Here are some tips, some things I have learned and some things I wish I had known at the start of my treatment.
- I walk every day – good for my mental health and great for recovery from surgery and treatment, if you're up to it. As I start to feel better, my surgeon told me it is important for my body to have regular cardio-vascular exercise.
- Don't be afraid to get 2nd opinions on treatments (ideally as early in the process as possible). We weren't in that headspace at all because we were dealing with the first surgery and the whole diagnosis, but my sister organized one and we realize now that my 2nd surgery literally saved my life. I'm not saying this is the case with you and it's highly unlikely your treatment path will change, but it's absolutely worth checking.
- I do not spend my time wondering 'why me?' - there is no 'why'. As far as i can see brain cancer seems to attack at random – young, old, male female... This has been why screening for the disease is not possible – there are no proven causes, unpredictable symptoms and no known cure (yet!). I do however always use both my mobile phone and cordless phone on 'speaker' and no longer have a clock radio next to my pillow as a precaution.
- Know thy medicines! Read everything yourself (eg consumer product information) so you understand what you are taking, why they have recommended it and so you can also question your doctors on whether you need certain ones – 'nip any symptoms in the bud' one of the nurses told me so I take all the medicines I need to feel well and none that I don't need. With my impaired concentration I was in no fit state to manage my medications and it was hard to dispense my medication and supplements on a daily basis. This could have been potentially fatal – I was prescribed steroids from one doctor with no warnings, then a month later another doctor told me never to miss a tablet! If it wasn't for my step dad taking on that role for me, I could have been in a much worse state than I already was
- Be germ phobic! You will be immune suppressed throughout the treatment so get everyone around you to be extra vigilant with germs, eg hand washing after the toilet and after blowing noses, this verges on paranoia in public toilets for me – especially those in the hospital Sounds over cautious but when your immune system is down every precaution helps.
- Teeth & Skin - sun is great in moderation but be extra careful as some of my medications make me even more sensitive to sunburn than I was already, just check the labels. With your teeth, the radiation can affect gum health and bone density. I went to the dentist before I started my treatment and told her that I was about to start chemo and radiation and she did a really thorough clean. I will now keep going every 6 months for more of the same if my gums can take it. With the radiation treatment, it can affect your skin. They will have a free gel at the hospital for you to use (the one they use here is called Solugel) but one of the technicians suggested I rub olive oil onto the skin instead and I much prefer it – it does soothe my skin but doesn't leave any residue and soaks in really quickly.
- Down to the nitty gritty – with the chemo treatment your 'waste materials' are likely to be toxic for a period after treatment. I double flush the toilet as a precaution for about 3-4 days after my IV treatment. Once you start chemo, eat prunes regularly and drink extra water as the antibiotics they give you can cause constipation – I've been there, it's not nice on top of everything else you're dealing with. If you are unfortunate enough to get it, you can also take Coloxyl with Senna but again drink extra water as the tablets themselves can cause cramps – I've been there too! It's a bloody rollercoaster this medical malarky
- Time - Don't be afraid to say no. There will be so many people caring and worrying about you and they will want to call or visit to cheer you up. This is awesome and so important for you to know how loved you are, but my words of caution would be to do it on your terms. Everyone will understand. Your family can be your 'gatekeepers' of phone calls or get an answering machine and you can then call people back when you are ready. It can be very emotionally draining to have to tell the story over and over again, even if you do understand why people are doing it. Emails are great for keeping everyone informed but not draining yourself in the process. You need your time for healing and hanging out with your clan. My home has become like my cocoon and I love it more than ever. If any medical people offer to do home visits, my view is that I would rather go to them – when possible keep the medical treatment at the hospital and home for yourself.