Disclaimer:

Note, since my experience includes both cancer surgery, being diagnosed with a genetic condition and undergoing 6 months worth of chemo, the following advice covers all of these.

From my experience with the whole process, the most important pieces of advice I can give is to 1) know your personal and if possible biological family medical history and 2) tell your doctors about everything that bothers you, as well as everything going on in your body in the case of talking with your oncologist, chemo nurses and medical support team. Below is more detailed/specific advice.

 

• Know your medical biological family history, as well as yours as far back as possible. Please be aware that this might still be a sore point and you may have to encourage them to divulge this. Of course, this may not be possible in some circumstances. If this is your case then knowing yours should suffice.

 

• Do not feel like you're rushed into the process. You will usually have a bit of time to read the material, get comfortable with the oncologist, nurses, care coverage (private or public treatment), pre-treatment checks and tests (e.g. dentist, pressing surgery, etc). However, check with your oncologist, because they'll be best to advise you with respect to this and your situation may differ. This is very important, because you will be with them for at least 6 months (from my research and experience) and you will need to be comfortable in telling them everything about what's happening within your body from the mundane to the most intimate. At first this will feel embarrassing to you, but it is important, because these things can range from being very mild/common to being very serious.

 

• It is important to read all the information the oncologist gives you and take note of the general routine they'll tell you and symptoms for which you will need to watch out for, such as fevers. This information also needs to be taken in context, as some may seem like a catch 22, so be sure to ask questions for any part that concerns you.

 

• Keep a diary or remember each and every side-effect, as well as anything you did/were advised to do to treat it, so not only the oncologist knows, but you and support team also know the severity of the side effect and the methods in which to treat it. This is especially important near the end of the chemo process, because side-effects are likely to increase, extend or accumulate. Each time you need to tell your medical support team so that they can advise you on the best course of treatment.

 

• Find yourself a medical support team that have the experience in your type of chemo or chemo in general so you can be supported during the process. Note, this may start off with just your oncologist and chemo nurses, but could change over time (increase or decrease). Be prepared to undergo your own research for providers of these services and not just go by whoever the oncologist, nurses, or other specialists recommend, as it may not suit your position (financially, geographically, etc).

 

• Find some friends, family and/or other non-medical support that you can talk to about anything and everything that you are going through with your treatment protocol and the process. This might include leaders from your faith, like Pastors/Priests/Ministers/etc as well as any groups you are part of in your faith. Along with this support team, you will need someone to take you and drop you off/be with you at home after the treatment, as well as a back up(s), in-case the primary one cannot do this.

 

• Discuss your situation with your work (manager, HR, etc), as you may be able to get some extra support that you weren't aware of. You may also require different work or to take the entire time off, because you cannot do the work you'd normally do. This is because certain jobs might increase your chance of infection or other side-effects which may be serious. However, discuss your normal work duties with your oncologist and in most cases they'll be able to advise you on the way to proceed and most likely be able to work (e.g. wearing gloves, mask, etc) and still able to support you and your family. You will most likely need a few weeks off work to get used to the chemo process.

 

• You will probably be at hospital at least once during the process, probably due to a side-effect being worse or more serious side effect or receiving an infection. You will also need your treatment days off, including some days here or there, because of side-effects (fatigue, brain-fog, nausea, etc). So, you will need to discuss with your work as well, so that you can take the time off you require and don't have to worry about this as well.

 

• Some of your home duties (looking after pets, babies, etc), as well as some things around the house will also make you prone to infections. So, you will need to take extra care when dealing with these or get another person (significant other, housemate, etc) to take care of this thing for you. This also includes certain events that I call "infection city", which are crowded places (e.g.  large parties, festivals), places where you can't control who has been there and its cleanliness (e.g. ch as public transport, cinemas, pubs, etc). However, if the event is important, like a wedding, or have any questions with respect to this, discuss it with your oncologist as they'll be able to advise you on the best way forward.

 

• As time goes on in your chemo journey, try to keep up with your routine, treating your side-effects, taking note of new or changes to your side-effects and any treatment for these, because you will likely get sick/bored of this routine throughout the process. Not, keeping up with the routine that has been established with your medical support team might require extra medication/treatments or the severity of your side-effects increased and could become something serious. However, do try to relax into the process as it goes on and rely on the information that you've been given, treatments and your medical support team. This will allow the process to go more smoothly.