After surgery for soft tissue sarcoma

How you feel and your recovery after your operation depends on a number of factors. This include the type of soft tissue sarcoma you have and your operation.

When you wake up after your operation

After a big operation, you may wake up in the intensive care unit or a high dependency recovery unit. You usually move back to the ward within a day or so.

In intensive care you have one to one nursing care. In the high dependency unit you have very close nursing care. Your surgeon and anaesthetist review you regularly and watch your progress closely.

These units are busy and often noisy places that some people find strange and disorientating. You'll feel drowsy because of the anaesthetic and painkillers.

Your wound

Your specialist surgeon will give the nurses and physiotherapists very detailed instructions about your recovery.

Tubes and drains

When you wake up, you will have several different tubes going in and out of your body. This can be a bit frightening. But it helps to know what the tubes are for. You may have some or all of the following:

  • Drips (intravenous infusions) to give you blood transfusions and fluids until you are eating and drinking again
  • A line into an artery which is used to monitor your blood pressure
  • One or more drains coming out near your wound – these help to drain blood and tissue fluid from around the operation area
  • A tube into your bladder (catheter) so that your urine output can be measured
  • A tube into your back (epidural) to give painkillers directly to the nerves in your spine

You will have a blood pressure cuff on your arm when you first wake up. There will be a clip on your finger to measure your pulse and the oxygen levels in your blood (called a pulse oximeter). You may also have an oxygen mask on for a while.

The nurses will measure your blood pressure often for the first few hours after you come round from the anaesthetic. They will also keep a close eye on your urine output because it can help to show whether you have too much fluid or are getting dehydrated. The nurse will remove the wound drain when it has stopped collecting fluid from the operation area.

Painkillers

It’s normal to have pain for the first week or so. You have painkillers to help.

Tell your doctor or nurse as soon as you feel any pain. They need your help to find the right type and dose of painkiller for you. Painkillers work best when you take them regularly.

Immediately after surgery you might have painkillers through a drip into the bloodstream that you control. This is called patient controlled analgesia (PCA). Analgesia is another word for painkillers. 

Or you might have painkillers through a small thin tube that is put into your back. This tube is connected to a pump that gives you a constant dose of painkillers. This is called an epidural.

You get painkillers to take home. Follow the instructions your nurse gives you about how often and when to take them. Contact your doctor if you still have pain or if it gets worse.

Many hospitals use nerve blocks for pain relief after surgery to an arm or leg. This means that local anaesthetic is injected around the main nerves going to the affected limb.

This works very well. But it means that the nerves do not work for a time. So you may find you can't move your arm or leg properly. Don't worry about this. You will be able to move normally again when the local anaesthetic wears off.

Phantom limb sensation

If you had surgery to remove a limb, you might experience phantom limb sensation. Immediately after surgery, it might feel as if the amputated limb is still there. Experiences differ from person to person. You might feel the whole limb or just part of it such as the toes. Sensations vary from feeling like your leg is in an odd position or has the same length and weight as your other leg. 

Phantom limb sensation is common for many people. It happens because the brain is still sending signals to the limb that is no longer there. This will gradually fade. In the first few months after surgery, it can be easy to forget that your limb is no longer there. So you should take extra care before getting up, especially at night or after sitting for a long period.

Phantom limb pain

If you have had an amputation, you may feel pain in an arm or leg that is no longer there. This is called phantom pain. But it is very real, although not everyone has it. The pain can be tingling, burning, itching or cramping. Some people say it feels like standing on a 'LEGO' block.

Doctors are starting to understand how and why phantom pain happens. Phantom sensations can be triggered by many different things. It can differ from person to person. Common triggers are swelling, muscle spasms, temperature changes, emotional changes or changes in the weather. For most people, it settles down in time. But if not, there are ways of helping to control it, including painkillers.

Let your doctor or nurse know if you are having any phantom pain.

Getting up

Getting up may seem very difficult at first. Your nurses will encourage you to get up and about as soon as possible after your operation. Moving about helps you to get better, but you will need to start very gradually. Your physiotherapist will visit you every day after your operation to help you with your breathing and leg exercises.

Some sarcoma operations are major surgery and you may need to stay in bed for the first couple of days. You may need to wear elastic stockings or inflatable boots to help prevent blood clots forming. You may also need injections of anti clotting medicines to help thin your blood.

Your nurses will help you to get out of bed and sit in a chair one or two days after your surgery. They will help you with all the drips and drains. Over the next couple of days, the tubes, bottles and bags will start to be taken out. Then, it will be much easier to move and you will really feel that you are starting to make progress.

Possible problems after surgery

You’ll have follow up appointments to check your recovery and sort out any problems. They are also your opportunity to raise any concerns you have about your progress.

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