I’ll be with you in spirit Swampy, because it’s my last T tomorrow so we will probably be having it at the same time (message edited to break it up by bullet points and paragraphs, I can do this on the PC but not on the so-called ‘smart’ phone).
Hope you’ve remembered to take your steroids today! I find the best way to make sure I don’t forget is to write it on the calendar, and stick a brightly coloured post-it note with ‘STEROIDS!’ written on it on the bedside table next to the alarm clock.
Re: SEs, as this is your first infusion of T they should be monitoring you while you have it to make sure you don’t have an adverse reaction (a reaction is rare, so don’t worry, it is just a precaution). You’re unlikely to have nausea or sickness with T, but the main things to watch out for are:
- Aches and pains in your joints - they may give you Paracetamol in the hospital before the infusion to help control this and may advise you to keep taking them over the next couple of days, but if this isn’t enough, go back to your nurse or to your GP and ask for something stronger;
- Hot flushes - likely to be short-term effect only for the first couple of days, this is apparently caused by the steroids reacting with the T;
- The ‘Tax Trots’ - have some Immodium and sensitive moist toilet wipes in stock just incase;
- Sore mouth and throat and changes to your appetite and taste - not much you can do about the taste changes, but they should give you something for the sore mouth (e.g. Difflam - also available from chemists) to prevent ulcers and oral thrush (e.g. Fluconazole - only available on prescription from the hospital or your GP), otherwise, have some Bonjela in stock just incase, and keep rinsing your mouth with saline (you can make this up yourself, heat half a teaspoon of salt in a pint of water);
- More fatigue / chemo brain - not much you can do about this either except rest when you must, and try to do gentle exercise when you feel up to it without overdoing it - although it will be hard going at first, if you make the effort to go out for a walk or exercise at home, you will feel better afterwards;
- Effects on your skin and nails - you may find your skin dries out and/ or becomes more sensitive and that your nails become dry, brittle and discoloured, so if you’re not already plastering moisturiser all over your skin and conditioning your nails (using suitable oils or hand and nail creams), I suggest you start now, ideally using products suitable for sensitive skin; and
- Peripheral neuropathy (effects on the nerves in your fingers and toes) - if you feel pins and needles or numbness in your fingers and toes following the infusion, it is important to tell the nurse, because if nothing is done there is a risk of permanent nerve damage.
Don’t worry about the long list of SEs because you are unlikely to get all of them. Most of the ones you do get will be temporary (albeit not very pleasant while they last ?) so you should find they will wear off by the middle of the cycle - meaning that they should not spoil your Christmas! ???
Hugs to you and others facing their first T before Christmas. Hope this helps, and try not to worry, it is unlikely to be as bad as you fear, and if you prepare as best you can, you will be able to cope.
