Hodgkins Lymphoma Symptoms

On my first post for this blog I talked about the most pressing symptoms (a cough and shortness of breath) that triggered my diagnosis, but they were by no means the only symptoms I had been experiencing.

Itching Skin

For about 12 months prior to diagnosis I had suffered with terrible itchy skin. It started off with a few sensitive patches of skin, and escalated over time until such a point where every part of my body itched.

I used to sit and scratch all the time – so much that friends and family used to comment about it. I tried to resist, but the urge to scratch was just too great.

I’d also have very broken sleep, as I’d wake up several times during the night needing to scratch my skin.

It got so bad that I’d have to visit a toilet cubicle a couple of times a day at work, strip off all my clothing, and scratch my skin – my legs, my arms, my face, my chest, my back, everywhere! Even the palms of my hands and souls of my feet itched!

I did eventually get referred to a dermatologist, and was put on a number of medications to try and calm my skin down, and eventually after several months one drug – Dapsone (usually used for treatment of leprosy) – did start to work. But at this point my skin had got so bad that I had open sores on my legs and arms that have left behind permanent scars.

The itching finally stopped on my first day of chemotherapy. It was like a switch had been flicked, and since that day the itching completely disappeared!

Mild Fever

I used to complain at work that the office was really hot. I even got the building management people to adjust the air conditioning to reduce the temperature in the room.

Little did I realise at the time that I was suffering from a persistent mild fever, which made me feel hot all the time.

I used to get relief from sitting in a cold room, and the cold also helped with my itching skin.

It got so bad that it would affect my sleep. When I went to bed I would feel really hot, and it would take an hour or two of lying still in a cool bedroom for me to feel cool enough to fall asleep.

Sleep Problems

The itching skin and the mild fever obviously impacted upon my sleep. But as well as that, I was suffering from Middle-of-the-night Insomnia – that is, I would wake up in the small hours of the morning, and be totally wired, and not able to go back to sleep for 2 hours or more.

To try and help with the sleeping, my GP had me on sleeping tablets, but they didn’t really do anything for me.

At the time I had put my insomnia down to stress. I was busy at work, and when I would lie awake at night I would obsess about work problems.

My lack of sleep also affected my days, and I always used to feel tired and run-down.

Cough and Shortness of Breath

The cough first appeared about 8-10 weeks prior to my cancer diagnosis. I didn’t think much of it, and for the first week or so I assumed it was a cold. I eventually did go to the GP, and I was treated for a chest infection.

However the cough didn’t go away with treatment, and was joined after a while by breathing difficulties.

It got so bad that I would feel dizzy standing up – from the lack of oxygen getting into my system – meaning that I couldn’t exert myself very much without feeling I would faint. Even walking 100 metres was a struggle, and I would constantly need to sit down and catch my breath.

Appetite Problems

In the final couple of months before diagnosis, my appetite was suppressed. I just didn’t want to eat much. Where before I would empty the plate during meals, I found that I was only eating about half of my dinner. And I wasn’t snacking as much as I used to.

During these months I lost maybe a couple of stone in weight, which could have been viewed as a blessing, because I’m an obese man. But it’s also a classic symptom of Hodgkins.

Warning Signs?

You might have thought that all of these different medical problems might have been an indication that something more serious was going on. And with the benefit of hindsight, it seems obvious to me that they were all connected with the Hodgkins.

However, all of these symptoms only came on quite slowly, and seemed at the time to be unrelated. And as such they were treated in isolation.

In addition, the Hodgkins Lymphoma can’t be diagnosed from standard medical tests such as taking bloods. The only definitive way to diagnose it is with a biopsy of a lymph node.

And so, it was only when the cancer spread to my lungs that it was eventually identified.

The cancer stereotype

“You don’t look like you’ve got cancer. You look great!”

I’ve lost count of the number of times I’ve heard these phrases from friends and acquaintances over the last six months. And of course, they all mean well, and so in response I invariably just smile and thank them.

The thing is, I don’t look like I have cancer. I certainly don’t look like a stereotypical cancer sufferer: one of those gaunt-looking, stick-thin, grey-faced, and bald-headed people.

But if my time dealing with cancer has taught me anything, then it has shown me that there is no such thing as a typical person with cancer. Each person is different, and the disease affects them all in different ways. And for the most part, you can’t tell they have cancer just by looking at them.

Not everyone loses their hair. Not everyone loses weight – in fact with all the steroids given during chemotherapy, it’s hard not to put on weight! And not everyone has visible outward signs that they have cancer. That’s the thing with cancer – apart from skin cancer, it’s all hidden away inside the body where it can’t be seen!

For me, the year or so before I was diagnosed with Hodgkins Lymphoma I looked terrible! My skin was a mess, I looked run-down and tired because I wasn’t sleeping properly, I was constantly coughing and out of breath, and I was losing weight.

But as soon as I started chemo, and the cancer cells started being removed from my system, all those symptoms went away. And so, since starting treatment, I now look fine – or at least an awful lot better than before I was diagnosed!

That’s not to say I’m not sick. I’m still dealing with the aftermath of the cancer being in my body, the toxic chemicals that were pumped into me during chemotherapy, and the radioactive rays zapped into me during radiotherapy. As someone once described it to me, every cell in my body has been affected by the cancer and subsequent treatment, and that’s not something you bounce back from quickly.

But yeah, to look at me I don’t look like I have cancer. Neither do a lot of other people who have cancer.

Life after cancer

Tomorrow morning I’m due to have my last Radiotherapy session, which will mark the end of my treatment for Hodgkins, and officially start the period of my life called “Life after cancer”.

I’ve not had any official notification from the medics that I’ve been ‘cured’ of the Hodgkins, but all the tests and scans during treatment seem to indicate that the cancer cells are gone. And I’m generally feeling well, so that’s good.

The big thing is that I don’t have any medical appointments in my calendar now, except for a follow-up chat with my oncologist in 3 months time.

I’ve finished all my treatment. There are no more toxic drugs to pump into me, and there are no more radioactive rays to zap into my chest. I don’t have to make regular trips across town to the hospital, and I don’t have to plan the rest of my life around my treatment.

The thing is, though, it’s all a bit scary… beginning this post-treatment phase.

During treatment I had something to focus on. I had the routine of hospital visits that defined my week. I had the side-effects of treatment to overcome. And I had the support network of doctors and nurses to call upon if I had worries or concerns.

But now, I’m pretty much on my own. The hospital have ‘done their thing’, and it’s up to me now to recover and get on with the rest of my life.

It should feel really good – finally being free of all the treatment – but it’s also quite disconcerting.

I’ve been off work since I was diagnosed, and have been advised to not consider going back until I’ve had my 3-month check-up with the consultant. So I have several months now with nothing much to do.

I’m not well enough to go to work, and I’m not sick enough to lie in bed all day. So what will I do with my days?

Should I take up a hobby? Do some volunteering?

At the moment I really haven’t got a clue what I’m going to do with all my free time. I haven’t thought this far ahead. So hopefully something will present itself in the coming days and weeks, because I really don’t want to spend the next three months watching daytime TV!

Neuropathic pain

Yesterday was day 10 of 15 of my Radiotherapy treatments. And so far, apart from some tiredness and lethargy, I seem to have not experienced any major side-effects.

However, the Chemotherapy, which finished about 8 weeks ago, is still taking its toll on my body.

For the last few weeks I’ve been suffering from increasing amounts of pain in my feet and legs. Throughout chemo I had experienced Peripheral Neuropathy (the pain/numbness/tingling in my fingers and toes), but this was something much worse.

When I stand or walk, I have sharp stabbing pain in the soles of my feet. And I also have dull throbbing pain in all my leg muscles. Another effect of this is that I’m now a bit unsteady on my feet, particularly when standing up from a chair or walking up or down the stairs.

The thing is, like a lot of men, I ignored the problem for quite a while until it got really bad. And it eventually took my wife telling me to go to the hospital for me to take action.

Anyway, so after my Radiotherapy appointment yesterday I went along to my hospital’s Oncology Triage department to get checked out.

They checked my bloods (which were fine) and I went through my symptoms with the oncology nurse and two different doctors. And they all determined that I was experiencing Neuropathic pain – caused by damage to my nervous system from the chemotherapy.

I said that I had tried taking Ibuprofen for the pain, but they said it was pretty useless in the case of Neuropathic pain – and instead prescribed a drug called Lyrica, which would block some of pain signals. Although they said it might take a couple of weeks for the drug to take proper effect.

In the mean time, I’m hobbling around the house. I can’t walk very fast, and simple actions like getting in and out of the car are much more difficult than they normally are.

Radiotherapy – the first few days

Today is day 3 of my radiotherapy treatment, and I’m due in hospital at 9.15 this morning to get zapped by the machine.

Each appointment lasts just 15 minutes, but the journey to and from hospital is about 30 minutes in the car each way. So I’m spending a lot more time travelling than receiving actual treatment!

As for the treatment, there’s not a lot to is really. After I get called in and they confirm who I am, I take my shirt off and lie down on a bed that’s similar to the ones used in scanners.

The radiologists then make sure I’m lying in the correct position – aligning the little tattoo dots on my torso with laser beams projected from the walls and ceiling.

Once I’m lined up correctly, they leave the room, and the machine takes over. It rotates around my body, stopping every so often to zap my body with radiation. Some goes in through my back, some from the side, and some from the front.

The treatment itself doesn’t hurt, but I’m told there are some side-effects that kick in about 7-10 days into treatment. These include: irritation to the skin where the radiation is administered, including a redness a bit like sunburn, and potential hair loss; a cough, because the treatment is targeted on my lung; and some tiredness/lethargy.

Radiotherapy Planning

We met with the Radiation Oncology Consultant last week, and he confirmed that he was recommending that I receive 3 weeks worth of radiotherapy.

I was given the option of refusing the radiotherapy, but he explained that my chances of beating the Hodgkins are improved by an additional few percent if I agree to the additional therapy. And the benefits of the treatment vastly outweigh any risks.

And so I agreed to go ahead with the Radiotherapy, starting on the 20th July.

Ahead of the treatment, I attended a planning session yesterday. It involved having a CT scan, which is used by the doctors to pinpoint exactly where in my body they are going to aim the radiation.

Also, in order to make sure they apply the radiotherapy in the right place every time I go in, they have tattooed my skin. I now have a freckle-sized black dot on my chest, and one each side of my torso under the arm.

Then when I go in for treatment, the dots will be aligned against lasers to ensure my body is in exactly the right position.

The therapy will then only last a few minutes each day, and there will be 15 treatments in total.