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

Down but not out

Once again I haven’t written for a while, so apologies again for that.

In my last post I mentioned that I had been diagnosed with costochrondritus (or something like that) which is inflammation of the cartilage in the ribs, well several months on, it’s still playing up and has been causing a lot of pain and sleepless nights. The pain was pretty severe at time and I found it hard to cope with, especially at night, as lying down was torture. After a while the pain in my left breast was agony, so I went back to the Doctor and was given pain killers but nothing was working. After several weeks of not sleeping I went back again and was diagnosed with cellulitis. So more antibiotics and pain killers.

I did some research and found it to be very common for breast cancer patients to suffer with costachronditus and cellulitis, I found post upon post from women talking about it. It made me feel better to know it wasn’t something out of the ordinary but I did feel a bit upset that there are so many complications that happen regularly for post cancer treatment patients. I have found the almost constant pain to be very draining and the lack of sleep has made me feel emotional and grouchy and I don’t like feeling like that.

During all this I had a fun trip to hospital over Christmas, I went to see my local GP on Christmas Eve to see if I could get anything to ease the pain and ended up being referred to A&E as they wanted to rule out that I didn’t have a PE (Pulmonary Embollism) . Not what I had planned for Christmas Eve! I have to admit to being a bit scared as although I didn’t really know what a PE is but being a avid TV watcher, I’d watched my fair share of Holby City and Casualty so I knew it wasn’t something to shout from the rooftops!

So off I trundled to A&E (around 4:30pm) and hoped it wasn’t going to be busy. Luckily it wasn’t busy but it still ended up being about 4 hours in there. I a had a blood test and then an x-Ray and waited for the results. The x-Ray came back clear but the blood tests showed evidence of clotting, so I was at risk of the PE. I wasn’t sure how to take this, but they said I would need to come back for a CT scan and would also need a blood thinning injection.

The Dr came back and said she had the appointment for my CT scan…. She looked sheepish and apologised and said it was the next day…. Christmas Day! Great!!! 10am on Christmas Day… Ooh what I’ve always wanted lol.

So I had my blood thinning injection which stung like a biatch!! But off I went home…. I have to admit the drive back to mums was an emotional one, I felt scared and fed up. I knew Mum had a houseful of guests for Christmas Eve and I couldn’t really face it but I was meant to be staying the night so I had to grin and bear it.

A pretty much sleepless night and then it was Christmas Day, I can’t say I felt full of Christmas joy but I got up and wrnt downstairs, mum has been up for a while getting the vegetables peeled and chopped, the turkey was already in the oven so before long we were off down to Gloucester.

We found the ACAU ward but caused some confusion as I don’t think they are used to patients walking in, I think if I had arrived in a wheelchair or on a trolley then I would have been a doodle, but a walk-in patient wasn’t on the cards so after a few phone calls They agreed I was in the right place so I was put into the waiting area. After a while one of the Dr’s came over and said that they would need to fit a cannula and I can tell you right now, I nearly cried right there and then. The thought of having one of those terrified me, I hadn’t had anything like that for a while but the memories of the chemo and problems with my veins etc came flooding back.

I warned the Dr that my veins were shot to pieces from the chemo and they had real problems getting a vein but she smiled sweetly and did that, “I can do this” look and tried…. Failed, tried again… Failed… And again… Failed.

Another Dr was called in, he tried… Failed…. Then they tried my foot… Holy moly…… That hurt like hell and I was very close to saying a naughty word! That didn’t work but I did do a lovely fountain of blood across the floor lol.

The third Dr who was clearly the “Boss” came along and he tried twice and finally got one, right on the knuckle…. Ouchio!

Finally I got up to the CT scan ward and into the CT scanning room, they got to me to lie down on the bed and warned me that they were going to pump some fluid into me that would make me feel hot and would make me feel that I had wet myself. I laughed but. OMG how right were they lol.

I found the process itself ok, but the pain from keeping my arm above my head was awful, the scar tissue is pretty bad in and around my boob and makes movement difficult and it pulls.

I had to go back to ACAU for the results and they came back saying that there was no signs of any clots, but they had seen some signs of infection so I would get antibiotics but they had also spotted some nodules that would need further investigation. As soon as I heard “Nodules” my heart sank…. I couldn’t help but think it meant cancer… I looked at mum and could tell from her face the same thought had gone through her mind. I asked her what she meant by nodules and she said they were small at 7mm and I would be referred to a lung specialist and they would have more answers. She said they couldn’t rule out cancer but it could also be a reaction to the radiotherapy.

It’s funny how when I told some people I had the all clear from the PE threat but they found nodules, some people were like Yay! That’s fab news… Others asked about the nodules… Clearly thinking like me…..

Once I got home, I managed to shut out all the negative thoughts and enjoyed spending Christmas with my family, I love spending time with my niece Caroline, she makes me laugh so much so was the perfect remedy for a shit morning.

Well today I finally got to see the Lung Specialist and she said they want me to go back in 2 months to have another CT scan to see if the nodules have changed at all, until then there isn’t much that they can say or do. I have one in my right lung and two in my left lung and that’s all she could say really… So I see it as two more months of reprieve lol.

So that’s the update….. The pain is still not getting much better so I am using sleeping pills to help me sleep. I am keeping myself amused and excited thinking about all of my plans for the summer. I have Glastonbury to look forward to, Lakefest and Surf Camp but best of all I am trying to get a campervan…. A Mazda Bongo to be exact. My plan is have it for April/May so watch this space!,

So I may be on the ropes but I’m fighting back…………

🙂 xx

Ketchup

Sorry I had to write ketchup as it always makes me think of a joke used in Pulp Fiction 🙂

So this is a ketchup (catchup) boom boom!

To catch up over the last few months, I have been busy trying to get back on track with work and also get myself back on track.

I have done a tandem parachute jump and a freefall sky dive to raise money for Maggies Cancer Centres as I wanted to give something back to them for their help during my treatment.   I absolutely hated the parachute jump, the freefall part was cool, all 30 seconds of it, the moment the parachute opened, it felt like hell on earth lol.   I was in a lot of pain from the tension in the straps and the swinging about made me feel very sick, so I am afraid I threw up on the last bit of the descent!  Yes I am a classy bird!!

Other than that I have been tootling along, I have to admit that physically I have found it quite draining trying to live a full life and I don’t take it slow at the best of times.  Emotionally its been a roller coaster as well, I have been on some real highs and real lows, and it did start to get to me.  I knew I should be feeling happier, but I felt like I had just been in a time warp and I had fast forwarded in time and then gone back to where I started.  It felt like that so much had happened to me over the last year, now all my treatments are over and it feels like I’ve been dropped back down from a great height back to where I was a year ago.  Its surreal…. and I admit I struggled with it all.  I had massive lows about having no direction and not knowing where to go in life, I felt like I had changed a lot during the past year and it was trying to discover the new me again.  Its frustrating to say the least!

I admit to going back onto the anti depressants to cope with it, it just helps keep an even keel as after several months of feeling pretty much flatlined and emotionless to go to feeling real highs and lows is a real roller coaster and normally I love roller coasters but when it comes to adrenaline that’s cool, bring it on, if its emotions…… nope right now…. cant handle it!

I have felt a massive lack of confidence in myself since the treatment, especially about work and trying to go back to do my job again.  I had massive brain freezes and had blocks of sitting at my computer thinking, what am I doing!  Its taken quite a while to feel vaguely like I am getting back on track work wise, its a case of learning to be patient with myself and stop expecting too much of myself.

Physically, well the good news is that I had my first mammogram after everything and it came back as all clear, so that’s a massive relief!  I know I have to go through regular check ups over the next few years but for now, I am FREE of cancer!   whoop whoop!

I have to mention side effects of the treatments, and I have found various changes in my breast since the radiotherapy.  They said it might shrink and for a few months, it didn’t but it has a shrunk now, I don’t know by how much, but its noticeable to me and I was a bit paranoid about it, but its getting better now.

I have a lot of scar tissue in the area, so I still have a significant lump there which does feel strange after having two operations to remove “the lump” and the scar tissue has been quite uncomfortable for a while especially over the last few months as its constantly changing as in shrinking, swelling, aching, itching and being rock hard.  I did have a scare and went and had it checked and was told it was ok but it is worrying with the changes and the consultant and nurses were lovely and understanding about it.

I have since had problems with my chest and I am not sure if its related to the radiotherapy or not, one Dr thought it was but the second wasn’t so sure.  I have basically been told I have costochondritis which is inflammation of the cartilage that connect the ribs to the chest.  And having done some searching on the net, it appears to be quite a common problem after radiotherapy.   I have to say its bloomin painful, I’ve never broken or cracked a rib but I have been told it is a similar pain, so getting a cold with a cough has not helped the situation at all.  But I am on pills for it now, so fingers crossed it will clear up soon!

Well I cant think what to say now, so will shush now 🙂

Night! xx

Thats not me!

Hi, I have been meaning to write for a long time to say that I am still here and doing well.  So apologies for dropping off the face of the earth.

I have been prompted into writing tonight after my face was plastered over an online article about gay women suffering from discrimination during breast cancer treatment and they have used my photo without my permission.   I am happy to raise awareness for Breast cancer in anyway that I can, but I do not want it said or implied that I faced discrimination because of my sexuality as I genuinely don’t remember it being an issue.

My partner at the time, lived about an hour away, so she wasn’t able to be there at the majority of my treatments or come and see me when I was in hospital.  So I cant comment on what it would have been like for my girlfriend to visit me, I don’t think I was asked about a boyfriend during my stay, certainly not by the staff, possibly by the patients in my ward, but then the majority were two generations older than me, and I understand that they have very different views on sexuality as that is how they are raised and I am not going to ask someone I don’t know to accept my sexuality and be ok with it if it is not what they feel.

The nurses and Drs at the hospitals were fine with me, I didn’t hide my sexuality.  I may have referred to my “partner” rather than just saying my girlfriend, but I don’t feel its something that needs ramming down everyones throat.  If I am asked directly then yes I would say I have/had a girlfriend.

ah well… rant over!    (during my rant and several tweets and postings later – the photo has been changed!)

http://www.gaystarnews.com/article/why-gay-women-are-suffering-breast-cancer-care101113

Tis Only Me!

I thought I had better do an update on how the fundraising went for the End of Treatment Celebration Auction and Party…. well… it went REALLY WELL!!  I should get it to over £1000 once everyone has paid which is fantastic!  I am so proud of my friends and family for all that they have done and their support!

The party raised £333 roughly on the night and the auction raised £611 (I think) and since then I have had a few more donations which is awesome.

The party went really well, I had a good turnout of friends and family and as far as I know most people had a good time, I have to admit the party was a bit of a blur as the first section I was running round like a headless chicken trying to get stuff sorted (I should learn to delegate more!) and then once all the official business was done I hit the shots hard and the rest of the night was a different kind of blur ha ha!

But I enjoyed myself….  I let my hair down (yes its growing and I have a nice fine covering of very grey hair now lol)

I did a little speech and made myself cry, I tried thanking my Mum for coming to pretty much every chemo treatment I had and waiting for hours and hours with me and I broke down and couldnt get my words out.

IMG_8698-1

I then presented her with some flowers and made everyone in the room cry too lol!

IMG_8713-1

Once I had done all the thank you’s (although I am sure I had forgotten a few)  I played this video and made people laugh and cry ha ha!

IMG_8717-1

After this we got dancing and threw some crazy moves 🙂

IMG_8795-1

ha ha Ruth will kill me 🙂

I was so grateful for all the love and support that my friends and family have given me over the past 11 months, its nearly a year since it all began and I really feel that the whole experience has taught me a massive life lesson.  I want to do something with my life and not regret living one single second.

I have another adventure up my sleeve that I will be revealing soon, I just need to work out some details first 🙂

This weekend I am taking part in Race for Life so will upload some photos from that if I get a chance as I am planning to “horse around” ha ha xx

This is my space – thats yours

Last night I went to a music gig and was really looking forward to seeing the band “Missing Andy” whom my mates have been raving about for over a year as they saw them at a local festival last year and they are playing at the same festival this year that I am going to.

So I went to see them in a small music venue last night and was excited about seeing them and felt chilled and ready for it.  What I found though was that as soon as the band started playing and the crowd got more packed in and the drunk men started dad dancing around me, I suddenly felt really scared and protective over my left boob.  Its really tender at the moment and I knocked it with a plastic wallet file the other day and it killed so I really didn’t want someones elbow bashing into me so I adopted a strange stance with my arm covering my boob.  This meant I couldn’t relax or dance and at one point I just wanted to get out of there and I felt myself wanting to cry.

I felt totally conflicted as I was enjoying the music and the band were amazing but my head went off somewhere else for a bit.  I think my mate saw I was having a little freak out so moved me to a safer position and I did start to relax but by then my feet were killing me.

Since my treatment my feet get really sore and painful and last night was really painful, I found standing on the hard floor hard and haven’t stood for so long in a while so after a while my ankles felt like they had locked and I was getting shooting pains going up my legs.  So I was grateful it wasn’t a massive set list and was able to sit down at the end.

In all I had a fantastic night but it still surprises me how little things within me have changed, how protective I am of my boob and how much it freaked me out being around people dancing in close proximity.

I’m not going to let that stop me doing things at least I will be prepared for it next time 🙂

Check out the band Missing Andy: http://www.missingandy.com/ they are really good 🙂 xx

I’m fundraising…. twice

I know that some people would consider me one of those annoying people who is constantly fundraising and yes I have to put my hands up and admit to being one of them but the way I look at it, is that even if I raise £1 that’s £1 that my chosen charity wouldn’t have had before.

So I have decided to combine the celebration of my “End of Treatment” party on the 1st June with a fundraising opportunity. So on the actual night I will be holding a raffle and will be collecting donations but my biggest fundraising tool is an online auction that I am running currently.  I have been asking friends, relatives, local and national companies for help with donating items that can be sold online.  I have been astounded by their generosity and have managed to get some fantastic items which can be found at: http://www.tiggertots.co.uk/auction

Information on the whole event and reasons why can be found here: http://www.tiggertots.co.uk

 

Ok my second fundraising event is a bit more regular!  I am taking part in Race for Life at Gloucester Park in Gloucester on Sunday 23rd June 2013.   I was lucky to be asked by Cancer Research if I would be willing to use my story to feature in an article about Race for Life so last week I was in the local papers!

Glos Citizen 090513

Anyone wishing to sponsor me please do 🙂 – http://www.justgiving.com/Amanda-Westlake1

Please help me in anyway that you can, it will mean such a lot 🙂 xx