Worries about starting treatment

Hello Daliah68,

The anxiety before starting treatment is awful and it’s completely understandable. It’s the fear of the unknown and the reality of the diagnosis hitting home. Once you get that first day over with you will hopefully feel a bit more reassured. I remember that first day so well and my anxiety was through the roof just before.

Im answer to your questions, I was given the infusion and also the first tablets when I was seen, with the second dose to be taken later that evening. I was also given steroids to take then and for the next few days. 
At this first appointment I was also given anti sickness tablets, loperamide, mouthwash and information books and contact numbers. 

I then had to go to a different hospital for the radiotherapy and drink loads more water before they could administer it as I’d had to go to the loo after the chemo. So my advice would be to try and make sure your bladder is as full as possible.  

The treatment is giving lying on your back, as in the mapping scan. I had to wear something stretchy with no zips and just pull them down a bit and they covered me with a paper sheet. It seems that different hospitals have different protocols on this.

 I did feel nauseous, but was never actually sick. I found the anti sickness tablets really helpful and there are different kinds if one doesn’t work for you.

 I really wish you well for tomorrow and hope all goes well. You will be able to cross that first day off.

Sending hugs xx

Hi Jo!

I agree with everything PEB 24 has said. I felt exactly like you but it’s amazing how once the treatment starts you very quickly get into the swing of it. There will be some tough moments but the treatment is relatively short. There’s so much good practical advice on this forum so get back to us about absolutely anything that worries you.

I’m almost 9 months post treatment and feeling thankful for the treat and for all the people who helped me along the way.

From tomorrow you can start crossing off the days( I made a chart and found it very helpful.

Will be thinking of you tomorrow 

Keep in touch with your progress.

Happyflower x

Hi Jo

I think it’s quite normal to be anxious at this stage I know I was but I soon settled into a routine once treatment had started.

My experience of the first treatment day.

For me the 1^st appointment on the first day was radiotherapy at 8.15am and although the radiotherapy session was the same length of time as all the rest at about 15mins I was in the department a little longer because I had to drink 300ml of fluid, wait 30mins and empty my bladder then drink another 300ml of fluid then wait another 30mins before going in and then got instructions on what’s happening etc.  At later appointments you can time your drinking so that you’re not waiting about for an hour each time.

In the radiotherapy suite I lay on my back in the same position as the planning session and very much as  PEB24  describes above. I did have some metal on the draw string of my shorts one day but it wasn’t an issue and they said it didn’t affect treatment just looked a little odd on the screen so I had to make sure I pulled them right down to my knees each day just to be sure. Once you get into the swing of it you soon got used to hopping on to the table and getting into position and I must say I did nod off to sleep a few times although not on the first day.

1^st day I was out of there for about 9.40am but I didn’t have my chemo appointment until 11am so went for a Starbucks at the hospital restaurant. It was about 11.30am when I actually got into the chemo chair, 1^st thing was to take an anti-sickness tablet and then wait 30mins. So chemo infusion started about 12noon and didn’t take too long but I had to wait after it had finished because it was the chemo dept that were handing out the bag of meds for use during treatment and they hadn’t been sent up from the pharmacy.  I didn’t get out of there until about 12.45pm.

I was given moisturiser for the skin, anti-sickness tablets, anti-diarrhoea meds, mouthwash and a box of chemo tablets to take one in the morning and one in the evening on each radiotherapy day but not at weekends. The other meds where for use if required, apart from the moisturiser I didn’t use any of them btw.

So my 1^st chemo tablet was following my evening meal on the 1^st day at about 7pm, I didn’t need to wait 12 hours from the IV chemo as that’s a different sort of chemo, also I was actually left with one chemo tablet over as I should really have taken one in the morning of the 1^st day but couldn’t as I didn’t have them at that time, the doc said it didn’t matter and I wasn’t to take the day after the last treatment.

I didn’t feel any effects at all on the first day, second day I felt a little like I was about to come down with a virus and third and fourth days I felt a lack of energy when out on my bike and a little nauseous when going up hills but by weekend I felt much better. For the rest of treatment I didn’t have any nausea even when out cycling. Each day was very long though as I had early morning radiotherapy sessions so I was tired after cycling in the late afternoon and often took a nap but I wasn’t exhausted and I managed to work throughout albeit with slightly reduced hours due to the treatment and traveling time.

Bloods are taken and checked each week and at the 1^st clinical review the docs asked lots of questions to see how I was coping and you have the numbers to call if you have any issues.

I was given all my radiotherapy and clinical review dates on one letter but only had the times for the 1^st five and then each day I attended I was given the time for the same day next week.

I crossed each one off on that sheet and marked out the points where I’d be quarter, third, halfway, two thirds, and three quarters through the treatment, the 1^st half dragged and the second half flew by.

Hope it all goes well for you tomorrow and do keep us informed on how you are getting on.

Monty x

Thank you so much, I am feeling more confident reading all the replies and just need to stop worrying so much x

Thank you, I will keep in touch and hope I am stronger than I feel, fingers crossed!

Wow Monty, you sound strong and energetic! Cycling everyday and going through the treatment is very impressive. I can only hope that I can remain upbeat and try to do some form of exercise everyday, even if it is something small like going for a walk or yoga. I think I will avoid the gym due to risk of infection. I have read that there is a nasty strain of Covid doing the rounds so a bit of due diligence is sensible I think.

I know that tomorrow will be long and tedious with a lot of waiting around, plus the 50 minute drive to and from the hospital. 

Hope you are recovering well, you certainly sound strong and positive and that is encouraging. Thank you x

Hi Jo

Yes, I was also worried about getting a virus during treatment and made sure I got my Covid booster jab a couple of weeks before I started.

At first I avoided the supermarket etc but once I’d got my bloods checked at the first review and they were fine I started going out more but still avoided really busy areas and children etc.

I don’t do the gym but think I would probably have avoided that as well or at the very least discussed it at my clinical review when my bloods where in. But if you can walk or do yoga I think that will be really beneficial for you.

What time is your radiotherapy session btw?

I took something interesting to read while waiting around and during the infusion. In the radiotherapy room they always had music on during the treatment so that helped.

I’ll be thinking of you tomorrow.

Monty x

Hi Jo,

Much easier said than done. It would probably be strange if you weren’t anxious as this so far out of the comfort zone for all of us. Hopefully you will feel much better once tomorrow is over. Will be thinking of you.

Just to add that I took walks every day while having treatment. I think it was important psychologically as well as physically. I live by the sea so this was easy for me, but I think you are wise to avoid any busy places as you will be immunocompromised and don’t want anything to get in the way of your treatment.

All the best for tomorrow xx

Hello Jo, 

We were all really nervous on the first day, and it is totally understandable that you are feeling apprehensive.  But you have been given some really good accounts of what to expect and please remember that subsequent appointments won't be anywhere as long as the first one.  I could be in and out of the radiotherapy department in just over 20 minutes, they were super efficient there and ran like clockwork.  My husband barely had time to drink his large cappuccino in the cafe and I would be back!  

This time will pass really quickly, so start marking off the days!

Irene xx

Hi Monty

I've been sent the full schedule of appts but also told that they can change. This week not so early but the following weeks between 8 and 9.30 mainly. Lots of early nights and hopefully not too long sitting on the toilet!!!

I go running regularly but think I won't have the energy for that but I'm hoping a brisk walk along the seafront everyday for my mental sanity (until or when I can't walk properly anymore). I think stretching is good as the muscle and ligaments are affected by the radiotherapy and my facet joints are a weak point already.

Didn't do the Covid jab but am not planning a lot of mixing over the next few weeks so if I get it it'll be in the hospital Radiotherapy Dept!

Positive thoughts very much appreciated, thank you