Tag Archives: Fertility

The Urine Sample

Every month, I have the humiliation of doing a pregnancy test before I can be prescribed my Revlimid. The humiliation is on two counts. The first and hardest is because we all know that I, in all probability will not be able to have the babies the natural way, if any way at all. I am all too aware of this. The second count as also on a personal level, and that is as time goes on with my treatment with it’s stupid side effects and expanding jelly belly, the physical act required to get pregnant falls further and further away from my grasp.

Every 28 days, when I attempt to pee into a cup, I am reminded of these things. No matter how many smiles I am greeted by when the form is signed to confirm that I am not pregnant, I cannot help but feel hard done by. I was so much prettier in 2011 and I’m pretty sure I would make an awesome mother. Just ask the dog.

Given the emotions it stirs inside me? I have to mentally prepare myself for the question I get once a month, because apparently the negative urine sample is not enough. ‘Is there any chance you can be pregnant?‘ No there bloody is not. I am a essentially a barren leper who cannot tie up her shoelaces. The one time there was a remote chance of a ‘no’, Mamma Jones was with me, so I lost the satisfaction of the truth and still said ‘no’ to save us all the embarrassment.

The thing with a myeloma clinic, granted I have only experienced the one, but I am sure it is an issue that all childbearing age myeloma sufferers on Revlimid or Thalidomide experience in all the clinics across the land, is that due to the age of your average sufferer, the act of doing the pregnancy test is never seamless.

The test itself can often be overlooked until after the appointment, and even if it is not overlooked, I still have to get the jar, do my business and chase down a Medical Trained Person in front of other patients to give my sample to. To me, it just highlights my pain. And the question I ask you is this, who really wants to see my pee? Probably not the five or six people waiting impatiently for their appointment.

To cope with, or dare I say, to avoid the harder thoughts associated with doing the pregnancy test, I have decided to make something of an entertainment from it. The entertainment generally requires me being proactive, when it comes to serving up my pee. Even if I am in private with a Medically Trained Person, I will make a joke out of having to do it. Humour as a defence mechanism? No way. Not me.

Two months ago, I had to interrupt a Medically Trained Person talking to another patient to ask for the pregnancy test, and for some unknown reason, the look on the fellow patient’s face was a picture. I wanted to shout at him, that yes, young females can get myeloma and yes, we also have a less than 5% chance of getting pregnant and yes, I am painfully reminded of this every month. I did not shout at him however, I just took great pleasure in seeing the embarrassment on the Medically Trained Person’s face. She does not know yet that I do not embarrass easily. I did not get any humour from this month’s test, so I am using this to remiss about the good times.

Completing the sample is a challenge in itself. Like the Crystal Maze or darts. I am not one who can pee on command, so I have to make sure I drink a sufficient amount of fluids well before my arrival at the hospital (for your information, I discovered recently that being well hydrated helps people to enter my veins also), and then, I have to hold in the liquids until the appropriate time. I have started to blame this act for my weight, something that is also captured every 28 days (the nursing assistant felt the need 15 minutes ago to point at my weight last month after I was weighed today so I was aware of the further gain). You may not be aware of this, but the menopause can weaken one’s bladder, so there was one occasional three months ago where I had to find somebody quick snappish to release the pressure.

And now for the biggest challenge, something that has become a game, successfully and neatly, peeing into the jar. I have never been able to do this. Not myeloma never, but in life never. I got close to it last month, but all I way say about this month’s attempt is thank goodness they have bucket loads of antibacterial hand wash.

This week is special, because not only do I get to confront my fertility demons today, on a Thursday, I also had to do it on Tuesday morning prior to a MRI scan. Well, I did not have to do a sample, I was just asked the question.

I do understand that it is a legal requirement, but sometimes, I would like people to realise that it is not just a tick box exercise to me. And, let’s face up, there are so many other things to wind myself up over on clinic day. So much.

On a lighter note, here is my pee. I can confirm that I am not pregnant.

IMG_0916.JPG

EJB x

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My Most Emotive Subject

I am as good at meeting deadlines with my blog as I am currently in my work. With that in mind, let me tell you about my Valentines Day. For those unromantic types out there, the date in question was 14 February.

In stark contrast to previous years in which I have been a single only marginally dreading the day when couples show off their lust disguised as love in a sea of red because of my own traditions, I wholeheartedly dreaded the 14 February 2014. I did not want it to happen. There was no tradition, but that was not getting me down. The 14 February was the day I had to see the Person Medically Trained in Women’s Bits. To you, this means that the 14 February was the day I got to sit down six months after my transplant to find out just what it did to my lady bits. My most emotive subject.

I know, and have known for a long time, what My Myeloma has done to my fairytale dream of living to be a granny with a house full of bric-a-brac with photos of my children and their families scattered about for all my guests to see. That is a sentence that I cannot say out loud. And thus, as the day drew closer to the appointment, my dread grew along with a fear of the words I know to be true, but did not want to be confirmed. You. Are. Infertile.

The scariest part of the appointment anxiety, as this is my most emotive subject, is that I did not know what my reaction to the news would be. I had already poorly attempted not to cry in front of the Person Medically Trained in Women’s Bits on two previous occasions, so for this appointment, I thought that mass hysteria was an inevitability. Also, the doctor is something of a cold fish, which does not assist in her delivery of bad news. So, I lined up a Maurice to attend my appointment with me, which eliminated some of my concerns in the lead up to Valentine’s Day. I also strategically arranged a counselling session on the Monday after the Friday before in order to help me deal with the aftermath.

I should be honest, the appointment was mostly arranged by the lovely haematology people because of the side effects I was experiencing as a result of my menopause and infertility, which in turn, are a result of the chemotherapy I had on 17 July. For those who are not preoccupied with my life, the side effects included horrible hot flushes, a lack of flow and other things connected to moisture. Mostly the hot flushes. Hot flushes are vile. They are also embarrassing, particularly if you are obese and trying not to adhere to a stereotype.

It took four months for the department to process my referral, despite me having already seen them twice. That is a lot of sweat. I had a month after I received the appointment date to dwell and image various scenarios in which the result was the same. A fortnight or so prior to my appointment, given the efficient administrative process, I phoned the department to ask whether they required me to have any blood tests to look at my hormone levels or whatever else they look at when they are looking at what I wanted them to look at. A nurse, I presume she was a nurse, called me back and vaguely said that if they were required, they would have been requested. I objected to this, but hey ho, I just wanted to make the most of the appointment and rip off the rather large plaster that constantly itched.

The appointment arrived and, unsurprisingly, it was no where near as bad as I had imagined. Maurice was there to hold my hand of course, which was invaluable. I described my symptoms and the Person Trained in Women’s Bits confirmed that I was going through the menopause. Some symptoms I had been suffering from that I had attributed to myeloma, were apparently, also menopausal, including a weaker bladder and aching joints in the morning. I thought these things were connected to age more generally, but no, in women, it is menopause. I am sure there must be other reasons.

For this so called menopause, I was prescribed HRT in the form of patches, which I wear everyday on my buttocks. Said patches slowly release oestrogen, which will then do a whole host of things to my body, including reintroduce a period. This news came five days after I cleared out my tampon drawer, so I was annoyed.

Then there was the hard stuff. I have less than a 5% chance of conceiving. I believe this is said to protect a Medically Trained Person’s reputation in the event of a miracle, but really it means, you are not producing any eggs. I heard her words and I did not cry. My strength during the appointment astounded me, and I suspect that that came from having somebody with me who did not mind me talking about my vaginal dryness. I even summoned the strength to ask a question Big Sister had armed me with. Can I carry a child?

The short answer is yes. I can carry somebody else’s bun in my oven. There is currently no damage to my womb. A slight flicker of hope.

The long answer is more complex. It goes something like this. Yes, I can theoretically carry a child, although I am not sure what consideration would need to be given to my lesions and whether they would veto any plans to knock me up. I would also have to lose about a third of my body weight in order to get any form of IVF; this is probably no bad thing in general and would help me in one of the points below. My womb is fine now and has not been damaged by my treatment, but if I require an allograft before I can do the above, the radiotherapy would most likely destroy any hope I have of breeding. On a more practical level, I am single and I am not getting any younger. I would have to find a man who accepts my standing and decides that he would like to spend the rest of my life with me and I have had no luck so far before the hurdle of myeloma. How would we pay for it? And then, the question that terrifies me the most, if the medicine is available to me, would it even be fair to bring a child into this world when Wikipedia tells me that the probability of me living to it’s tenth birthday is slim?

And thus my dreams hover over a flushing toilet.

For this, for all of this, I hate myeloma. I may have held myself together in that appointment, but I grieve for what I have lost, I cry for knowing at some point, I may have to make a moral judgement and for the possibility that I may never be afforded the opportunity to make that judgement.

The appointment itself was anticlimactic. Like I said at the start, I knew what was going to be said, whether I wanted to hear it or not, and I think I had managed to shed my tears in private.

It has been five weeks since my appointment and in that time, I have gone through a pack of my patches. I also got frustrated when I asked for a re-prescription from my General Practitioner and they insisted that I visit them to be thoroughly assessed because the person who specialises in all things womb, had been remiss, according to them, to have not fondled my breasts. Needless to say, I found this a ridiculous waste of time and a drain on valuable NHS resources. Of course, I failed to say this to the GP. In the six weeks, my hot flushes have lessened, my nausea has increased, 50% of the time I can sleep through the night without nature calling and yesterday, I was reacquainted with my flow. It was rather novel.

As for the other stuff, I try not to think about it at all, but living in the world, one sees babies, if they do not see them, they hear about them and on these occasions, all I can do is swallow.

EJB x

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The Littlest Things

Yesterday, I decided it was high time for me to tidy my drawers, because I Housemate did his, and I felt like even more of a sloth than usual. I would like to confirm that I am lying in my bed as I type and I can confirm that
I am glad that I took the time and energy to do this. As I was doing the deed however, my emotions were mixed.

My drawers are a set of six, which sit to the lefthand side of my bed and house the things that do not need to be on show. Catch my drift? There is a jewellery drawer, a make up drawer, one and a half drawers of mementos, a draw of toiletries and other things one can purchase from a chemist and the remaining drawers are (were) drawers of crap. The whole clean up accounted for one dustbin bag full of crap.

As, I opened the third drawer down yesterday evening, I found something, or should I say, somethings, that I have not required for a long time and consequently forgotten were in existence despite them coming in a range of sizes and brands occupying the majority of the drawer. It then dawned on me, that I would not require them ever again, and as I thought about what not needing them ever again meant, a teeny tiny tear fell down my face. And then a few more followed.

In this strange remission world, especially in the one where I try and remain positive, I avoid thinking about the things that have changed since I was diagnosed and the things I have lost since I was diagnosed. Sometimes unfortunately, even when you are doing the most practical of things, they just creep up on you, at least they do on me anyway, and when that happens to me, all I can do is give myself a minute or five (ten).

I gave myself five minutes to think that I will never again be caught short when out and have to ask a female friend or worse, a female colleague,
an embarrassing question. I gave myself five minutes to remember what it was like for my body to act like clockwork every 29 days. I gave myself five minutes to curse the hot flushes. And I gave myself five minutes, because all of the above means that I cannot have babies.

I then cursed myeloma.

Once composed, I stared into the drawer some more before I scooped up the contents, which included two half full boxes of the same thing, and put them in my black bag. I then left my room and was told about some of the benefits of not having to stock up in Boots every month.

Other things in the drawers that also contributed to a wee bit of insomnia and yearning for a simpler time last night, included;
• Hair bobbles (I thought I had dispossessed of them all)
• 2 x paddle hair brushes containing long brown hairs, which I felt the need to finger
• Prophylactics
• Old photographs

On the plus side, I was reminded that myeloma has significantly increased the quality my remaining toiletries and thus, I am unlikely to need to purchase any moisturiser any time soon (shower gel and bubble bath on the other hand…).

EJB

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Babies 🍼

Yesterday, I had my long awaited appointment with UCH’s Reproduction Unit. Prior to the appointment, I did not expect to get any firm outcomes or absolutes; this turned out to be the case. As I said to the doctors, it is something that I expect now from in all aspects of my treatment. No absolutes and no guarantees.

First off, I was once again was impressed with the service provided by UCH. My appointment was multidisciplinary, with four doctors attending. One from the Haematology Department to explain the impact of my treatment and three from the Reproduction Unit. Actually, I think two of them were there for training, but at least it made me feel like I was having a serious appointment rather than one to placate the 28 year old single girl suffering from cancer.

I would just like to confirm that I did not fall asleep in the waiting area prior to my appointment in a Velcade Moment (yesterday was predominantly made up of Velcade induced sleep, hence me blogging now and not yesterday).

At this juncture, I have all but reconciled myself to the fact that I will be infertile once my treatment has concluded. I like to think that this is realistic rather than pessimistic. There are too many variables and the odds are firmly stacked against me and my ovaries.

Treatment vs. Babies

My only option at the moment is to continue with my treatment. As much as I want to safeguard my childbearing future and bank those eggs, my health is paramount and there is no time to freeze my eggs. No time. There is not an anticipated break in my treatment either, which would allow the Medically Trained People to collect them at a later date. The annoying thing, and actually I am glad I did not know this until yesterday, is that my current treatment is unlikely to affect my fertility. The chemotherapy drug I am on does not pose a great risk. If they change my chemotherapy? Well, then that may or may not have a negative impact. The principal of my trial, if successful, would buy me time to fertilise my eggs, providing I had a complete response and did not require a stem cell transplant at the end of it. Realistically, this is not going to happen either, and I will require a transplant. If I come off the trial next week, I will definitely require a transplant.

I am told there are no firm statistics, but given the amount of chemotherapy and radiotherapy required for a transplant, either your own or a donor, the chances of being fertile at the end of it is 5-10%. For the donor stem cell, there statistically more chance of me dying during the procedure than me being able to have biological children after it. That is one scary statistic.

But my health is paramount. It is a horrible situation to be in, but I want to live. That is my goal and if I succeed, I can find a way to have babies afterwards. Do you want to give me one? I promise not to make it obese.

It is not all doomed. Again, there is no guarantee that this will work, but the Medically Trained People can give me a drug that temporarily shuts down my ovaries, with the hope that it fools the chemotherapy into not attacking them. The odds of this working are slim and there are side effects with the drug, but as I explained to the doctors, I am willing to try anything, if it gives me a glimmer of hope that my eggs will be saved. I have yet to Google the drug, but the side effects are essentially those experienced by ladies going through the menopause. Hot flushes and a dry vagina. A dry, tattooed vagina. This I can cope with. Apart from my tattoo, it’s only temporary. The drug also thins your bones, but I have Myeloma, so….

I am not sure when I will start receiving this injection, but I will ensure that my haematology doctors liaise with the reproduction doctors about any change in my treatment. More drugs, but I can see what this one can achieve, and I think it is worth it. I want children that much.

I had to ask the question whether I would physically able to carry a foetus full term, and again, they don’t know. Nobody knows what state my bones will be in the end of this. I just have to sit tight and wait. Tick, tock, tick, tock, your biological clock.

Not being able to have children is an emotional subject for me. You may ask if it is so important, why I had not cracked on and popped a few out already. Well, I hadn’t. It was not how my life was structured and I did not anticipate getting cancer, let alone a cancer that is such a bastard. I thought I had loads of time. Single ladies, go out and freeze your eggs now! It’ll be like having a pension. A little bit of extra security.

As it is such an emotive issue for me, I could feel the tears come during the appointment. I fiddled with my bag and took notes, but then the headache started and my voice started to break… So what did I do? I started to hysterically laugh. Hysterically laugh about my sister. My sister was considering doing a sponsored parachute jump, to which I said she could not. There is too much riding on her. Her stem cell, her eggs, her. The haemolotologist agreed. I think they may have thought I was a little mad. The laughing was ridiculous and was accompanied by me saying on repeat “we’ll just wait and see”. I think I held it together quite nicely. I left the appointment room, walked down the corridor, stepped into the lift and burst out crying. I then left the building, walked to the main reception, booked my travel, purchased a packet of prawn cocktail crisps and cried some more. I cried because I have to wait and nobody can tell me what is going to happen. But then, I knew this already. Then Middlesborough texted, at just the right time, and she reminded me that my health is paramount and I realised that it is. At the moment, surviving is all important and anything on top of that is a bonus.

And thus, I will sit tight and wait. Tick, tock. Tick, tock.

EJBx

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