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EXH's been diagnosed with Burkitts lymphoma

(6 Posts)
NeverBeenToMe Sun 23-Jun-13 09:29:39

Starts chemo on Wed. If not, has 4-6 weeks, but apparently there is a 60% chance of coming through the chemo successfully.

I feel numb; he is my ex for good reason, but he iS my daughters' father, and the thought of how much this will obviously upset them is awful.

Anyone have experience of this lymphoma? Have googled but it says its more common in children?? always had to be different

tigerlilygrr Sun 23-Jun-13 21:36:32

OP, didn't want to read and run. I do hope he pulls through and that you can shield your daughters at least a little from the situation. How old are your girls? Perhaps think about reposting in chat to get a wider audience and therefore a better chance of someone who has experience of this illness?

HondaJizz Sun 23-Jun-13 21:40:56

My exH had Burkitt's. Just wanted to post to let you know I was writing you a longer post...it will be with you shortly.

HondaJizz Sun 23-Jun-13 21:58:00

My H, at the time, was diagnosed with Burkitt's in Feb 2009. We were living in Australia. He had found a lump in his jaw and went for the necessary tests. He got a call at 4pm saying that he had to pack a bag, attend the nearest hospital , which was about forty mins away, and that he would be having chemo that night.

It was just do sudden, up until that moment he did not know he had cancer. But, as you've mentioned, with Burkitt's time is of the essence, and it is fatal very quickly without treatment. As soon as he was admitted they conducted a bone marrow biopsy, as they needed to see if it had spread to his bones. He was awake for this, no time for anaesthetic. The results came back quickly and it hadn't spread. He was taken in an ambulance later that night to the Alfred, in Melbourne which is their equivalent of Christies in Manchester.

He had a Hickman's line inserted the next day. This is a canula going straight into the artery, meaning that they can get chemo in quick and fast. At this point, H did not feel remotely ill, so the speed everything happened at was confusing and scary, he was so brave and did everything they asked.

His regime was intense, consisting of many 24 hour chemos, and he remained in hospital initially for about three months. He was not allowed to see the children, due to the infection risk. The methantrexate was the killer combination, it made him so sick. He suffered with huge mouth ulcers that made his face swell. He would regulary get leg rashes which meant he needed platelets. And he needed many blood transfusions.

He had three rounds of treatments, each lasting about three months. Between each he would come home and rest for a week. Following the chemo rounds, he had around twenty radiotherapies as an outpatient.

He is now in remission. The doctors were utter lifesavers. They even shipped over a piece of his tumour when we moved back to England, at the end of the treatment.

I can't describe the journey, it makes me cry. I was living an hour away from the hospital with two pre-school children. The community rallied round and babysat so I could go and visit him but it was an incredibly lonely time. I remember the consultant sweeping in to the room on the first night and yelling at him, asking him how many men he had slept with, making him cry. Because Burkitt,s like you said, is normally found in children with HIV in Africa. It did not make sense to the consultant that it was in a White, western man. The dr wasn't being mean, just trying to get all the facts in order to treat it successfully.

It is the speed of it, the fact that there is no time to digest, no choices to make. If he hadn't had treatment, he would have died the following months. Your ex has been diagnosed and pointed for treatment. He has already cleared the biggest hurdle, now the staff will swing into action.

Please pm me if you need to chat further. It is all still so fresh with me.

NeverBeenToMe Tue 25-Jun-13 09:38:29

Thank you so much for your experience Honda. We have driven down to Exeter to see him for two days before chemo starts. Ct scan shows huge liver, so less lung capacity, and some dark patches on one kidney.

He didn't look too bad though, better than we expected. And brightened up after seeing the girls (14,16,21).

Like you say, it's the suddenness of it. Monday last week some consultant was still telling him it was a hernia issue despite the size of the swelling and more pea size swellings on the other side of his groin. By Wednesday he was in hospital with this.

We will see him for a couple of hours today then go back home to Birmingham. Set Skype up so when he is well enough he can chat to the kids.

Thank you again x

HondaJizz Tue 25-Jun-13 14:29:04

You're welcome. Please contact me if you need any further info along the way.

Good luck x

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