Soon to start chemotherapy

Don’t drink like I did at the start of the course been sober for 3 days now. Getting healthy and need to stay that way. Suppose I’m saying what we all Know!! Eat good exercise etc etc. It really is that simple. This is my second dose of chemotherapy. Doing it right from now on!! Best to you …

Thanks Jon,

I'm not a drinker, but my eating habits are far from the best. I am trying to eat healthier, but it's not easy. Hopefully I'll adjust.

All the best!

Hi RCFlyer!

How are you doing?

The side-effects are still really minimal at the moment and hopefully will remain this way going forward. The children have returned to school today so I am going to adopt extra-hygienic routines in the hope of keeping the bugs away!

It is not selfish at all and if I can provide some comfort of knowing what to expect and that meds can be tweaked etc, then I feel really happy to be able to help. And I want to be able to give you as much support as possible. 

I'm so glad the antibiotics are working. How are you feeling about tomorrow? 

I know exactly what you mean about trying to keep occupied. It's so tricky and I find my concentration levels really bad at the moment. I'm struggling to fall asleep too since my mind races a bit. I have had recommendations from people to help aid sleep but yet to try them

Perhaps once you start the treatment and get into the routine of it, and the side-effects (if any - fingers crossed for minimal) become manageable, you will find that you be able to do a bit more with your radio control planes. It sounds like such an interesting hobby.

Let me know how you are and then how it all goes tomorrow. Been thinking of you and hoping you are ok. 

You got this!

Speak soon.

Hi Lays88,

Excellent news on managing your chemo side-effects well. That must be a huge relief. It's definitely a tricky time of year for avoiding risk of infection. Especially with school age children in the house. As you say, the best thing you can do is ramp up the hygiene level, and minimise your own contact with people outside the household. We've got my daughter and grandson staying with us at the moment, so I need to be equally careful.

Well I've just had my first infusion, followed by my first tablets. I don't know what's happened to my veins recently, but when I went for my blood test Sunday, it took them six attempts to get anything out of me, and today, it took three attempts (and a bucket of hot water) to get the cannula in. The nurse keep telling me I seem stressed, and my blood pressure readings confirmed this.

Felt a bit strange, kind of a heavy feeling, for the first 20mins or so of the infusion, but things settled for the rest of the time. After it finished, I have been left with a sore and tingly arm around the cannula site.

I completely forgot about what you had previously said about the jaw pain, the first time you try to eat anything. That really caught me out. Oww! Also, being a complete numpty, I merrily chugged down my chemo pills with a glass of cold water, before remembering what else I had been told. Well, we all learn by our mistakes.

Tonight/tomorrow are probably going to be a big indicator of how things are going.

Thanks again for your kind words. I have been trying again to work on my models, and I've managed to get a few maintenance/repair jobs done. So things are looking good on that front.

Our chats are of the biggest help to me, for coping with this experience. I am so grateful that you take the time to respond.

Wishing you and your family well.

Updates to follow......

Hi RCFlyer 

So good to hear from you and I'm really pleased your chemo is finally underway and you can now carry on this mad journey we are on. Now you've started, there is an end date of treatment you can work towards.

I've just had my week break from the tablets and it really is something to look forward to. Minimal side-effects and a bit more energy. Starting cycle 2 tomorrow!

So sorry to hear they struggled with your veins - I mean, to suggest you're stressed is stating the obvious isn't it!! It's a pretty anxious time we find ourselves in. When the nurse was doing my blood tests yesterday, she said to make sure I drink lots of water beforehand. I'm not sure if this will help.

How are the tingly sensations? I found they subsided after about a week but be extra careful when handling cold things (especially fridge/ freezer foods). The jaw pain is quite a shock isn't it!! Definitely a learning curve and I soon remembered to expect it each time. Not nice but at least it doesn't last long - phew!

How are you going now? Are your anti-sickness meds working ok?

So glad to hear you managed a bit of work on your models It all helps to keeping us distracted!

Being able to converse with you is one of the biggest helps for me also. It nice to have someone to share the same/ similar journey with. Someone who truly understands.

Extra hygiene and lots of rest for the first few days.

Take good care and speak soon.

Hi Lays88,

Great to hear from you, and really happy that you are enjoying your break from the meds. That must be a huge relief.

So far, I think I have been really lucky with my side effects. The worst thing is the jaw pain, but that now seems to be subsiding, although it still catches me out now and again. Nausea has luckily been mild, and so far I have only had to resort to taking that additional anti-sicckness tablets twice. I've got very mild tingling in my feet and hands, but I don't have any issues with touching cold items/surfaces. Similarly, cold drinks affect the roof of my mouth, at the back, but not down into my throat, which was the worry. This effect also seems to be reducing gradually.

Sorry if I sound a bit smug about my experience with the side-effects so far, knowing what you had to go through, but I wanted to give an honest report.

As suggested by the Macmillan nurses, I have been keeping a bit of a diary of my days since the treatment started. I've pasted a copy in below, just in case you might be interested.

I tried phoning the hospital, and posting on the 'Ask a Nurse' part of this site, about the jaw pain, but nothing really useful came of it. Even going to so far as to say that this is not a common phenomenon, but must be down to an underlying infection, and I should contact a dentist immediately. I did find a good thread on this site though, which suggests that it is far more common, and nothing to worry about.

As you say, it really is great to be able to share with you. I just hope I'm not waffling too much.

Make the most of your 'week off'. You can't go too mad with the Dettol wipes.

Take it as easy as you can, and look after yourself. We'll chat again soon.

9Tue, 6 Sept - First infusion

Difficulty finding cannulation site. Hand/arm soaked in warm water, as for previous blood test.

Will try next session with cannula, as I am not keen on having a PICC Line.

Tue, 6 Sept - Evening of first infusion

Arm tender and tingling around the site of the cannula.

First Bite Syndrome when eating (or even drinking), and coughing.

Wed, 7 Sept

0:30 Mild nausea. Took one Metoclopramide to quell.

Woke up twice, early morning, with jaw pain the same as that experienced with first bite.

General tiredness during the day. First bite pain continuing. Jaw beginning to present continual ache.

Eating and drinking causing bouts of hiccups.

Thurs, 8 Sept

Much better night’s sleep. Did not wake with any jaw pain.

Jaw pain reduced, when first eating. Just a bit tired.

Cannula site still a little sore and tender.

Sensitivity to cold drinks reduced. No hiccups.

17:46 Mild nausea. Took one Metoclopramide to quell.

RCFlyer I can’t tell you how happy I am to hear that you have such mild side effects

Metoclopramide seems to be the anti-sickness meds that work. I wasn’t given these initially and the nausea was terrible. I’m so so so pleased they got it right for you! I’m hoping that now I have these, the infusion tomorrow, plus the tablets won’t hit me as badly! Fingers crossed.

Brilliant about the cold touch not affecting you too. I was told this was a real common side effect so was sure you’d experience it but I’m really pleased that you don’t. It really is very different for everyone isn’t it.

I think the ‘first bite’ pain is a common side-effect. I’ve read on other forums of people experiencing this and my nurse mentioned it to me prior to me starting the treatment.

the diary is a very good idea. And I really hope it continues this way for you

it really made me smile reading your message because I was worried that you might have side effects like mine. You are smashing this - really made up for you. And it’s made me feel more positive about tomorrow! Thank you! 

Keep positive and take good care.

speak soon

Hi Lays 88,

It's always great to read your responses to my messages. It really makes my day to know that I can chat openly with you, about what we are both going through.

I'm keeping everything crossed for plain sailing on your next round.

Best wishes.

Hi Lays88,

Just wanted to check in, and see how you are doing with your second round of chemotherapy. I really hope that all is well, and you are coping alright.

Take care!

Hi RCFlyer,

So great to hear from you :)

I really do seem to struggle with the first week of each cycle. Not to mention a bad reaction to the infusion this time. I experienced breathing difficulties and severe nausea immediately after. The nurses were brilliant and reacted quickly to sort me out and then monitored me for a bit after. Extended stay in hospital! Then a week of fatigue, nausea, tingly, painful fingers and a few other side effects. My mum and dad were with me for the first 4 days and then I'm not really sure how I've managed up to now. Breathing through the school runs and sleeping during the day mostly. This week seems to have lasted forever, much like during the first cycle.

The effects seem to be easing up a bit today so hopefully will be a little easier for the next couple of weeks. I think I just have to make it through week 1 of each cycle with these horrible side-effects - only 2 more of those to go.

How have you been? All ok, I hope, with no other side-effects? 

Thank you for checking in - it means a lot to me

Speak soon.