There's quite a significant side effect to all this that so far I have side-stepped in discussing on my blog, but I feel the time has come to talk about it as it is such an important issue - and that's fertility. As a vet student, fertility is something that is discussed a huge amount - from the importance in all farm animals (dairy cows and their poor fertility especially), to companion animals and the importance of neutering, to horses and their stud management! I have to say, therefore, how surprised I am that fertility is an issue that I feel has been minimally discussed throughout my treatment. Maybe this has been because my approach to my diagnosis has been with the aim of remission regardless of side effects, with minimal delays in getting there. However, I feel this may not just be something that I have experienced, and looking back on would have maybe appreciated more support with.
From day one, the nurses in TCT were very good at discussing side effects and concerns I had, but I never felt the need to speak to a specialist about fertility. Prior to starting my initial regimen I was informed that the chemo would increase my risk of being infertile only by a few percent above the national average. This didn't seem to phase me too much at the time. I did ask if options for freezing eggs, etc. were possible but was informed that this would delay my treatment by quite a long time so wasn't recommended. From my experiences at uni, and common sense, this made a lot of sense to me. At the end of the day, I want to be rid of this condition.
I then had to start my consolidation, which was a far more intense amount of chemo, and included drugs that affect fertility a great deal more (namely cyclophosphamide). So, again, I was informed that my risk of infertility would increase yet again. Delaying my treatment was still not an option, so seeking a fertility referral was still pointless.
However, now that having a stem cell transplant is being recommended, I was lucky enough to be offered a referral. Part of the stem cell transplant process involves radiation therapy, and depending on your age and the amount of radiation you receive significantly affects whether you will have permanent infertility afterwards or not. Now with my condition, full body radiation therapy at quite a high dose is pretty much guaranteed. I am under 25 years old, which goes in my favour, but regardless, the radiation therapy is likely to fry everything. As a result, my consultant very kindly referred me to a fertility clinic to discuss my options.
My experience at the clinic; however, wasn't the best. My amazing, ever-supportive boyfriend came with me, but the consultant's approach to the appointment left a bad impression that will stay with me. He went through my options, which I was already aware of to be fair, but essentially said that he wouldn't recommend I freeze embryos as it can get griefy if partners split up (his words actually were "if you run off", aimed at Phil). I can see his point, but equally he didn't ask how long Phil and I had been together (7 and a half years...), and even said that his opinion would be different if say, we'd been married four years and trying for kids for two already. I felt very much judged and that he'd assumed certain options 'weren't for me' because I was young (for a fertility clinic patient) and single. Freezing eggs was then regarded as my next best option, the process for which takes two weeks, but what with admin and paperwork would take nearer a month. The NHS would have to approve the funding for this but at least it is offered - to my amazement! Finally, there is also using donor eggs or adoption/fostering. I was informed at the appointment that using donor eggs costs about £6,000-7,000, but having done some research I think it's more like £10,000. But either way, there are options out there. So all is not lost!
Having spoken to my consultant at the Marsden, his main concern is obviously to keep me in remission and get me onto my stem cell transplant. And I have to agree with him, so although it would be great to have the opportunity to freeze eggs, my concern is potentially having complications from the process that would then cause me to delay chemo/transplant, which I wouldn't forgive myself for. Also, I know that my condition isn't supposed to be genetic, and chemo isn't supposed to affect eggs etc., but I just can't help there being a tiny amount of doubt in my mind... I mean, how often do we think things one minute and then a research paper disproves it later, and our main problem at the moment is that we don't actually know for certain either way.
On a different note! Since my last blog I have been able to catch up with a good few friends, which has been brilliant! I have also been readmitted for another Flag-IDA session, and after my chemo week was allowed home for four days whilst I waited for my counts to drop! :O So, I was very lucky to get the chance to meet up with the lovely (and now qualified!) Grace for lunch :) - was really nice to catch up properly! Can't wait to be able to go visit her and her new puppy in a couple of months! The good news today is that my counts have indeed dropped and I am back in for some R&R whilst they come back up again - so, if anyone is at a lose end, I am up for visitors ;) I have even brought my research project stuff back in with me for when I get bored, so do feel free to save me from myself!
Much love to you all xxx
My experience at the clinic; however, wasn't the best. My amazing, ever-supportive boyfriend came with me, but the consultant's approach to the appointment left a bad impression that will stay with me. He went through my options, which I was already aware of to be fair, but essentially said that he wouldn't recommend I freeze embryos as it can get griefy if partners split up (his words actually were "if you run off", aimed at Phil). I can see his point, but equally he didn't ask how long Phil and I had been together (7 and a half years...), and even said that his opinion would be different if say, we'd been married four years and trying for kids for two already. I felt very much judged and that he'd assumed certain options 'weren't for me' because I was young (for a fertility clinic patient) and single. Freezing eggs was then regarded as my next best option, the process for which takes two weeks, but what with admin and paperwork would take nearer a month. The NHS would have to approve the funding for this but at least it is offered - to my amazement! Finally, there is also using donor eggs or adoption/fostering. I was informed at the appointment that using donor eggs costs about £6,000-7,000, but having done some research I think it's more like £10,000. But either way, there are options out there. So all is not lost!
Having spoken to my consultant at the Marsden, his main concern is obviously to keep me in remission and get me onto my stem cell transplant. And I have to agree with him, so although it would be great to have the opportunity to freeze eggs, my concern is potentially having complications from the process that would then cause me to delay chemo/transplant, which I wouldn't forgive myself for. Also, I know that my condition isn't supposed to be genetic, and chemo isn't supposed to affect eggs etc., but I just can't help there being a tiny amount of doubt in my mind... I mean, how often do we think things one minute and then a research paper disproves it later, and our main problem at the moment is that we don't actually know for certain either way.
On a different note! Since my last blog I have been able to catch up with a good few friends, which has been brilliant! I have also been readmitted for another Flag-IDA session, and after my chemo week was allowed home for four days whilst I waited for my counts to drop! :O So, I was very lucky to get the chance to meet up with the lovely (and now qualified!) Grace for lunch :) - was really nice to catch up properly! Can't wait to be able to go visit her and her new puppy in a couple of months! The good news today is that my counts have indeed dropped and I am back in for some R&R whilst they come back up again - so, if anyone is at a lose end, I am up for visitors ;) I have even brought my research project stuff back in with me for when I get bored, so do feel free to save me from myself!
Much love to you all xxx
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