The Trucking Aftermath of Self-pity

The Recovery

So lets talk about what happens with your life after cancer, how it can still affect you well after treatment, when your’re trying to move on and pick up all the pieces after all its destruction!

I’m just writing it as it comes so I apologise if it goes off in places. I guess I’m using it today to vent my frustrations… that’s the whole point of this, isn’t it? It’s just an open diary that everyone can read!

As I’m sure you can tell, I’ve been getting my life back. Day trips out with friends, weddings, festivals. Anything I wanna do, I do, I have over 18 months worth of life to catch up on, you know!

A selection from Truck Fest at the weekend

Cancer Fatigue

Today I am tired. Down to my bones, dog tired. When I get like this It’s hard to move. Everything is sluggish. My movements, My brain. It’s a big self-pity fest and I fucking hate it. I get emotional and cry over the stupidest of things. That just pisses me off more. I am not an irrational person.

The worst of being fatigued is when I get like it my head hurts again. Not headaches I mean the hair follicle pain that I talked about before in Hair today, Gone tomorrow is back. It’s just constantly sore. I can’t touch it, sleep on it and when it’s at its worst wash it. It’s only in patches, running from ear to ear, on what I call my grandpa line. But it stops me from wearing my scarves and headbands for long periods. As you can probably tell from recent Instagram pics it’s growing fast, and up! So I’ve been using headbands to keep it up in this heat.

I’m finding I’m very forgetful at the moment too. I can quite literally be in the middle of a conversation and it’s gone. Or some one can tell me to do something and I’ve forgotten.

We’ve got builders round at the minute and I had to be told repeatedly what the orders of drinks were… and I don’t mean after a few minutes! I mean I was told, instantly forgot, told again, forgot, retold, forgot it’s enough to pull your own hair out! Hurting follicles or not!

Don’t even get me started on today. Working on my laptop, I got up to make said builders a drink (don’t worry, it’s written down now!) and came back to find my glasses. I actually had an “oh shit” moment checking to see if I have become that person who leaves them on their head and walks around aimlessly! But no! I could not find them anywhere! I even went upstairs to find them knowing full well I hadn’t been up there!

Turns out Hugo nicked them and they were down the side of the chair!! How the hell he was so gentle with them beats me but things like this actually makes me feel like I’m going mental… apparently he’s not on my side in all of this!

I’m just frustrated because I feel like I’m being punished for every time I go out and have fun. It’s like a constant “ah ah ah, don’t forget I’m still fucking here!”. I know I can’t expect to escape all this scot-free. That the things I have been through is life changing and most probably damaging to my body. But all I want is a fucking break from it!

It could be possible that within time, the aches, pains, emotional despair and self-pity will ease. If you catch me on a good working day, then I’m good. I’d say I’m like 85% back to my normal self.

This is not going to be a long post today… to be frank, I just can’t be bothered. Any suggestions to help with sore hair follicles will be greatly appreciated. Over the counter painkillers, showers and scalp massaging does not help.

Dirty Old Brasstards – This was a nice little discovery we made when we were trying to avoid the rain on Friday night.

Cancer 101

So obviously there are no rules to cancer or the treatments that may follow. No rules. No map. No way of teaching. Nothing. And that means there is no actual way I can tell you how to deal with cancer and the treatment that comes with it. All I can do is give you an insight to the symptoms and effects I experienced with the treatment I recieved.
According to Cancer Research UK‘s website, 1 in 2 people in the UK born after 1960 will be diagnosed with some form of cancer durning their lifetime.
I have found that since starting my blog I have had a few people contact me on what to expect when they undergo chemotherapy. What to expect, how can they prepare themselves, etc. So below I have created a post on what to expect and what is good to know before treatment begins. Whether you are just curious, about to go through treatment yourself or know of someone that may find this helpful and you’re just doing some research, please be aware that this is what I discovered for myself, experiences vary and you may find you have more symptoms than what I did or if you are lucky, less! My experience is UK based under the care of the NHS with Intravenous Chemotherapy and External Radiotherapy. I’ve also had Internal Radiotherapy known as Brachytherapy but this is not discussed in this post. There are hundreds of varieties of chemotherapy and can be given in different forms. If you would like more of an overview of chemotherapy then click here. You can also find more indepth information here which may answer any questions you may have. The Chemotherapy drugs I have experienced are Paclitaxel, Carboplatin and Cisplatin.
Feel free to message me if I have missed something or if you want me to go into more depth in certain areas! You can also find at the bottom of this page some relavent links to previous posts I have created when undergoing treatment. If you find you want more, then I have set up an easier system where you can now look back on older posts too. Take a look under the archive, it is linked in the drop down menu above, under the heading “blog” or if you prefer click here. If you are that dedicated then Kudos! I’m grateful that I have been of some use!

 

OK, first things first, don’t believe everything you’ve heard about chemo. Some chemo’s you don’t lose your hair. My first chemo actually made me feel better and function for a few days. If you are sick or feel nauseous constantly then tell the nursing team. There’s no need to feel like that any more. They have hundreds of varieties of anti-sickness. Pills, powders, dissolvables the lot.

If you haven’t started chemo yet and have time, book a dentists appointment for a check up. I would still do it even if you’ve been there in the last couple of months. It keeps them in the loop of your condition but also they may do any work before chemo begins if it needs it. Dentist’s don’t like to touch you, unless they absolutely have to, when you’re undergoing treatment.

If it’s a long infusion, as in you’re in for the day, take a supply. Lunch will be provided for the person going through treatment but not for any others who join you for company. Take a blanket to keep warm, then you don’t have to worry about taking jumpers on and off before being hooked up to the IV. Also I found I was always on the colder side as sometimes the chemo going into me was on the cool side and that does make you cold fast.

Take snacks. I called it my junk food treat bag. Whatever you want take it. Take plenty. Eat it whenever you want too. It’s for you and the person going with you because they will need it as much as you.

Books, puzzles, TV series, movies, music, if you have the option to download and bring it with you, do it. But don’t be surprised if you don’t have the function or attention span to use any of it. I pretty much slept the whole time. But it’s there for your chemo buddy.

Don’t be proud, have a chemo buddy!! It’s easier to be with someone then on your own.

Take warm socks. If they have a grip to the base of them then you don’t have to worry about the faff of taking your shoes on and off.

If you’re in for a long infusion, and you can, ask for a port for your chemo. This is something I discovered recently and wished I asked for it for myself! They don’t tend to like to do it unless they have to, or you’re further into your chemo program. But it’s easier and kinder to you when administering the drugs. You then won’t have to be jabbed everytime to get a cannula in and worry about collapsed veins. Chemo can be harsh on the veins and can toughen them if used too often which can make it sore for you. If you don’t have a port then make sure you rotate arms each time. With a port, you just can’t get it wet but if I’m right in thinking, there’s waterproof sheaths to put over them that the nurses can supply you with.

If you take any non-prescriptive supplements talk to your oncology team to see if its OK to still take them. Some supplements can interfere with the chemo.

Not all chemos make you lose your hair. My first chemo I half lost it. It just thinned a lot. Second chemo I lost it all. Don’t be surprised if you find you have patches of baldness. First lot of chemo made me look like I had a monk cut! Bald on top but hair around the sides. Alternatively, your hair can go all in one go! Second lot of chemo I knew I was gonna lose it all in one go, I could feel it! No time for clippering, no preperation.

There are options to prevent hair loss like the cold cap. That’s personal if you want to use it. Depends on who you talk to on how it feels. Some don’t like it, some feel nothing of it. It basically cools the head down to keep the hair follicles cool to prevent the chemo damaging the hair follicle and prevent hair loss. Using a cold cap doesn’t always work though! My second chemo was strong and a cold cap would never have prevented me from losing my hair.

If you lose hair and want a wig you will have to pay. However if you are in hospital and have chemo when admitted (the day unit is not included) then you can get a prescription and it will be free.

All prescriptions are now free. Make sure you fill in a medical exemption certificate.

Car parking should be free when under chemo and radiotherapy… Just check with the hospital you attend…  I hope it’s not just available at my hospital!!

Eat what you want whenever you want. As my chemo was in 3 week cycles I found I didn’t eat a lot for the first week then a bit more by the second then a lot on the third to build me up for the chemo. Eat junk but also eat healthy… If you can! You may find textures and flavours change. I lost my taste buds the first week of my chemo cycle so strong flavours worked best for me. Meats and fats made me feel sick and were the kickstarter to queasiness if I ate them. By the end of chemo, once it had built up in my body the things that I found in the first week of the cycle were staying with me. So eat whatever you can and what ever you damn well please!!!

Look after your hands and feet. Neuropathy (numbness) is common in these areas during and after chemo. I still have neuropathy in the balls of my feet and I’m 7 months post chemo. It may come back but it may not. Keeping active can help. A brief short walk is good enough.

If you can, get out everyday. Even if its for 5 minutes. But be sensible. Don’t go in the rain and get wet. Avoid anyone with a cold or even a sniffle.

Listen to your body. You’re gonna feel tired. Sleep! Don’t over do it and compare it to what you used to be able to do.

Chemo brain is a thing. You may experience forgetfulness or find it hard to function or even pay attention. For a few days after chemo I zoned out on everything. I couldn’t pay attention to anything. It’s common to find you’re forgetful for weeks/months after it has all finished.

Keep your mouth healthy. If you already suffer from mouth ulcers then talk to your team. They may be able to suggest a good mouth wash that will help. Chemo can give you bad mouth ulcers. This is not something I found I suffered with myself so my experience is limited here.

Keep well moisturised. Chemo will make your skin dry and it will prevent any soreness from occurring. Don’t use perfumed moisturisers. If you are having radiotherapy too only use what they recommend. Cetraben or any similar brands that can come on prescription are fine. DON’T USE ANY OILS!!! AT ALL!!! Aveeno is a good moisturiser brand that you can pick up anywhere and can be still used if you’re undergoing radiotherapy too.

Discolouration or damage can occur to the nails. Ridges, lines, bruising or even the nail itself can fall off. Don’t be surprised if this happens. This didn’t happen to me but I found mine went very brittle. As a beauty therapist, I have had clients who have been advised by the nursing staff themselves to get their nails done. With Gels or normal nail paint is fine, but not Acrylics!! You won’t have the strength there if they’re on the weaker side, if you go for normal nail paint as to UV Gels. They advise this for one, so you don’t see the discolouration to the nail and two, so you have a bit of strength for the nail which may preserve them. Go for the darker shades if you do happen to have discolouration. You may find that still having regular manicures may not preserve the nail or you may find they drop off after treatment is complete. It takes a good 6 months for fingernails to grow from the base to the top, 12 months for toe nails, so be patient.

You are probably going find everyone has an opinion on what you should try to do to beat cancer. Juicing, going organic, turmuric, cannabis oil, aloe vera. All of these I’ve been told to try by others (who have not had cancer). Take it with a pinch of salt. Whatever you do though DO NOT TRY ANYTHING WITHOUT TALKING TO YOUR ONCOLOGY TEAM. A lot of these things can interfere with chemo and can actually compromise you. Although you’ve probably heard “chemo is a poision” there’s a reason it’s the number 1 go to drug still. Most of these “remedies” are still very much unknown and media stories don’t help. If you dig deeper you’ll find they’ve actually had chemo at some point or surgery along the way.

If you have radiotherapy in the stomach region, be careful of heartburn. The second lot of radiotherapy I had gave me odd bout’s of sickness. I found avoiding oily foods helped. Take anti-sickness if you find it but also tell your doctor. They may put you on a stomach settler to help and prevent. My dad also read of a story of someone who had radiotherapy near his head. He had a mouthful of metal filings and radiotherapy heated these up and gave him bad mouth sores! Again talk to your Radiotherapy team if you have the old style metal filings because they may be able to change them for the more modern filings before treatment begins. It could be a case that it doesnt matter, if your radiotherapy sessions are short and few then it may not be a problem. Each radiotherapy program is different. My first lot of radiotherapy was 15 minutes each appointment for 36 sessions as where my second lot of radiotherapy was no more than 3 minutes and I had 12 sessions there.

Same goes, if in chemo or radiotherapy you get an upset stomach, there are pills to help.

Some anti-sickness pills can be steroids or they may provide you with steroids before your chemo infusion. This can cause the usual steroid symptoms. Added weight, restless leg syndrome, a boost in energy for periods of time… usually at inapropriate times like 3am!

Phew… Ok, I think that is everything that I can think of. If I remember anything else then I’ll add it on. You can also check out some of my older posts that I created when going through treatment. Take a look back on those, if they don’t help then feel free to drop me a message! There are loads of different ways cancer can be treated, so please dont be alarmed if I haven’t talked about any experiences you have had or can’t find the information you are looking for. For any other treatments then please take a look here.

A life of crackers and coke

Hair today, gone tomorrow

When in doubt just add hairspray!

When you become a real life zombie

Chemo 21 and counting… 

Chemo: it’s not me, it’s you!

Baby, it’s just never gonna happen

Chemo: it’s not me, it’s you!

I’ve had enough. It’s taking its toll. It’s slowly sucking the life of who I am out of me.
Oh how over dramatic you may think but so very true.
Chemo 6/6… The devil. I am finally… Thank fuck… Done with you.

Its been a while since my last post. It’s all starting to take its toll and it’s hard for me to find the energy from within to concentrate on posts. So I’ve finally had my last chemo. It was delayed by a week due to my blood count being too low and dropping. I’ve had that the last few sessions but the bloods always rose when they tested it again. This time the chemo has finally shown its affects. I had a feeling this was going to happen.

After chemo 5 it took me much longer than normal to recover. I suffered quite badly with sickness and picked up a stomach bug (not the pooping kind, 😂 the awful cramps and can’t keep food down kind) from somewhere too. Scared my dad half to death by passing out and just generally felt like death warmed up for longer than necessary.

Chemo 6 has pretty much been the same. With a good 3 hours of last night throwing up 10/11 times hurling nothing but bile and generally wishing it would stop I’ve reached my limit. I mean… Not my limit limit as in treatment… Just my limit with chemo. I fucking hate it. I hate the incapacity I seem to have as a human being. For crying out loud who cries because they put their t-shirt on the wrong way this morning? I am emotionally and physically exhausted.

The one amazing thing I have to be thankful for to is to the nurses up at the Churchill hospital for being so accommodating to me. As chemo was meant to finish by the end of November it meant I had the whole of December free of treatment… Well technically I have a scan on the 28th but I’m not counting that. Being delayed an extra week they pacified me with my request and set me up for the 30th instead of the 1st 😇 it may seem silly to you because I still feel rubbish for the first part of December but these days there’s not a lot to look forward to so let me have my silly moment 😂

dav
That’s it… I’m DONE!

Chemo 21 and counting… 

I’m writing this one from the hospital today. It’s my chemo day. Session 5/6… Well technically I think it’s chemo number 14 altogether. 14… That’s crazy. And that’s 14 sessions not 14 chemos because if you want to get technical with how many actual chemotherapy treatments, as in chemo drugs, it’s 21… I think.

It’s stupid. You would have thought the amount of treatments I’ve had would be engrained in me. But it’s not. It all blurs into one now. I feel like I am here so frequently every session becomes the same. I’ve nearly spent a whole year in this state now… A whole fucking year. What a waste.

I’m finding it all pretty mentally draining now. I’m fine in myself 90% of the time but it can get to Wednesday/Thursday before chemo and it’s like a dark cloud engulfs me. I know what’s coming.

The day of chemo, driving into the hospital, I mentally feel like I’m a petulant 3 year old being dragged in kicking and screaming. On the outside I’m cool and calm taking it all in my stride. But inside… It’s a whole different story. I don’t want to be here anymore. Don’t make me do this. Please.

Its stupid really. I have to have this. Chemo is making me better in the long run. But I can’t tell you how hard it is for me to not cry and say no to something that in the long run will make me better but for the short term make me feel so fucking awful.

I think I’ve just reached my limit. Don’t worry, I’m not giving up or anything and I’m no way near that point yet but I’m just sick and tired of being pricked and poked and scanned and tested.

They took an x-ray of my chest today. Nothings wrong but my consultant just wants to see how things are going. This is to prepare me for the next round of treatment after chemo.

The x-ray will only give a brush over view. It won’t highlight in detail the tumors. But I guess it gives my consultant a bit more of a guide. Apparently I can’t have a PET/CT scan until 6 weeks after my last chemotherapy session. So I guess any scan won’t happen until the new year. At least I’ll have December and Christmas free of all this shit.

Ah man… What a long day. My neutrophils were low today. Which are to do with my white blood cells and how you fight infections with your white blood cells. They like them to be 1.5 and over but blood tests showed they were below at 0.85 so I didn’t actually start chemo til after 2pm… I’ve been at the hospital since 8am 🙄😩 but at least I had it.

Fed up of waiting, I can’t say I was in a great place this morning. You can probably tell from above. I just wanted to go home. But at least I had it. If I didn’t it would have been delayed to next week and that would have just been a faff.

I really think my new puppa Hugo has helped me. It may be coincidental but it’s the first chemo I’ve had that hasn’t made me feel lousy afterwards. I’m tired but that’s pretty normal. Let’s hope for a better weekend.