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
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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

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!!!

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

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