down like a yoyo in the night going for a wee as my body isn’t used to all that fluid lol.

I was told I could go home the next day but wasn’t allowed to go home on my own so I went to mums for a few days.

Well that’s it for now. I need to move on to the next chapter… Radiotherapy!!

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Chemo is no more!

Well at long last I can say my chemo treatments are over! Whoopie doooo!! If I wasn’t feeling a bit sick from the treatment, I would be doing jumps and dances around my flat! But I am having a bit of a yucky day and have hardly left the sofa all day!

So to clarify I had my last treatment on Friday, it didn’t go to badly, they had a lot of problems getting the bloods, my veins would disappear as soon as the needles came out, so after various poking and pricking and 3 nurses having a go, they finally got there and luckily decided to put a cannula in so that I didn’t have to go through it all again when I went for treatment. That was such a relief I can tell you!

I guess because I was so worried that they would say my white cell count wasn’t high enough, I was pretty wound up and had a headache and was nervous so when I finally got called in for treatment I was feeling pretty nauseous and as soon as the anti sickness drug was being put in, I was instantly sick. It didn’t help that they had forgotten to give me the big anti sickness drug an hour before treatment so they had given it to me as I came in, so of course I lost that too.

Once I had calmed down, the treatment continued without a hitch and I could go. I felt quite emotional leaving, I thanked the nurses and legged it as felt like crying!

Well all I could think if was whooopie no more cannulas etc…… Hmmmm how wrong was I lol!

(Sorry it’s taken me a while to write this as just writing about my treatment made me feel very sick so I kept having to stop as I started writing this on the Monday after treatment)

So that’s the last of my chemo 🙂 wahoo!!!

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

Ladies and Gentlemen its time for Radiotherapy Planning

Well tomorrow is scheduled to be my last chemo session, I feel a strange sense of relief that its nearly over, then also pretty nervous about it as the last few chemo sessions have made me feel pretty yukky, which is understandable as I knew that the more sessions I had the greater the impact would be.  But I know that compared to a lot of people I am lucky that it hasnt affected me hugely, but then if I look at some of the stuff thats happened, I know it hasnt been the easiest of rides, but the main thing is that I have made it through so far and only have the one to go.

I am hoping and praying that my chemo will take place tomorrow, I am a little nervous as I have had the start of a cold for the past few days, but I am hoping that my white cells must be dealing with it as the cold hasnt progressed into a full cold yet.  I just hope there are enough of the little buggers to get the chemo tomorrow!  So attention little white cells, I want you all present and correct for tomorrow ok!!

Well today is my Radiotherapy Planning day, I will have my first CT scan and then they will mark where the radiotherapy will take place, so that each time I come in for radiotherapy the machine will line up with these dots they put on my body and hey presto I should be out within ten minutes.  Well thats my understanding anyway.

I went in last week for a chat with the Radiotherapy trials nurse, as I have been invited/accepted to take part in a Radiotherapy Clinical Trial. This is paid for by Cancer Research UK which is a cause very close to my heart so I am glad its something for them, as I have done a fair bit of fundraising for them over the past few years.

Well the clinical trial is called Import High and today once I sign to say I want to do it (which I will) I will get entered into the computer and allocated at random one of the following radiotherapy treatments:

IMPORT High is looking at radiotherapy after surgery for breast cancer in women with an average or above average risk of the cancer coming back (recurring).

It is recruiting 840 women in the UK into 3 groups

  • Group 1 has standard radiotherapy of 15 daily doses of radiotherapy to the whole breast and 8 doses of radiotherapy to the area of the breast where the tumour was
  • Group 2 has a boost dose of radiotherapy to the area of the breast where the lump used to be. At the same time a medium dose of radiotherapy is given to the area around this, and a low dose to the rest of the breast. The treatment takes 3 weeks.
  • Group 3 has a similar treatment to group 2, but the boost dose is a bit higher.

More info on the trial can be found here if anyone is interested:  http://www.cancerresearchuk.org/cancer-help/about-cancer/cancer-questions/what-is-the-import-trial-for-breast-cancer

Now initially when I was given my radiotherapy schedule it had me down for 3 weeks, starting on the 4th April and ending on the 24th April so I thought I was accepted for either Group 2 or Group 3 trial, but I found out last week that they just schedule me in for 3 weeks as thats the minimum time I will need radiotherapy, so I could end up with the 4.5 weeks anyway so I was a bit disappointed with that news.  As the thought of driving in to Cheltenham Mon-Fri daily for 10-15 mins of Radiotherapy is a bit pants!  I’d rather the higher dose 3 week schedule and get it over with, even if I do end up with a glowing sun burnt boob lol 🙂

Apparantly I should find out tomorrow what schedule I am on, so will have to keep my fingers crossed.

One thing I am looking forward to is the CT scan today, I have never had one and I have seen it on the tv loads and find it fascinating,  Apparantly they scan my breast to see the exact area that the surgery took place and apparantly there should be some “clips” left in the area the tumour was removed so that the radiotherapy planning can line up with them to enable them to precisely target the right area.  I have to admit I nearly jumped off my seat when they told me that, what do you mean there are clips left inside of me, so I plan on finding out more today!

CT Scanner aka The Stargate!

Anyone else look at this and think of the Stargate TV Series?? or is it just me??? I can pretend lol

I will be so glad when the chemo is over, to start with I found I coped with it pretty well, but now the thought of that toxic crap going into me makes me feel physcially sick.  My right arm is knackered from it, my veins are hard and lumpy, even the main vein down my arm is hard.  They dont tell you about those side affects when you go in.  I wish I had known as I would have fought for either a PIC line or a Central Line if I had known.  I cant stretch my right arm out fully as the vein is quite sore and feels like an elastic band that wont stretch, I have been told it will get better but can take around a year to heal.  So it makes me very aware how toxic that stuff it, no wonder my veins shrink when the needles come out.  They cannot use my left arm as thats the side I had my lymph nodes removed so that arm is shouting hey use me, save the right arm but the Drs and Nurses say Noooooo.

I just hope it all goes ok tomorrow, as I am an emotional wreck when I go in now, I have cried the last couple of times when they are struggling to get my veins for either the blood test or the actual chemo.  I dont like getting upset there as there are so many other people going through alot worse or even new people coming in for the first time, they must be nervous as hell, they dont want to see someone crying as it would upset them, but sadly my control on my waterworks (hmmm I mean tears not bladder lol) is useless, they just keep making my eyes leak lol.  I have no control on them 🙂

Right time to get dressed and prepared for today, lots to take in and I must ask questions 🙂

Toodle Pip!  🙂 xx

Ladies and gentlemen, this is Chemo No 5

Ladies and gentlemen, this is Chemo No 5

One, two , three four, five
everybody in the car so come on let’s ride
To the hospital around the corner,
the boys say they want some gin and juice
but I really don’t wanna
Chemobrain like I had last week
I must stay deep ’cause talk is a cheap
I’d like to get this over and be much neater
and as I continue you know they’re gettin’ sweeter
so what can I do I really beg you my Lord
to me fighting this it’s just like a sport
anything fly it’s all good let me dump it
please set in the trumpet

Sorry I couldn’t resist this! Today is my fifth chemo and after this I have one more chemo session and I am dreading today, I feel sick just thinking about it but I’m so close to the end, that I have to just grit my teeth and fight it.

So lets hope today isn’t going to be a long draggy day! Xx

Battling your emotions

I’ve talked before about the chemo and how it has messed with my emotions, I found just after my second treatment I felt like I shut down and a lot of my happiness and feel good feelings got sucked into a black hole and I felt emotionally flat lined. I still have my good days and I have a lot of bad days and some ok days.

Some days I can just lose the day doing god knows what, I sit in my flat and one minute it’s morning and then it’s dark outside. I can’t explain what I have done all day, apart from being glued to the sofa or my laptop, or both. I often find little projects to do and beaver away for hours on it and can lose hours or days. I remember the same happening about 10 years ago when I was made redundant and couldn’t find work for a few weeks, so I sat down and wrote a whole new website for my favourite show Return to the Forbidden Planet. I loved doing it and felt such a sense of achievement at the end of it.

This time it’s my Gay Girls of Gloucestershire group that I run that’s getting the focus, I spend hours working on improving it, coming up with ideas on what we can do and events for the future. It’s been a massive distraction and help to me as sometimes I admit I have really struggled with things and getting my mind into focus.

The downside to all of this is the effect it had on my relationship with Di, I don’t want to go into too much detail as its private, but at the end of the day, I lost my relationship with her because I became too distant and I didn’t make her happy anymore. We had been together exactly 6 months and throughout all of that my treatment and illness was always there, sometimes in the background, sometimes in the foreground and latterly right in between us. My emotions and feelings for her just disappeared, I felt confused and didn’t know what the hell was going on, was it genuine that my feelings had gone or was it a side effect of the chemo, how would I know. I kept trying to plug away at getting my emotions back, but things were getting harder and I felt more pressure on myself from my own expectations that it probably made me back off even more.

I’d spoken to friends and other people going through chemo and everyone said that chemo affects your emotions, and what I was going through was to be expected, don’t push Di away and talk to her explain what’s going on and although I did, it was really really hard. I felt guilty for not being a proper partner, I felt she deserved more and just found things harder to deal with.

I know of people who have survived going through this but I felt that was probably due to having a good solid relationship before the treatments and diagnosis, I met Di just after I found the lump, so it was always there. Di has been an amazing support to me and I am eternally grateful for all that she has done for me and the love and friendship she has shown me. I feel bad about it not working but honestly feel that it’s for the best right now.

I don’t know what the future holds but I feel the cancer, the treatments and side affects has changed me slightly, whether its permanent I don’t know, only time will tell.

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