One patient with glioblastoma still alive nine years later
by twoparentcancer on Fri Jul 15, 2011 08:33 AM
Hi to everyone,
If you have a spare few minutes to read my story and i'd appreciate any response from someone going through similar experiences.
Where to start.........
Both my parents were always smokers, my mother always smoked heavier than my father, probably twice the amount. I always knew at some point she would have problems. Then about 6 years ago she started getting terrible headaches....that year she had lots of tests and procedures but they could not get to the bottom of what it was.
Then 5 years ago....in the July she started coughing up blood.....they did the necessary tests and she had an appointment on my dads 60th birthday . I worked at the hospital she had the appointment at and we were very nervous to find out the result. I went up to meet my mother and father and unfortunately we were told that it was lung cancer. My mother and father could not stay in the room and asked if I wouldnt mind getting all the information from the consultant. So they left the room and I stayed in listening to all the facts about my mams condition.
They gave her 4-5 months to live and said even though it was non-small cell which is the slower growing because of where the tumour was (almost in between both lungs but more to the right) they could not operate.
This was a horrific blow to us all and I spent the next few months in an absolute daze.
She was then referred to a different hospital where there was 6 surgeons who were discussing her case. My mother was very fit and healthy at this time which made the situation terrible. After weeks and weeks of deliberation 4 of the surgeons said they could not do the operation as it was too risky and 2 of the surgeons wanted to help. They had a meeting with my mother and said they wanted to help her and remove her lung but pointed out the risk outweighed the benefit. We all new it was the only option really so they went ahead with the operation to remove her lung.
This was successful after a very long complicated procedure they removed her right lung. During this time my father was behaving very differently and got very down and depressed....he kept saying he thought my mother was going to die....it was very difficult. Me and my older sister were just as worried about both of them.
They took a biopsy from the site the tumour was removed and found later that they had not removed all the cancer.
Then in the following weeks months my poor mother got a pulmonary embolism which was just caught in time and received chemotherapy and intensive radiotherapy which she dealt with amazingly. She visited a total of 7 different hospitals across the UK....all via NHS.....all to help her in different ways. She was then left with the situation of the cancer was there it was just a case of keeping an eye on whether it was growing or spreading. She dealt very well with just having one lung although it was difficult for me to see her go from a feisty on-the-go woman to somebody who could not walk very far or do much. We spent the following years being in shock and also grateful to the surgeons that had basically saved her life. During this time my mothers father (who was the rock of our family) passed away.
Then 3 years after her diagnosis (2 years ago) my father was diagnosed with bowel cancer the week before christmas. He had an operation before christmas and they removed a tumour the size of a water melon. They removed most of his small intestine also. This was followed by Chemotherapy treatment.
This easter my mother and father were both unwell and we found out within a couple of weeks that my fathers cancer has come back and my mother has ovarian cancer which is entirely separate to her lung cancer :(
My mother has just recently had the tumour removed (size of a football) and they are both receiving their chemotherapy treatment together. My father is awaiting an operation to remove the 2nd tumour once his chemo is finished.
I have now got to the point where it has really affected me. I know its them who are poorly and my sister is in the same boat as me, but it has all got too much for me. I am currently getting Cognitive Behavioural Therapy and take a high dose of Fluoxetine due to everything.
If anyone could relate or help.....i'd truly appreciate it.
i need to accept and come to terms with what is happening which i'm struggling to do at the moment.
Thanks for reading
by Ladylacy on Fri Jul 15, 2011 09:16 AM
I am sorry to hear about your parents. Being a caregiver to my husband I can understand. But remember it is very important to take care of yourself.
I know this will sound harsh but here goes anyway, both of your parents knew that smoking was bad for them and knew the consequences of their actions. I say this because my husband was a smoker also for years and years. He know is fighting laryngeal cancer and the after effects of having his laryx removed and major reconstruction of his throat which was closed off from the effects of radiation. We have 4 grown sons and 2 of them smoke and you would think that seeing what their father is going thru would help them to stop. No way. In fact their spouses smoke too. One of my daughter-in-laws (smoker) make what she thought was a joke saying it would be funny to see smoke coming our his whole in the neck. I told her it wasn't funny and that if she didn't stop smoking she could experience the same thing. I was mad.
I do get mad at my husband when I think that for years I asked him to please stop smoking and that if I got lung cancer from him, he was going to go with me when I died. Some thought it was funny but I didn't. Smoking doesn't just cause lung cancer.
Your parents are fighters and that is what is important right now. But you do need to take care of yourself. While I am only the caregiver to my husband you are the caregiver to two -- your parents. Pleae take care of yourself. This is hard. Maybe you should join a group to help you talk out your feelings with others that are going thru the same thing or have been thru the same thing.
Best wishes to you and your parents. Sharon
by twoparentcancer on Fri Jul 15, 2011 09:34 AM
I'm sorry about your husband too :(
I had kind of come to terms with it but this latest bout in easter seems to have just wiped me out. Almost like I have just cracked. I try to look after myself and my boyfriend is an amazing support.
I know how you feel about getting mad at people. I also find I have a limited capacity for sympathy for others over menial things. Which is very unlike me as I understand everyone has their own problems however big or small. The Cognitive Behavioural Therapy is working amazing and i have another session this Monday which I'm looking forward to.
You'll probably know yourself it is very hard to live day by day, to try not to look to far ahead and be positive. Also everything being out of our control is very difficult indeed...having to almost sit back and watch and trust in the professionals.
I'm sorry for what you are going through, and please, if you need to talk or let off steam about something just drop me a message. It helps me also talking to people in similar circumstances.
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