Treatment starts next week

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Hi Sarah H, Hi Ladies,

I posted before after diagnosis but before stage/scans.

Had mri 6 weeks after LLETZ (wasn’t bothered by claustrophobia but the noises it made nearly had me jumping off the table and running out the door…) was informed have stage 2B squamous, PET-CT didn’t show anything else, had the consultant appt, the planning scan and got my 4 new freckles Slight smile

Treatment is 25Radio/5Chemo (carboplatin)/3Brachy and starts next week , am all kinds of anxious at moment and know this is another stage on my way to recovery.

I think I’m scared of the unknown and panicking over side effects I might not even get.

Am putting together a little bag of stuff to take to hospital appt’s and just wondering if any ladies can recommend stuff I might need or that helped them, I appreciate everyone’s journey is unique to them but I feel more on top of things if I can plan and organise for likely scenarios.  I’ve got tissues/wipes/water/mints/kindle/knitting/lip balm so far.

Any thoughts/advice/suggestions would be welcome.

Thanks and best wishes X

  • Hi  it’s good to hear from you again with your update! 

    Quite a few of us had a stage 2b diagnosis, so have been through the same schedule of treatment so we’ll have plenty of support for you going through this. The unknown is the worst thing, but once you get going you’ll soon get into the swing of it.

    You need to be advised of every single possible side effect, but not everyone has all or any of them, and some ladies seem to sail through the whole thing so my advice would be to try not to worry about things which haven’t happened.

    For me, the radiotherapy made me very tired and I had some bowel and bladder side effects from 3 weeks into treatment with diarrhoea and cystitis, but just make sure you tell your team about any effects and they will prescribe a pill or potion to help you. I found the chemo much easier to cope with, but had Cisplatin rather than carboplatin.

    It’s a long day on your chemo day, but sounds like you’re organised with things to take to hospital to keep you occupied. My hospital supplied tea and coffee and lunch, but I did take some snacks. You’ll need to drink a lot of water on chemo days particularly to keep your kidneys well flushed out as chemo can be hard on them. At my hospital I had to record all of my fluid intake (and output!) but it seems this is not always the case.

    I used to have a small rucksack packed with everything so just kept it topped up and ready for each chemo day. I also took a change of clothes as my bladder control was not the best and I was prone to accidents at radiotherapy due to the amount of water I had to drink before treatment, and the fact there were often delays in the department.

    I would wear clothes which are loose and easy to deal with for chemo. Going to the loo and dragging your chemo IV stand with you makes it difficult to pull things down one handed, so I found it easier to wear leggings rather than jeans with a zip and button for example.

    I hope your treatment goes smoothly for you, and that you’ll let us know how you’re getting on. Good luck!

    Sarah xx


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  • Hi SarahH, 

    Thanks for getting back to me.  I’m definitely in the “think pee, go pee” category so if this is likely to get worse in treatment then a change of clothes and some pads is a good idea and now on my list, think I might need a bigger bag Slight smile  I’ve got tinnitus so they swapped me from cisplatin to carboplatin as less chance on carbo of it getting worse.  How were you when your tiredness kicked in, could you manage household stuff like cooking tea or putting washer on? I’ve got about 3.5 to 4hrs total travel each day so I think they are going to be long days and very long days, I’m not complaining just finding it all a bit daunting and feeling tired before it’s all begun.  I’m scared of what the next few weeks will bring but also can’t wait to start crossing these days off the calendar.

    Thanks and best wishes X

  • Hi  

    I bought those bladder pads I can’t remember the name of, but are often advertised on tv- now I don’t have a bladder I have no need for such things! I had a similar journey time to you, so I also sat on a folded up towel in the car on the way home Joy

    I could still do all the usual housework stuff, but depending on appointment times I sometimes had a nap in the afternoon. Treatment is a lot for your body, so if you feel you need to rest, just rest. Crossing the days off on the calendar was a good visual reminder of the days going down. 

    I understand the Carboplatin now-I’ve come across a few people suffer tinnitus with the Cisplatin. 

    Once you get started I think your worry will settle down-you’ll be focused on pushing through everything to get to the end.

    Sarah xx


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  • Hi Faireenuff.  Just wanted to wish you luck going into treatment.  Sarah has pretty much covered it all.  I took a good magazine, nibbles and my tablet so I could hook up to the hospital wifi for the long Chemo days.  The loose "one handed" clothing is so important on those days.  The staff are so very friendly and kind and will baby step you through the whole process.  Good luck and keep us posted how you're getting on! xxx

  • Hi Julie

    I took all sorts of nibbles, and became friendly with the lady in the next chair who was a stage 3 cervical lady too-she also had loads of snacks! The 2 of us would have all this stuff laid out on our tables and yet no-one else in room seemed to take anything with them to snack on! But at least I didn’t feel alone. Joy

    The chemo staff were all absolutely lovely, I agree.

    How are you doing? Are you feeling well, back to normal life? 

    Sarah xx


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  • Good luck with the treatment! 

    I had the same treatment as you will have and any side effects developed during the 3rd cycle of treatment. As far as I remember the first two weeks went pretty smoothly except of the tiredness. I remember during the chemo day I was so tired I just wanted to sleep all day. I don’t know if it was due to treatment or the stress I had but possibly a little bit of both. 

    I would suggest take any medication as they prescribe and drink a lot of water as it alleviates any side effects.

    I hope all the best with your treatment!

    xxx

  • Hi SarahH,

    Thats good to know about the tiredness, thank you, hoping I’m similar and can do some things but I’m not going to worry about what I can’t do too much, for the first time in a long time I’m making myself no 1, I’ve already started by only talking about myself for the last couple of months Grinning
    It’s definitely the unknown that I’m freaking over, will I be sick , will I have bladder/bowel issues, will I feel too tired or nauseous to eat etc.  At least that awful feeling from being told initially in Oct I had cc to finding out the stage in Dec has gone now,  that really was the worst time and I think the constant state of anxiety caused aches and pains in strange places but most of them have gone now I know and know what’s going to happen.  
    You really made me chuckle with the snacks story, brought back a good memory of myself and a friend doing something similar years ago on a train journey Grinning

    can you tell me what chemo days are like?, will I be in and out of general waiting rooms or is it all happening in a sterile area that nobody else is allowed in to? I’m just thinking of the people who take me and wondering if they will be waiting all day by themself or whether I will see them in amongst.  

    Hope you are doing ok and thanks for all the info/advice, it really helps.

    X

  • My experience was during covid so no one was allowed in the building. I think now the situation is changed so probably can have somebody to join you during treatment. The day of the chemo, I went into the room where many people had chemo and you sit in some very comfy chairs. You might sleep as well if you like. They give you some fluids first and then the chemo drug cocktail .  When it is finished after a couple hours I had to go to do the rads with the fluids attached to my hand. When the radiation finished then I returned to the chemo room until the fluid bag is complete and then I could go home the whole process it took me 4-5 hours in the hospital. 
    sometimes it might delay the chemo as you will need to have blood tests exactly before the chemo to check if they can administer you the chemo drug.

  • Hi Snobird,

    Thanks for responding and the advice.  I’d not really thought about clothing and being hooked up and needing to pee, and I will definitely need to pee! I’ve now sorted my looser clothing and I’ve got 6 pairs of jogging bottoms so I did a trial run and just about managed one handed to pull them up and down, I suppose practice will make perfect and I will be whipping them up and down in a couple of weeks time haha, and just in case, per Sarah’s advice, I’ve got some spare in my bag in case of any accidents!

    Thanks for your support.

    X

  • Hi Maria,

    Thanks for getting in touch.

    How long ago was your treatment? Im not sure when things changed back to normal after covid as I’ve been allowed to take someone to every appt except colposcopy back in Oct (and that was cos they did it in a room no bigger than a broom cupboard!) Are you doing ok after it all? I’d really like your input on the brachytherapy but not yet as I’m trying not to think about it too much other than when it’s time for that I will be in the last week of chemo/radio and the end will be in sight.

    Im having blood tests tomorrow in prep for chemo next week

    Thanks for the chemo day info all this advice helps so much and makes me feel better prepared.

    X