Its back..

I know I haven’t written for a while now, so apologies for that, I have been meaning to write and keep this blog up to date but it gets harder to do the longer I leave it and when I did decide to start blogging again, I couldn’t remember my password to blog from my phone.  Now that I have access to my laptop, the autosave password has let me back in again!

Well as you can probably tell from the title of this blog, the cancer has come back.  Not exactly the kind of news I wanted to hear or to pass on really, but as I have always said, this blog is about passing on the real life events of someone going through cancer treatment and I had hoped that I would be writing to say it was all good news and things like this needn’t hold you back or mean doom and gloom, and in a lot of cases that is true and I am glad that is the case.

Nowadays so many people can have a brush with cancer and never have to suffer with it again, but sadly there are some of us that have to go through it more than once and that appears to be me now.

So where do I start with this…. well lets go back to October 2013… as this is when it all started again for me…

In October 2013, I started developing some chest pain and went to the doctor about it, initially they said it was likely to be costachrondritus as a result from the radiotherapy as I had significant swelling and scar tissue as a result, this did not ease so I went back a few more times, then I started developing pain in the breast and was told it could be a lymphoedema, in December I was still suffering and seeing various Drs who just advised to take anti inflammatory pills and pain relief.  On December 24th I was advised to go to A&E for a chest x-ray as they were worried I might have a pulmonary embolism, so had the x-ray but it came back clear but my blood results showed possible clotting so was advised to come back on the 25th for a CT scan.   I took the CT scan the next day and was told there was no sign of clotting but they could see small nodules in my lungs that may need looking into, so they advised I  come back for another appointment in a few weeks.
I took that appointment and was told that they would need to leave it a few months to see if the nodules changed.
During February I saw my surgeon Ms Fowler at Gloucester Royal Hospital and she quickly determined it as a lymphoedema, and said she would refer me to a lymphoedema clinic but I was told this would take several  weeks to see anyone.   By this time the pain was really quite bad and I hadn’t been sleeping for several months and was having to sleep sat up on my sofa, because lying down was impossible, so I rang the lymphoedema clinic to get an earlier appointment and luckily they managed to see me within a week.
During the appointment they assessed me and thought it was a lymphoedema so advised me to take pain killers and a compression bra but also advised I see the palliative care team about the pain, so was referred to the Gloucester team.  During my appointment, my breathing was so bad they instantly referred me for a chest x ray which revealed my left lung lining was almost full of fluid, so was instantly detained as a in-patient.  I had to have a chest drain inserted and they drained several litres over the next few days.  During this time, the Drs told me it was highly likely that the cancer had returned and was in the lung lining and was excreting the fluid, hence the build up.   I was then asked to have another CT scan, which then showed that the cancer had returned and there is a 5cm tumour behind the chest wall that has gone onto the left ribs and has caused hardening of the left lung and heart.  I have been advised to start chemo asap so that they can start trying to shrink the tumour, this will hopefully ease the pain that I am getting and make it easier for my lungs to function properly as well.
Because of the issues I have with bad veins in my right arm, they decided to try and put a PIC line in, which is a semi permanent line into the artery of the arm so that they could feed the chemo and anything needing to be fed in via IV that way.  Sadly my veins were too knackered for this as none were big enough to handle the tubes, so I was then told I would have a central line put in, which is when they go in at the large artery by the neck and push it down into the main artery near your heart.  So this was done under local anaesthetic and although it didn’t hurt, it wasn’t the most pleasant experience as I could feel them tugging and pushing into my chest and I am pretty bruised still from the procedure, even though it was done a couple of weeks ago.
But the good side of this, is that they can take bloods and put the chemo etc straight into me without any hassles at all.  Gone is all the stressing and tears that I used to face eachtime it was a chemo appointment, now its simple as bish, bash bosh lol.  So I am extremely grateful for that, as it was a huge part of the chemo treatment that upset me and made me worry each time.
So I have now had two treatments of chemo and was meant to have the 3rd one tomorrow, but at my check up yesterday they said my blood platelet level was too low (by a long way) so I would have to wait a week.  Obviously I was disappointed as the sooner I get the treatments the sooner this bloody tumour shrinks.  And in turn it should mean less pain for me.   But it happened last time, albeit different drugs and reasons for delays, so I just have to grin and bear it.
Well this has got me up to speed on the basics of what has happened, I will be blogging more frequently from now on, as it is therapeutic to write all of this down, I don’t know who reads it or not, but its there if someone does read it and the overall aim was to try and help someone else going through a similar process to find a “home made” schedule of events, written by a person for a person.  You get so much literature to read from the drs and hospitals, I know I wanted to hear personal experiences of what it was like, so that is why I started this….
Anyway… I am waffling……    ta-ra for now xx

Catch Up

I know I havent written anything for quite some time on here so I apologise for that, I have found the last few weeks have gone so fast it has been a blur and to be honest I dont really know if I am coming or going!

I am now three weeks clear of all of my treatments!  Wahoo!  <<does a little dance>> I finished my Radiotherapy on the 24th of April.  I have to say that I found the Radiotherapy to be a piece of cake compared to the chemo.  Yes its inconvenient going in every day especially at middle day, but the appointments were quick and on time.  No more waiting for hours in the depressing Oncology Waiting Room.  The staff and nurses were lovely, it felt like there was more interaction with them than before, but I think that was more to do with how I was feeling, I was more relaxed and didnt get nervous before the treatments like I did for my chemo.

Each session took around 10 mins, with the exception of the first couple which took longer as they were setting up and preparing me and describing what is going to happen.   I didnt find any of the Radiotherapy process scary, in fact I was almost captivated by the machines and the way they move around you and the technology is amazing!

I found myself quite often escaping to another place in my head and would actually almost doze off at times, even the nurses commented on how relaxed I was.  There is no point in getting worked up, there is nothing to worry about and it just makes it uncomfortable if you are tense as the position you have to lie in isnt the most natural feeling in the world 🙂

I found walking out of the hospital on my last day quite emotional, I had been told that quite often people find it scary when you finish as there is no structure with appointments and being around health professionals so much.  I must admit I poo pooed this, but have to admit it is real.. I walked out of there thinking…. what do I do now…..  For a brief moment I felt quite lost.

Luckily I am a positive thinker and also keep myself busy with lots of things, such as getting back to work, organising a fundraising “End of Celebration” Party, being part of the committee for Gloucestershire Pride and so on….. I think sometimes I take on too much, but other times I just love it!

I have found I have good days and bad days emotionally, mostly good but when I get tired I get quite down as I feel frustrated at not doing what I want to do. I have returned to work now, my first week was a 4 dayer and I did mornings only and that was ok.  I felt ok during the week but the weekend, wow I was hit for six!   I was as much use as a chocolate tea pot!  I had all these plans of tidying the flat so that I can get an estate agent round to get it valued.  I am really keen to move now, I am desperate for a place with a garden and have seen a place I fell for so am itching to get things into place but tidying my flat is my nemesis!

This is my second week back at work and I did my first full day yesterday and boy oh boy did I feel tired afterwards!  I had to man up and get my tired butt to choir, as I have joined a choir in Cheltenham that is part of the Everyman Theatre.  I am the only “true” newbie this term as everyone else has been going for some time now so clever me joins when they have a massive concert happening in July!  All 8 everyvoice choirs are joining on the main stage to perform songs and guess which choir pretty much sings every song…. yup mine!  So I have shit loads to learn and I am struggling so any tips from my actor chums on how to learn lyrics would be most gratefully received!

Links to the show: http://www.everymantheatre.org.uk/m-shows/ev-one-voice-everyvoice-concert/

Well that’s it for now I am going to write a post about my End of Celebration Fundraiser.  🙂  Ta ra xx

A date with a Linear Accelerator

Well my radiotherapy treatment has started, so far I have had two sessions. I started on Thursday 4th April and it went well. There was only a 10 minute delay from my appointment time, which was a HUGE bonus compared to waiting for chemo. Mum came with me which was nice as I hadn’t asked anyone to come with me as I was told it was a lot quicker and easier than chemo and as it happens every day Mon-Fri I didn’t want to inconvenience anyone.

I was called through and taken to Room 11. As I walked in, I saw this massive machine that just looked like a massive Kenwood mixer! I said that to the nurse and he laughed and said it gets called a lot of things and not all of them are polite 🙂

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He talked me through the process that I would go through, so it was basically strip to the waist, lie on the bed, position my arms above my head into the holders, they would then draw marks on my body where they put the small tattoo dots. Then they would line me up with the laser markers, the nurses would do this and I had to try not to help them, and once this was done then I had to stay as still as possible until the end of treatment.

He advised that I should buy some aqueous cream and to keep moisturising the area as I may end up with some form of burns/sore patches. He said people who use the cream regularly tend to heal much quicker. He said they used to give it to patients but with cut back they couldn’t do that anymore.

So it was time to get going, so I had to strip off and lie on the bed. They then raise the bed right up to about 5ft off the ground. Putting my arms up into the holders felt a bit weird but I settled quickly, they then drew on me and lined me up against the laser markers. A bit of prodding and pushing and I was lined up correctly. They advised me that I would have some photos done first then the treatment would start. They showed me which part of the machine was the photography unit and which part did the treatment and they advised when the radiotherapy was being given I would hear a buzzing.

They then left the room and as they leave they hit a button which starts the machine.

Next the machine moves and various parts move above and around you, I recognised them as the camera so was trying not to move but also see what’s going on at the same time 🙂

Next the main round part of the machine moved above me and its hard to explain but there are all these moving parts inside it that move about to form a hole the shape of the area it needs to target the it buzzes and then the shape changes, it buzzes and it keeps moving and changing shape. I found it fascinating to be honest.

I couldn’t feel a thing, which felt bait strange especially as my boobs were covered by a piece of paper towel and I kept thinking how does it not burn the paper lol.

After a while I started to get a cramp in my right shoulder blade, it was hard not to move as it got quite uncomfortable.

After about 15-20 minutes (I think) they finished and basically it’s get up and go!

I felt fine, I was relieved that it was a stressors treatment, no pain or needles as I have to admit I’m pretty scared of having needles stuck into me at the moment.

I had to go back on Friday and although I had a 40 minute wait to get treatment it still felt like a diddle compared to chemo. The treatment took a bit longer as this time they had to keep coming in and putting these marker things on me between each does. This was fine but I got an itch on my nose and it was driving me crazy but I couldn’t move 🙂

After a while it was over and I had a good rub of my face and made the nurses laugh as they’d noticed me twitching my nose 🙂

So that was my first two treatments… 13 more to go and so far it’s been pain free. I seem to have a big dip a few hours after treatment and get really really tired, they warned me about this and they say it will get worse the more treatments I have.

Well that’s it for now xx

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!!

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

Radiotherapy planning

Well radiotherapy planning has been planned, I had my ct scan and now have black pen marks all over my chest and boobs lol. The whole process didn’t take very long and was easy enough. I had to chat to the trials nurse and sign the paperwork to say I consented to take part in the relevant trials. There are various options that I can opt out of, such as a family history questionnaire, a photograph of my breasts at various stages of the treatment, permission for my tissue samples to be tested etc and a few more I’ve forgotten about.

I agreed to them all as I want to try and take part in all of it if it means things can get better for other people and things can change and progress.

The ct scan was interesting… Bloody cold room to be led down with your top off and boobs out! I had to lie down with me knees up, and my arms up above my head and they stuck sticky tape all over my chest and boobs, I think the tape had little strips in them from what I could see. Then they drew on me with a marker pen. Then they vanished into a little room and I got moved into the scanner, the scanner whirred around me and I was moved backwards and forwards a few times then the scanner started spinning really fast around me. I was fascinated if I’m being honest I kept thinking about the stargate tv series and hoped to be whisked off to some exotic planet lol.

After all this, they removed the strips and made more marks, then made the permanent marks but I am not too sure how they did this. I tried looking and just saw what looked like a pin in her hand.

After this wash done I could get up and get dressed and go home.

I felt emotionally drained afterwards, I admit to being a bit nervous about today and even more so about tomorrow I’m scared it won’t take place or they won’t be able to find a vein, that it will hurt and I’ll get upset.

Aggghhh time will tell xx