An Introduction...

Hi nickfreckle

I'm sorry to hear you continue to have pain and further problems. I too felt really well about two weeks after my TURBT then it felt like I dropped off a cliff. I had a water infection and my GP signed me off for 5 months to include the time I was having chemo.

I felt ok till I started treatment then I felt ill, which is of course the reality, I was ill. You've done the right thing to get appointments so quickly. Suggest you see your GP asap with a urine sample to check for infection. 

Do you have a date for the chemo to start?

CB

I didn't want to scroll by Nickfreckle but i have nothing to add to CB,  so sending hugs and hope you get things turned round very soon x

Hi Crusty,

No, I don't have a chemo start date. I expect I will get that on Monday. 

There was a big lump of something that came out about an hour ago whilst I was piddling - no idea what it was though. 

Hi all,

Since I last posted, things again have taken a turn - although I don't know to what degree yet as I am still waiting to see the doctor again. 

Anyway, saw the Oncologist, who said I would be having 3 x 8hr chemo every 3 weeks for 9 weeks, with a top up 2 weeks after my first one.

I then had a bone scan - the results of which I have not been given, nor have I been given an appointment to discuss - BUT I got my pathway through the post on Friday, and my first batch of chemo is this Friday, 22nd. But here's the thing - I'm having 4 lots of 8 hours, and 4 lots of 60 minute sessions - so as good as weekly, but 2 periods where there's a fortnight gap between sessions, and my last dose will be the 12th April. 

Quite why they've decided to increase what I was told I would be having is as yet unknown, but at least I'm finally, 7 weeks after my TURBT, going to be starting treatment. 

So glad your treatment is starting. I think the waiting for answers wears you down. Now you will be going in regularly for your chemo and you will have the support and kindness of our marvellous NHS staff. Any questions or worries, they will be at hand. The urology nurses have definitely been my best friends during my treatment, along with this site, it has really helped not to feel so alone. Sending love and best wishes for next Friday. x

Hi nickfreckle. Good to know things are happening and something positive to focus on. Treatment is tailored to the individual, so try not to read too much in to the plan. 8 hour sessions sound daunting, but you are not being pumped full of chemicals all that time. Most of the time it is a simple saline solution to keep your kidneys functioning well. Stock up on lots of snacks and drinks to take with you. Nice comfy clothes and something to keep you occupied. Wishing you well.

Hi,

I'm just a tad confused as to why the Oncologist told me my treatment would be on a certain plan on Monday when I saw him, only for the plan to be nothing like he said once the confirmation landed on my door mat. They must have their reasons.

I plan on taking a fully charged tablet, a fully charged phone and some headphones, along with a load of snacks that are probably bad for me, but taste nice. 

Here's hoping some of the nurses are a bit of eye-candy lol

Thanks for the best wishes. 

Actually, whilst I'm here - I'm having GemSis Chemo. Any shed any light on what it's like? Having it done in the arm. 

Hi nickfreckle. I had Gemcitabine and Cisplatin (Gem/Cis). Both on the long day and just Cisplatin on the short day. People are affected differently, but I didn't really suffer at all, only tiredness towards the end and beyond. Although you are in the chair.you can have a walk about , taking your drip stand with you. You will be given anti nausea tablets. You must take these as prescribed as they are to prevent sickness. Another tip, get some quality mouthwash and use regularly as it helps prevent mouth sores. There is a good video on THIS Mac page to give you an idea of what to expect. Best wishes.

Hi Nick

Oh the memories! I had four cycles of chemo. Week one was an 8 hour intravenous infusion of hydrating fluid, anti sickness and cisplatin, then gemcitabine and more fluids. Week two was an hour of fluids, anti sickness and gemcitabine. This repeated four times and made me very tired and nauseous. I went to bed for three months! We all react differently so you may be affected less, I know rily breezed through it. Gemcitabine can irritate the lining of the vein and can sting if it's pumped in too quickly.

Your immune system will be compromised so hygiene is very important. Wash your hands frequently especially after being outdoors and before drinking and eating. Avoid busy public places, people with colds and children generally. Watch out for hot spots on your hands, gem can cause phlebitis, go to your GP asap if you get this.

Your taste buds will be affected, food may taste metallic. Strong flavours like Marmite, garlic, chilli will cut across it but just eat what you fancy. The 8 hour sessions are a real drag despite the chocolates and kindnesses of the chemo nurses.

It took me nearly six months to regain the taste for beer, a year for red wine and two years before I could stomach a stiff G&T but I have persevered!

If you feel like it and there's one near you, sign up for a session with Life Kitchen; the founder offers free cooking experiences for folk with cancer and having chemo.

I wish you well.

CB.