My Cancer Experience : Part Five - After treatments and FAQs

Today March 1st 2017 marks five years since I had my last ever chemotherapy treatment..

This isn't the usual way to mark something but I use this to mark it for two reasons one because there wasn't a specific date that I was told ‘you are all clear’ as I had a lot of complications near the end of the 6 month treatment cycle due to the extensive scaring of my lungs and breathing problems I went on to have a series of scans and tests to ensure my lungs were okay after the chemotherapy had long finished and also as the last time I had that needle pumping drugs into my body it felt like more of a landmark to me because it was over.

The reason why five years is such a big landmark is at this stage the chances of it returning drop significantly. This is something that will always be in the back of my mind for the rest of my life but its a little less scary now.

I will put some tips IMO for people going through it or people who know people going through it, I'm not a Dr I'm just throwing ideas out there from my experience.

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So once all of the treatments are over and you just have to go back to see the specialist once in a while you can tell people you're ‘better’ it is very easy to begin to feel lost very fast, you go from being prodded and poked on a daily basis, being asked so many questions about how you've been living your life from your diet to the unmentionables to then go to literally nothing it can be very strange.

In my case within a few months of beginning my treatment I pretty much started to look like my ‘normal’ self again apart from my hair being shorter but my weight was back, I was going out clubbing and socialising like nothing had changed. Nobody would say to look at me that later that week I would be pumped with radioactive drugs and be looking and feeling like fresh hell. Once you start to look better people definitely don't understand and start to under estimate what is really going on because surely somebody who looks how I did at this time couldn't have been going through something so life changing. This is a classic case of not judging a book by it's cover which i'm pretty used to but I could imagine has the possibility to really upset some people.

For around 8-12 months after my treatment had officially ended I was still at a dangerously low level immunity, energy and susceptible to every cold, flu and germ going as well as my lung damage being looked into. Still having to be very careful cleaning everything all the time, limited eating options which was similar to eating like a pregnant lady no raw fish etc and not being able to eat out places (or in my case being extremely careful what I ordered off the menu and where from). Feeling quite nauseous with a motion sickness like feeling from time to time and also still dealing with a lot of mental demons/rapid changes. I wasn't able to go back to work which to most people sounds like heaven it was for the first month or so but there is only so much daytime TV and shopping one person can do before you just want to scream. The whole diagnosis, treatment and recovery process left me out of work for almost 2 years by which time I was itching to get back to normal life however I was very much restricted my job I had at the time had involved a lot of lifting, running up and down stairs and getting up very early which looking back now I probably would have done myself more harm than good had my Dr let me go back as much as I loved that job this was not something I was able to go back to even a year later. The job was far too strenuous and the damage to my lungs would mean it would take a while before I could even think about being that active again.

Some of the things I had to do whilst I was ill I shouldn't really have been doing but needs must I lived on my own so I still had to cook, clean and do my shopping as I didn't have anybody to really help me at all.

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This experience has taught me many things including what I am capable of mentally and physically as a person had you told me 6 years ago I would have gone through such a tough time and still come out the other side the person I am today I would have laughed out loud. If I can look after myself to the level I had to and remain positive through this the trivial things I may get complacent about now aren't even comparable. We all have bad days and even I forget how far I have come from time to time we all do.

Two years after my last treatment I took part in the cancer research race for life with my mum to raise money for cancer research. Two of my colleagues are doing walks/runs for cancer research if you want to donate at all.

Sarahs Page

Carly's Page

I tell every person that I discuss this with that I truly believe my positive attitude played a huge factor of me getting through one of the worlds deadliest illnesses the way I did.

I laughed, I cried, Sometimes I wanted to give up all together but I have to be grateful because so many people don’t make it and get diagnosed too late to even try. I am so lucky.

The love of my life aka my grandad died of lung cancer when I was 11 I never thought I would one day go through a similar experience as him. Its unfortunate that so many people are affected by cancer in their lifetime in one way or another. I have friends who are without parents, children, siblings and friends because of cancer my heart goes out to each and every one of them.

At times I am not entirely sure why me to be honest but It is not something that I am unappreciative of ever, I try to go forward in life knowing this is a second chance.

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Tips and advice:

Suffers and Survivors - 

• Take somebody with you to the hospital who is going to get you laughing again, we all have friends and family members for different occasions. I couldn't have go through those long hospital days without my strong mother who laughed along with me to stop us both from crying instead.
• Also prepare yourself with loads of ‘things to do’ books, colouring, a tablet, handheld console or simply a pen and paper.
• It’s scary and it might feel like you're the only person in the world going through it but don’t push your loved ones away because they don't totally understand, they are not hurting the same but they most likely are in their own way.
• If you have the money to look online (amazon,ebay etc) or go to a local beauty supply store and look for lace front or full lace wigs. The NHS wigs are free and will do but they are synthetic hair and bulky. There are various videos on YouTube about making wig look natural, reviews of suppliers and how to style them. They range anything from about £40+ depending on what you want.
• Speak to or visit the site for Macmillan cancer support they are honestly so helpful, knowledgeable, have so much literature and advice that they can offer you and your loved ones with.

Friends and family: 

• If ever there is a time to just do the most random stuff with the person going through this, the time is now. Depending on how they are feeling go out to do activities, have a movie night/sleep over, take a mini breakaway. Most importantly have a conversation. 
• When they are in this bubble of not able to be ‘normal’ it is so easy for people to shut each other out and avoid talking this is not the best way for all.
• Let the person know that you are there for them, with all of the things that come along with having cancer they may not want to be a burden or ask.
• Don’t treat them like they are dying.
• Macmillan and the hospital counsellors are there for you aswell not just the person affected by the cancer definitely take a look what they have to offer if not for yourself for the person who is ill and may not be able to look into these things themselves.

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If anybody has any questions at all, I’m always happy to share my experience or help anybody if I can. Email me at: yellauxbusiness@gmail.com or if you have me on any social media feel free to message me. Never think that it is something I wouldn't want to help with or talk about, If my experience can help anybody I am more than happy to discuss.

I’m also so very grateful for anybody who has taken their time out to read any or all of this series. I know everything is video based these days but I’m not confident enough and my accent is not the best for me to be doing all that but thank you, spread the knowledge and I pray this is not something any of you or your loved ones have to ever go through.

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Links to the other parts of this series:

Part One : Discovering a problem

Part Two: Finding out and telling others 

Part Three: Treatments and scans
Part Four: Chemotherapy and side effects.

Macmillan's website

Information in this post is of my personal experience and may differ from other cases.

My Cancer Experience : Part Three - Treatments

Disclaimer: I am not a Doctor, this information is going on what I know to be true and went through.

 This may differ slightly on a case by case basis but this is the general idea.

Also, this post is going to give details of treatments (no nasty pictures) but I will put a * next to the title if it has any graphic details in.

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People don’t know much about the treatment for cancer and the fact that you have to go through so many steps before you even get to the actual chemotherapy.

Weight loss/gain:

Since I hit puberty I have always been on or around 8 st, I could literally eat whatever I wanted and not lose or put on very much weight at all. I presume youth had a part to play in that.

As I was going through the year of feeling ill and trying to find out what was wrong with me I went down to 7st at my lowest and then due to the steroids in the chemotherapy treatment I very quickly gained back the weight and some unfortunately going up to around 12st which you can imagine was crazy for me who has always been used to being naturally slim-ish. I’m still dealing with the affects the steroids had on my body and getting used to being more cautious about what I eat etc.

This is something most people deal with at some point in there life unfortunately for me it was in my early 20s instead of the old ‘middle age spread’.

Blood transfusion:

During my stay in the first hospital where they were trying to discover what was up with me I had to have a blood transfusion. I've always had low iron, mild anaemia and I was born jaundice so being ill led to me having to have the blood transfusion as I was very weak. This wasn't painful just annoying because I had to sleep with this thing pumping loudly next to me, with one arm attached to it. I sleep on my front and this was not possible with a drip attached to me. A few hours in it beeps for the nurse to change the bag.

We can safely say I didn't get much sleep that night &, also now I can't donate blood which I would love to do as this helped me. If you are able to donate blood I would definitely say go for it. I know its cheesy to say but it can literally save somebody life or like me be a step towards being able to get the treatment they need. :(

*Lump removal:

I had two types of lump removal so I will go through both.

The operation type of removal I was put to sleep for so I obviously didn't feel any of it. They try to make the incision in a natural body crease to camouflage it, in my case it was in the crease of my armpit (it doesn’t blend in at all lol). The worst parts of this is having to go through the operation process so not eating for 8 hours prior and I had to deal with the bandages under my arm for a week.

Unfortunately for me my nerves were damaged during this for about 3 months after the operation I had light pins and needles in my upper arm and I now have very little feeling in the top of my one arm, so if you ever tap me on my left side and I don't respond now you know why. Nearly 5 years on the scar is still visible but I very rarely have my armpit up in the air so it doesn't bother me too much, f you ever see me in person you are more than welcome to have a look.

The quick biopsy type this is the first type of lump removal I had just to test the lump and have a better look at what was going on. Mine was in the area between my armpit & side boob, they inject you with a little local anaesthetic and then (this is going to sound crazy) use a little hole punch machine to make a hole in your skin to get to the lump.

Sounds way worse than it is, I literally felt nothing. She put one of those lame lil circle plasters on it and I was on my way.

I literally couldn't point out now where it was, there is no scar at all. It's more painful to get your ears pierced than to have that done.

C.T (computed tomography) scans:

I have lost count of the amount of times I've had this type of scan done. This is the one that you usually see on TV where you lie on the bed and the bed goes through a big circle (bad explanation, I will try and find a picture and attach it below) let me first of all tell you that how it is shown on TV is so false and misses out most of the detail. 

First of all you are in one of those dreadful thin hospital robes and the room is always cold AF. 

Then dependant on what they are scanning they have to inject this dye into your system which is freezing cold, you can feel it weirdly running through your blood stream and then all of a sudden it randomly feels like you have wet yourself for a few seconds. No exaggeration I even used to set myself up for it knowing it was coming but still felt like I’d pissed myself. Glamorous I know.

If that isn't enough you get onto the bed and they strap you down with these big Velcro straps tightly and wedge a big piece of triangle foam under the crook of your leg or around your head like a if you were on a stretcher. 

If that's not uncomfortable enough for you they tell you to lie still, but relax and you can close your eyes if you wish. Whilst this bed goes back and forth for minutes through that loop and the little lasers flicker around you.. right really feels like your at the spa, NOT. If your claustrophobic this is close to your worst nightmare.

Picture above from:  Cancer Research UK

Here is one of my CT scans:

P.E.T (positron emission tomography) scans:

The PET scan is very similar to the CT scan but the lead up process is slightly different. I’ve had about four of this type of scan over a year. Your not to eat a few hours leading up to this type of scan but you can have water.

A good tip if you are going for this scan which I did each time, If you wear lose clothes with no metal parts they will usually allow you to keep your own clothes on instead of the glam hospital gown so I would wear a sports bra and leggings and they were always fine with that.

This scan takes about two hours as when you get there they inject you with the radioactive tracer dye which absorbs with the natural glucose in your blood and organs to give a clearer view of your entire body. For this to take good affect you would be asked to lie down in the room for about an hour not completely still but just relax, you can drink water and go to the toilet if need be. The hospital I went to said I can bring CD’s with me which I was able to listen to while I lay down and during the actual scan which is nice rather than sitting in silence for what feels like forever.

After the hour as with the CT scan you go into another room, where they strap you in to the bed and go back and forth while the lasers and machine do the magic then you are free to go.

As this type of scan involves radio active fluid you would need to avoid contact with pregnant women, children and elderly for about 24 hours.

*Bone marrow removal:

By far the most painful thing I have experienced to this day, if you have had an epidural then its basically that.

So in my case they needed to take a sample of my bone marrow to determine how far through my body the cancer was. They explained the process to me and in my mind it seemed pretty straight forward.

On the day the doctor asked if I was okay to have a student nurse in so I agreed. I was made to lie on the bed in the foetal position the bars were up on the bed that's when I realised stuff was going to get real.

They then have to numb your lower back/spine as this where they will be taking the bone marrow from. I was not ready for this.. they injected the needle into my spine then it feels like your back is bubbling inside like it may pop like a champagne bottle. I nearly jumped off the bed into my mums lap. They then put this long needle into your back through to the spine and they have to turn it to break through your spine bone my back hurts just thinking about it. Once they are done extracting the bone marrow they let you go.

I asked the doctor to take a look at what they had taken expecting after all that trauma to see a big chuck of my back in the cup it was literally a thin string about 2cm long.

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Before I started writing this I didn't realise exactly how much there was to write about these things so I will divide this into two parts.

The next post will be about: The actual chemotherapy and the side affects.

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Links to the other parts of this series:

Part One : Discovering a problem

Part Two: Finding out and telling others 

information in this post is of my personal experience and may differ from other cases.