You made it through your surgery and your hospital stay is over. Here are some tips for when you get home.
Follow your doctors’ instructions
Follow all your Doctor’s instructions regarding wound care, rest, lifting restrictions, driving, surgical bras and garments etc. Most importantly if your Doctor says don’t do something – listen and don’t do it!. When discharged from hospital ask all your questions (to Doctors and Nurses) no matter how insignificant you may think they are and have contact numbers for when you get home and have another question or concern.
Rest, rest, then rest some more
Take it totally easy the first full week. Take multiple naps, watch movies, read books and relax. Have people do almost everything for you to avoid overdoing it. Be warned it is super easy to overdo it when you first get home. Even opening the fridge, opening drawers, wiping benches, picking up stuff and carrying laundry is too much! Also washing your hair is too much in the first week as you can’t lift your arms so book into the hairdressers. If you do too much you will pay for it that night and the next day with muscle pain and a very sore body.
Fatigue is normal, but very frustrating.
Gradually increase your activity and ease back into your ‘normal’ routine. Remember most women require four to six weeks off work (and this includes paid and unpaid work!) to recover. A mastectomy is a major invasive surgery and body tissues need rest to recover and repair from the procedure. By over doing it you are slowing down your recovery and healing. Remember no strenuous activity or lifting for approximately six weeks following your surgery (your Doctor will tell you when you are ready).
It is difficult for many women to ask others to do things for them (let’s face it we are usually the ones doing the doing of things) but at this time you need to learn to ask and not do. Set up your rest area – phone, computer, book, water, etc. within reach and think about a bell so you can ring to get a family member rather than call out (or txt message for that cup of tea). And most of all don’t fight the time it takes to heal.
Taking Medication and Pain Control
Get all your scripts filled immediately (with non-child proof caps – you will find the push down and turn type difficult to open with limited arm strength) and in a notebook write down what you take and when. It is easy to lose track of whether you have taken your medication or not and writing it down ensures you have and have taken it at the right time (and haven’t taken a double dose). Writing down your pain medication is also useful as it allows you to slowly reduce the amount and strength over a few weeks.
When it comes to pain management take your pain medication regularly. The job of the medicine is to avoid pain. If you get in too much pain you will feel miserable waiting for the pain medication to kick in. Also, studies have shown that a patient who has less pain recovers better.
Preparing Medical Supplies
It is useful to have the following at home: Laxatives as the pain medications/general aesthetic can make you constipated; Ibuprofen; Panadol; Post scar treatment (although you won’t need this until your tape/bandages have been removed); Spare dressings (although in some cases you won’t need these as your Surgeon will remove your tape/dressings at your first follow up appointment).
How to Sleep
You will most likely need to sleep on your back for at least three or four weeks (definitely the case if you have had a double mastectomy). This is actually harder than it sounds if you are used to sleeping on your stomach or side and getting sleep is really important for your recovery (and feeling rested and able to cope in general).
If you have a spare/guest room, consider using that for the first few weeks. It means you can get up as often during the night as you need and turn lights on without disturbing your partner. Two people with limited sleep equals a grumpy household. Also you will want to set yourself up with a lot of pillows for support. To sleep on your back you will probably find you need about four pillows behind you (so you aren’t flat and are propped up) helps and then one on each side for each of your arms to support them and take the pressure off – all of this means you have taken up a lot of the bed! Some women find the body pillows worked for them.
For the first few weeks you may wake every couple of hours (this lengthens over time) with muscle spasms and you will need to get up and stretch. This will depend on the type of mastectomy and surgery but for those with expanders/ implants put under the pectoral muscles you will get muscle spasms.
Seeing a Physiotherapist
A Physiotherapist will see you in hospital and give you some exercises to help you regain your range of motion and ease your stiffness in your shoulder and arms. Do these exercises while you are in hospital and when at home find a physiotherapist who has experience with women who have had a mastectomy. At your first appointment post hospital with your Surgeon get the okay for when you can start working with a Physiotherapist. A Physiotherapist will give you a variety of exercises (so important because if you get bored doing the same ones you will find it a chore to do them) and make sure you are doing the exercises correctly.
Also, it may be worth going to your General Practioner and asking to be put on an EPC plan (you should be eligible having had a mastectomy) which means you can claim your physiotherapy through Medicare.
Another tip is when you get home buy some physiotherapy tape (and also the white tape to put under the physiotherapy tape so it peels off you easily) and tape your back across your shoulders and then diagonally from each shoulder to your hip and finally one piece down your spine. This will help you maintain good posture and make you aware when you are overusing (then causing pain) other muscles to compensate for your pectoral muscles or overusing your pectoral muscles (once again causing pain). You can ‘wear’ this for two or three days and then change it as it loses its tightness (use your hairdryer after a shower to dry the tape otherwise it stays a bit wet and makes you cold). This tip may not work for those whose surgery involves their lower back muscles.
Also ask the Physiotherapist to give you written instructions/drawings so when you get home you can refer back to them and not rely on your memory. Finally, do your physiotherapy exercises, as these will give you back your range of movement, relieve your stiffness, and will make big a difference to your everyday life.
Doing Your Exercises
Follow your Surgeon’s instructions regarding exercise. Usually, you will be encouraged to walk and have been doing laps of the hospital. When you get home walk a bit further each day. Listen to your body and stop if you get tired or dizzy. Resume more physically active exercise, running, swimming etc. once your Doctor gives approval and gradually build back up to your pre surgery levels.
It can be frustrating, for example if you were a runner and feel great but still have bruising and swelling and your Surgeon says no running (raising your heart rate/pulse slows down healing) – listen, grit your teeth and DON’T RUN.
Another program is the YWCA Encore program which runs for eight weeks and you need your Doctor’s signed approval to participate. You don’t need to have cancer to do the program and also the Young Group (under 45) is highly recommended. The program includes weekly meetings with a speaker, floor-based exercises and hydrotherapy pool exercises. This program is fully funded and free to participate in.
It is very important that you drink plenty of water during your mastectomy recovery. While having surgery, a lot of blood and other fluids are removed from the body and you will have to reinstate these in the days following surgery for getting the best recovery results.
To assist your recovery each a diet rich in nutrients – in other words eat healthy. For your cells and tissues nutrients are the building blocks and will assist your recovery. So, eat a well-balanced diet of to help your body.
Managing family and friends
Family and friends usually want to help and want to be updated on your health. However, it can be exhausting dealing with endless phone calls and visitors. So think about how you can communicate – Facebook, emails, a webpage and what works for YOU. Learn how to say no to visitors, wind up phone calls and send people home. It is not selfish to put your health and recovery first (and mental wellbeing).
Remember though that most people do care and want to be updated and helpful, therefore Facebook or regular emails can be an excellent way for doing this. Also don’t underestimate how uplifting and encouraging it is to read support messages and know that so many people care about you. If family and friends offer help – food, driving, childcare, ironing let them!
Finally think about your caretaker (husband, parent, partner), for a preventative mastectomy they are often overlooked with family and friends not asking, ‘how are you?’ Write them a thank you card, organise a break for them, basically do something nice to show how much you appreciate them and their support and acknowledge that can be a stressful time for them.
Support and talking to others
Regardless of your level of support from family and friends you may find it helpful to talk to others who have gone through a mastectomy. Talking to others who have gone through the same decision-making process and procedure will give firsthand understanding and support. It is a major deal both physically and emotionally to undergo a mastectomy and it helps to connect with other women who have gone through what you are feeling.
Remember the Pink Hope Community are always here for you.
Some things will feel weird and look weird
Your Surgeon will inevitably cut and/or damage nerves in your chest area. It’s virtually impossible not to. Understand and accept that from now on, there will be areas of your chest that are numb or tingly and some things will feel different. Things that feel weird can include, sneezing when you have expanders, grating cheese, wiping benches and chopping hard vegetables, eg: pumpkin.
You have just come home from major surgery and most likely haven’t finished your reconstruction so be aware that your chest/breasts/body will not look perfect/normal and you still have recovery and further surgery to go – however you have just achieved something amazing so try to be proud of your body.