this is now!

so the link above is a video my friend sam made about our story for church. There is also an extended interview there at kings church.eu/rachel (oh yeah i have a page!! wohoo!)

i have been meaning to blog for a while but wasn’t sure if anyone would want to read it anymore or if anyone would find it helpful, but seeing as most people in ebo know our story pretty well by now i thought i’d just post for the greater cancer community out there in the hope that someone identifying with the situation may find it helpful. so firstly, and i have NO idea how these things work so pj, correct me if need be, to help you find media search engines etc, if you are searching for any of these things you are in the right place!

“pregnancy after lymphoma”

“pregnancy after stem cell bone marrow transplant BEAM autograft SCT BMT”

“after SCT ”

that should do it. as i said, no idea how these things work so feel free to call me out as a total IT dumbass if need be!

the first thing id like to put out there is that even though life post cancer is ALWAYS a blessing, an unexpected treat, a bonus, the legacy of the dreaded C does tend to hang over you, a bit like a sword ready to drop and mess everything up at any time. I’m not saying i live in constant fear of it coming back but i still have moments where i’ll be poorly in a way that makes me think of hodgkins and treatment, or an itch or a cough, and i’m right back there in a second. the brain has a horrible habit of keeping old wiring in place and much as i would love to say i haven’t looked back, i frequently do, and often in a way i don’t want to.

that being said, there is value in reflection because it makes us all the more grateful for what we have. at the risk of sounding a bit schmaltzy, it really is taking the time to be thankful for the little things (as well as the big things of course) that puts me back on track and gets things in perspective. things like waking up in your own bed, fresh air, a walk in the woods, evening strolls by the sea, making noah laugh, seeing wilf smile, finding jo amusing, family meals, treasured friends, birthdays and christmasses (ok so I’m getting in to big things territory here) but staying grounded whichever way you can is an essential mechanism to survive survival. which can in itself be quite the challenge at times. my body just isn’t what it was in terms of strength and resilience – my pregnancy with wilf was far from rosy despite being miraculous, and i developed pre ecplampsia as a secondary complication of having had haematological disease. he has had trouble feeding and i was devastated to have to switch to bottle feeding rather than breastfeeding as i did with noah. i still take a while to recover from bugs and struggle with tiredness when sleep deprived. i do know that I’ve come a long way from the days of needing to nap every day just to be able to function, and up until maternity leave was working part time and walking to and from work and the school run. so if you’re in recovery now and wondering if you will ever be able to do normal things again, don’t worry, it takes time, but you’ll get there. 🙂

anyway this has got more rambly than i meant it to be. what i wanted to do was a bit of a then and now comparison. i think the best way to do it with words is to read back any of my old blogs where life was pretty dark, and compare it with now and its a pretty stark contrast! another way i like to reflect is with pictures. thankfully there aren’t too manyphotos of me then, but here are a few to jog the memory..IMG_1058 IMG_0260

so am looking pretty crap there..

so heres now.

Wilf and Entourage - 187OLYMPUS DIGITAL CAMERA.

Wilf and Entourage - 036OLYMPUS DIGITAL CAMERA

so with all the words, thoughts, feelings and experiences i can try and articulate in this blog, sometimes all you need are pictures.

big love to whoever is out there 🙂

Posted in Uncategorized | 2 Comments

Ta Daaaa!

Hello! It’s been ages, I know. I am writing this post primarily for any hodgers/non hedgers/leukaemia bros and sisters/chemo endurers who may be googling any of the following:

“pregnancy after stem cell transplant” “getting pregnant after SCT” “getting pregnant after chemo” and so on and so on. these are all things I have been looking up trying to find someone out there who may be able to reassure me by writing about their experiences!

so it’s with massive relief and disbelief that i can finally write that kind of post, because i am 12 and half weeks pregnant! i have thought through lots of amusing and interesting ways to word it for your entertainment, but i’m afraid they all escaped my mind when i came to write this!

so, the facts! i never had any eggs frozen prior to chemo because my disease was so advanced i had no time. before transplant i was told that i would have an early menopause and be infertile after the treatment. at the time i was fine with this because i just wanted to be alive for the family i had already! in the months and years that passed it became clear that i wasn’t fully having a menopause, but went on HRT to normalise hormone levels, which, incidentally, was amazing and i would recommend it to anyone feeling hormonally all over the place after chemo. it was just a massively life enhancing thing as i felt so much better and was finally rid of the hot flushes! around october i saw dr sahu and asked if trying to get pregnant was something to avoid because of potentially bringing on a relapse risk as pregnancy is an immune suppressant, and he said that it was fine to go ahead as most people relapse in the first year post transplant, and i will be 3 years summer 2014. we decided to wait until 2014 so put things on hold until after christmas (and ate and drank our festive fill as a result!)

in january i decided to get fit so ate clean for 6 weeks and did a 15 minute high intensity interval circuit every night (check out leahferreira.com, awesome trainer) and lost weight and felt much fitter as a result. then in february, several friends at church approached me and asked to pray for my fertility. i said yeah sure as i had been told by the obs/gynae cons at kings that i only had a 5-10% chance of conceiving naturally because of the chemo zapping my poor old ovaries.

i had started to come to terms with the fact that i probably wasn’t going to have another baby, and if i was, it’d probably take a long time and maybe we would even have to consider something like IVF or egg donation, or look into adoption. whatever the outcome, we were sure of one thing: we have more than enough in terms of our marriage, and our son, and what God has blessed us with is so much more than anyone could hope for. this would just be a welcome bonus. i wanted to pray for a baby but also for peace in my heart, whatever the outcome would be.

then, at the end of feb, we found out i was pregnant! surprised doesn’t really convey our emotions enough! we had an early scare at the start which meant we had to have a scan at 6 weeks, but it was strangely reassuring to see that little blinking dot even though we were unsure and worried about what was happening.

in the past 7 weeks i have been feeling rough as. some nausea, vomiting, fatigue, and a little wooziness and lightheadedness thrown in there for good measure. I have been falling asleep at about 830 most nights, and have basically had to be a bit of a hermit – a terrible friend, wife, sister, youth leader, mum, everything!! so, if you have had to put up with flakiness and me bailing on you, i apologise, and hope to make it up to you when i’m better!

i am on an upward curve now i think, and even though all those symptoms are there, they seem a little milder, for which i am very grateful, because they make you feel an awful lot like chemo does, which sends you on something of an unhealthy thought spiral…

as things are, the haematologists were happy and don’t want to see me any more frequently. i have to be under an obstetrician, but thats ok, and will have to have the baby in hastings instead of ebo, but again thats fine – i used to work there and know they have a bakery there which makes amazing sarnies, so i’m set. the lovely docs at kings are yet to be informed, but hopefully they’ll be as relaxed and groovy as dr sahu was. dr sahu, who is LEAVING by the way. i know. sad times. we had a hug and a tear. special.

so this has been a much longer post than intended! i hope it can encourage someone out there who may be wondering the same things i was 6 months ago.

its a miracle, we are so happy, and so grateful.

love xxx

Posted in Uncategorized | 8 Comments

hello www!

i titled this post as a big shout out to all the hodgers/non hodgers/friends and family of hodgers out there who i am becoming increasingly aware of as they have commented on this site! this totally blows me away and i’m so humbled that you guys would even read my posts!! i know that it always helps me to read about people elsewhere who have gone through similar things to me, so i hope this is a helpful resource! if theres ever anything you read that makes you feel worried or troubled, please feel free to totally disregard and ignore it!! (i have banned myself from reading hodgkins forums as they just freak me out!!)

so, here i am, november is upon us, noah will soon be 4! lots has changed, lots hasn’t! i have seen both dr’s at kings college hospital and dr sahu at EDGH, so i thought perhaps it was time for a quick update…

first i went up to kings, and was very happy to be able to meet up with my lovely pal and her baby for lunch beforehand! i had a chest x ray and bloods (with the expected need for a second person to have a go as my veins remain rubbish..), then came the hour long wait for dr marcus as the clinic is always running late, only to find i wasn’t seeing him, and instead saw another dr, who may or may not have been a registrar/consultant! she was a she though, which usually means you can ask some more questions and tend to get a bit more of an informative session! i asked about hormones and hot flushes (which have been a -raging and doing all kinds of silly things!). she said that may not be the dreaded menopause, it may just be hormones levelling out post transplant. she emphasised that what had been done to me was not exactly minor, and may have far reaching effects on the rest of me. she again said that future babies were not out of the question, but best to hang on for a few years to make sure i get through the next chunk of time cancer free.. the chest x ray was clear, the bloods were as expected, and that was it! i came away not feeling particularly reassured, but not particularly worried either. it all seemed like a bit of a long and slightly pointless exercise!! but hey ho thats follow ups i guess!

then there was the sahu appointment this week, again bloods followed by a long wait, but i didn’t mind as had to finish my book for book club! (house of silk by anthony horowitz – the new sherlock holmes book. i do recommend!) when i saw him i asked about some kind of test/measure/indicator that would reassure me that i was ok and disease free. the conversation went more or less thus:

me “how about a CT?”

him “what would that show us? it would inevitably show shadows…”

me “…where i had disease before..”

him “exactly. so how would we know if they were active? a PET scan? well they can be unreliable because you get a lit up picture for inflammation, to be able to definitively say if you have active disease, you’d need a biopsy. do you really want a biopsy just to reassure you…?

me “no not really..”

him “there is at present, no agreed protocol on how best to follow up patients like you. there are differences all over the world about routine follow up scanning or not. bloodwork would not necessarily change in the early stages of disease, it’s more about symptom awareness, so losing weight suddenly, night sweats, and most importantly being aware of any lumps and bumps.”

me “hmmmm”.

again, i leave not feeling particularly reassured, wondering what the point is of these appointments if nothing really happens, and we don’t really have anything to test or check!

life continues to fly along, thankfully i have not been quite so infection ridden as i was expecting for this time of year, i have been trying to avoid ill people, and have managed with only one lot of antibiotics so far! hurrah! i still feel tired a lot, there are days when i feel i can push through and get an early night but there are other days where i just have to stop and lie down for a snooze. it’s pretty frustrating, as now i’m starting to think i’d like to be working, but the NHS aren’t really in a position to recruit, and if they were, i’m pretty sure they wouldn’t be able to accommodate someone who may only manage 3 hours of work a day! so private work may be the way to go, but that has complications of its own. there are some days when noah is at nursery, and i’m feeling well, that i pine for my working days, but on the other hand there are days when i’m totally shattered and achieve nothing! so who knows. it would anger me to think that cancer had taken away my ability to work in my profession as well as all the other stuff it wrecked. but the main thing is, i ultimately beat it, and am still here. so there. and i have to remember the times during my illness where i said i didn’t care if i did physio again, that i knew that career is not important, it’s just a bit of a waste to not use my skills and not do a job that i enjoyed (well, most of the time!!)

the insecurity and the what ifs and the eeeks never totally leave, but i’m trying to work through it and do some good reading and talking and praying and staying as active as possible – the dog has a way of keeping me on my toes as she seems on a mission to be as destructive and defiant as possible on occasion! we have started thinking about school for noah next year – crazy as it seems he is still so little! but he is really looking forward to going, and i’m sure he’ll have a blast. jo is fine, and is growing a pretty grim moustache in support of movember. eeewwwwwww.

so thats us! i hope this helps if you are someone looking for an example of someone who is done with treatment, or if you’re someone who knows me and just keeping in touch. if it was all totally dull, i apologise, and recommend you watch this to snap you out of your boredom:

lots of love to you all out there!! and if you’re in treatment, keep on keeping on.

xxx

Posted in Uncategorized | 4 Comments

happy birthday to me!!

no dear readers, i am not going mad (well not this time anyway!) i realise my actual birthday is in january, but of course today it is my 1 year rebirthday! ie 1 year since my transplant! the rebirthday is a term used by hodgers/non hodgers/leukaemia peeps etc to refer to the day you got your transplant. personally i find it a little odd to refer to it that way but as always i am happy to jump aboard the bandwagon and claim the day too!

and it is with mixed feelings that i contemplate the significance of this. of course, my primary emotion is hurrah! thankfulness that i made it! that i have today, and my husband and my son and everyone i love. thankfulness that this didn’t end badly, and that i’m here! that i fought the fight with my loved ones holding me up all the way. of course i’m grateful and overwhelmed that it’s been a year and i’m still here! and it’s over as far as i know!

but the flip side is that you remember that it even happened at all. reading back my blogs from a year ago took me straight back there in an instant. the fact that i was so poorly a year ago today i wasn’t even able to blog. i remember how scary and painful and awful it all was. there are still so many questions in my mind like why me? but hey, when it comes to cancer, why anybody?! and why not me?! my faith has been pushed to it’s absolute limits through this but thankfully God hung on to me even though i let go of him, and i think i’m rebuilding an even stronger house than before. (a metaphorical house of course. i lack DIY skills and construction experience…) our beautiful marriage has held fast despite also being pushed, and jo has remained amazing despite having to deal with a whole load of issues no one should have to face. he has done so with wonderful grace and humility and forgiven me more times than i can name. the fact that noah is such a happy little boy is all down to how well he was parented by jo through my illness and i just adore him for that. but i feel so sad that it even happened to him, to them, to us. and my heart flies out there to anyone going through it all right now. its just so hard.

but hey life goes on for us lucky ones, and what a year it has been! theres been haircuts, holidays, new babies (our friends of course, not us!), book clubs, puppies, family times, body balance, swimming lessons, puppy class, wood burner, new garden…. ah the list goes on! numerous blessings and precious times with those we love and cherish. there are days when i just feel peaceful and content with whats around me and i feel overwhelmed with thankfulness that i’m in that moment, alive and pretty well! of course i still struggle lots too – the fatigue hits me like a bus on a daily basis, i suddenly get the urge to close my eyes and be alone and horizontal for half an hour. which is fine if i’m home and don’t have noah but it can be tricky in other circumstances. dr sahu says i can expect this for at least 2 years post transplant, but it’s a pain. i can’t do more than one busy day in a row, and often make the mistake of trying to do too much, because i want to be normal and don’t want to let the cancer get the better of me, but the reality is this results in a very tired and stroppy frustrated me, which is not fun for jo, and then i have to crash out the next day. when will i learn eh?!! my mind is a bit more under control, but i, like everyone who has been through this kind of thing, still have the dark moment and the worries seem overwhelming. these are getting fewer, but i’m still yet to have a day when i don’t think about it. and any ache, twinge,cough,fever, it just takes me right back there again. another achievement i’ve made in this area is coming off the citalopram. it was really hard but i did it! hurrah!

in terms of us, well the puppy is settled in well and is a handful but just so fun. she is part of the family and we really love her. i’m taking her to puppy class every saturday and she is doing great (despite the odd mad moment where she just tears around in a state of constant leaning in to the turn, ears a-flapping!) jo is great, and does so well in the constant state of readjustment according to my energy levels and emotional state! noah is still loving nursery and is doing well at swimming lessons and tennis/games sessions at the park. he has discovered a passion for lego and has been very creative and lovely, and sits for ages at the table doing games and stories and making things. he had his first overnight sleepover at his best friend dylans house, and as far as i know he had a blast!

we are very excited to be bridesmaiding and ushing at our friends wedding in august, and i’m looking forward to the hen do in the south of france, just outside saint tropez dahling!! time for a fake tan i think as sun is still a no no for me! i’m very gradually dipping in to physio again, and have one child i am seeing privately which is going really well. i think i’ll just see what work i can pick up by word of mouth rather than push it too much at this point, but it’s exciting to know i still like physio! and i can still do it!

i promised myself during my illness never to stress about things that don’t matter, never to hold a grudge, never to take things for granted ever again and to be outside in creation every day. well i think i’ve failed on every single one of those things. but having a significant date like today reminds you to put things back in to perpective . to remember that our time here is fleeting, and that when we look back on it all a clean house and empty washing basket are not the achievements that mean the most. i really pray that God will continue to teach me to be more humble, and to constantly remember how good i’ve got it. because i really do have it good.

thank you again for reading such a huge blog, and thank you for your continued support, prayers and vibes. mwah.

xxx

Posted in Uncategorized | 7 Comments

Progress!

bonjour readers, it’s been a long old while!

i am still here, still alive, and still cancer free! I haven’t really had any worrying symptoms so have been fairly calm re cancer things, just slightly mental about other things, but i think thats just me…!

In the past few weeks we have had plenty of activity at chez pavey. our garden has gone from being a garage dominated unusable space to a lush garage free lawn and planting and generally hanging out being groovy space. i will now attempt to put in some pictures to demonstrate what has occurred!

 so this is it minus the lovely blue paint on the gate and shed, and minus the lovely plants we have put in on the right! we are really pleased, as basically it was just garage everywhere you see grass!

also, we have chosen the puppy! she is half labrador, half springer spaniel. Her mum is a working gun dog and her dad is a bomb detection dog, so with any luck she may have half a brain and be trainable. but you never know. fear not I am planning on outting in a lot of work with training and have been doing research and reading in preparation. she will be a most welcome addition to the family and we are pretty excited. and yes i know she will chew and wee and poo. kinda goes with the territory and won’t last forever!!

another attempt at inserting a picture:

pretty cute eh?!!

we are still working on names, any ideas most welcome! she is very cheeky and busy, so sweet and girly things probably just won’t be her!!

without looking back i can’t remember if i have even blogged since our holiday!! i must have, but i feel i’m on a roll with the photos, so here are a few more!! ok now i am unable to type under the pictures!! so i’ll carry on here and end with pics i guess! jo is well, he went on a baking course and made the most amazing breads – see photo, so we are enjoying that!! noah is great, passed his first dentist appointment with flying colours, had his pre school jabs with no fuss whatsoever and started swimming by himself with armbands. he is amazing. anyway, until next time xxx

Posted in Uncategorized | 3 Comments

ah bonjour dr. marcus, we meet again..

today i went to see dr m up at kings, just a routine appointment that was meant to happen a while back but was delayed by the shingles and then our holiday (more about that later)

i had my PET scan a while back which as we know showed up a bit of an infected picture, so dr m wanted me to have a chest xray and bloods today, and have another PET in may just to check on things. so i went up to kings on the train, with a lovely coffee and a copy of the marvellous book by my good friend andrew wilson:

http://www.amazon.co.uk/God-Then-What-Andrew-Wilson/dp/1844745694/ref=sr_1_1?ie=UTF8&qid=1334170099&sr=8-1

and was quite enjoying the peace and niceness of the journey until noisy people and the need for a wee disrupted it somewhat! i was feeling a bit jittery about it all – a bit unsettled. i think this is always the case but at the time you just think “oh dear. a sense of foreboding approaches… dun dun dunnnnn”. but anyways i got to kings and had lunch with the beautiful pregnant being that is sarah floyd, then went for my bloods (3 yes 3 attempts and 2 nurses. ouch!! seriously guys, just tighten the flippin tourniquet!!) and x ray. dad then came and met me to join me for the appt and be generally on my team. he is ace.

dr m (running 45 mins late. ugh) was fine, he said that as far as he could see my x ray looked ok. he had a prod of my neck at my request, as i have had some aching in my neck and arm and was getting some of the usual appointment induced paranoia, and said it seemed fine. he didn’t have my blood results back yet. he said i got the shingles because i have been forgetting to take my antivirals, and that if i don’t start remembering to take them i’ll just get it again. i consider myself told on that one.

then he asked about lady things. boys i’d skip this paragraph perhaps. just in case you don’t i’ll try and scrimp on the details.. i said that lady things seemed to have resumed, and he then said to be careful as i could theoretically get pregnant. i said that i assumed that this was a bad idea because of previous discussions re relapse risk in pregnancy etc, and he said that this wasn’t necessarily the case, and that pregnancy may not pose a significant risk if its after 2 years remission, as the first 2 years are the time when the likelihood of relapse is highest… interesting…. so it may not be off the table completely as i had thought… he also said that because of the chest radiation i would need to start having mammograms in 5 years time and maybe an MRI of my boobies because of breast cancer risk. lady bit over.

i asked about my seemingly constant state of being on antibiotics for upper respiratory tract infections, and he said this was because of the BCNU drug in my BEAM chemo cocktail and the radio doing damage to the lungs rather than an immune system issue as i had thought. he said that i may have to go on cycles of antibiotics in the winter which i don’t like the sound of because they just aren’t great to be on all the time. i also need to hve my thyroid checked by dr sahu when i see him in the summer as the radio can zap that too. ooh but he said i didn’t have to have the PET scan in may anymore too! what joy! he wants to see me again in october. lovely jubbly.

so there you go! lots of info in a relatively short appointment! i feel ok about it, i just hate how going for appointments and scans and things just makes me feel like i’m in the cancer loop again, and thats just not where i want to be right now. i guess it’s reassuring to be talking about problems i may have as a result of treatment rather than problems i have because of cancer, so thats something. i just can’t help feeling like i’d rather not be talking about problems at all! but i am, so thats that!

in other news we went on our first post cancer holiday last week, a milestone! we went for a posh break at the watergate bay hotel in cornwall and it was ace. highly recommended in every way! bit pricey but we decided we deserved it! noah had a great time and we revelled in all cornwall had to offer in the time we had there. love it. we now move on to the next life enhancing project which is out garden. until today it basically comprised of a huge light obscuring garage and some decking, but now, low and behold, the garage is gone!!! the outside space looks huge! there is still lots to do but it’s very exciting, we’re going to have a garden! with grass and everything!! now all we need is a pooch and the plan is complete… i inadvertently almost ended up going on a rather long road trip to see a puppy this week, having only meant to make preliminary enquiries! we decided to say woah there on that one though and actually spend some more time on research and reading, and maybe wait til the garden is done before embarking on another plan!!

thank you as always for caring, for reading and for praying. i still feel so desperately vulnerable and scared sometimes, and would really appreciate prayers to make it stay gone. please please please Lord let it stay gone!!

xxx

Posted in Uncategorized | 4 Comments

shingles it up oh yeah

so those of you who are not on facebook, the rumours are true, i have shingles. for shizzle. they are coming from around C5 which basically means neck and a bit of chest. it started last week and the rash has come up lots today so i called pevensey ward yesterday who said to pop in today to be eyeballed and (presumably) do a quick blood test then send me home knowing what bug i had… so off i popped to pevensey, nice and early as instructed (to avoid infecting anyone). got seen by some very nice doctors who said indeed, tis shingles. oh and i have a chest infection too. woopie! they then suggested admitting me to the ward for a few days which (as you can imagine) was met with a flurry of “no please don’t admit me, i’ll do anything, please let me out, please please” etc etc. i think they were a little shocked as they were new docs to me and weren’t familiar with my particular brand of loony…

negotiations between us took place, and it was settled that i would be allowed home (eureka!) as long as i came in 3 times a day for infusions of IV aciclovir (an anti viral) for an hour at a time. can do. done. yup. as long as i don’t have to stay there!

as it was i ended up waiting around all morning for drugs and chest x ray and blah blah blah and between that and the IV’s was basically there all day. hopefully tomorrow we will get the hang of it. it’s only for 3 days anyhow and i can cope with that.

the other news is that obviously because of having the lurgy, i can’t really go to kings on wednesday to see dr marcus and get my PET results. so i rang chirpy lymphoma nurse lady and left a message for her to ring me, and fax my PET report to dr sahu instead. she called me back and gave me my results on the phone! they were as follows, (drumroll?)

basically clear everywhere i have had cancer. nothin there. nada. zilch. BUT don’t pop your champagne corks just yet as there is a fly in the ointment of PET reporting… my left tonsil lit up. significant? probably not. worrying? of course. come on readers you know me by now, of course there was much stressing. good news is it is probably reactive due to a horrendous cold i had at the time which (surprise surprise) made my left tonsil sore. also the fact that my shingles is left sided and could have been brewing may further rule out scary things and offer very reasonable, non worrying explanations. nice nursey lady urged me not to worry. she said she would show dr M the report tomorrow and call me back. she reassured me that the fact there was infection and symptoms in the tonsil at that time was, well, reassuring! she did say that i may have to do the PET again when i am disease free to get a better idea. another lunch with mum then?!

so really its pretty good news. one would think that if the nasty was back then it would pop up in other more obvious places. i hope. so there we go. jo is pretty happy about a good result. i am more on the fence. i need something more finite for closure of this scan-worry-results cycle.

for now, its spots, blisters, sore neck and feeling as rough as a badgers arse. still its nice to have a “normal” illness!!

xxx

Posted in Uncategorized | 5 Comments