Fertility – it affects men too!

As men, we like to discuss crude topics and the modern prerequisite to masculinity includes bravado and confidence. When it comes to our personal health, however, we seem to clam up and find these things difficult to talk about.

My treatment started in quite an abrupt way, so I didn’t really have a lot of time to process my thoughts about fertility and the affect that the treatment would have on my future, but I’ve had a good 18 months to reflect now and thought I’d share my thoughts.

On my first day in hospital, I had been given my diagnosis, told that I would be spending Christmas locked in an isolation room hooked up to a drip, and that I probably wouldn’t be going back to work for 3-6 months. As my consultant was just about to leave me to my thoughts, she said… “oh one other thing, you didn’t want kids did you?” Though I understand that statistically most patients (being over 50) have been through that process or have made a decision not to by this point – as a relatively young 34 year old without children, it was (and still is) quite important to me that I could continue my legacy at some point in the not too distant future. And being told that there was an 80-90% chance that post-chemo the chances of fertility were limited, I wanted to know what my options were. In fact, given more time, I probably would have opted for a delay to chemo at the time.

In context – it was the 22nd of December, all of the key departments would soon be breaking up for Christmas and they were desperate to get me on to chemotherapy before it was too late. With a bit of pleading and ringing around by the clinical staff, they managed to arrange an appointment for me at the Birmingham Women’s hospital that afternoon as an ’emergency’ patient.

By this point I had a lot on my mind. I’m not the most comfortable in these situations at the best of times, but in addition to the pain and discomfort I was already feeling – added to the fact that the only person available to take me was my Mum (there were no hospital transport options due to the holiday), I started to feel rather uncomfortable about the whole situation.

Banking on myself

So within a few hours, I was hobbling into the Women’s hospital asking to bank some of my potential self for future use.

I spent some time filling in forms and answering complex philosophical and ethical questions regarding, for example, the event of my having children posthumously and whether they would be allowed to know their genetic origin. Next I was ushered into a room which was furnished and decorated with a strange clinical, seedy kitchen aesthetic with sparkly counters and a red faux-leather sofa. There was a red folder with wipe clean pages marked “adult material” hidden under the counter which judging by the depicted topiary and costumes hadn’t been updated since 1988. Not having participated in any related activity for several months, the challenge facing me seemed like a mountain to climb, but luckily I had 3G reception. With a bit of imagination and a pending sense of urgency and self-pity, I managed to fulfil my requirement.

The good news is that although I only had a usable count of 50%, the count was quite high so they were able to bank a sufficient quantity of the little fellows. I’m quite apprehensive about getting rechecked (incidentally this Friday) as the prospect of having a reduced usefulness in case of an extreme populational crisis weighs rather heavily. Having a chance of procreation in the non-traditional sense is at least comforting.

The Male Fertility Elephant

The NHS choices website has a ‘fertility check -health tool’ which is aimed at women.
The local place to get tested for me is the ‘women’s hospital’
I’ve been to two talks about fertility for cancer patients and in both cases, the presenter was surprised to see any let alone a small number of men and said “I’m afraid my slides are really aimed at women, but if you do have any questions, please ask and I’ll try and help.” I also spoke to a lady who had been lobbying the government about better choices for young people having to deal with fertility issues as a result of chemo and when I said that I understand as I went through a similar situation, she said “oh, I’d never really thought that it could affect men too!”

With this experience, I have wondered whether men are just too shy or proud to ask and hence there is a lack of information- creating a kind of self-perpetuating situation. Perhaps it is such a small issue that support for men doesn’t warrant the resource. For me, however, it seems like a big issue so I wanted to talk about the subject and express my concerns herein. I’m not sure this will do any good, or whether anyone will find this useful – but I’d love to hear about the experience of others and it would be great to identify and break the barriers to discussion regarding this and also similar male health topics.

 

 

 

 

 

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Day 95-105 recovery

I read an article yesterday that dark chocolate is good for you. And not in the traditional sense of moderation. The ‘Queen Mary University London’ study suggests that flavanols found in Dark chocolate can ward off heart disease and alzheimer’s when eaten in vast quantities, which is lucky as this Easter I have amassed enough to keep me going for a couple of months.

After my blood transfusion a week last Wednesday, I’ve spent the time relaxing lazily. I’m still fighting with dizziness and light headedness which can be frustratingly disorientating like being permanently drunk. My brain is also not up to scratch, I’m still struggling with easy and beginner settings on Soduko and Chess, but expect I’ll catch up with myself soon.

My tongue has appeared to have gone through a full regeneration after the initial roughness and blisters, it went black and then I had a spell of fresh baby tongue and it seems to be back to normal now. My sense of taste still brings up some surprises but I think it’s starting to return to normal.

Black Tongue
   Black Tongue
Baby Tongue
Baby Tongue

 

 

 

 

 

 

 

 

 

It’s difficult to see for sure, but there’s no change in my hair meaning I didn’t lose it all, but it hasn’t started growing back yet. I have, however, noticed new growth on my face. My eyelashes have started to grow back (although my last remaining long eyelash fell out today!) and my beard seems to have started with adolescent and interestingly blond initial stage growth. I might give it a couple of weeks before I shave as it will be barely visible and only having shaved once in 3 months, I’m probably out of practice.

Eyelashes
Eyelashes

So it’s been just over 100 days and I’m nearly there- I have two more outpatient infusions of Rituximab the first being on the 10th. I’m not sure how long they will last but I gather a couple of hours, so they shouldn’t affect me much.

Looking back through photos from the end of last year, I barely recognise myself, I’ve got used to the Nosferatu look I’m rocking. I also have about 3 stone of weight to re-gain to get back to normal. I know it’s going to be hard work, but I’m looking forward to my first jog round the lake!

20th Dec 2014
    20th Dec 2014
6th April 2015
6th April 2015

Day 79-85 Chemo

After my return home, I could feel my body recovering with the usual ache of my bones. Otherwise, I could feel myself getting back on track.

I decided to break from my usual computer gaming and have a go at painting. I only managed to put down the first background layer and spent a day testing colours but it felt like a long overdue release – a hobby that work had replaced in recent years and something I’m glad to re-visit.

Willing my body better seemed to help as I received a call on Thursday afternoon after another good set of blood results.

I’m on day 4 and roughly half way into my R-IVAC course. I’d forgotten the amount of chemicals it involves and the daily routine has almost merged into a dreamy autopilot. So far, the treatments have lasted well into the night and having regular interruptions has affected my sleeping pattern. Although trying to keep awake and mobile, I’ve spent the last couple of days catching up on sleep.

My appetite is also deteriorating again as the sickness kicks in. The nurse started me on some new anti-sickness tablets today which seems to have helped, but I still have a dizzy headache.

I’m glad to say that the end is in sight and though I appreciate the work of the nurses and doctors, there are a lot of things about this experience that I will not be reminiscing over.

I’m looking forward to getting back to my painting.

Day 66-78 recovery

It’s been over a week now since I left hospital, and apart from a few visits from friends, family and nurses, I’ve spent most of the time resting and playing.

After leaving the hospital, my body crashed and I spend the first I few days lying down and watching telly. With a spinning head and pains from my fingers and throughout my body, there wasn’t much more I could do other than sleep. Even watching the telly was uncomfortable at times and sleeping seemed to be a good way to hide the time away. The addition of diarrhoea was not a welcome entry to my symptom list.

On Tuesday (day 71) I had a brief meeting with the consultant who said that everything seemed to be going to plan. And that as soon as my blood had recovered I could go back into hospital for the final round. Being optimistic, I was hoping that it could start the following Monday (yesterday) and the doctor arranged for my blood results to be monitored in case my body bounced back quicker than she expected. Before I had time to call up and check my blood results yesterday afternoon, I had a call from the hospital asking me to come in ready to start treatment. Although I was not looking forward to another 10 days in hospital, a glimpse of the end put me in a good mood.

Just as I settle in to the routine of a 6am start, and hours of sitting around staring at the wall the doctor arrived. Apparently there had been a miscommunication of my results and although my neutrophil levels were up to 3.4 on Wednesday, they had dropped back to 0.2 this morning meaning that I’m back in neutropenia and that another onslaught of Chemo is dangerous at this point.

So having packed up my belongings again, I’m ready to return home to sit out my internal recovery.

I think this has been the biggest theme of my recovery so far, apart from the waiting, it seems that yo-yo-ing between home and hospital with barely hours to prepare and plan, let alone days has been quite a struggle for my mental stability. I desperately want to start planning the rest of my life, but I don’t even know where I’ll be in 3-5 days time let alone know how my body is going to respond at each stage.

unfortunately it seems that forecasting isn’t something that the NHS does very well.

On a lighter note

My new patterned finger nails seem to be coming on nicely. Luckily stripes coordinate well into my current wardrobe, although it would be better if they had more vibrant colours.

Stripy finger nails
Stripy finger nails

 

Day 54-57 Chemotherapy

I’ve been back on it for a few days, and am starting to lose track/energy; Rituximab, Vincristine, Doxorubicin, 3 days of Cyclophosphamide and yesterday I had another intrathecal injection of Cytarabine. Gladly the procedure of ‘very thin needle’ and ‘4 hours lying on my back’ seems to work ok as I have another booked in for tomorrow afternoon. I feel a little light headed, tired and my bones ache, but I feel a great deal better than I did during cycle one.

Bruised knuckles
Bruised knuckles

I can also feel the peripheral effects of my chemo coming through; my skin is dry, mouth claggy and my knuckles are turning brown. The heady dizziness is disorientating, and I’ve spent most of the last few days staring at newspaper supplements and the wall or mindlessly watching TV shows that probably wouldn’t have much impact if I was fully coherent. After tomorrow I have a few days break in order to prepare me for 24hr Methotrexate infusion. I didn’t enjoy this last time, so I’m planning to get up and about as much as possible and try and shake myself back to normality so that I have the best chance of getting through it.

Trying to sleep

The room is hot so I have the window slightly ajar. The alternative is the fan, but as sleek as it looks, it’s noisier than the dark outside. My head is still throbbing a little as I drag myself under the scratchy white sheets. I no longer have the energy to remove my pyjamas as I drop my head into the pillow. I hold the button slowly reclining the bed into its familiar prone position. My top crinkles beneath me which I know I’ll regret in the morning, but I can’t pull myself around too much without tangling the Hickman line in my chest. It has become a familiar appendage, hanging against my skin. I rarely notice it until I lie on the clamps which dig unforgivingly into my flesh. I reach to the call button and switch off the light.

Bed panel

Nuzzling my head into the corner between the pillow and the side panel, I stare at the warm LED glow shimmering across the mechanical grey stucco plastic. Finally I close my eyes. The darkness is noisy.

I can feel the throbbing of my joints as my blood pulses in syncopation around my body. The repetitive flick of the second hand on the wall is suddenly overwhelmed as the deep rumble of a car drives past the window. At the same time I hear a click as the gurgling rumble of the fridge kicks in; an appliance on its last legs. Clinks and rattles join in from outside as a trolley passes along the corridor. I concentrate on the colours behind my eyelids.

The disorientation of dark blotchy reds merge with purples and yellows. My mind lifts as I feel a cold chill through my brain. I can feel my head spinning. I feel weightless and can no longer orient myself against the sounds from outside. I can feel my whole body fixed in position spinning around the room. The dizziness makes me nauseous, but I let it pass as I imagine myself spinning and diving uncontrollably, bouncing off the walls. The exhilaration increases my pulse momentarily as I finally drift off to sleep.

Day 39-43 Recovery Period

Before I start this post, I need to offer a health warning to family and friends: I’m ok, there’s nothing to worry about, I just had a bit of an emotional blip; but I think it’s important to be honest.

Day 39 first day home

I was looking forward to being home for 2 reasons: firstly a chance to relax again and regress back to childhood playing computer games while being waited on by Liz. Secondly there was a family gathering planned on the Saturday in aid of my Aunty’s birthday and it would be a convenient excuse to catch up with a bunch of relatives who I hadn’t seen for a while.

My blood counts, as noted previously, were on their way down, so the district nurse had been booked to arrive daily to administer the Lenograstim injection. On Friday the nurse arrived about 10 minutes before my Dad who kindly offered to make a cup of tea and finish the washing up. When she left, he foolishly asked if there was anything else he could do. Several journeys to the loft later it was time for him to go so I felt a little guilty that we hadn’t had time to catch up, but very grateful for the help.

otherwise the day was fairly un-eventful apart from completing a level of Halo!

The Party

Saturday was mostly spent sleeping and relaxing in preparation, I was feeling fairly well in myself but a little weak so took it carefully walking to and from the car and sloped off for a bit of a sleep on arrival. The party was good, nicely laid out with a good spread of food, music which the aunties could dance to and I managed to catch up with most of my relatives. My mum’s cousin came over with his wife who had been through a similar experience 4 years previous. They offered support and said that there’s a light at the end of the tunnel, a sentiment which was appreciated.

I generally follow a more scientific than theological ideology, but the words “I have been praying for you” spoken by a couple of relatives was also greatly appreciated, especially knowing that it was both genuine and heartfelt.

Even though I spent the time sitting down, I realised how tired I was when I stood up. To those who didn’t know me, I must have seemed like a drunken old man stumbling to bed early, but I felt a sense of achievement all the same.

The Panic

During Sunday, I became aware that I had taken a couple of risks. I like to think of myself as a ‘pragma-realist’ I like to form decisions and opinions when I have all the information, although I understand that sometimes ‘all’ the information is un-available or difficult to obtain.

The risks therefore were as follows:

1: I hadn’t had a blood test since Thursday and the next was due Monday (I was aware of this on discharge, but decided not to press the point in case of jeopardising my release) this meant it was difficult to know how low my blood levels were.

2: I went to a party full of people in a public place. (I had discussed this with the doctor who said this might be ok, but again hadn’t been explicit about it with the nurse or doctors on the day of discharge in case it would jeopardise my chances of being able to go)

In the afternoon, I had started to feel quite weak and feeble so went to bed early. As soon as I started to drift off, my mind started wondering. Recalling a comment the doctor had made on Thursday; “I can feel the lump here, it’s much smaller than before,” began the start of my panic. Until this point, I had thought it had gone completely and suddenly could feel it again myself. On top of this, my skin was feeling really cold to the touch and I was sweating which is usually a late symptom and should have stopped by now. To top this off and noting that I’ve experienced every type, size, shape and colour of fluid and solid discharge during my treatment I had uncomfortable bowel passing which was quite bloody and I had strange blotches (like red freckles) appearing on my skin. Adding all these together I started for the first time to think of the ‘what ifs.’

Red Freckles
Red Freckles

The hardest thing to console myself over was not all the problems I’ve had or things I should have done, it was all the things I hadn’t yet done. As much as I’m comfortable with the experiences I’ve had so far and am confident that I have learned a great deal during my relatively short life, I feel I have a lot more to achieve and am capable of offering more. Obviously no-one knows what’s round the corner, but I would be deeply unhappy if I had to leave without having made a positive contribution to society, even in the form of offspring. With all these spinning thoughts and imagined conversations with friends, family and colleagues flashing through my mind I started to well up. As a pragmatic bloke the first tear dropping down my cheek is always a little embarrassing, but it happens; I’m not sure why we feel the need to instantly quell it, but perhaps that’s our way of coping. I managed to stop the tears before waking Liz, but felt a little refreshed when I woke up. Perhaps it was just a case of the Sunday blues.

Return to hospital

On Monday the nurse came round to take blood tests and flush my line. I got up late as I was extremely tired, so I asked Liz to bring her (and all the kit) upstairs. I spent most of the day asleep although managed to make it downstairs in the afternoon. Mum had the day off work so cooked lunch for me and Liz which was nice. I watched a bit of telly and sloped back off to bed. Nervous of the bleeding I decided To avoid going to the toilet before bed.

Tuesday morning, I had to go to the toilet. By this time, based on the discomfort and a bit of help from the NHS website, I was pretty sure it was heamorrhoids. I decided to call the hospital to see the best course of action. The nurse said that my blood counts weren’t back yet but that I should book in with the GP to get them checked out. She prescribed me cream over the phone, I was tempted to offer Skype but decided against it! A couple of hours later at about 16:30 I had a call from the hospital saying we need you to come in via A&E the blood results were as follows.

Heamoglobin – 76

White blood count – 0.2

Platelets – 10

Neutrophils – 0.0

Platelet Transfusion
Platelet Transfusion

I am now back in hospital receiving a bag of platelets (low count explaining the heamorrhoids, which the doctor here has actually said is an internal tear or fissure and not piles after all) I have a further 2 bags of blood to follow and the nurses were surprised I managed to get away without further or worse symptoms! I’m hoping they’ll send me home once I’ve had the transfusion, but recent experience tells me that’s anyone’s guess!

Day 34-36 Chemotherapy

I’m on day 6 of phase 2 chemo which is also day 36 of my treatment. I’m due to have another intrathecal injection today which, having just got over the headache from last time, I’m not looking forward to.  I am, however now unplugged from the pumps and therefore feel a familiar sense of relief.

Day 34 & 35 treatment

The treatment for these past 2 days has followed the same course, frustratingly, due to the length of the courses (and that for some inexplicable reason, they can’t start till midday) they have been running through the night. This means 2 things:

  1. Not much sleep (lots of interruptions)
  2. Regular toilet breaks (due to the volume of fluid absorbed)

The chemicals for both days were as follows:

etoposide – 120mg in 500ml of fluid across a 1 hour course

ifosfamide (+Mesna) – 2900 (+800)mg in 1000ml over 1 hour

Mesna – 2400mg in 1000ml over 12 hours

Day 36 treatment

then finally today I’ll have Methotrexate applied intrathecally (into my spinal fluid) – as far as I’m aware, that’s it for a few days.

My neutrophils will start to drop over the next couple of days (neutropenia is usually expected between day 7-10) and to counteract this, I’ll be given injections of a drug called lenograstim which helps to stimulate the bone marrow (where blood cells are made)

I’m also being give another injection each day which helps to thin the blood and prevent blood clots. It’s supposed to go into my stomach, but it hurts when they put it there so I’ve been asking the nurses to administer into my arm (apparently into the subcutaneous tissue under my skin).

How do I feel?

honestly, I’ve had worse hangovers but I feel fairly grotty. A little disorientated and my brain is feeling lazy- I can’t beat my ipad at chess any more! I sometimes get the feeling of sickness but it goes; I think the anti sickness drugs are working.

Green maple leaf
Green maple leaf

If I get up in the night I get quite dizzy and my blood is taking its time to get back into my brain. I nearly fainted the other night and have therefore have been classed as a falling risk hence the award of green maple leaf. I have been advised to sit on the edge of the bed for a few minutes before getting up, this seems to help although doesn’t half make me feel like an old man.

liz said it’s good practice- thinning hair, unsteady balance, aching joints, unreliable bowels… Can’t wait to be young again!