Yikes, 3 month checkup brought forward

2010-01-22T00:07:01Z

Been a bit worried because my son's body has been aching so much over the last couple of weeks. He keeps feeling nauseous too and last night his ankle was swollen and itching like mad. He was in so much pain I had to help him out of bed and to get dressed

Trying not to burst into tears (I've become such a wet blanket), I called the lymphoma nurse today and she suggested we bring his 3 monthly check forward.

Feeling slightly panicky. Had hoped she'd say this was all perfectly normal and I was worrying unneccessarily. She didn't.

Teensy bit terrified but we will just have to wait and see.

Hi to all

2010-01-17T14:21:55Z

Last April I stood at the end of my son’s hospital bed staring stupidly at the junior doctor trying to figure out why he thought my son seeing an oncology specialist was a good idea, surely he would only want to see cancer patients … ohh!

Stage 4 sacral diffuse large B cell Non Hodgkins Lymphoma with bone marrow involvement. So the rollercoaster began.

At 2 in the morning he underwent an emergency laminectomy to remove pressure on his spinal nerves and prevent paralysis. With the NHL being so aggressive and advanced a regime of fortnightly treatments of R-CHOP was immediately started, even though the UK trial for this shorter cycle wasn’t yet completed. We were told my son couldn’t wait for those results.

A lumbar puncture to administer intrathecal methotrexate was also sandwiched between the R-CHOP treatments to stop the cancer spreading to the brain. Pneumonia and ICU were rough but my son fought for every breath and came back from the brink. After the chemo was finished four weeks of radiotherapy followed.

November 2009 brought the news we’d been hoping for – the cancer is in remission.

So why am I so depressed? Is there something wrong with me? I feel abandoned, resentful and isolated.

Everyone around us is so happy, life can go back to how it was and no one has to think about cancer any more. But life will never be the same for us and cancer is our companion.

My son turned 22 in September. He had to give up his studies and reluctantly move back in with his mum. He is adapting to the loss of feeling in his legs from damage to the nerves in his spine. He accepts waking up every day with a multitude of aches and pains and he copes with the weakness that overwhelms him without warning. Chemo brain and achingly cold feet are just a part of life.

Not once over the last year has he ever complained.

All of the medical staff told us to expect a long road to recovery and to take things as slowly as necessary.

But people around us are getting impatient, it’s almost 3 months since treatment ended and they think my son should be back to ‘normal’. Everyone has an opinion and some unwanted advice. I must make my son do this exercise or see that therapist. I should get him a blood test for this and give him supplements for that. He suffered from depression as a teenager so all his symptoms must be psychological. There are a multitude of websites that I really must visit and a million articles I absolutely have to read.

I am so grateful to everyone here who has shared their stories and experiences. I cannot tell you how much it helps knowing we are not alone and that there is support out there.

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My story so far

Yikes, 3 month checkup brought forward

Hi to all