Kamla on her journey through diagnosis and treatment for ACC. Her advice is 'Be brave. Keep moving. Push yourself. Don't give up!'
Kamla, together with her daughter Kiran talk about her diagnosis or ACC, carbon ion treatment and quality of life
Kiran: Did you have symptoms? What happened when you got the diagnosis? Tell the story.
Kamla: Well, I’ll tell the story my nose is basically bleeding and all the time I go to the doctors and I say I can’t breathe properly, and he keeps changing my cream and many other things he gave me.
After that basically one day my nose is bleeding again and I went to see the doctor and I told him ‘this is what’s happening, if you can’t send me to the hospital I am going myself, I’m not going to wait for you’ and straight away he sent me to the hospital and they had a look and did many things like MRI, X-ray, CT Scan.
I soon came to know after that, but I was suffering for nearly one year and the doctor kept saying to do this, do that. I kept saying, but he kept saying do this, do that. I sometimes tried to buy cream myself but suddenly after a few months I think my nose started bleeding and then I went to see him again and he didn’t say I think you have cancer, but did say I will do you a letter for hospital. He didn’t give me the letter, but he said he would get me an appointment with the hospital doctor.
I think after the MRI or CTScan at the hospital they come to know I have a bad cancer, and I had a very bad time when I found out. They done something to my nose, whats it called a biopsy?
Kiran: Mum had a biopsy but it was a pretty aggressive biopsy that hurt her eyes, but we got the results quickly after that and found out she had cancer.
Kamla: They come to know what kind of cancer I had and they said they could do surgery, but if they do surgery the cancer will still be there and I thought to myself why do surgery when the cancer will still be there. What’s the use?
My children they were more upset than me. They are brave and they are good - they are so good and they cried so much but I said to them it’s no good crying now, we need to do something. In the morning they started to do something and my big son he found Germany and then two months later we reached someone in Germany and talked to them to make sure we could go or not go. We wanted to be sure because we spent a lot of money, so we wanted to be sure. Then it happened.
Why did you go to Germany for your treatment?
Kiran: So when mom when mom was diagnosed, she was diagnosed with ACC of the right maxillary sinus. And then also at the time when we found that diagnosis, the only option available was surgery, quite invasive surgery. My mom would have lost her eye because the ACC had infiltrated the eye orbit. And then two weeks after that, mom had another set of scans. We found out it spread the skull baseline. So, the the surgery was on, then it was off then ultimately a question was asked of, mom, ‘what's more important, quality or quantity of life?’ Mum answered 'quality' because at the time she was thinking about the carbon ion treatment in Germany, and that's why she decided to not have surgery and went to Germany for the treatment.
How did you find the whole process?
Kamla: Very difficult. The first one I did was carbon ion therapy and I think I had 8 sessions, but that was very hard. Very hard as you have to have 45 minutes on the bench which is really high, round and round and you can’t move. Really, really hard. Once I tried to give up and then I screamed and they said just hold on 2 minutes more and I did stay there.
When I came out I felt very ashamed of myself with how much I cried and I said that these things should not be done. Then my daughter (this one) Kiran Sondhi said it doesn’t matter, forget it. Don’t feel ashamed. After that I felt brave, and then I did 2 or 3 more and then its really bad and very very hard. After that I was just scared and then after that you have to do 25 IMRT.
Kiran: Mum has a treatment combination of carbon ion and then 25 IMRT.
Kamla: I said I don’t know how I can do that. And after I’d done one IMRT session, I said ok it’s not too bad. The other one (carbon ion) was 45 mins and this one was 20 mins, so I said do it.
When I had done 30-40 I got tired doing it every day and I was fed up and I said ok I have to do it because my children are suffering seeing me every day and they were coming to stay with me in Germany my sons and daughters were coming and going. Someone was always with me. They have done so much for me and are still doing.
Then I finished and then I realised my face is really bad, black and red and there was something going on my lips in my nose, and something going on my shoulders. You know, I don't know what that was.
Kiran: When mum was having radiotherapy she also got shingles. She was suffering with shingles on top of everything else because the immune system was so low.
Kamla: But I did it!
How long did it take to recover?
Kamla: Three or four months I think. After that, it is very bad also. I told you the the treatment was bad but after that I'd never know that would happen to my pain. I couldn’t eat anything. Too much pain. I just ate vitamins and the nutrition drinks for 2 months. By night time my mouth was really painful inside and I was scared as in the night time it was very painful. I thought I would never eat anything again in my whole life.
After three months or 4 months I was back in hospital and they started to give me other food and I did eat it and I asked if I would ever be able to eat what I ate before and they said 'yes' but I thought they were just saying. Then my youngest daughter did a nutrition degree and she had just had a baby so was at home and couldn’t go to work so and she came every day and bring the baby and look after me so much.
How do you feel now?
Kamla: That time when I came from Germany I thought ok I cant eat everything ok, I was happy and then and just say, OK, then I say I’m going to live like that it will be ok. But then after two years I have a breathing problem and my nose if very blocked and my daughter came to see me and she says mum I don’t know how you breathe like that. After Coronavirus she came again to see me and then I went to hospital and had an MRI and they said I had something wrong with the lungs. I wasn’t expecting that, I was just saying I'll be OK, you know, and the really shocked me.
Really, really, I said we've done so much, so many things and spent a lot of money and I think that was everything, but my children said 'we will fight again' and' they start to find a private doctor and they will find somebody. At the moment I take the medicine and taking a medicine all the time, you know, makes you mad sometimes because you’re taking so much medicine, but I still take it and sometimes I am feeling sick and sometimes I don’t feel like eating, but I push myself to eat something, but that’s the life, I cant say it’s a bad life, but I did have a very bad time.
You do get fed up sometimes. When you’re younger you do so much things for your children and you think when you’re older I will have a rest, I will go here and there and you’re thinking that kind of thing. It’s not happened but my children say, 'still you can go'.
Kiran: when it’s safe to travel we will take mum away. You’re feeling ok though aren’t you mum, generally speaking?
Kamla: Yeah, I’m feeling ok.
What advice do you have for people with a recent diagnosis?
Kamla: Be brave. Love to God and keep moving, push yourself and stick to your positivity, don’t give up. When I got therapy and when I finished my daughter cried and I asked why she was crying and she said she was happy inside because her mum had done it.
Kiran: Mum has got lung mets and each scan is nerve wracking and at the moment the best result is a stable result but we have just been trying to keep mum positive and think about the bigger picture. Although mum does have lung mets, 90-95% of her lungs are in good working order. Mums primary tumour – yes, there is some activity there but everything else seems to be stable and skull base lining is ok, no further spread. My advice for the whole family is think of the bigger and picture and don't get bogged down in just one aspect of this, just think about, you know, what are we going to do next with mum, what kind of memories are we going to make?