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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12 Months on.

Thursday 5th May was a statistical milestone for me as it is 12 months since my final Chemo session. I have recently found statistics a little difficult to identify with, as statistically speaking I should not have been ill in the first place.

During the early days of my recovery I spent most of my energy trying to get back to my previous routine. In hindsight, I perhaps pushed back a little too hard and fast as I am now struggling with a less than perfect immune system and the fatigue did get the better of me on a number of occasions. I am glad to say, however, that my health is otherwise pretty good and I have been working, partying and excercising at a high rate and in equal measure.

A New Normal

Getting back to normal seemed like an obvious objective from a hospital bed, but it since has felt like an unnecessary and overwhelming challenge. For me, I can live a similar life as I previously had, although I must also be mindful that as with any trauma, it affects us in ways beyond the phyisical and visible scars. I am now facing up to the fact that along with the impact of 6 months treatment, both my outlook and objectives have quite significantly changed.

Life is a series of hurdles and challenges and while this was quite a high hurdle, it has put some of my previous hurdles in perspective.

Continuing with the analogy, I now know that each time we come to a hurdle we can do three things: pause and panic, divert and change course or just jump over it. I feel that the way we deal with our challenges is less important as long as we reflect on the things that we also gain: An experience from which we can learn and improve, a sense of satisfaction from the achievement (whether it was a disaster averted or a problem solved), and finally the lens of perspective through which we can compare future problems.

4 weddings and a festival.

In an attempt to put the last 12 months in perspective a lot has happened and I am finding it difficult to recall. Whether it has been a conscious effort on my part and of those around me, I am not sure, but this year has been a rather ridiculous series of events and though life is never simple, even without my illness I think it would be difficult for this not to have had an impact on me.

Since May 2015, I’ve been to 5 stag do’s (in 5 different countries) and 6 weddings (in 3 different countries) I was best man at one which was at the same time in a different country to another which I had to miss. I’ve been to Glastonbury festival, several carnivals, beer festivals and nightclubs. My 2 younger brothers both announced they are to become fathers, I went back to work, was made redundant, became self employed and single. I have 3 more weddings to attend in the next few months, 2 more stag do’s and funeral.

I have met a lot of great people, made new friends, learned a lot and had some of the worse hangovers of my life (insignificant in the context of my chemo experience). This year has definitely been the craziest so far, but as we never know what is round the corner, my intention is to continue taking each day as it comes and working hard to make sure that I enjoy and make use of the time I have, and to convert challenges into experiences to share.

Summer Recovery

Apart from a couple of minor (probably an understatement but another story for another time) immune system related mishaps, I started my recovery in style. Although she eventually agreed, it took a bit of persuading to get my consultant to ‘allow’ me to go to Glastonbury Festival. The walking and long days were fun but hard work and I had to recruit my mates and Dad to help me with carrying my bags, but I’m glad I went. We in fact had an awesome time!

Glastonbury Festival
Glastonbury Festival

It has since become the beginning of a pretty ridiculous summer.

Ordinarily, I’m the type of person who maximises my life by minimising resting time. Having spent the last six months in the opposite state, life has bounced back in a big way. In fact I think one could argue I’m going a little too far.

Today has seen a couple of firsts: My first proper haircut, I bought my first bike (since I left school, with the intention to regain my fitness) and I’m currently writing this on a flight to Prague to partake in the first of two consecutive stag weekends. I have formally been offered a get out card by the stag if it ‘gets too much’ but I’m going to give it a good go, English style (the stag is Czech though so it’ll probably be a little less than the usual English affair- here’s hoping any way!)!

Flight to Prague
Flight to Prague

Most people have been surprised when I tell them I’m back to work full time, but I enjoy my job and it keeps my brain active, so it was an easier transition than it could have been.

I spent a lot of time thinking about my priorities during my time off and I still don’t know the ‘answer’ to the meaning of life, but I realised that we might as well enjoy the time we have and make the most of life. My diary is pretty much full from now until October, and though I’m spending a lot of that time catching up on missed partying, I’m conscious that I want to make a positive contribution to society so my next goal is to find an outlet for that ambition.

I’m back in the world of packaging now, so this blog will probably start to be filled with packaging related activities from now, but for those who have an interest in my illness or health related posts, I’ll probably reorganise those thoughts into a seperate or more coherent site or set of pages.

In the meantime, please feel free to get in touch if you have any ideas, thoughts or questions.

Robin,

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 86-94 Chemotherapy

As people ask how I am, I usually respond with ‘I feel fine.’ Although an automatic response to a casual question, it’s something I sometimes have to think hard about. I recently realised that I’m no longer sure what ‘fine’ feels like. With a dizzy disorientation, light headedness, lethargy, forgetfulness, tingling extremities and a dull haze around everything I do, I still feel much better than recently although I suppose health and state of mind are all relative.

Day 86-87 Chemotherapy

Although it has since turned out not to be the case, as far as I had expected, these were my last days on the ward- I had previously planned a card and some chocolates which with the help of Liz were hidden away in my belongings to pass to the nurses on my departure.

I had a final dose of Chemotherapy (Etoposide, ifosfamide and Mesna) on day 86 (Wednesday) Which was gruelling and annoying, but dampened by the thought of going home. The Thursday (day 87) was rounded off with a final intrathecal (IT) injection of methotrexate which was performed quickly and relatively painlessly (although not a procedure I’ll be missing)

On a few of the ‘IT’ injections administered I’ve experienced the pain or shocking numbness which can occur when the needle comes close to a nerve ending. It happened again this time although strangely the pain felt like someone pinched my leg which startled me. Otherwise the procedure went fairly smoothly.

Homeward Bound

I’m fairly used to the procedure now, and was careful not to jeopardise my release by giving anyone any excuse for delay (the organised registrar helpfully rescheduled his morning to start the procedure early). Even so, I was not ready for collection until around 17:30 and although we didn’t get home till 19:00, I was happy to have the option of refusing my final hospital dinner!

Still aching from the procedure I spent Friday and most of the weekend resting.

It was Liz’s birthday on Sunday and although her gift from me is an IOU, her family came up and I think she was more than happy to see them. I realised I hadn’t seen or spoke to them directly since Christmas, so it was good to catch up and experience a little friendly normality.

Days 91-94 Recovery

On Monday, it was back to the routine of the district nurse arriving to perform blood tests. I was a little apprehensive as I had decided not to take my Lenograstim over the weekend after a discussion with the nurse who agreed with my logic. The results came in fairly quickly and I had a call from the ward asking how I felt. I felt light headed and knew I was neutropenic but my neutrophils had dropped to 0.0 which is well below the normal safety threshold. I managed to negotiate with her as my platelets were still 28 (low but within danger levels provided I don’t cut myself) and I knew I had the back up of the injections.

My next test was Wednesday (yesterday) the call came in again, and this time they weren’t as lenient. My neutrophils had risen to 0.2 but my platelets were now 7 which normally would lead to random bleeding but Luckily my skin integrity has seemed to hold together fairly well apart from a few random pin pricks and bruising across my skin.

Petechiae pin pricks
‘Petechiae’ pin pricks

Petechiae is the technical name for the pin pricks which are caused as blood vessels burst due to the shortness of platelets (also technically called ‘thrombocytes’ and ‘thrombocytopenia’ is the condition).

so I’m sat in hospital after another uncomfortably interrupted night waiting for a transfusion of blood and platelets. If the internal politics go in my favour I can go home shortly after although it’s difficult to argue and negotiate with doctors for whom safety is their primary concern.

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