After surgery for soft tissue sarcoma

How you feel after surgery depends on what operation you have. Surgery to remove all or part of a limb is major surgery. You will need to spend time in the hospital and then give yourself time to recover once you are home. After your operation, the nurses keep a very close eye on you. 

When you wake up after your operation

After the operation, you wake up in the recovery room. You will have one to one nursing care. The nurse looks after you until you are awake and well enough to go back to the ward.

Everybody is different when they are waking up after an operation. It takes some people longer than others to wake up. Some people remain very sleepy for a while afterwards. You may be in the recovery room for hours before you are ready to go back to the ward.

Back on the ward your doctor will see you regularly. Specialist nurses may visit you. They look after people who have had major surgery but do not need to be in the intensive care or high dependency unit.

Sometimes you may wake up in the intensive care unit (ICU) or high dependency unit (HDU) after your operation. This is so your doctors can keep a closer eye on you. This may happen if:

• your general health is poor
• the operation took longer than planned
• the operation was more complicated than the doctors thought it would be

In the ICU you have one to one nursing care. In the HDU you have very close nursing care. 

The staff in the ICU or HDU will speak to a member of your family or friends about visitors. But, you usually move back to the ward within a day or so.

Tubes and drains

When you wake up, you’ll have several tubes in you. This can be frightening, so it helps to know what they’re for.

You might have:

• drips to give you blood transfusions and fluids usually through a vein in your neck
• wound drains to drain any blood or fluid
• a chest drain to help your lung expand again
• a tube into your bladder (catheter) to measure how much urine you pass
• a small tube into a vein or artery to check your blood pressure
• a fine tube into your back that goes into your spinal fluid (epidural) to help relieve pain
• a tube down your nose into your stomach (nasogastric tube) to drain bile and stop you feeling sick

You may also have an oxygen mask on.

Electronic pumps may control any medicines you have through your drip.

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 connects to a pump that gives you a constant dose of painkillers. This is called an epidural.

You get painkillers to take home. Your nurse will talk to you about:

• how often to take them
• when to take them
• what side effects you may get 

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.

Your wound

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

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 and making progress

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.

Your specialist surgeon will give the nurses and physiotherapists very detailed instructions about your recovery. If you have had limb sparing surgery, the bone will have to heal before you can use it very much. Your surgeon will tell you when you can get up and how you can use the limb that has been operated on.

After your amputation

After your surgery, you will have a stump or wound area that is sore and sensitive. Once this has healed and any swelling has settled down, you will see a prosthetist. Prosthetists are specialists who design and fit artificial limbs (prostheses) to replace those lost through amputation. 

The prosthetist will make a cast or impression of your stump to make sure that the prosthesis fits as well as it can. They then use the cast to design a suitable limb.

They fit the limb so that it works as well as possible for you. They also continue to care for you and carry out adjustment or repairs to the prosthesis if needed. 

You will have a lot of help from your prosthetist, physiotherapist and occupational therapist to help you learn to use your prosthesis.

Having an amputation is a lifechanging event. It will take time to adjust emotionally and physically. Talk to your healthcare team if you find it hard to cope. They can offer advice and support.

Going home

You’ll need help when you first go home. The dietitian will talk to you and your family about what to eat. It can take some time to find what works for you.

You’re likely to feel very tired for several weeks and sometimes months after your surgery. You will need to take plenty of time to rest at first.

It helps to do a bit more every day. Try:

• sitting for less time each day
• walking around the house a bit more each day
• building up to walking outside

What you can do depends on how fit you were before your surgery and any problems you have afterwards. Talk to the physiotherapist or your doctor if you’re unsure about what you should be doing.

Contact your doctor or specialist nurse if you have any problems or symptoms you are unsure about. You’ll have follow up appointments to check your recovery and sort out any problems. They‘re also your opportunity to raise any concerns you have about your 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.