"It must be nice for things to be back to normal?"
A little sentence, no harm meant. I get asked it a lot these days by well-wishers. I get the sentiment, I really do. Any yes, externally, things are "back to normal". I'm back at work and really enjoying it. My life is now full once more of juggling school appointments, shopping, washing and all the other things that every mother and wife up and down the country does. My hair is growing back nicely and I'm finally able to get straighteners through it again (just). The endless hospital appointments have fallen away somewhat.
Except only a fellow cancer warrior can understand that once the scourge that is cancer has touched your life, things will never go BACK to the way they were before. That life has gone for all of us and whether we mourn it or not (actually it's pretty pointless to as it doesn't change anything), life before cancer is a carefree, wonderfully naive place that once it is taken away can never be reclaimed. My body will never look the same again, I have limited movement on one side and I take what feels like my own body weight of tablets in the hope that it will keep me going a bit longer. Not to mention the tiredness that still persists. It's a bit like the first time you found out that your parents had sex at least once in their lives (for now I'm choosing to ignore that people don't need to have sex to make babies any more as they still did when I was conceived), except far worse. That innocence can never be re-found. It's very difficult to explain to someone who hasn't been there, but actually I think it is the fear that lives with us and also the mental challenges that being in this position holds. Every little minor ache, cough, cold, twinge, lump, bump brings fear. It's like opening an old wound that will never truly heal, but just sits there oozing a little every so often. If we are well, then recurrence is the fear we all live with. Irrational or otherwise, it's understandable. Whilst it's easy for everyone around us to assume that everything has gone back to normal, I think for most of my cancer friends I can safely say that it won't EVER. Period.
Rant over.
I've been busy ticking a few things off the bucket list recently and it feels pretty good! Meet Lola and Crystal (I kid you not). They joined family Chaff on Saturday last week. My nephew and Briony picked them and chose their names. They've settled in pretty well and have already started laying eggs. I've always wanted chickens and it was one of the "must haves" on the list for the new house as we weren't allowed them at the old house. I'm not honestly sure how long they will last, but for now the novelty prevails. Briony already loves them and can often be heard out in the garden having "chicken time" as she calls it! We've had to chicken proof some of the garden with chicken wire so that they can roam free during the day, but apart from that it has all been fairly easy!
Also today, we spent the afternoon at Blenheim Palace. I've always wanted to go but have never quite made it, which is a travesty considering that we live so close. We've converted our daily tickets to annual tickets so will be going back a fair bit over the next year or so! I can't claim credit for any of the pictures as Stephen took them - he did a rather good job!
I'm on new drugs and have been on them for a month now. These are the drugs that I campaigned for a while for as they aren't widely available yet in the UK. My consultant if you remember didn't really want me to have them because of the main side effect of diarrhoea, which with my Coeliac disease doesn't make for a good combination. Through what was probably a war of attrition I managed to get put on them. It's not for the faint-hearted. I take 6 tablets a day (in addition to the 3 I was already taking and the 3 monthly injection in my stomach that hurts like hell and the 6 monthly infusion for my bones) and then have to take another 9 a day in the first week to counter the side-effects. This has gradually reduced down but I do feel like I might rattle. I've also been seeing the consultant every 2 weeks as he wants to keep a close eye on me. I'm pleased to report that it has been a case of so far, so good. I'm a little more tired than usual (known side effect) and also the anti-diarrhoeal tablets have been far too efficient in stopping any trace of diarrhoea. Enough said.
I got my consultant a bottle of whisky to say thank you for his support in putting me on these drugs. It was quite a lot of paperwork for him and logistically it hasn't been easy to put this in place either. He was really quite touched when I presented it to him at one of my appointments. He responded with "I don't often get anything from my patients". For a moment, a thought flashed through my head but luckily I engaged my brain just quickly enough to not say it. I almost said "Is that because not many of your patients make it?" I wasn't sure he would see the funny side of it!
We continue to make slow but steady process on the preparations for the house renovations. We're about to go for pre-planning, after a long debate on whether we should or not. It's all very exciting and we can't wait until the work finally starts......
Except only a fellow cancer warrior can understand that once the scourge that is cancer has touched your life, things will never go BACK to the way they were before. That life has gone for all of us and whether we mourn it or not (actually it's pretty pointless to as it doesn't change anything), life before cancer is a carefree, wonderfully naive place that once it is taken away can never be reclaimed. My body will never look the same again, I have limited movement on one side and I take what feels like my own body weight of tablets in the hope that it will keep me going a bit longer. Not to mention the tiredness that still persists. It's a bit like the first time you found out that your parents had sex at least once in their lives (for now I'm choosing to ignore that people don't need to have sex to make babies any more as they still did when I was conceived), except far worse. That innocence can never be re-found. It's very difficult to explain to someone who hasn't been there, but actually I think it is the fear that lives with us and also the mental challenges that being in this position holds. Every little minor ache, cough, cold, twinge, lump, bump brings fear. It's like opening an old wound that will never truly heal, but just sits there oozing a little every so often. If we are well, then recurrence is the fear we all live with. Irrational or otherwise, it's understandable. Whilst it's easy for everyone around us to assume that everything has gone back to normal, I think for most of my cancer friends I can safely say that it won't EVER. Period.
Rant over.
I've been busy ticking a few things off the bucket list recently and it feels pretty good! Meet Lola and Crystal (I kid you not). They joined family Chaff on Saturday last week. My nephew and Briony picked them and chose their names. They've settled in pretty well and have already started laying eggs. I've always wanted chickens and it was one of the "must haves" on the list for the new house as we weren't allowed them at the old house. I'm not honestly sure how long they will last, but for now the novelty prevails. Briony already loves them and can often be heard out in the garden having "chicken time" as she calls it! We've had to chicken proof some of the garden with chicken wire so that they can roam free during the day, but apart from that it has all been fairly easy!
I'm on new drugs and have been on them for a month now. These are the drugs that I campaigned for a while for as they aren't widely available yet in the UK. My consultant if you remember didn't really want me to have them because of the main side effect of diarrhoea, which with my Coeliac disease doesn't make for a good combination. Through what was probably a war of attrition I managed to get put on them. It's not for the faint-hearted. I take 6 tablets a day (in addition to the 3 I was already taking and the 3 monthly injection in my stomach that hurts like hell and the 6 monthly infusion for my bones) and then have to take another 9 a day in the first week to counter the side-effects. This has gradually reduced down but I do feel like I might rattle. I've also been seeing the consultant every 2 weeks as he wants to keep a close eye on me. I'm pleased to report that it has been a case of so far, so good. I'm a little more tired than usual (known side effect) and also the anti-diarrhoeal tablets have been far too efficient in stopping any trace of diarrhoea. Enough said.
I got my consultant a bottle of whisky to say thank you for his support in putting me on these drugs. It was quite a lot of paperwork for him and logistically it hasn't been easy to put this in place either. He was really quite touched when I presented it to him at one of my appointments. He responded with "I don't often get anything from my patients". For a moment, a thought flashed through my head but luckily I engaged my brain just quickly enough to not say it. I almost said "Is that because not many of your patients make it?" I wasn't sure he would see the funny side of it!
We continue to make slow but steady process on the preparations for the house renovations. We're about to go for pre-planning, after a long debate on whether we should or not. It's all very exciting and we can't wait until the work finally starts......
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