Soon to start chemotherapy

Your reply was not late at all - I got it this morning as I was waiting for my session and it was really lovely to read. Your support is really helping me, so thank you.

Absolutely highly unlikely we'd forget these appointments!! It's on our minds so much. It funny in a way that it a routine of their job, but cancer kind of takes over our lives. oh I am sorry to hear that you need lateral flow tests for each appointment - make sure you just take more precautions when you start your treatment. I was given a letter to say I was eligible for another covid booster which I will likely get. It was suggested to have it done in the week break.

I'm glad you found some support in your friend and it does sound very comforting to hear from people who actually have experienced it. That video you watched sounds highly unhelpful and I would try to erase it from your mind if I were you. I can tell you already that I have had similar reactions to your friend and they are very manageable and I am quickly adapting.

I was pretty scared this morning - but I still also felt so angry! It was strange to have so many emotions flying through my body. I was also very tearful and stood outside of the unit for a good 5 minutes composing myself before I went in.

I was there for 5 hours in all. I had 2 drips of anti-sickness (about an hour and a half) and then the chemo infusion (this took 2 hours). Then i was monitored for about half an hour before I was allowed to go.The nurse told me that any reactions wouldn't happen until near the end of the infusion and she was right. It was only towards the end I started getting a really tingly and heavy, achy arm (on the side the needle was in). Also, once they removed the needle from my hand, I popped to the bathroom and touched the cold handle and was shocked with a pins and needles sensation through my fingers. Even though I was told this would happen, it was an automatic thing to do and I certainly learnt from the shock. There was a very slight feeling of cramp in my hand but I tried to stretch them out and it didn't turn into anything bad.

Since then I have had cold sensitivity. Touching anything cold with hands or feet give me intense pins and needles. It takes about 5 minutes and warming them up for the pins and needles to go away. DON'T drink or eat anything cold. Even the slightest cold touch gave me strange sensations in my mouth and made me scared about the larynx spasm I was told about. I also get a short sharp pain in my jaw when i bite into something for the first time. This goes away quickly but it does hurt. I am also feeling very tired.

By the way, the cold sensitivity is only supposed to last a few days from the infusion day, so fingers crossed.

Another thing was the amount of drugs that i was given to take home! I wasn't expecting them all and I now need to write a schedule for them. It isn't too complicated but I know you mentioned before about organising this so I'm going to use a calendar to write it all on and stick up in the kitchen so I can remind myself!

I would definitely recommend using gloves for after your session and maybe pack a warm jumper in case you get the sensitivity and just be real careful with the temperature of your drinks after - room temperature or warmer should be fine.

I'm really not sure if that is helpful at all. It's actually helped me being able to write it all down! So I thank you for being someone I can write to. I am very hopeful that it will go well for you. I am sending you positive thoughts and vibes.

Please let me know how your appointment on Monday goes. And just know that I totally understand all your fears and anxieties and now I am extremely hopeful that these will be reduced soon. I'm glad I can share this with you. Keep strong and positive. We can do this!

Take good care of yourself.

Looking forward to hearing from you soon.

Good morning Lays88,

Thank you so much for sharing your experience. It is a huge relief to hear that things went as well as they did for you. I realise it's early days in your treatment plan, but hope your initial fears and anxieties have faded.

That's interesting about the Covid booster. I haven't heard anything about one for myself at the moment. I'll have to ask about one at my Monday meeting. In the oncology centre video I was asked to watch, it did mention that you should accept a flu jab, if it was offered. However, the video dates from 2013, so Covid wasn't even on the radar back then. Sounds like it would be in our best interest to take advantage of anything on offer that will boost the immune system.

Five hours is a bit of a marathon session. Wow! As I mentioned before, my daughter has offered to take me for my treatment, but I'm concerned that she will be kept sitting around waiting for me, for that long. I'm sure she won't complain, but it does seem pretty unfair on her. Luckily, there is a Costa coffee shop on site, which should keep her going :0)

A massive thank you for the heads-up about the sensitivity to cold. I had heard this, but what you have described sounds a lot more intense than it has been described to me. The jaw pain has never been mentioned before either. I hope you are feeling better today, but once you have experienced the effects that cold items can have, it must make you especially wary of what you eat or drink. Please be careful. I shall take note of your advice on gloves, and see if I can find some lightweight ones to wear.

Sharing details of your experience and your messages of support and good wishes are invaluable to me. There is nobody else I can turn to who has the first hand knowledge of an experience so aligned with my own, that you do.

Stay strong. You have cleared a major hurdle now and you are on the way being able to put all this behind you.

I'll post an update after Monday meeting, but I'm not sure exactly what it's purpose id, or if I'll learn anything new.

Chat with you again soon. Take care, and recover quickly!

Good evening RCFlyer,

Just wanted to send a quick message.

Definitely enquire about the covid booster.

I think it will be lovely to have your daughter there for support and it sounds like she really wants to be there with you. Costa is just a bonus!!

I'm glad that sharing my experiences has helped. I'm now onto tiredness and nausea so it's been a bit of a nothing-day for the children today as I haven't had the energy at all. But we made it through!

Thank you for all your words of encouragement - it really does help me so much. You are also the only person I know who is going through the exact same experience. We can keep each other strong knowing exactly what each step feels like.

Good luck for tomorrow's meeting - let me know how it goes.

Take care and chat soon :)

Hi Lays88,

I hope that you are coping alright with your side effects, and they are not affecting your daily life too much. Fingers crossed that they are actuallly easing off.

I've just got back from my patient information session. There wasn't a great deal more to learn than what I got from the previous meeting with the doctor, and all the literature we get bombarded with. I think they were just trying to make sure that I was up to speed with my understanding of what's going to happen on the day, and any preparation I need to do. However, it was nice to meet some of the nurses, and get the general lay of the land, as to what i need to do and where I need to go, when I show up for chemo. Bad news is that my daughter won't be able to stay with me during the treatment process, which is a bit of a pain, as she will now have to make two trips to the hospital. There's not much for her to amuse herself for 3+ hours at the hospital. 

Apparently I wasn't supposed to need any bloods prior to the first session, but they had neglected to check my DPYD (whatever that is), and took some anyway.

Well, apart from lateral flow tests, all the preamble is now over, and it's down to business on Thursday. I'll update you with how it all went, afterwards. 

Take care  and look after yourself. I really hope you are feeling better in yourself, and things are looking up.

Chat with you soon!

Good afternoon Lays88,

I hope that things are settling down for you today  and you are feeling better.

Unfortunately,  I have had a bit of a setback. When the nurses took my temperature at the introductory session yesterday they expressed concern that my temperature was rather high, at 37.4°C. Other than being a bit warm, I was feeling alright.

This morning I woke up with an urgent need to urinate, and when I did, it was rather painful and there was blood present (Sorry about the detail).

Now in a panic, I phoned my GP surgery, and even after explaining that I was due to start my chemo on Thursday, they still couldn't offer an appointment or consultation. Them telling me to go to a walk in clinic was no good either, as I can't be away from toilet long enough. I'll have to join the phone queue for a GP appointment tomorrow morning :0(

Anyway, I subsequently called the hospital and they said that my treatment would now have to be delayed for a week. That is, assuming the issue can be treated effectively in that time. Perhaps my blood tests from yesterday's visit might have shown something up. However, this would have been really annoying, if I'd turned up at the hospital only to then been sent away.

This really is prolonging the agony, in more ways than one. It's certainly something I could have done without, and it's doing nothing for helping my mood.

You take care. Hopefully I will eventually have something regarding the actual chemotherapy soon.

Hi RCFlyer,

How are you feeling now? I really feel for you - I know the anxiety of waiting for this treatment and now the absolute frustration of having to start later than planned.  Did you get to speak to the GP? I can't believe they couldn't offer you an appointment given the circumstances. I really hope that you can get this resolved soon so you can get the treatment underway. Even through there is a delay, just remember you will get started soon. In the meantime, try to enjoy the time before you start.

It's been a rough ride for me. The fatigue is dreadful and the nausea has been almost intolerable. And I just feel awful for my two kids who really haven't got a full functioning mummy right now :( I called the oncology team and they've been great.They changed my anti-sickness meds today and the doctor said to take a couple of days break from the chemo tablets to give my body a break. Hopefully this will help a bit.

Look after yourself and keep in touch.

Hi Lays88,

So sorry to hear that you are continuing to suffer with nausea and fatigue. I imagine that must be getting you down badly. I can only hope that your new medication takes care of things, and a break gives you chance to recover for a while. I don't know how old your kids are, but hopefully they have an understanding of why their mummy is not her usual self, and perhaps are even able to support you to some extent. Easier said than done, but you need to focus on making yourself more comfortable at the moment.

I got through to my GP surgery yesterday,  but it turned out he was off sick, and I had to phone 111. Surprisingly,  a Medoc doctor came back to me quickly and prescribed some antibiotics. Unfortunately though, as he put it, "the system was down", and he couldn't email the prescription to my pharmacy,  but I would need to collect it from the hospital. By an amazing (and very rare) stroke of luck, my daughter was actually going to the same hospital for a scan that morning, so was able to collect my prescription. Something went right for once!

Still feeling quite rough today, but I've only just started the antibiotics,  and it will take a couple of days for them to kick in.

Haven't received an updated schedule yet, but I'll let you know my new start date as soon as I do.

Take care, and I'm really hoping that your new meds make things better for you.

Chat with you again soon.

Hi Lays88,

I'm really hoping that your side-effects have become more bearable, and that your mood is beginning to lift. Hang in there!

Just a quick note to let you know that I got my new treatment schedule today, and I am now due for my first round on Tuesday 6th Sept.

Sorry I don't have anything more constructive to add at this time, but until I actually experience the process, I'm afraid all I can do is continue to offer you my support and best wishes.

Take care.

Hi RCFlyer,

I am so sorry I haven't been in contact sooner.

So, I am pleased to report that the side-effects have really eased. Phew. I can manage a lot better now!! Following on from the 2 day break from the chemo tablets, I've been back on them for 2 days now and have felt fine :) It might be the new anti-sickness meds or maybe my body has got used to them a bit more but whatever it is I'll take it! I can be a mummy again (my children are 6 and 4!) and my energy levels are much better. I am definitely feeling happier and more positive. I am even going to be able to make it to my very close friend's wedding this weekend.

How are you? Have the antibiotics worked? Hope they have and glad to hear you have a new schedule in place.

I'm hearing more and more about people in different areas who can't easily reach their GPs and this is really disturbing. I do count myself lucky that I can get a phonecall appointment at least with my GP surgery if I call at 8am. I don't have a designated doctor though and always have to explain my situation if it's a doctor I haven't spoken to before.

So you will be starting your treatment just a few days before I go on to cycle 2 (9th september). At your information appointment, did they give you an emergency 24hr number you can call if you have any worries about side-effects? I have found this number absolutely vital to getting though this first round. 

If you are feeling well enough, make sure you are still doing lots of things you love and finding ways to keep calm.

Take care of yourself and speak soon :)

Hi Lays88,

It is absolutely fantastic to hear that you are managing your chemo side effects so much more effectively, and you are building your strength back up. As you suggest, it sounds like they have managed to tune the anti-sickness medication a lot better. It might sound a bit selfish from my side, but it is very comforting to know that they are able to tweak things, to suit individual patients. 

They did give me a little card with the emergency number on it, but probably as you did, I really hope I won't need to use it. You never know!

The antibiotics appear to have worked,  and I'm feeling a lot more comfortable, thank you.

I try to keep myself occupied, but I'm finding it more and more difficult to avoid just vegging out in front of the telly. As you know, my main hobby is my radio control planes, but I even find it difficult to get on with building/fixing those at the moment. I do a little bit now and then, but my mind wanders and I lose concentration easily. Postponing my treatment certainly hasn't helped my anxiety levels.

Anyway, enough of that.

It's just great to hear that things are improving for you, and hopefully this has given you greater confidence to push forward with the treatment. You are doing great!

Look after yourself. I'll report back soon.