I've copied this over from the previous thread. If anyone has anything to add to it then please let me know and I'll add it a revised edition :) it's mostly focused on breast cancer as that is what most of the gang have, so any tips from those with other types would be handy!
Lacies' guide to cancer
Disclaimer: none of us is medically qualified and everyone is different. This is not medical advice. Please check with your medical team before making any changes.
This is a work in progress. If you see anything that is incorrect or if there's anything you think should be added, please either post on the thread or PM me and I'll add it to the next edition.
This is just a summary of some of the advice given in recent posts, but please don't feel that you cannot ask questions.
There are not really any rules around here, though we tend not to be too keen on head tilting or talk of "bravery". Our main rule is DO NOT GOOGLE. Especially when you are waiting for a breast clinic appointment (or equivalent for other cancers). Wait until you have a concrete diagnosis (there is a good chance you will not be diagnosed with cancer at all!) and then stick to legitimate websites.
General tips
- Cancer patients are eligible for a medical exemption card for prescription charges - there is some information on the NHS Business Authority website
- Get a notebook to take to all appointments and write down any questions you have in between appointments so that you do not forget them
- Take someone with you to results appointments
- If you need travel insurance, you may be better with a illness/cancer specialist provider
- Check whether you have critical illness cover etc.
- Get paperwork etc. sorted before starting treatment as you may not have the energy
- For those with young children: arrange babysitters/playdates, inform the school so they can provide support, prepare distractions e.g. DVDs for when you are tired
- You might have a local Maggie's Centre or Haven (breast cancer only where you can get support. Some towns also have their own cancer centres
- If you have an iPhone you can record details of your diagnosis, medication etc. in the health app so they can be accessed in an emergency
Tips for chemo
- Have a dentist check up and hygienist appointment beforehand (dental treatment is best avoided during chemo due to infection risk and some types of chemo can damage teeth)
- Consider a cleaner and/or laundry service to relieve some of the pressure at home
- Fill freezer with pre-prepared meals or buy some ready meals in case you don't feel able to cook
- Accept offers of help e.g. with school run
- If you want a wig, try and get it sorted before starting chemo
- Keep a symptom diary so that you can get to know the pattern and so you do not forget anything in between oncology appointments
- See if there is a Look Good, Feel Better workshop near you - they are especially useful for advice on disguising missing eyebrows and eyelashes
- You can find information about the individual chemo drugs or regimes on the Macmillan website here (also ask on the thread as lots of posters here are likely to have experience of the drugs you're on)
- Stock up on things you might need such as loo rolls, flannels, soft toothbrushes...
- Audiobooks can be useful if you are too tired to read
- Consider packing a hospital bag in case you have to go to A&E with an infection (see below for list of useful things to take to hospital)
- Take some distractions to chemo with you so that you do not get bored (e.g. book, tablet, puzzle book, crochet...)
Tips for a hospital bag
- Earplugs
- Eye mask
- Drinks and snacks (hospital water often tastes funny!)
- Flip flops for showers
- Phone charger
- Notebook and pen
- Change for refreshment trolley, vending machine etc.
- Front-opening pyjamas might be useful after surgery
- I haven't put any bras here as recommendations seem to vary, so post on the thread if you are having breast surgery and people will be able to suggest a suitable post-op bra depending on your requirements
- Sweets for dry mouth
- Wet wipes and dry shampoo to freshen up if you cannot shower after surgery
- Hand cream and lip balm as hospital can be very drying
Tips for surgery
- Follow surgeon's activity restrictions post op
- Be prepared to get a bit emotional immediately after surgery. There will/may be pain, swelling, numbness, large incisions, drains and you might not have a nipple. You may come out wishing you hadn't had the operation, though this phase may be short-lived. Marshal your DP/friends/whatever form of emotional support you need to get you through
- Don't take the pain silently, discuss anaesthesia options before surgery, and after surgery you can ask your physician for appropriate medication
- Keep a glass of water (straw helps is you can't sit up properly in first few days) or bottled water (I liked the sports type squeezy kind, but then again I had an unaffected arm) handy at bedside especially at night for when you get thirsty. I felt very dehydrated after surgery
- Pre op, check with your surgeon or BCN on what to buy beforehand: support bra (what size; any recommended type or brand), bra extender, knickers, etc. Don't go overboard buying loads as you're likely to move out of oversize bras and the extender relatively quickly
- Post op advice can vary: check with your surgeon or BCN on support bra, binder, compression garments, when you can shower/have a bath/swim, etc.
- If you want it, request a copy of your post-surgical pathology report
- Explore scar reducing options with your GP/surgeon -- some items may be available on prescription: Kelo Cote, silicone sheets, post-surgery massage
- Work with physiotherapist on regaining range of motion and strength (example online brochure always check with surgeon/physio on what exercises are appropriate and when. The link is from the Breast Cancer Care forum - some patients hadn't received advice about post op exercises when sent home, or hadn't been referred to a physiotherapist
- Ask about lymphoedema risk after surgery and if there are any precautions you should know about
Useful links
Macmillan
Cancer Research UK
CRUK science blog - this is interesting and very useful for getting the facts behind any big cancer headlines!
Breast cancer care
Shine cancer support (for people in their 20s, 30s or 40s with cancer)
Beating bowel cancer - some very useful factsheets/leaflets available to download
NHS What do cancer stages and grades mean?
Macmillan staging and grading (this is in the breast cancer section but applicable to many other cancers too)
CRUK stages of cancer
CRUK cancer grading
Don't forget the kids
Mumsnet thread for those supporting a relative with life limiting diseases - I hope they won't mind me sharing the link here as they seem like a friendly bunch, but this thread may be of interest to anyone with a relative with cancer. There are some other similar threads in the life limiting illness topic as well.
amber's words of wisdom
If you've read through any of our threads then you're likely to have come across reassuring posts from amberlight. She is not a doctor, but reads lots of research papers and provides us with the highlights. I have selected some snippets that seemed most relevant. If in doubt, or for more information, please refer back to the original posts which are on thread 57
here
- Found a lump? 9 out of 10 will be benign.
- Found out it's breast cancer? 19 out of 20 will be just in the boob. And can now be removed/zapped/poisoned successfully.
- Found out it's breast cancer that has spread beyond boob and armpit? If it's in just one other place, we're seeing results where 80% of those can still be zapped/surgeried/poisoned and it works.
- If it's in more than one other place, e.g. liver, bones, lungs, then teams can give up to seven different forms of 'holding treatment' for many sorts. That means that it converts it to a long-term nuisance, similar to living with diabetes or similar. Annoying, certainly. There are no guarantees. Some will have a sort that is truly tricky. We'll never deny that.
- Pretty good research happening around sensible amounts of cheery exercise, e.g. brisk walk every day. A glass or two of red wine now and again. Vitamin D. Curcumin and black pepper supplement. Lactoferrin supplement. Avoiding bright white/blue light at night as much as possible. Having a cheery social network. The oncology journals are reporting the findings on these. Talk to your teams about what they think might help.
- I know that sounds weird, but (generalising) faster growing cancers are greedy, and drink chemotherapy and other potions at top speed... thus dying horribly and fast. It's the slower growing ones that can be more tricky. On the oncology graphs, the difference in life chances between slow growing and fast growing is barely enough to register. Both are excellent now. It's just info for the specialists, so they know which potions and zappings to use.