What do you wish you had known before starting chemotherapy?

I remember being told unexpectedly that I needed chemo and the only thing I really knew about it was how it is portrayed in films/books etc. I didn't know about the different chemotherapy drugs or the different regimes. 

I didn't realise how long I would be in the hospital. I would go in at around 8 and be one of the last to leave at around 530/6. 

For me I felt better once I realised it was one day in hospital and then the next 20 days at home. 

It is normal to feel scared and chemo can affect us all differently. 

For me there were side effects and some were pretty unpleasant at the time, but they did tend to pass and there was often medication available. 

I was given a book to write in and it helped to write each day how I was feeling and about any side effects. This helped when I had an oncology review each cycle but also because I noticed a pattern with each cycle. For instance I felt most unwell for the first week and then would improve by the second week. On subsequent cycles I still felt unwell but knew it would soon pass. 

They normally give you a 24 hour cancer helpline and I would say never worry about calling it- the nurses on mine were really supportive. 

Hair loss for me and many others can be a big concern. Ask about scalp cooling and whether it may be suitable for you. It can not be used for all cancers but for mine it could be and it gave back some control. 

I was given steroids to take for the first few days of each cycle and I found having a tapering dose helped avoid the sudden crash on day 3 when they would drop. 

With anti nausea medicine it works best if you take it at the first sign on nausea- before it really takes hold. And if one type does not work- then there are others that can be tried. Small meals and snacks worked best for me. Ginger biscuits and barley sugar sweets helped me. 

Fatigue is real and it is important to rest up and go with the flow for at least the first week. Listen to your body.

The effects for me accumulated with each cycle and this can be normal. 

They have to tell you all the potential side effects when they are consenting you for the treatment. It does not mean you will necessarily get them all. If you do have any, tell them and they can often give advice. 

Things can taste different when you are on chemo. Some foods that you normally like can taste off. I found lemon tasting things most palatable. 

During chemo if you notice any tingling, pins and needles in your fingers or toes- it can be a sign of neuropathy developing and it may mean a reduction in dose is needed. 

And lastly- buy an accurate thermometer and keep an eye on what your normal temperature is. Any deviation up or down, call your hospital and be aware of any symptoms of sepsis. If you become neutropenic as I did several times - any infection could take hold quickly. I called mine, went straight in and was given IV antibiotics and full checks. 

Jane