Just a little update as to how I am doing since ending RT last Thursday (today is Friday) .....
At the beginning of this week I was having fatigue bouts but as of yesterday these seem to have subsided. I would say that I am functioning at 50-60% of my regular activity levels because I am not getting up early or doing school runs at either end of the school day. Also, I am not doing very much in the day and I am falling asleep by 10pm whereas before I was working (yes, maybe 4 hours per day only) but I was also training to run 10k so my activity levels are definitely much lower at the moment.
Side effects:
Pain levels - as of today, my pain levels are not too bad. I didn't take any morphine last night and I am spreading out my paracetamol and ibuprofen so that I have more of a 6-7 hour gap on the paracetamol and a 12 hour gap on the ibuprofen. Today is the first day I am trying this so we shall see.
Inside my mouth - still has mucositis and I am still using the Oranurse flavourless toothpaste, the Tellodont mouthwash tablets followed by Gelclair. I didn't get any new ulcers yesterday or today (yipee). My taste is still absent and when I had pate for lunch earlier today it left an awful taste in my mouth. It seems savoury foods have a tendency to pick up any pepper / seasoning and that it the only sensation I get. Chocolate (unless a lovely, expensive, smooth brand) also stings my mouth if I let it melt. I am currently longing for an apple ..... I may try one over the weekend (stewing might make it easier to eat) so I will update afterwards.
Skin - My face is looking good now. The skin on my neck and behind my ear is still red but no longer looks angry. A little dryness continues to peel off. The crack behind and right in the crease of my ear is going okay except for behind my ear lobe. This is where I still have a big scab and although I am trying not to make it bleed when I clean it, this is tricky to avoid because some bits of the scab start to fall off, but they bring with them some unready scab. I think it will heal slowly - my Macmillan nurse said the same (we talked by phone). Because of this scab and the healing I haven't been able to wash my hair for over a week now! My mum hasn't returned this week (and it sounds as though she won't be returning) so I am down on a carer to put the cling film over the healing areas and then carefully wash my hair. It is a mammoth task because it is very thick (except where it has fallen out) and very long .... I don't think my baldy husband has a clue about how to get it really clean without being a little too vigorous and hurty. What to do ... ? I look like a grease ball with Talcum powder (Dry shampoo) sprinkled in.
My deafness / ear discharge - I finished my Clarithromycin Thursday morning. The Macmillan nurse returned my call to update on the ear swab from last Tuesday (10 days ago) .... the labs have been able to grow something, and that something isn't sensitive to treatment with Clarithromycin. She told me the names of alternative treatments and I asked her to liaise about a prescription with my Oncologist, who I met with last night. My oncologist reluctantly prescribed some different antibiotics but said the whole deafness thing is glue ear and related to treatment .... and that the 'something' the labs had grown was only because the swabs are easily able to pick up something that will grow bacteria. I promised not to cash the prescription unless the discharge started again .... but because I felt some pain in my ear earlier today (probably psychosomatic I realise!) I decided what the heck, I've had this sensation for over three weeks now and if it is an infection I don't want to risk a problem. So I have today started Ciprofloxacin - lets see what happens. If it remains the same I will go to see my ENT consultant.
My weight - I am pleased to say that I continue to lose weight. I am eating, but the portions are small, bland and purely to supply a balanced diet. I am wanting to lose weight (2 stones would be great) and envisage I will lose around 3lbs per week at this rate. Clearly once my taste returns, I will have to be ready to put in some exercise because my love of food and chocolate won't help me to maintain any lost weight!
So, overall I am feeling not too bad with things. My Oncologist is pleased with my recovery and I am looking ahead to the baseline scan in a few weeks time.
