Starting treatment this thursday

Hi Jolouise and i see it’s your first post so welcome to the Macmillan Community.

Navigating the cancer journey can be such a stressful and challenging time but getting support from others who are dealing with the ‘exact same' cancer type can help a lot.

I have been on my journey coming up to 26 years with 2 rare (one incurable) types of Non Hodgkins Lymphomas and have had over 750hrs of chemo….. although this link is from a Lymphoma site it has some good Top tips for the day of your chemotherapy

Interestingly…… Cold Cap is not recommended when treating blood cancers like Lymphoma…… as the chemo must go everywhere in the body 

The Community is actually divided into dedicated Cancer Support Groups (Discussion Rooms)………… but you don’t say what type of cancer you have If you care to have a look through this link Cancer Specific Groups you will find all our dedicated cancer support groups listed.

These groups are safe places to talk to others who may have a similar diagnosis, treatment experience, to ask questions and get support from members who are navigating the exact same journey.

Have a look through the LIST above and once you find the support group for your cancer type....... click on the link and when the group page opens you will see a [Black - Click to Join - Banner] at the bottom of the page, click in this box and this will then confirm that you have joined the group.

When you are ready……. you can introduce yourself by putting up your very own post by clicking [+ Create new post] or [+] in the top right of the group page.

The Macmillan Support Line is open between 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00…… this service provides cancer information, practical information, emotional support, benefits and financial guidance or just a listening ear.

Talking to people ‘face to face’ can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing.

Do get back to me if you need further help navigating the community…… all the best. 

Hi Jolouise,

I guess that depends on the time you will be at the clinic. My regime was Pola R-CHP so that meant I was there from 9am - 3pm and I had 6 cycles. I loved the Lord of the Rings books when I was young and always meant to read them again so the week before I started chemo I thought why not and brought a decent copy of them. It kept me busy during my chemo treatment.

Other people listened to music via their mobile (don't forget earphones), did puzzles whilst others slept and one person even knitted whilst there. At my clinic they did offer coffee and biscuits, but I also took along a large bottle of water and a light sandwich.

The other thing I took was the 'your treatment record' book that I was given by my CNS. Every session I asked the chemo nurses for my neutrophils, hemoglobin, platelet and LDH counts and recorded them. Seeing the positive trends in my bloods each cycle was something positive that I held on to.

My chemo nurses were really nice and friendly and I couldn't have asked anymore of them.

Andrew 

I had my first session yesterday. For the cold cap I suggest you take a headband if you have one as this makes it less painful on your forehead. They gave me a gauze one that kept shedding bits into my face so I’ll take my own next time. I found the cap much easier than I feared  it’s pretty cold for the first 10 minutes but after that I barely noticed the temperature but I did find it uncomfortable to wear and my glasses hurt where it pressed on my ears so I took them off and ended up with them Eric Morecambe style on the outside of the cap.  

And take things to do - I took kindle and a puzzle book plus snacks. My unit provided crisps, cereal bars, fruit and hot drinks and water. I took snacks but didn’t eat them. 

good luck! Any questions please ask as it doesn’t seem like this forum is very active.  
Sarah x

Hi Jolouise! 
I‘ve just had my second chemo and am also using the cold cap. Like Sarah said, take a headband to put on under the cold cap - a thin fabric one is best - and you’ve probably been told you need to take conditioner. Take a bag to put them in after as bottle might be messy and hair band will be wet.

Wear comfy clothes as you’ll be sitting for a long time and I take a fluffy blanket and thick socks as I feel quite cold with the cap on. 

Bottle of water, a few snacks, lunch if it’s not provided, treatment record book and something to read or a puzzle book or tablet and headphones if you want to watch stuff. I’ve downloaded a few things on my iPad as hospital wifi doesn’t work.

Tissues, lip balm, hand sanitiser, hand cream might come in handy :)

There will probably be a lot going on at your first session and you might feel drowsy depending on the medication - I kept drifting off to sleep when I had my first one!

The nurses were lovely and helped me with everything so I’m sure you’ll be taken care of. 

Hope your first session goes ok - come back and let us know how it went. 
Emma x