You are going through a tough time, the physical side effects will probably affect your mood in some ways.
For me it was not a bad mood for the whole period but I had my downs.
- The duration of the treatment and the recovery
The duration of the treatment does make time in certain phases seems to go very slowly.
I had 3 down turns, the first one when I realized that despite all odds I had cancer.
- The loss of appetite due to Cisplatin
The second one was the mentally worst, it was in the end of week 2 of the treatment, I had just got second round of Cisplatin and for a 3 days I was not able to eat anything due to loss of appetite. I could not find a solution how to intake food despite I knew I needed it, my limbs got very cold due to lack of food and my mood was nearing a depressive state.
When you are not eating, your mind and body reacts very negatively. When I started eating again on Monday, the mood changed markedly and when i got the tube, the mood was much less of a concern.
- The phlegm crippled me socially
As stated under Side effects, the phlegm for a few weeks made it impossible for me to interact socially. Besides not being able to speak, it smelled bad, I had no desire to converse at all and i alienated myself in the basement.
- The frustrations of the slow recovery
The last mood swing was around 10 days after treatment was finished.
My family went to my in-laws in another part of Denmark to have an Easter holiday with my fullest support. I was alone and when they left, the fake shield of positive energy I built to save my children from my frustrations, went down as quickly as the Berlin wall.
I was so frustrated due to the fact that i missed my children, but even if had stayed with me, i could not have done anything to entertain or have fun with them. The fact that the side-effects were still present and crippled me socially .made me furious.
When I was in treatment I spend much time traveling to and from the hospital, now my mind had time to think and the frustration and impatience that the side effects had not reduced significantly was hitting hard.
It was probably healthy to let it all out, and I felt much better after a few days drowned in self pity.
- The feeling of your life has come to a temporary stop while the world goes on as normal.
I had the feeling that I was left at a station where trains just passed by. Going back and forth from treatments with public transportation and see people doing their normal deeds and live their unworried lives underlined my own mortality with full effect.
My afterthoughts
You will need to find the balance between accepting and acknowledge that you will and you have the right to be frustrated. On the other hand you will need to get yourself together, when it all drowns in self-pity.
There is very little anyone can do to ease the pain or side-effects you experience and it can be as much frustrating for them not able to help you, as frustrating for you to experience it.
And most important,be honest to yourself and your family(expect your small children) and network about your state, don’t try to please and relive them by saying everything is good, when its not,- they cant help you much, but they deserve the truth.
- Your children
If you have small children, you will need to shield them from your worst frustrations, so they wont be scared and think about you all the time in school or kindergarten. I made it very clear to my children what stages would happen, i for example told them that the next two weeks i would feel a little bad, but then the treatment is finished and i will recover.
I repeatedly told them that it was the preventive treatment that was making me sick, not the sickness itself , which is a very important distinction,especially for a child.
- Your partner
If you have a partner you should be able to tell him/her everything, but remember that too much negativity from your side also affects them hard.
If you have children, your partner will be the sole person responsible for them and the household when the treatment is hardest and you are incapacitated. Your partner will be very affected by your inability and the duress of doing everything self, do not forget to appreciate it and show it.
- Your network
Use them as much as possible and do not be afraid to tell them what they could do to help you.
Friends and family came and visited us frequently and made me go for walks. They brought frozen homemade precooked food, my wife could easily heat up so she had one less burden.