Back to work?

A couple of weeks ago I met with my oncologist for my post-treatment 3-month check-up.

The news was good, and he said that he was very happy with my progress, and didn’t want to see me for another 6 months. He also said that I was “most likely cured”, which was a pretty awesome thing to hear!

And so, after a small celebration, a got thinking about my future.

For so long now, I’ve been in the mindset of being a cancer patient. Even for the last few months as I’ve been recuperating after the treatment finished in the summer, I’ve still thought of myself as a cancer patient.

But I guess it’s now time to move on. I need – to put it plainly – to get on with the rest of my life!

And part of that is going back to work. It’s been almost 12 months since I first went off work sick. And my employer has been great, and has kept me on full salary during my absence, which at least helped alleviate any financial worries from my shoulders.

The complication, however, is that during the past year, my company has changed a lot. They merged with another company, and had a massive reorganisation. The result was that a lot of my friends were made redundant and now work elsewhere. And my role effectively disappeared overnight; such that I was facing possible redundancy as well!

Work were very good, and said that they would hold off on assessing if my role was redundant until I was ready to come back to work. And I must admit, it was tempting to stay off work as long as possible, to put off the inevitable.

However, I decided last week that I can’t stay in limbo for ever, and that I need to get back to work soon – if for no other reason than my mental health. After all, we all need a bit of mental stimulation!

I contacted the HR department and my manager, and told them I was ready to go back to work. And as a result I was called in for a meeting this morning.

The news is that, as suspected, my role in the company no longer exists. However, they do have a similar role vacant in a different department, and my manager has suggested that I would be an ideal candidate to fill it.

I haven’t got any specifics about the roll just yet, but HR are going to organise a meeting for me with the department manager to talk it through.

If I like the roll then I can take it. Or if not, I could take the redundancy and find a job elsewhere.

For the mean time, subject to what I hear about this now roll, I’m more inclined to stick with my current employer. For one thing, it’s less of a steep learning curve to stay in the same company. I’ll also know people, and they are more open to facilitating a phased return to work and a flexible working arrangements going forward.

Anyway, so I should know more next week. And who knows… a few days after that I may be back at work.

Affairs of the heart

A bit of a health scare over the last few days!

For the last week or so I had been trying to be more healthy and up my exercise levels. To this end, we decided to go for a walk in the Dublin hills last Friday. It involved a fairly sustained climb through woodland for about 25 minutes, before we reached the top to enjoy commanding views over the city.

On the way up I started to feel a bit of pain and tightness across the top of my chest. I was breathing hard, as it’s a fairly steep climb, so I didn’t think much about it.

But then I got the same pain when I was out cycling a few days later, and resolved to go the the GP, just to set my mind at rest. I thought maybe I had picked up a chest infection, and that the pain was from when I was breathing really hard from the exercise.

So on Tuesday morning I sat down with my GP – who I have a great affection for, as she’s been amazing during my Hodgkins Lymphoma treatment – and described my symptoms. She listened intently, listened to my chest, and checked the report from a recent chest x-ray that I had. And she told me that it was possible I had a chest infection, but the thing she was most worried about was my heart!

She wrote me a referral letter, and told me to go to the Emergency Department of my local hospital.

Accident & Emergency

To say that the A&E in my local hospital is a bit grim is a bit of an understatement. Having enjoyed the relative luxury of receiving my cancer care in a private hospital, I had was not used to the conditions in a public hospital.

The place was packed. As in, it was overcrowded. Seriously overcrowded. The last time I was in A&E I had spent 24 hours on a trolley in the corridor and thought that was bad. But this was worse. There were trolleys (with people on them) squeezed into every corner. It was like a game of Tetris, trying to slot people into any spare gap.

One young woman had some kind of dental infection that had spread to her throat. Her tonsils had swollen so much that they were now touching, and she couldn’t swallow anything – food or water – which made giving her any oral pain medication a problem. She looked terrible, but was clearly not bad enough to even warrant a trolley. All she got was a chair to sit in while she received IV steroids to deal with the swelling.

I was more lucky than most. As someone that presented with chest pains (albeit only under exertion) I was put in one of only a handful of private rooms that had heart monitors.

I had an ECG performed to check my heart, and I was also sent along to get a chest x-ray. And then I waited a few hours. Then I was transferred – still within A&E – to a Chest Pain assessment area. And that’s where I stayed overnight and for much of the next day.

I was connected up to a heart monitor that pinged and bleeped constantly, and I was laid on a trolley that had a mattress that was only about an inch thick and painful to lie on. It took 3 hours to get a blanket. And for dinner I was given a plain ham sandwich and a cup of tea.

I guess I only slept for a couple of hours that night. The Emergency Department deals with people coming and going 24 hours a day, so it’s far too noisy to sleep properly. And as such, it was almost with some relief when the lights went on at 6.00am and the nurse came in to do my morning obs.

Coronary Angiogram

First of all, they told me that I would have a cardiac stress tests – basically putting me on a treadmill to see how my heart performed under stress – but after a few hours they decided against it, as my recent tales of hill walking pretty-much told them that I got chest pain when I exercised.

So they decided to perform a coronary angiogram upon me. This involves inserting a tube into my artery as far as my heart. And then a special dye would be released, and they would follow the progress of the dye through the blood vessels of my heart in real-time using an x-ray machine.

They were checking if I had angina – a narrowing of the vessels that supply blood to the muscles of my heart. And if they found any problems, then they could insert stents (that would hold any narrowed blood vessels open) as part of the same procedure.

As it happens, I was given the all-clear. My heart was fine, and not the source of the symptoms I had been having. And after 32 hours in hospital I was going to be allowed to go home.

It was a great relief to me, my wife, and my family and friends that I was OK, and that I didn’t have a dicky ticker. But at the same time it didn’t get to the bottom of why I was experiencing pain in my chest. It seems I’ll have to go back to the GP for them to have another stab at it.

All Life Is Here

As much as I hated being in hospital, it was amazing to meet different people in the hospital, many of which were in a much worse state than me!

At one point, while I was in A&E, I was next to a rather famous Irish female singer, who I’ll not name to protect her privacy. But it was nice to be in esteemed company.

On the other side of me was Jean, a 79 year old widow, who lives on her own in the town of Arklow, about 70km south of Dublin. She arrived by ambulance with chest pains, was checked over, and told that she could go home. However, she has no family in Ireland – just a daughter living in England – and as such, no means to get home. She tried to get staff to phone some of her neighbours, to ask them to come and get her, but the staff seemed to show no interest in helping her.

We tried to help. As the lady had no mobile phone of her own, my wife offered to call one of the neighbours. She got through to the man, but he didn’t seem keen to want to drive to Dublin. He wanted the hospital to send her home in an ambulance.

She was a very chatty lady. Mad as a box of frogs, but with a heart of gold. She told us about the puppy she had just got, and also about how she helped a fellow pensioner that had been robbed. But by the time I was being moved to cardiac ward to get my angiogram, she had been sitting for several hours waiting for the staff to do something about her getting home.

In a way it’s no wonder that there is such a problem with overcrowding when a lady like that has to sit for hours waiting for someone to make a few phone calls for her, to find someone to come and collect her.

I can only hope something was eventually sorted for her, and she made it home. Not least because the puppy had been left alone in the house while she was in hospital.

Later, in the cardiac ward, there was a male patient (aged in his 50s or 60s) that propositioned a woman that had literally just returned to the ward after heart surgery. He shouted across the room that, now she had a fixed heart, they could have sex that night.

That was quite shocking, even if it was a bit of banter. But not as shocking as the man in the bed opposite me. He would mumble to himself, and it was hard to make out what he was saying. But when we spotted him trying to get out of bed, and nearly falling on the floor as a result, we realised he wanted to go to the toilet.

There were no staff around, as they were doing a handover between shifts, and so my wife went and got someone. A health care assistant came and talked to the man, and said she would fetch a bottle for him to pee into. And even though she was back within about a minute, in the mean time the man decided he couldn’t wait. He dropped his pyjama bottoms in front of everyone in the ward, and started peeing on the floor.

Understaffing

It was apparent everywhere I went that the public hospital was chronically understaffed. The old lady who couldn’t go home, because nobody had time to make a phone call. The gentleman who had to piss on the floor, because no staff had been around the ward in the last hour.

Everyone had to wait ages to get anything, just because the nursing staff were so busy. And unless you kept asking for something, you could well be forgotten about and left for hours, maybe even days!

In A&E overnight I was told that there was one registered nurse caring for 30 patients. That can’t be an acceptable or safe ratio! Some patients need a lot of attention, and as such others are often left to their own devices.

The actual nurses themselves are great, once you can grab their attention. But it’s clear they are overworked and stressed. And in A&E nurses may not finish till 10pm at night, and then be back at work at 7am the next day. That can’t be right either!

August Update

It’s been about 7 weeks since my last radiotherapy treatment, and every day I feel a little bit stronger, and a little more normal.

I’m not quite ready to get back to work yet. I’ve been advised to take a few months to let my body recover from the ill effects of the treatment before I consider returning to work.

I’m going to wait until after I see my consultant in mid October before I decide what to do.

In the meantime, I was back in the hospital yesterday for a chest x-ray. This was a planned appointment, booked by the consultant, so that he can have a look at my lungs when I see him in October.

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!