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The Diary of a Chemotherapy Mum

1
Ever wonder how it feels? How it really feels to have chemotherapy?

I can tell you might wonder, I know I did. I had watched the Hollywood version but this couldn’t be true, could it?

Decisions Decisions..

If I am going to be honest, I am not sure that I would have gone down this route at all – had it not been for one very important fact.

I am a mother, first and foremost, and before anything else.

After some serious deliberating and some serious discussions I have made a very important decision. I have decided that I will accept the

SelfishMother.com
2
treatment that has been offered to me (gratefully), so that if ever there comes a day that I fall ill again, I will be able to look my children in the eye and tell them that I did everything I possibly could have to be their mummy for as long as I possibly could.

The thing is, that something just doesn’t sit well with me about chemotherapy itself. It feels like the only option, but at the same time somewhere in the back of my mind there is an unsettling gut feeling that I will be poisoning all the perfectly good cells too. The chances of

SelfishMother.com
3
reoccurrence is slim in my case, but in the end I have to ask myself;

‘At what point would the chances be slim enough for me to convince myself that I do not need it?’

In my heart of hearts I know the answer, that, and the added element of fear has helped make my mind up.

It turns out that it’s difficult to explain what chemo feels like. Everyone’s experience is different (it’s true) and the cocktail of drugs that you can be given varies – everyone reacts differently.  But that is not really what you want to hear when you are trying to

SelfishMother.com
4
prepare yourself for a round of chemo.  You just need to know, and not only do you need to know, but those around you who are trying to be there for you need to know too.

In fairness my nurse has offered to put me in touch with others of my own age, those who had been though the experience (those who had both good and bad experiences) but in all honesty, I am quite a private person. I am not ready to talk to others at this point. Personally I find reading rather than talking is easier, so this is my feeble attempt at actually saying it out loud –

SelfishMother.com
5
the unspoken rule so to speak.

Chemo Session #1

After the initial diagnosis, the facts, the figures and all the jargon, the treatment begins. Time to rid the body of all of the rogue cells that could be floating about. Before going for my first session I did the one thing that you are told not to do.  I research on the Internet, desperately trying to find something that will tell me what it will actually feel like. I have probably over–researched but I like to know everything, I did the same when I was pregnant too.

Lisa Lynch from the C-

SelfishMother.com
6
Word made me laugh, mainly because, like her I too rock up to my first chemo session in trendy jeans, a nice top – a touch of makeup (this is rare as a mum) and a positive attitude.  I announce my arrival to the receptionist in the chemotherapy ward like it is something that I am actually looking forward to (I think we both know that is not true).

I have done all the things that I am supposed to do – drank tonnes of water, visited the dentist, drank yet more water and eaten good food beforehand.  As it turns out the first dose is not as bad as I

SelfishMother.com
7
thought. Although that may have been due to the positive mind set I try to adopt (and also perhaps your body is stronger the first time I am sure).

The ward is surprisingly cheery, as are the nurses. I sit in a nice purple chair and am administered EC (Epirubicin and Chlorophosphomide) manually. As soon as it is all over you are then sent home to deal with the aftermath of how chemotherapy drugs truly affect your body.

The best I can describe it as is the flu or perhaps a VERY bad hangover.  My head feels like it might explode from the pressure,

SelfishMother.com
8
my limbs ache, and the nausea is constant even with the tablets.  The tiredness is overwhelming at times – it is true that chemo tiredness makes you too tired to even tolerate lying down.  You are hungry, but not hungry.  Thirsty, but not thirsty.  You have to drink to try to flush the drugs out of your system if you can, which means constant visits to the toilet.  You shake, go hot and cold and generally feel crap. Luckily I don’t actually throw up or have to be re-admitted to hospital because of infection so I am all too aware that my account of
SelfishMother.com
9
this is not as graphic as it could be.  This is how it has happened to me.  A true, honest account.

[At this point I have to say that I feel quite bad in saying it how it really is, mainly because it seems like an ‘unspoken rule’ that no- one should talk about.  It’s a bit like not telling other expecting mums what it really feels like to go through labour.  It is quite an inbuilt British way I find, that we are brought up to feel as if we shouldn’t talk about illness or pain, and just shoulder it and soldier on.]
But then if no one ever

SelfishMother.com
10
says?
Chemo Session #2

The following doses do tend to get gradually harder – all the same experience but your body starts to question what the hell you are doing to it.  This time I was more prepared, leggings on with a nice top accompanied with a fleecy blanket and several other helpful items in my ‘chemo bag’ that I think might be helpful. All things I forgot last time (nice smelling conditioner, a book, hair things and snacks for the ever – patient husband keeping me company).

It is probably a good time to explain the Cold Cap at this

SelfishMother.com
11
point.  You are offered (but it’s not compulsory) the option of trying to preserve your hair.  The Cold Cap is a helmet with a cold ice coil inside placed onto your head, with the aim to shrink your hair follicles while you receive chemotherapy.  This is a clever little invention, and can in some cases, prevent or minimise hair loss.  I am trying it, and because I can tolerate it (4 hours of tolerating it per session) I have persevered.  I can honestly say that it is the hardest part of my chemotherapy experience, however it has saved my hair so
SelfishMother.com
12
‘every cloud has a silver lining’ I guess.

The second dose is also in the afternoon (the first was a morning session) so the anti-sickness drugs I take when I get home proceeds in keeping me up all night, through the nausea (it is fair to say that I do not look good the following day).
Sleep is key.
Chemo Session #3

Try as I might, (and I am trying to portray the positives in all of this) I have to honestly say that I have worked myself up before my third round.  It is my own fault, we all have ‘off days’ and this day all the little

SelfishMother.com
13
things have gone wrong for me.

Now dressed in leggings, a non-matching jumper, hair thrown up into a bobble and not looking particularly good I have forgotten my hair things, my nice smelling conditioner and other bits and pieces need.  I have remembered my essential fleece (bought by a kind friend) to keep me warm and obviously my now long suffering husband!  The dread of the nausea and the cold cap means that I am snappy and irritable, and generally probably not nice to be around.

The hospital have mislabelled my bloods that are required for

SelfishMother.com
14
the ‘pass’ that you need to have your next dose. So we go to hospital hours early to have everything that I have already gone to great lengths to do yesterday – all over again. The session itself isn’t that bad. I say this because it is no different to the previous two sessions, however the administration of the chemotherapy seems a little quicker this time, to the detriment of my veins I later find out.

Today I really want to draw the curtains around my bay (the wards are generally open) because I just want some level of privacy. In the end

SelfishMother.com
15
I am glad that I don’t draw my curtains, because the lovely lady sitting opposite me just happens to mention that she has also been in hospital since 8am. She tells me that this is her second time (I presume she means second cancer and experience of chemo).  I am aware that she has been merrily chatting to the lady sitting in the next bay to her, who she has obviously befriended during previous sessions and eventually (to my relief) her daughter comes to keep her company.

In telling me her story she has made me realise that I need to ’snap out’

SelfishMother.com
16
of feeling sorry for myself. We are all sitting here in the same situation, and some worse than others. Chemotherapy is shitty, there is no two ways about it BUT and here is the big but, it is an extremely humbling process and one I intend to learn from.

Just Keep Going

My husband thinks that I am the worst patient ever.  I think this somewhat annoying trait (for those trying to care for you) and I may have inherited it from my mother. You see, my sisters and I seem to have this inbuilt determination to just keep going (probably the best thing my

SelfishMother.com
17
mum has ever given to me) and so stopping for chemotherapy is not something that sits well with me really.

Having said that, you have to know when you have met your match and I can honestly say that I have met my match with this one, well and truly.  I considered not writing anymore because I am now struggling, and that is putting it mildly. BUT I did say that I would write a true and honest account so here it is – warts and all.

Chemo session # 4

This morning my little boy announced that he did not want me to go.  This unexpectedly jolted

SelfishMother.com
18
me, because up until this point he had not made such an outright statement about the general goings on. The truth is that I don’t want to come into hospital either – even less now that he has said that.  So I told him the truth, I do not want to go to hospital, but that daddy will take me and have me home for teatime. I just need a quick dose of my medicine that’s all.  He seems satisfied with the answer and a cuddle, but I know deep down that he will worry about this in his little head because that’s just the way he is.

Today is the M.O.T

SelfishMother.com
19
morning with the oncologist where they check that your body is coping with the chemotherapy drugs (well as much as can be expected).  We also briefly discuss my blackened veins that are now struggling to stay open due to the chemo drugs harming them. She has suggested using my other arm as an input (something I am trying to avoid, as that is my weaker side following surgery). The fourth chemo dose is ok – sort of, I mean my veins are protesting more – they have definitely decided that chemo isn’t their thing, but other than that it was the same
SelfishMother.com
20
drill.

Chemo session # 5

My children’s behaviour is starting to go down the pan.  They are being kindly looked after by my mum and sister, and treated and placated – and they are doing so well, but deep down I know that they need more time with their mummy.  You see, I say no (a lot less frequently nowadays) however I do say no, and mean it when I do.

My daughter made a bold statement that she wanted not just one, but three ’sleep overs’ at grandma’s house this morning (the morning of my fifth session).  I am glad and relieved that she

SelfishMother.com
21
feels this way about being away from home at the young age of 3.  However, after the first night she whispered to my mum that she wants to come home again – and of course she has.  She ran straight upstairs to my bedroom this evening and lay her little head next to mine, gave me a smile, and snuggled into me falling asleep on our bed.

Chemo session # 6

I am unsure of what to say about this one, other than it hurts.

Not physically but emotionally.  Ridiculously I seem to have forgotten a little bit about how it really feels during and

SelfishMother.com
22
afterwards. Today I have been starkly reminded.

Again I somehow manage not to actually throw up and I reluctantly agree with my chemo nurse in my pre- assessment that I have had it fairly easy with the side effects of the treatment overall (although it doesn’t feel like it). All I will say is this – I miss my babies.  I miss them so much it hurts my heart, and I have only just seen them this morning when I managed the school/ nursery drop off.  They are only away for a day or two each time so I have no idea where all the emotion has come

SelfishMother.com
23
from?
It is a very strong feeling that only another mum would understand.
The only thing that has helped me through this one, have been the very kind words of a friend just telling me about something normal this afternoon (something other than cancer) as it feels as if the ’C word’ has been all-consuming today.

So there you have it.  The unspoken rule.  Not always pretty, not always positive, but very real and very true, and now you know.

It is what it is.

SelfishMother.com

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- 18 May 16

Ever wonder how it feels? How it really feels to have chemotherapy?

I can tell you might wonder, I know I did. I had watched the Hollywood version but this couldn’t be true, could it?

Decisions Decisions..

If I am going to be honest, I am not sure that I would have gone down this route at all – had it not been for one very important fact.

I am a mother, first and foremost, and before anything else.

After some serious deliberating and some serious discussions I have made a very important decision. I have decided that I will accept the treatment that has been offered to me (gratefully), so that if ever there comes a day that I fall ill again, I will be able to look my children in the eye and tell them that I did everything I possibly could have to be their mummy for as long as I possibly could.

The thing is, that something just doesn’t sit well with me about chemotherapy itself. It feels like the only option, but at the same time somewhere in the back of my mind there is an unsettling gut feeling that I will be poisoning all the perfectly good cells too. The chances of reoccurrence is slim in my case, but in the end I have to ask myself;

‘At what point would the chances be slim enough for me to convince myself that I do not need it?’

In my heart of hearts I know the answer, that, and the added element of fear has helped make my mind up.

It turns out that it’s difficult to explain what chemo feels like. Everyone’s experience is different (it’s true) and the cocktail of drugs that you can be given varies – everyone reacts differently.  But that is not really what you want to hear when you are trying to prepare yourself for a round of chemo.  You just need to know, and not only do you need to know, but those around you who are trying to be there for you need to know too.

In fairness my nurse has offered to put me in touch with others of my own age, those who had been though the experience (those who had both good and bad experiences) but in all honesty, I am quite a private person. I am not ready to talk to others at this point. Personally I find reading rather than talking is easier, so this is my feeble attempt at actually saying it out loud – the unspoken rule so to speak.

Chemo Session #1

After the initial diagnosis, the facts, the figures and all the jargon, the treatment begins. Time to rid the body of all of the rogue cells that could be floating about. Before going for my first session I did the one thing that you are told not to do.  I research on the Internet, desperately trying to find something that will tell me what it will actually feel like. I have probably over–researched but I like to know everything, I did the same when I was pregnant too.

Lisa Lynch from the C- Word made me laugh, mainly because, like her I too rock up to my first chemo session in trendy jeans, a nice top – a touch of makeup (this is rare as a mum) and a positive attitude.  I announce my arrival to the receptionist in the chemotherapy ward like it is something that I am actually looking forward to (I think we both know that is not true).

I have done all the things that I am supposed to do – drank tonnes of water, visited the dentist, drank yet more water and eaten good food beforehand.  As it turns out the first dose is not as bad as I thought. Although that may have been due to the positive mind set I try to adopt (and also perhaps your body is stronger the first time I am sure).

The ward is surprisingly cheery, as are the nurses. I sit in a nice purple chair and am administered EC (Epirubicin and Chlorophosphomide) manually. As soon as it is all over you are then sent home to deal with the aftermath of how chemotherapy drugs truly affect your body.

The best I can describe it as is the flu or perhaps a VERY bad hangover.  My head feels like it might explode from the pressure, my limbs ache, and the nausea is constant even with the tablets.  The tiredness is overwhelming at times – it is true that chemo tiredness makes you too tired to even tolerate lying down.  You are hungry, but not hungry.  Thirsty, but not thirsty.  You have to drink to try to flush the drugs out of your system if you can, which means constant visits to the toilet.  You shake, go hot and cold and generally feel crap. Luckily I don’t actually throw up or have to be re-admitted to hospital because of infection so I am all too aware that my account of this is not as graphic as it could be.  This is how it has happened to me.  A true, honest account.

[At this point I have to say that I feel quite bad in saying it how it really is, mainly because it seems like an ‘unspoken rule’ that no- one should talk about.  It’s a bit like not telling other expecting mums what it really feels like to go through labour.  It is quite an inbuilt British way I find, that we are brought up to feel as if we shouldn’t talk about illness or pain, and just shoulder it and soldier on.]

But then if no one ever says?

Chemo Session #2

The following doses do tend to get gradually harder – all the same experience but your body starts to question what the hell you are doing to it.  This time I was more prepared, leggings on with a nice top accompanied with a fleecy blanket and several other helpful items in my ‘chemo bag’ that I think might be helpful. All things I forgot last time (nice smelling conditioner, a book, hair things and snacks for the ever – patient husband keeping me company).

It is probably a good time to explain the Cold Cap at this point.  You are offered (but it’s not compulsory) the option of trying to preserve your hair.  The Cold Cap is a helmet with a cold ice coil inside placed onto your head, with the aim to shrink your hair follicles while you receive chemotherapy.  This is a clever little invention, and can in some cases, prevent or minimise hair loss.  I am trying it, and because I can tolerate it (4 hours of tolerating it per session) I have persevered.  I can honestly say that it is the hardest part of my chemotherapy experience, however it has saved my hair so ‘every cloud has a silver lining’ I guess.

The second dose is also in the afternoon (the first was a morning session) so the anti-sickness drugs I take when I get home proceeds in keeping me up all night, through the nausea (it is fair to say that I do not look good the following day).

Sleep is key.

Chemo Session #3

Try as I might, (and I am trying to portray the positives in all of this) I have to honestly say that I have worked myself up before my third round.  It is my own fault, we all have ‘off days’ and this day all the little things have gone wrong for me.

Now dressed in leggings, a non-matching jumper, hair thrown up into a bobble and not looking particularly good I have forgotten my hair things, my nice smelling conditioner and other bits and pieces need.  I have remembered my essential fleece (bought by a kind friend) to keep me warm and obviously my now long suffering husband!  The dread of the nausea and the cold cap means that I am snappy and irritable, and generally probably not nice to be around.

The hospital have mislabelled my bloods that are required for the ‘pass’ that you need to have your next dose. So we go to hospital hours early to have everything that I have already gone to great lengths to do yesterday – all over again. The session itself isn’t that bad. I say this because it is no different to the previous two sessions, however the administration of the chemotherapy seems a little quicker this time, to the detriment of my veins I later find out.

Today I really want to draw the curtains around my bay (the wards are generally open) because I just want some level of privacy. In the end I am glad that I don’t draw my curtains, because the lovely lady sitting opposite me just happens to mention that she has also been in hospital since 8am. She tells me that this is her second time (I presume she means second cancer and experience of chemo).  I am aware that she has been merrily chatting to the lady sitting in the next bay to her, who she has obviously befriended during previous sessions and eventually (to my relief) her daughter comes to keep her company.

In telling me her story she has made me realise that I need to ‘snap out’ of feeling sorry for myself. We are all sitting here in the same situation, and some worse than others. Chemotherapy is shitty, there is no two ways about it BUT and here is the big but, it is an extremely humbling process and one I intend to learn from.

Just Keep Going

My husband thinks that I am the worst patient ever.  I think this somewhat annoying trait (for those trying to care for you) and I may have inherited it from my mother. You see, my sisters and I seem to have this inbuilt determination to just keep going (probably the best thing my mum has ever given to me) and so stopping for chemotherapy is not something that sits well with me really.

Having said that, you have to know when you have met your match and I can honestly say that I have met my match with this one, well and truly.  I considered not writing anymore because I am now struggling, and that is putting it mildly. BUT I did say that I would write a true and honest account so here it is – warts and all.

Chemo session # 4

This morning my little boy announced that he did not want me to go.  This unexpectedly jolted me, because up until this point he had not made such an outright statement about the general goings on. The truth is that I don’t want to come into hospital either – even less now that he has said that.  So I told him the truth, I do not want to go to hospital, but that daddy will take me and have me home for teatime. I just need a quick dose of my medicine that’s all.  He seems satisfied with the answer and a cuddle, but I know deep down that he will worry about this in his little head because that’s just the way he is.

Today is the M.O.T morning with the oncologist where they check that your body is coping with the chemotherapy drugs (well as much as can be expected).  We also briefly discuss my blackened veins that are now struggling to stay open due to the chemo drugs harming them. She has suggested using my other arm as an input (something I am trying to avoid, as that is my weaker side following surgery). The fourth chemo dose is ok – sort of, I mean my veins are protesting more – they have definitely decided that chemo isn’t their thing, but other than that it was the same drill.

Chemo session # 5

My children’s behaviour is starting to go down the pan.  They are being kindly looked after by my mum and sister, and treated and placated – and they are doing so well, but deep down I know that they need more time with their mummy.  You see, I say no (a lot less frequently nowadays) however I do say no, and mean it when I do.

My daughter made a bold statement that she wanted not just one, but three ‘sleep overs’ at grandma’s house this morning (the morning of my fifth session).  I am glad and relieved that she feels this way about being away from home at the young age of 3.  However, after the first night she whispered to my mum that she wants to come home again – and of course she has.  She ran straight upstairs to my bedroom this evening and lay her little head next to mine, gave me a smile, and snuggled into me falling asleep on our bed.

Chemo session # 6

I am unsure of what to say about this one, other than it hurts.

Not physically but emotionally.  Ridiculously I seem to have forgotten a little bit about how it really feels during and afterwards. Today I have been starkly reminded.

Again I somehow manage not to actually throw up and I reluctantly agree with my chemo nurse in my pre- assessment that I have had it fairly easy with the side effects of the treatment overall (although it doesn’t feel like it). All I will say is this – I miss my babies.  I miss them so much it hurts my heart, and I have only just seen them this morning when I managed the school/ nursery drop off.  They are only away for a day or two each time so I have no idea where all the emotion has come from?

It is a very strong feeling that only another mum would understand.

The only thing that has helped me through this one, have been the very kind words of a friend just telling me about something normal this afternoon (something other than cancer) as it feels as if the ‘C word’ has been all-consuming today.

So there you have it.  The unspoken rule.  Not always pretty, not always positive, but very real and very true, and now you know.

It is what it is.

It is what it is

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