Non-what?? (My Experience of Non-Hodgkins Lymphoma)

Member Name: themoomin

Product:	My Experience of Non-Hodgkins Lymphoma
Date:	15/03/01 (1020 review reads)
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12 centimetres. That's post-decimal by the way - in good old-fashioned inches it's 4.75. Not very big at all really. But that's the diameter of the tumour I had when I was diagnosed with NHL in October 1999. I was 24.

* * * * *

I'm writing this for myself, but also for anyone out there who is diagnosed with cancer and wants to hear someone else's experiences. I hope it will be of use to someone. Please feel free to tell me what you think - I can take it!

So, let me tell you my story . . . it will be a long one so I hope you're sitting comfortably . . . . .

My chest pains started roundabout June/July 1999. Looking back, I should have gone to the Doctor straightaway, but as I am asthmatic anyway I just thought the Summer was having its usual effect on my breathing. In August I had a dreadful cough for about 3 weeks. After this cleared up my chest started to hurt a lot of the time, but I thought it was just an after-effect of the cough that would disappear. In the middle of September I was called in for an asthma check-up, and pointed out the small 'bump' in my chest to the Doctor. She didn't even feel it, just listened with the stethoscope and said I'd probably pulled a muscle in my chest and it would heal itself. 'Fair enough' thought I - 'you're a Doctor, you know best'. However, in the following weeks the bump began to hurt more and more, and I found it impossible to lie on my front. Soon every movement was causing me pain. So back I went, and requested to see a different Doctor. He had a proper look at me, and told me it could be a number of things, one of which was growing an extra breast. Apparently this can happen. (??) Anyway, he said as it was obviously causing me pain (by this time I couldn't turn to put my seatbelt on, or turn the steering wheel full circle) he'd get me into the hospital for a scan asap.

I must point at that at this sta
ge the thought of Cancer did not even enter my head. Seriously. I just thought that it would be something temporary, that could be easily sorted out once we found out what it was. So I went home, quite happy, and waited for my appointment to come through.

Within 5 days I was in the local Hospital, for an Ultrasound scan (the sort they do for pregnant women to check on the progress of the baby). I'd booked the morning off work, assuming I'd be back after lunch. How wrong can you be?

<< Blimey this is long already - I'll write the next bit in shorthand>>

The Ultrasound caused concern - could I stay for a CAT Scan? Course I could. CAT scan results went off to Haematology, could I say around for results. Course I could, and I think I rang work to say I wouldn't be in that afternoon. Still no feelings of dread - just interest. You see, I'd hardly ever even been in a hospital before, as the worst thing that had happened to me previously was a fractured arm when I was about 12. The CAT scanner machine looks like a big polo mint on its edge, you lie down and it goes up and down the bit they want to scan. It doesn't hurt.

I was sent over to Haematology after about another hour. From then on it all went a little hazy. I remember a very lovely, Scottish consultant taking me into his office and showing me the results of this scan. 'This is your chest, this is the lump. It's serious. Have you ever heard of Non-Hodgkins disease? That's what we think it is. Would you like us to call anyone? ' Next thing I knew, I was in another room with a MacMillan nurse, whose job it was to tell me exactly what was going on, what it all meant, and to make sure I was okay. He was brilliant - didn't mince his words, but was sensitive and respectful at the same time. The conversation went something like this:

'You're telling me I've got cancer?'
'Yes, almost certainly'

'Oh'
At which point I burst into tears - I just couldn't believe it.

I called my husband, who left work and came to the Hospital straightaway. While we were waiting for him I called my parents, and then the MacMillan Nurse told me some of the facts. Basically, they knew it was a high grade tumour, growing fast and spiralling out of control. The cancer cells had amassed and grown over my breastbone, causing the lump and actually eating away at the bone. It had to be stopped, and fast. 6 months of chemotherapy and steroids, to be followed by radiotherapy. Had I thought about having children? How would I feel about not having children? I couldn't take any of it in.

When hubby arrived we went into the consultant's office, and he went through everything again, explaining it in a sensitive way but not making it sound less serious than it was. Again I heard the words '6 months out of your life, could affect fertility, and 5-year survival rate'.

I was in that Hospital all day, having tests and tests and tests. By the end I was shattered. So was hubby. I was given a prescription for steroids called Prednisolone, and told to take 20 a day starting immediately. 20! Before breakfast! Sheesh. Oh - and 'did I want to be part of a clinical trial of the 'latest treatment'?' if so my treatment would be delayed while forms were filled in and tests done, otherwise they could start treatment straightaway. I opted for the latter - the sooner it starts, the sooner it's over, was my thinking.

On the way home we went to see the in-laws and break the news to them. They couldn't believe it either. I wasn't crying then, but tried to be very calm and grown-up about it. I think I managed quite well, until I got home - and bawled my eyes out.

The next day I had to go to another hospital for a tissue biopsy. That's where they stick a needle in the lump and pull out some of the mass to
examine it. I should tell you - I don't like needles. And here was this crazy man wielding the biggest needle I'd ever seen in my life! I'm such a wet - I was blubbing all the way through . The only thing that cheered me up was the Doctor (another Scot no less) who's name was Steyne, pronounced Stain. Sorry - but it made me giggle! I got the results the same day, which confirmed the diagnosis. It then began to sink in, and all I could think of was losing my hair.

Funny, eh? I'm told I have a potentially life-threatening disease, and all I can think is 'Oh no - my lovely locks!'

Anyway, this is getting off the subject. What I really want to tell you about is treatment and its effects.
The chemotherapy regimen I was put on was called CHOP. Three different drugs to be administered intravenously at three week intervals, an anti-gout tablet, plus the daily steroids. Nice. I was warned that the one drug would temporarily turn my pee red. Eeek! Is that too much detail for you? Sorry . . .

Oh and by the way - you know the biggest needle I'd ever seen (see above)? That was nothing compared to what the chemo drugs were administered through!!!

After the first chemo session I was sick. Very very sick. I'd been given anti-nausea pills but they didn't help. I felt awful. During that week I took a day off work ill. I sat at home and cried all day. I felt so wretched and sore. That was the only sick day I had during the whole time (I'm very proud of this fact), for the rest of my appointments/check-ups I used flexitime and annual leave.

Oh yes, I lost my hair. About 10 days after the first treatment in fact. Despite repeating the mantra 'I won't lose my hair, I won't lose my hair' it happened. In huge clumps. Imagine my feelings when I realised - more tears. In my emotional state I made hubby take photos - 'quick before it all falls out!' Then I had to see the
wig-lady, back at the first hospital. That was sad, but funny too - she was so nice and made me laugh, and we tried some hideous creations! I looked great with a ginger bob, let me tell you . . . but not as nice as the jet-black curls! In the end I found one that almost matched my colour (mousey-brown), and off I went. People at work (I had only told a couple of friends and my boss of the diagnosis) kept asking me what made me do it. I had long hair up til then you see. I just kept saying 'Oh I just fancied a change' while thinking to myself 'can they tell it?s a wig/are they just being polite?'.

Chemo is no fun at all. It basically saps your energy, leaving you tired and irritable. It also messes up your sense of taste, leaving everything tasting of nothing. I craved salty foods all the time, and sour things like penny sweeties and fizzy fish (don't ask!). I felt so tired, and with tiredness came depression, despite everyone's best efforts.

I decided early on not to tell everyone. Basically my reasoning was that I didn't want people constantly asking me how I was, or feeling sorry for me - I just wanted to get on with it. So apart from very close friends and family, we told no-one at all. Hardly anyone in my office knows, and only a couple of people in the choir I sing with. That was just my way of dealing with it. I'd probably do things differently now, as I now realise how much support people can give, but at the time that was how I felt - I didn't want sympathy.

After the first chemo session, I went back to see the consultant. I was told I couldn't sing for 6 months, as it would put undue stress on my chest. I couldn't play my Bass either, or go hill-walking, play badminton, swim, or drive. So in an instant, all the things I loved doing were banned. I was not happy about that at all - especially the singing. The reason I was not to swim was for fear of catching an infection - as the cance
r, was affecting my immune system, and the drugs were also weakening me, I would be more susceptible to colds and flu. Rats and double rats!

Halfway through the course of chemo, I was scanned again, the results showed that the tumour had reduced in size, as they hoped it would. At this point the question of recurrence was broached, and it was decided that I should go for some cell separation. This is a process that ensures that some reasonably healthy red blood cells are taken, and frozen in case of a recurrence of the disease. It basically means that you can be your own stem cell donor if a bone marrow transplant is needed in the future. Unfortunately, before the cells can be separated, you have to produce enough red blood cells to make it worthwhile, so I had to inject myself in the stomach twice a day for a week with a growth hormone. This was awful - I would sit on the bed thinking 'go on, you can do it', with needle poised, and it used to take about 10 minutes before I could force myself to jab. But it was only for a week, and eventually it was over. More blood tests, and then I was advised to allow 2 days for the separation process, and sent off to a third hospital! It's basically like being attached to a huge washing machine, with a needle (the biggest yet) in each arm. The blood is pumped out of one arm, then through the separator, then back into the other - the whole 8 pints goes out and back in again. Luckily they managed to collect enough stem cells the first day, so I didn't have to go back.

Another three treatments later, it was back to hospital no.1 and the scan was even more positive - the lump had almost completely disappeared. After enough time to recuperate and let the chemicals leave my body, it was back to hospital no.3 for a course of radiotherapy - this was in May 2000. I went every weekday for 4 weeks, and received 20 blasts of radiation directly to the tumour site, from front and back. They have to
make a small pinprick tattoo to mark the spot, and then it?s the same procedure each time. It doesn't hurt, but the skin around the affected area did become sore and reddened. I always have to be careful when out in the Summertime now, as that square patch will always be more susceptible to sunburn, and it could have affected the way my heart functions in later life ( as the radiation affects everything it hits, and unfortunately my heart and part of my lungs were direct targets) , but apart from a dry cough during the treatment there were no other side affects.

And that was it. I have been in remission since February 2000 - 1 year, 1 month, and counting - and have had few problems since. I have to see the consultant at 6 monthly intervals, and am under strict instructions to call in immediately if I get any pains, or am concerned about anything. It will be at least 4 years before we will be able to try for a baby, and until we try we won't know if my fertility has been affected or not, although the gynaecologist seemed to think I should be okay, as my cycle appears to have returned to normal after stopping completely during treatment. Ideally we were planning to start a family a bit sooner, but we can wait!

I do not think having Cancer has changed me particularly. Sure, I've changed, but everyone changes as they get older. I no longer have totally irrational arguments with people, I try to eat more healthily, and to look after myself a bit better, but who's to say I wouldn't have done that anyway? I do know that I never once thought 'why me?'. What I did think was 'okay, I've got this disease, and now I will get better.' Positive thinking is a powerful thing. I believe it works. So life can be a bit unpredictable sometimes, but you don't have to let it destroy you, or your sense of humour.

Congratulations if you got this far in my story. Thank you for reading. And on the subject of thanks,
I'd like to say a big one first of all to hubby, who held me when I cried, and supported me throughout, and also to the friends who kept me from sinking into the 'slough of despond' during that time. You know who you are!! I love you guys! And of course all the family - thank you, more than I can ever say.

There is a lot more I could have added to this article. I keep reading it back and changing things, and I have actually left quite a bit out, some intentionally. It is the longest opinion I have written, and it has certainly been very useful for me. I know that I have been lucky in that I coped very well with the treatment I went through - some people have to take the entire 6 months off work because the drugs affect them so badly. For some reason, my systems could cope.

I realise I have not told you a great deal of 'medical' stuff about this Cancer. I figured that this opinion was supposed to be a personal story rather than a description of the human immune system. If you need further information, I found the internet has a wealth of information on NHL. Some sites I found include the following, although there are many more resources available, both here in the UK and from the USA:

www.cancerhelp.org.uk
www.cancerbacup.org.uk
www.graylab.ac.uk

PS I have hair again! It is madly curly, and uncontrollable in the mornings, but it is MINE and I don't worry about it blowing off in the wind anymore! I plan to grow it down to my knees now - you have been warned - I might have to change my name from themoomin to Cousin IT!

moomin

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