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 Four - Chemotheraphy and symptoms

Growing up my top three biggest fears were losing my hair, not having children and of course losing loved ones.

Unfortunately two out of three of these were things that I would have to face like it or not during this battle.

graphic topics labeled with*

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Infertility: 

If you know me outside of work/the internet/clubs you will know I love all of the kids in my family, of my friends dearly and my long term goal has always been to become a primary school teacher. I have always wanted children of my own and still do hopefully one day. 

Of all of the things that ran through my mind when I find out I had cancer I wasn't even aware that fertility could be affected by cancer treatments whatsoever it just isn't something that you associate with it or hear much about. So you can imagine when I was told that this is a possibility I was heart broken to say the least. At the time I found out the severity of this I was in a room with this Dr and my mum as if this big bomb shell wasn't just dropped on me the Dr then immediately proceeded to discuss things like freezing eggs and the process. 

I was extremely overwhelmed by all the information I wasn't expecting to be getting on this day and very upset however I instantly had a new found respect for anybody who goes through IVF as it is not an easy process at all. It is not as simple as having the money and all that designer baby stuff that we are lead to believe. Amongst other things you have to inject yourself daily, record all these things about your body in detail, to have the egg fertilised on the NHS they have all these criteria you and your partner have to meet you would honesty think you were adopting not using your own eggs.

I was sure this was not something that I would be willing to put myself through right now to have the eggs taken when I was still mentally preparing myself for the start of the chemotherapy so opted to pass. What will be will be, if I am supposed to have children I will if not I will love my god babies, nieces and nephews like they are my own and look into adoption possibly.

I will say that this is something that years on every day still haunts my thoughts. My goals in life have never really been heavily about earning loads of money, having possessions or travelling. I just always wanted to work, own a home and be a good wife and mother.

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Hair loss: 

If you speak to most people these days and mention something like a hair dresser cutting more that a millimetre of their hair off you can literally see them cringe right in front of you, nobody wants to lose any hair no matter how much you have. I have always had very long hair since I was a small child always down to the bottom of my back at least and i’d never been one to do anything drastic to it; When I was about 18 I dyed it pink underneath but thats as wild as I got.

When I found out I had cancer I immediately though I'm going to be sick looking and bald. I wasn't ready for this and the thought of having to wear a wig honestly conjured up all kinds of visions in my mind. Although I am no stranger to things of that nature due to being in a black family which is predominantly women and I had previously used partial weaves, clip ins and glued in some tracks but this had always been an optional extra and I was free to take them out at my will and still have hair.

To most people who knew me at this time and to my own surprise this part was something I came around to the idea of quite quickly and pretty much just thought if this is whats happening there is no point trying to fight it. Around two weeks after my first treatment I went to a local barbers a few streets away and got a section of my hair shaved off of the side (Cassie Ventura style) The guy in there was not trying to do it for me whatsoever, I didn't tell him why I was doing it I just said ‘Look, i’ve come here on my own. I haven't bought anybody for moral support this is my decision and I want it off’ eventually and very skeptically he did it (I will attach some pictures below) the next day I had to attend my Aunts wedding in huddersfield and i’m sure my my family who at this point didn't know anything about me being ill must have thought I was totally crazy. 

The first time I noticed a big change wasn't a good experience at all as I rinsed my hair one day which I opted to wash over a bath incase of such occurrence I literally just saw so much of my hair flowing down the bath with the flow of the water. I burst into tears wet hair and all and honestly just sobbed till my hair was nearly dry. I lived on my own at the time and didn't really have anybody to call who I believed would support me. I eventually just went to bed and avoided the mirror at all costs for a few days because I didn't know what to expect.

As my treatments went on I would be so anxious to brush my remaining hair and even waking up every morning I expected to see my whole hair on the pillow next to me, this never happened. It just shed and broke off way more than normal.. after around three months I ended up with really thin hair at the bottom just above shoulder length and it pretty much stayed this way for the rest of my treatment time so I was never bald. It took my hair about a year to grow back, thick and not breaking off and now almost 5 years on my hair is longer than it was before I was ill and in better condition as all the years of my my mum relaxing it and me straightening had long gone.

The hospital do offer a wig fitting service they give you a free wig if you want one and they will even cut it for you, but the options are not the best and for some reason the woman decided a nice Rihanna red would suit me, which I was thankful for but also glad I didn't have to use. Me and my mum did take a nice little day trip to the local “black hair shop” aka beauty supply shops one of the days we had a laugh trying on all kinds of wigs and giving our best Tina turner impressions which I will say lifted my spirits and made me feel slightly better about what options were available to me.

They do also have the option at the hospital to have a ‘cold cap’, this is a gel filled cap you wear during and for a while after your treatment and it is said to reduce the amount of the chemotherapy that reaches your hair follicles. I didn't try this as I had already accepted my fate with my hair. If it works is very much on a case by case basis i've not met anybody who has used one so can't say first hand if this is a good option.

As well as losing your hair on your head you can also potentially lose hair on your entire body head to toe… yes everywhere. In some cases people are said to have different hair colour and/or texture grow back.

Here are some pictures of my hair journey at this time: 

Picture one: is when I shaved half and you can see some of my actual hair at the time.

Picture two: my hair 6 months after and 2 years after last treatment

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Chemotherapy treatment*:

I myself was on a trial treatment call ABVD (Adriamycin, Blemycin, Vinblastine, Dacarbazine) minus the B as I had a high presence of cancer in my lungs which the Blemycin could have reacted badly, as a side effect of this is lung damage which the Dr’s felt they did not want to chance as I would already have a chance of this anyway.

Other side affects may also include: Nausea, Vomiting, Low blood count, Allergic reactions, Neuropathy & Infertility.

At the hospital dependant on your state you either sit in a chair or stay in a hospital bed if your are unable to walk/sit etc. Some people have a permanent line put in their vein usually in the chest area or just a standard cannula which is that thing they put in your vein on the back of your hand and put the big sticker over it to keep it still. You may have seen on TV or had one where they can attach a bag and pump things in to your blood stream. As my treatment was bi-weekly I didn't need a line put in so they would give me a fresh cannula every time I went. This sometimes leaves you with a bit of a bruise for a day or two and on one occasion I had a student nurse spray my blood like a horror movie around the cubicle.

They then hook you up to the machine and you literally get pumped with the various drugs one by one, some are just in a small tube that they combine with the fluids, some have to be protected from day light and some make your urine pink. It’s all quite strange feeling and experiencing but interesting, unfortunately I was not allowed to have anybody sat with me whilst I had this I believe due to the radiation so my mum would disappear for a few hours and come back for me later.

I soon learnt to take a big bag of stuff to do iPad, BlackBerry etc and the nurses kept me tea fuelled. 

The whole process takes a 2-3 hours all together then in my case free to go about the rest of my day I just had to be mindful that I may start to feel nauseous and weak so would often just go home to relax.

There are some strange side affects you get while having the treatments; mine was mainly the feeling of instantly being itchy over you whole body and some of the drugs were very cold when they go through your body. Also TMI** one makes your urine pink.

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Hospital trips:

During my diagnosis, treatment and after care I spent a lot of time at three different hospitals the furthest being around 15 miles away, Approximately 30-40 visits in a 6 month period. Once all of this is over I then had to attend every bi-monthly for blood checks, to be weighed and to check my general health after a year this is reduced to every 4-6 months now 5 years on I have an annual check.

So the hospital appointments don't just stop at your last treatment.

Only one of the hospitals gave us a discount for parking which as you can imagine visiting that often never for short periods of time we ended up spending a lot on over priced parking.

The staff at Wolverhampton hospital I cannot fault one bit they made such a bad time for both me and my mum easier, always willing to help and spoke to me like I was an adult and with empathy. Whereas the hospital I was diagnosed at it was quite a hellish experience I was often stuck in rooms with 5 or very elderly very sick patients who kept me up all night and not being kept informed at all of what was going on until my mum turned up and they would tell her the information.

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Nausea:

For a few days after each course of the treatment you can experience severe nausea and vomiting as a side affect of the drugs. I only experienced nausea on a few occasions very lightly.

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Eating/Diet: 

If you do suffer from nausea you are advised to eat things such as baby food.. because it has a decent amount of nutrition without having any strong harsh flavour for your stomach or to come back up.

As I was a stone and a half under my original weight if I could eat it is best to eat higher calorie foods to try to gain weight so cheese on everything, all the foods you would normally eat in small doses are a go to gain the weight back which along with the steroids to help the chemotherapy didn't take long to return at all.

The only other things about the diet you have to avoid is things like blue cheese and raw food due to your white blood cells being low and being prone to illness easier.

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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.

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

My Cancer Experience : Part Two - Finding Out & Telling Others

If you know me separate to stumbling across my blog you may know that I went through a battle with cancer a few years ago. This was initially my motivation for starting my blog to give people going through it, friends and family of those going through it or those who have been through it some information and an insight.

I did do an initial post talking about how I discovered something was wrong with me, which you can find here.

This post will be about my experiences telling other people and how other people treated me.

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Disclaimer: This is in no way me pointing fingers at people in a malicious way. I just want to highlight to you all that this can happen to any of us or any of our loved ones I was only 23. I want to bring to light how I personally felt and how it could be handled differently by myself and others.

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Finding out myself:

After taking myself to hospital (as per my last post) going through the process of people of having blood tests, CT scans etc over the course of 24 hours. I was stuck in the hospital alone as the hospital I was in didn't have the best visiting hours.

I have this issue I come across often in life where because I look very young for my age people tent to not divulge any information to me directly and wait for my Mum to arrive or somebody that looks older than me. Which when it comes to something like this is very out of order. It's my body and my life any information you have should be given to me directly what if I didn't have a mother or friends to pop in and pass on the message to me.

Anyway I digress.. So randomly in the middle of the day a Dr pulled up to my bedside with 4 student nurses like 'Is it okay if these student nurses sit in while I have a chat with you' at this point I had no idea what was up with me so I agreed. In very little words he basically told me, we believe at this point you have Hodgkin's Lymphoma and will be looking into this further. 

Now I am not a nurse or doctor and this is not something that they teach you in science GCSE so as they all gawped at me waiting for some sort a reaction I was like 'okay' and they shortly left.

I obviously jumped straight on to my phone and googled it.. bad idea! I was instantly bombarded with CANCER & DEATH. In hindsight now my next step was not the best.. but I panicked. I phoned my mum and I literally only said 'Mum. I think I'm going to die.. I have cancer' and burst into tears for the first time. Looking back now I can only imagine my poor mother's whole heart probably sunk into her stomach and smashed into a million pieces on hearing this from her only child but honestly based on the little information I had this was what I was thinking. The Dr had just delivered this life changing information to me so lightly with no loved ones around, student nurses looking at me blankly and didn't provide any further information or 'dumb it down' for me at all.

My mum instantly asked me what was said and ended the call to look into it further. To this day I've never asked her what happened after she hung up I was not in a good place myself at that point. Stuck in a curtained off hospital bed on my own with nobody around me having googled what was wrong with me and assuming the worst.

There was no more visiting hours on the ward after this point so I was left to ponder this information over night. After crying myself to sleep numerous times during the evening I had the joy of being stuck in a ward with five other women screaming and moaning in various pains throughout the night.

The very next day my lovely 5ft0 mother steamed down to the hospital to see me and demand more information. At this point all we knew was it was cancer and it was of the blood.

Eventually after having further tests, heated conversations and scans we got the information that is was stage two Hodgkin's throughout my body most around my lungs (which is why I now have slight lung damage and get chest pains if I do too much) 

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Sharing the news & people finding out:

I personally didn't tell many people face to face I just put it out on my facebook as a short status that this is what is happening to me at the moment and If people can understand why I may not be my normal happy self that would be great. Initially as you can imagine I was inundated with lovely messages and offers of help should they be required.

Finding out what was wrong with me and having an idea of what was to come I decided to hand in my notice at work as I didn't really want to get into the nitty gritty of it with work people who didn't really care for me. So I immediately left work I had not long left my mother's home and got my own place in which I was in a 12 month tenancy for my landlord literally was no help at all and refused to let me out of the tenancy even knowing my illness. So I was stuck with the apartment and no job to pay for it, with the looming idea of going through cancer treatment ahead.

I'll be honest with you not one single person offered to help me, offered me a sofa or a spare room.. but hey. I have been through many bad things in my life and have had to get through it with little or no help so tbh I just got on with it and thought I'll cross that proverbial bridge should I get to it.

During the whole time I was ill and having treatment I would say I lost 95% of my 'close' friends. I'm not sure if they detached themselves because they were scared, because the didn't want to deal with or didn't know how to approach the situation.

Some friends even assumed I would lose my hair and be so ill I wouldn't fit the aesthetic to be seen out with me. People stopped communicating with me and even got upset with me if I wasn't up to attending social events.

I literally had a friend fall out with me because I said 'I might not be able to come out for your birthday night out I will have to see how I feel nearer the day as Chemotherapy can throw me about abit' her response to this was 'You use cancer as an excuse for everything your selfish' True story. Let's just say I am no longer friends with the person to this day for this and many other reasons.

People who I used to spend many days of the week with suddenly lost my number. It showed me that at a time like this you really see who is there 100%.. In my case not many unfortunately.

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Dear Friends and Family:

If one of your loved ones has the misfortune of going through this tough experience (which I hope they never do) I honestly urge you to be there for them in any way you can, because it is something that I would never want anybody else to go through. 

Having not one sole person to turn to when going through this was the hardest part of my experience. If you never put in any effort before or ever again this is the time; make them feel loved, offer positive words, provide them with your company, keep them distracted from what is going on even for a moment. 

Cancer treatment for me and others I have spoken to about it is a very lonely time and the little bit of help I did receive during this time is remembered. 
( I will go into this further next post)


We ( i am guilty too) put so much time in to showing out for social media, taking selfies, working our asses off and even being bored. 

Karma is in your control too, if god forbid you were to take ill:
How many people would legit be there for you? How many people owe you one? 

Before this happened to me I would have sworn up and down everyone would have had my back. Incorrect!

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Thank you in particular to my friends Brina, Faye & Stella who had sleep overs with me, got me out the house & brought me a greggs cakes in the morning etc. Never unappreciated. 

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If you are from the UK and you are dealing with or know somebody who is dealing with the affects of cancer. I urge you to get in contact with Macmillan cancer trust. They honest offered me so much help and support. More than I could have ever imagined.

(I have not been sponsored or asked to say this,  this is from my own experience. I don't have that much influence lol)

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