Category: Fertility

Breast cancer lesson 172: Christmas miracles do exist!

On By Jackie ScullyIn Fertility, Moving forward, Reflections on cancer5 Comments

After friends hailing last Christmas’ engagement (after 13 years together) as a true ‘Christmas miracle’, I am delighted to report I am the welcome recipient of yet another one.

Today, on my official ‘lumpiversary’, my body has decided to celebrate by starting its first period since the start of treatment. Not something I thought I’d ever celebrate – or even talk about publically – this news is the best present those of us who have undergone chemo and risked infertility could hear.

Cancer takes a lot of things, but it I said at the very beginning, if it wanted to take away my chances of being a mother, it was in for a tough fight. But whatever happens in the future, even more exciting is the fact that this 33-year-old body is, at last, fed up of acting like it’s about 62.

Today is the day I reclaim my body and femininity, and that makes it a great day!

I write this for every woman facing or undergoing chemotherapy and hoping that one day soon, they too will smile in face of a packet of tampax. It took 20 weeks from the end of chemo, but it happened. All I hope is that, if you’re reading this and hoping, it will happen for you too.

There is hope for us all.

Let’s just hope the cramps are kind!

Merry Christmas one and all!

Breast cancer lesson 136: Say goodbye to the fake menopause – and hello to a good night’s sleep

On By Jackie ScullyIn Chemotherapy, Fertility, Zoladex2 Comments

Contrary to what my oncologist thinks (although I fear he was trying to lighten things), no woman needs a fake menopause to prepare themselves for the real thing. You may see it as an end to periods as you know them. In truth, the menopause disrupts so much more than that (sleep being top of the list) and, enduring it more than once is not something ever to be encouraged.

That is, unless you want to try and give your ovaries a chance of coming back to life after chemo!

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Four weeks ago today, I was waiting patiently in the oncology clinic for my very last Zoladex injection (click here for lesson 124 and a quick reminder). Zoladex (also known as Goserelin) is a hormone therapy sometimes offered to pre-menopausal women throughout chemo to send their ovaries to sleep. The idea is that chemo drugs tend not to attack things that aren’t actually doing anything (similar to the cold cap treatment to reduce the chances of hair loss). While its effectiveness is still yet to be proven, it is widely agreed that while taking the drug may not guarantee you retain your fertility after treatment, it certainly doesn’t do any harm (unless you see four months of sleep deprivation as harmful)!

With no Zoladex appointment scheduled, today marks the start of the waiting game. Up until now, I have not expected a period. Now, I live in hope that my body will return itself to normal and not actually send me into the official menopause (if feels strange to be wanting something like a period. I will probably regret saying that if it comes back with a vengeance). The odds, based on my age, are good. The reality? No one knows and no one dares predict. It’s saving me a fortune in sanitary products, but I would really rather just take the hit.

I haven’t written much about my feelings surrounding the prospect of infertility. I have always been a great believer that things are meant to be. I remain thankful that lots of my friends have been able to conceive and I feel lucky to have so many children in my life (if not under our roof). Whatever happens (even with seven embryos in the freezer), I just feel happy to be here. The future can take care of itself. The way I see it, childless and alive is still a good result! And, if children do feature in our future, I have Zoladex to thank for preparing me well for months of sleep deprivation.

Of course, it’s not just the periods I am willing to return. A night without a yo-yoing temperature is something about which I have been dreaming (when I get the rare chance) for a long time. I understand that Tamoxifen – my soon to be best friend for the next 10 years – is likely to cause at least some of the same symptoms (lucky me!), but given I don’t have to start taking this daily delight until radiotherapy is over, I am hoping for at least a little break (PLEASE!!!!!!). I am now pretty effective on about three hours (my usual pattern is to fall asleep straight away and then wriggle around in a few different outfits from 2am onwards) – but I really wish I didn’t need to be. When a lie-in is once again a treat, you will all know about it. The title of this post may seem a little premature, but I am hoping by expressing it publically, my body might just take the hint!

My fingers are well and truly crossed. Let the waiting game begin!

 

Breast cancer lesson number 87: The answers to those burning questions are closer than you think

On By Jackie ScullyIn Breast reconstruction surgery, Charity, Chemotherapy, Fertility, Reflections on cancer1 Comment

How often have you walked out of a consulting room partly reassured by all the questions answered and also partly plagued by the one or two things you just forgot to ask? By this, I don’t mean (if you’re anything like me) the questions you’ve diligently noted down in order to quiz any unsuspecting consultant? No, by this I mean the bigger picture questions that keep you awake at night or creep up on you when you least expect. In cancer land, that is a question like: ‘How long do you think the cancer was in my body before I found the lump?’ Questions that have no real bearing on the treatment plan in front of you, but questions that are no less important or interesting.

Since diagnosis day, I have been making a note of ‘random questions I wish I’d asked’ for a blog post at the end of active treatment. Currently on the list (in addition to the above) is ‘what do you actually do with the cancer you extract?’ Is there a cancer bin? Is it incinerated? Or, can they store it and retest it should there be developments in science? I know it sounds strange and I would guess the answer is incineration otherwise they’d have to take out extra storage space. But, it’s just one of those questions that for someone only recently inducted in to the world of cancer and unacquainted with the inner workings of hospitals actually finds rather interesting.

There is one question, however, that I have wanted to know the answer to ever since I came round from general anaesthetic number two after my egg harvesting.

And, on Saturday at Younger Women Together I got my answer. Younger Women Together is a fabulous and free two-day event held by Breast Cancer Care for women aged between 20 and 45 who have been diagnosed with primary breast cancer. Not only is it a great opportunity to meet and share experiences with other women in a similar position (none of which I have managed to spot in my own hospital), but it is also – with its expert speakers and workshops – the perfect environment within which to ask a few of those burning questions. I couldn’t recommend it highly enough to young women who are grappling with a diagnosis, undergoing treatment or trying to find their ‘new normal’ in the years that follow. I left inspired, moved and supported. And with my answer!

Starting with ‘the question’ here are a few things I am glad (and thankful) I now know (apologies in advance if I get any of the detail wrong, just passing on what I scribbled down):

Fertility question: If I am rendered infertile as a result of treatment, am I still able to carry the embryos frozen as part of my fertility preservation before chemo?
Answer: Yes! It may involve a few drugs, but just because your body has stopped producing eggs, it doesn’t mean you can’t carry one you’ve already harvested. Great news.

Fertility question: Can you test your fertility status before going onto Tamoxifen?
Answer: With difficulty if you are recovering from chemo and on Zoladex. It is possible to test for fertility using blood samples (for your hormonal profile) or scanning, but drugs can interfere with the results until your body is back to normal. Testing on Tamoxifen is also not advised due to the fact it stimulates oestrogen receptors in the uterus, while reducing oestrogen levels elsewhere and can cause temporary loss of or irregular periods, so may also give misleading results.

Fertility question: Can you predict the chances of someone losing their fertility during chemo?
Answer: The chances depend very much of the drugs used in the chemo regime. Alkylating agents (such as the C in FEC) are considered more problematic. Having said that, the C when used in the CMF regime seems to cause more problems than when it is used in the FEC regime. The Tax regime is less concerning. Statistics suggest women under 30 have a 5% risk of losing their fertility compared with a 50% for those between 36 and 40. I am somewhere in the middle! Age, drugs, dosage and a woman’s ovarian reserve (before treatment) help doctors predict an individual’s chances.

Fertility question: If you get pregnant after a cancer diagnosis, should you expect to be treated differently?
Answer: The short answer is yes. Chemotherapy can cause possible cardiac issues, which may not present themselves until pregnancy when the heart is working harder. This means echocardiography and closer monitoring is probably advised. There is a small increased risk of complications at delivery and a 30% increase in the C-section rate (although it is not known whether women are choosing this option as a way of taking more control). Where breasts have been reconstructed, pregnant women may wish to wear a prosthesis if the unaffected breast grows and leaves the woman feeling lopsided!

And a few ‘Did you knows?’:

1)    According to the latest statistics, 537 women between the age of 30 and 34 get breast cancer in the UK every year. That is compared with 2,899 women between the ages of 40 and 44.

2)    Even with a mastectomy, there is usually some breast tissue left behind in the affected breast.

3)    A new report just out has suggested that Phytoestrogens (basically oestrogen-like chemicals found in plant foods such as seeds, beans and grains) can reduce the risk of cancer.

4)    Omega 3 can help with joint inflammation and chemo brain (or memory issues)!

5)    Valerian can help with sleep problems while on chemo.

6)    Figs contain calcium

7)    And, wise words from speaker and fellow cancer survivor Kelly Short: ‘Don’t think about yesterday, you were a different person then.’

8)    www.insurancewith.com is a useful insurance provider for those looking to travel with a cancer diagnosis.

There was also plenty of exercise-related material I will save for another day. As you can probably tell these two days have enhanced my life – and my understanding of the illness I now face. If you’re a young women with a breast cancer diagnosis, I would urge you to book on today for a strong dose of inspiration, motivation and practical advice. Click here to find out more.

And, if you have a burning question that you really want answering, why not post it here (as long as it is not ‘what is the meaning of life?’). Someone out there might know the answer, or, if it’s cancer related, I might just be able to add it to my list once I have summoned up the courage to find out which bin my cancer landed in!

NB: There is a whole other side to the event that I feel it would be wrong to touch on in a blog and that’s the amazing and wonderful women who sat alongside me over those two days. How amazing it was to sit among women who didn’t know the me with hair, who understood what it was like to spend a night awake with nothing but a hot flush for company, knew how to navigate the terminology and side effects that come with the words breast cancer and understood the importance of a smile. Less a support group and more a practical and lively forum for sharing experiences. I feel privileged to have met these amazing women.

Breast cancer lesson number 69: When your ovaries are at stake, do what needs to be done

On By Jackie ScullyIn Chemotherapy, Fertility, Zoladex1 Comment

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While most people were on their way to work in the Capital today, I was on a quick detour (also on my way to the office I hasten to add). Yes, it involved the hospital. And, yes it involved this rather exciting gold box.

Now don’t be deceived by its shiny exterior. Inside this box is one of the largest and strangest syringes I have ever seen – and would ever want to see. That’s because, like a lot of syringes, it’s not designed to administer liquid. Instead, it houses an implant (a small pellet) that needs to be injected under the skin to release a drug called Goserelin. In the hands of a nurse with no local anaesthetic cream (and only a side and not a stomach in which to inject said implant), there is only one outcome – and it’s pretty painful.

Why would I want to inflict this optional pain on myself I hear you ask? Well, if you’ve followed my fertility journey, you’ll know that Goserelin (otherwise known as Zoladex) is all part of the try-to-stop-cancer-taking-away-my-fertility plan. Even though we have embryos in the freezer, we would still rather not use them. Zoladex is a synthetic version of a natural hormone that controls how the ovaries work. By switching off the production of oestrogen, it suppresses the ovaries and sends women into an artificial early menopause (hot flushes here we come). Just when you thought you’d had enough of side effects, it throws in a few more!

Now, it’s not the first time I have received this injection (the first one was alluded to in lesson number 42). I have already had a hot flush and I still have three more to go. But, it is the first time I’ve not just slotted it alongside other news of the day. And that’s because, it’s a big syringe, with an even bigger role to play. Nobody wants to sit in the chemo chair thinking they haven’t done everything they can to protect their ovaries and their chance of bringing children into the world. Everyone undergoing chemo should be given the choice, where appropriate, to go up against this oversized needle and endure a period of self-inflicted hot flushes. If the prospect of being able to have children fades before your eyes, you’ll know just why this gold box deserves a little post all to itself. Goserelin is not just a side note in the fight against cancer. It’s a star.

This box also reminds me of just how amazing medicine really is. We often take it for granted as we’re popping our paracetamol and rubbing in our ibuprofen gel. But, medicine has given us hope where are bodies have tried to take it away. Medicine knows how to trick cancer cells – and kill them. Medicine is the reason I can still picture myself changing nappies. And, most importantly, medicine is the reason I am alive today. I am in awe.

Read the Goserelin (Zoladex) factsheets and they sometimes say that the use of the drug during chemotherapy is still something currently being tested as part of clinical trials. Apparently oncologists don’t all agree about its use in this context. I’m not an expert, but I am writing this because I want to help others in my situation find out about the options. You may not be able to receive the drug (or have it recommended to you), but now you know to ask – and that’s all that matters. You also know not to look inside the box or at the needle. You just need to do what needs to be done.

In every other way, it was a normal day at the office. But, as I sat there answering emails and discussing visuals, I couldn’t help but smile at the throbbing in my side. Inside that little pellet is where the magic of medicine really comes into play. It may not work for me, but I will always know I gave it my best shot.

If you are interested in finding out more about the fertility journey as part of cancer treatment, I have written a blog for Breast Cancer Care. Here’s the link in case you find it of use: http://bit.ly/1gnEnyq

Breast cancer lesson number 41: The injecting is worth it

On By Jackie ScullyIn Chemotherapy, Fertility3 Comments

Eight has always been my lucky number. And, I am delighted to report, it seems to be not just lucky in life, but lucky in producing life. That’s right, the surgeon and embryologist have managed to extract eight eggs. By lunchtime tomorrow, we should find out how many of these eggs have been turned into embryos. There’s a one in 20 chance it will fail, so let’s hope the odds are in our favour this time after so much bad cancer-related luck.

The egg collection procedure (or what I saw of it) is nothing to fear. First, you arrive in your cubicle, get into a gown, foam slippers and a trendy mesh cap. Then you answer lots of questions, confirm consent and, in my case, pop a quick suppository in (it was either me or the anaesthetist doing this and I could tell by the look on his face that he’d rather it was me doing the honours). I obliged as he was the magic anaesthetist who’d managed to extract blood from me just a week ago.

The procedure room itself is the first theatre-like room I have ever seen (usually I get knocked out in a room nearby so I don’t get to see the monitors, team and sets of scrubs). Due to the fact it’s the first time I have been without my bra and corset for an extended period, they let me position myself on the bed, before attaching heart monitors, oxygen and a cannula. After a little gentle persuasion, the team took enough blood out for themselves and the oncologists so I avoided two blood tests today – and further bruising on my sore-looking left arm. Right arm was off limits as this second band shows.

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The last thing I remember is a syringe worth of happy relaxing juice and a further syringe of general anaesthetic. After that, they stuck a needle in my ovaries, extracted the eggs and fed me a nice cocktail of morphine and paracetamol. I was back in my cubicle with a packet of biscuits and a nice cup of tea in no time and, am now back home, back in the corset and rejoicing in the fact stage two is pretty much done. Just have to drink three litres of liquid a day (tea doesn’t count sadly) to flush my system – and wait for that embryo call.

You’d think after all this ovarian stimulation, my body might get a day off. Sadly, the oncologist I met in the morning had other ideas. My ovaries may have been swollen with eggs today for baby-making brilliance but, as of tomorrow morning, they’re going to be shut down completely until August (part of fertility back-up plan part two). Tomorrow morning, a lovely nurse at the hospital will be popping an implant under my tummy skin to release a drug called Zoladex. This clever drug (released over the next four weeks, after which I will need another implant) is designed to send me into a fake menopause. Chemotherapy can’t kill something it thinks is already dead. While I can’t say going through the menopause twice (first time at 32 at the same time as chemo) is particularly attractive (just imagine the combined side effects), if someone gives you the chance to protect you’re ovaries, you’ve got to take it. I will be well-versed in hot flushes when the menopause happens for real, that’s for sure.

As well as putting my body through five Zoladex implants, there was one further drug-related revelation in oncology. It seems that because of the fact the cancer had spread beyond the breast and into tissue surrounding the lymph nodes, I will be taking the anti-oestrogen drug for 10 years rather than five. This means that the end of treatment will be 2024 at the earliest! The good news? We should be able to come off it to try for children before the 10 years is up. Sounds a bit like extreme family planning to me.

With the eggs out, the countdown to chemo is now on. April 2 is D-day (or destruction day) and 31 March the day when the PICC line goes in (meaning four months without blood test needles). Stage three is in sight at last.

So, let’s hope we get those embryos in the freezer and let’s hope cancer doesn’t take another chunk out of my femininity. Having taken my boob, it’s already got its eyes on my hair!

Breast cancer lesson number 40: Cancer treatment is like a punishing endurance challenge. Savour those checkpoints

On By Jackie ScullyIn Breast reconstruction surgery, Fertility, Reflections on cancer1 Comment

For me, breast cancer treatment is a five-stage race. First, you lay down on a slab and get rid of the troublesome cancer. Stage one, tick (if we ignore the fact I have to get a little cosmetic adjustment at some point in the future). Next, you get to store some babies in the freezer. Stage two, tick. With fertility over, your veins get a high dose of body-killing (or life-saving) chemo drugs. Stage three, tick. Once your body has started to recover, you get a blast of high-energy radiation. Stage four, tick. Then, if you’re still standing, you say goodbye to daily hospital visits and hello to daily doses of oestrogen-blocking pills. The finish line is currently scheduled for some time in 2019, and I have no plans to go back in training after that! After that, the only races I’ll be tackling will be charitable ones!

Tomorrow is the end of stage two. That makes it a special day (one refreshing checkpoint in this epic race). With the end of stage three planned for mid-August, it will be a while before I once again feel like I am one stage closer to the home straight. Chemo is a long stretch and I know I’ll need all my energy just to get to the end.

I have to say, sitting here with a bloated stomach that makes me wants to live in the toilet, tomorrow cannot come soon enough. I certainly don’t think a body corset, tummy scar and enlarged egg-stuffed ovaries – combined with a functioning bladder and stomach – belong together. I feel like someone is bouncing on my stomach and there isn’t enough skin to go around. Starting to find the idea of a needle in my ovaries rather attractive.

What did I feel like after completing stage one? First, there was pain. Then, there was immense relief. I’d like to say I was dancing around my hospital bed. But, let’s face it, I could barely stand. How do I think I will feel if we are lucky enough to pop some embryos in a freezer bag? First, I will be happy that the baby back-up plan is in place. Then, relief that I can walk from the living room to the kitchen without needing a wee. (I also quite like the idea of a fridge that isn’t full of syringes and vials.) Neither of these sound like great moments of celebration or markers in history. But, when there is life at stake, you’ve just got to be happy you registered for the right race and are running in the right direction.

Cancer checkpoints don’t come along very often. When they do, whether you’re on morphine or Merlot, you’ve got to grab them, get the most out of them and use the happiness (or relief) they bring to take you forward into the next stage. I may be more likely to be raising a mug of tea than a glass of wine at the moment (last night aside), but I am determined to make sure each one of these stages does not go by unnoticed (I think a lot of people design a sign to mark their last chemo session, so that’s on the to-do list for stage three). You may lose a few consultants and nurses along the way, but that doesn’t mean there are any less people rooting for you to succeed. There are just a few less appointments to attend, a few less needles and a few less worries to occupy your fact-filled mind.

This is a race I will complete – and there will be a big smile waiting for me at the finish line (and probably one of the many bottles of engagement champagne currently gathering dust in the cupboard). I am not going for a personal best and there won’t be a medal at the end of it, but there will be life. I hope you’ll be there to cheer me home. 

Breast cancer lesson number 39: Timing is everything!

On By Jackie ScullyIn FertilityLeave a comment

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This is it. Inside this box is the last injection I have to administer myself as part of the fertility process (we won’t talk about the chemo-related ones just yet). No more Menopur. No more Cetrotide. Just two Letrozole anti-cancer pills and an injection stand between me and being able to have my eggs collected at 3.30pm on Monday.

Ovitrelle is a trigger injection. It stimulates the final maturation of eggs in the ovaries. That means, once I have jabbed myself with this last needle, there is no going back. I will be on the slab on Monday and, with any luck, we’ll have embryos in the freezer soon after that. The procedure to extract these eggs is something I have just read about (although wish I hadn’t) and is something I will not be reporting here. Ok, so it’s not on a par with having your stomach cut open and the boob chopped off, but I am glad I am asleep for it. If curiosity is getting the better of you, click here for the science, but please don’t ever bring it up over dinner! 

For the trigger to be effective, timing is everything. So, mum will be keeping me company tonight until 2am when I can deliver the final and important dose (she might get to watch Les Mis from start to finish as a treat). Then I get a day off drugs tomorrow (my body will probably go into shock), a light breakfast of tea and toast at 6am on Monday and a date with a cannula and some IV sedation later that day.

Of course, when the nurse called, I had my priorities right. One, what do I do with the sharps box of syringes that is currently making the kitchen look untidy? Two, what to do with all the leftover drugs in the fridge? (Sadly the answer in both cases is to bring them with us, which means we’ll be heading to oncology looking like a portable pharmacy or like we’re about to have a picnic in the waiting room. Let’s hope I get to keep the cold bag!). Three, if I’m at the hospital all day, when do I take my suppository? (There was a lot of laughter attached to that answer and you really don’t want to know more). And four, (arguably the most important question) can I have a glass of wine with dinner? I am glad to report, I got a whole-hearted ‘absolutely’ in response! (Better set the phone alarm for 1.55am just in case)!

There is one last – and rather unexpected – obstacle to overcome in this fertility challenge. It’s brown, it has a tail and it likes to enter our kitchen at night and camp out under the dishwasher. We’ve being trying to get rid of our visiting rat for nearly two weeks, but we do have an understanding that we just don’t enter its trap-filled and Nutella-fuelled lair at night. With refrigerated drugs to take, I think I may have to take a torch and some back-up if I stand a chance of getting to the pre-filled syringe without getting nibbled.

Oh yes, don’t think just because you get cancer, you can avoid first world problems. I have a list!

One last needle, one last shot of drugs and one chance to make embryos. Cancer won’t wait for a second cycle. We have everything crossed!

Breast cancer lesson number 38: If at first you don’t succeed, try, try again

On By Jackie ScullyIn Breast reconstruction surgery, Fertility2 Comments

Today was supposed to be a simple day. First, head to assisted conception to try and schedule my egg collection at a time that meant I could keep my oncology appointment on Monday too. Then, head to the breast clinic for the second of my arm measurements in the Lymphoedema clinical trial. In short, have a chat and stretch your arm out straight. Now, how hard could that be?

As it turns out, pretty hard. Nothing is ever quite as simple as it seems. Take assisted conception. It seems the Monday egg collection list that ‘isn’t planned until tomorrow when they know how many people are on it,’ is already pretty much full for the morning. I can only assume that has something to do with the volume of private patients on the collection list. Currently, I don’t appear on any list, but am just hoping my request to schedule it around my noon oncology and blood test appointment is taken on board, otherwise oncology might not be too pleased. Two blood tests, one suppository, one IV sedation, one egg collection and more discussions about toxic drugs await me on Monday. I’m already excited!

Determined to achieve something today, I set off to the breast clinic, practising my arm exercises on the way. As anyone who has read lesson 11 will know, I have dedicated my arm to science in order to help those trying to detect Lymphoedema as early as possible. The challenge for today? Can I get my right arm out as straight as I did a month ago? The answer? No chance. I tried (twice) and failed (twice). We even made a little graph out of the data to show me just how far off I was. My homework? More exercises until my arm is poker straight. They have two weeks to get the reading. I have two weeks to walk my arm up a wall and get it just that little bit straighter – and higher – than it is at the moment. At least I got my height measured so it wasn’t such a wasted trip for measurement man (not something I could fail at so easily)!

For those of you thinking: ‘but I thought she had breast and tummy surgery, so why is her arm hurting?,’ don’t worry, you haven’t missed a chapter. My restricted arm movement is as a result of having my lymph nodes removed (thankfully I did, given the cancer in one of the infected nodes had already spread out into the surrounding tissue). The surgery has given me a partially-numb, quite swollen and very sore right arm. It feels like someone has tightened everything inside my arm and it needs a while to loosen up. Think alien limb (whose only friend is numb new boob), and you’re not far off. With alien arm, I can write (for short periods), I can knit (for shorter periods), I can cook (as long as I don’t lift heavy pans), I can play quoits (albeit very badly) and I can lift tea (at any time), I just can’t carry supermarket shopping or, it seems, pass clinical trial tests.

Apart from a sore arm, the one thing no ANC (which means anxillary node clearance for anyone counting abbreviations after Saturday’s lesson) patient wants is Lymphoedema – or swelling. Without the lymph nodes to drain fluid from the arm, lymphatic fluid can build up in the surrounding tissues. It can be controlled, but, once it has developed (and it can develop any time in the future), it is unlikely to ever go away.

A compression sleeve is not something I’d like to wear with a wedding dress, so I am currently surrounding myself with as many tips and hints as possible to avoid getting injured or infected on that side. No one really knows what causes Lymphoedema (hence why I am on a trial), but this never-again-on-right-arm list should help reduce the risks:

The banned list

1)   Soap that dries out the skin (unperfumed moisturiser is a must for the kit bag). I think I can handle that.
2)   Very hot (or very cold water). They mention steam rooms and saunas, but am hoping occasional use is ok.
3)   Acupuncture on ‘at-risk’ arm (plenty more places to prick thankfully)
4)   Injections (woohoo!)
5)   Blood pressure cuffs (another woohoo! Quite liked it on my leg in hospital)
6)   Blood tests (don’t I know it!)
7)   Lots of weight gain (I will try, but who knows what chemo will do to me)
8)   Walking around with robot arm (being my right arm, am desperate to use it normally, so am not auditioning for a role in Star Wars)
9)   Deep tissue massage unless practitioner is specifically trained (they really know how to take away all my fun)
10) Sunburn (I have never actively tried to get burnt, but my skin just likes turning red when it looks at the sun. This could be challenging)
11)  Biting of nails (tried once, couldn’t work out how to bite them. Won’t be starting now)
12)  Washing up and gardening without gloves (I confess, I have bright pink marigolds, but am yet to put them on)
13)  Waxing or shaving the armpit with a manual razor (am hoping chemo will take care of any unwanted hair for a while)
14)  Tight jewellery or clothing (should be ok)
15)  Heavy shoulder bags (given I love to carry at least two bags at any one time, this is going to be particularly challenging)
16)  Arm strain through digging, pulling or lifting heavy bags (sounds like permission to sit drinking Pimms while Duncan does the gardening if you ask me)

NB: Please comment and add if I’ve missed any tips

Looks like I am going to become very closely acquainted with a large tub of aqueous cream (currently being applied to my tummy and boob) and antiseptic lotion (my new best friend should I get a cut, bite or baking burn).

I may have failed to achieve today’s tasks, but I still left the hospital with a spring in my step. While measurement man was measuring my height in the corridor, my breast surgeon did a double take and, realising it was me, came along to say hello. Impressed by how straight and well I looked, he gave me the biggest of smiles and said how lovely it was to see me. It may not have been a statement based on any medical examination (and I didn’t have the heart to tell him I had failed the arm test), but his smile certainly made me feel I must be doing something right. I’ll take that.

Let’s hope I can successfully be in two places at once on Monday – and that somebody will be able to find a vein!

Breast cancer lesson number 36: What really happens behind the doors of the ACU

On By Jackie ScullyIn Fertility2 Comments

A trip to the Assisted Conception Unit (or ACU) is like a game of musical chairs. One waiting room and three consulting rooms later, and you come out with a bit less blood, a lot less dignity, a bit more information, and a lot more reassurance that you are one step closer to making embryos.

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This morning, everyone wanted me – or my left arm that is. First, the nurse on blood-taking duty thought she might have a go. Thankfully a bit of gentle persuasion was all it took to encourage her that I might be best left for the anaethetist. Next, tucked away in the ‘procedures’ part of the unit waiting for said anaethetist, a second nurse (who was worried about keeping me waiting) said she’d like to have a go after having spied a juicy vein. Smiling as I dutifully extended my arm, it took two failed attempts before she admitted defeat and left me nursing a cup of tea and a biscuit.

It wasn’t long before my knight in soft blue scrubs arrived with a large syringe and an appetite for my left wrist. Eighteenth ‘sharp scratch’ of the week, and we’re there. I am proud to admit that I have still not cried in a blood test, even though my arm is starting to look like I’ve gone a few rounds in the boxing ring.

I never thought I’d say this, but the internal scan part was the easy – if not so dignified – bit (think probe, think jelly and that’s all you’re getting). After having injected myself with a combination of Cetrotide and Menopur for the last few days (balanced with a few Letrozole pills), the scan was to determine the size of my follicles and how well I am responding to the treatment. The good news is, that while my veins might be retreating under the stress of all this poking, by body is still playing ball. The follicles are growing well and, if my blood test results agree, I will be heading back for IV sedation on Monday (no doubt, at the same time I am supposed to be in oncology discussing toxic drugs and having a further blood test).

So what happens next? I wait for a call. If the call keeps me on track, I continue with my injections until Saturday, when I get to mix things up by introducing a ‘trigger’ injection called Ovitrelle and stopping the Cetrotide and Menopur. Ovitrelle is designed to stimulate the final maturation of the eggs. All being well, they will knock me out on Monday, extract what they need and then get to work in the laboratory. There is a suppository in the mix here, but the less said about that the better!

I must confess, it’s not the most romantic way of making babies. But, in what feels like a continuous race against time at the moment, it’s the best chance we have of being able to change nappies, clean up sick and join the banks of people having sleepless nights all over the Capital.

The stakes are high, but let’s just hope the chemo is kind, so we’ll never have to use our little embryos.

Breast cancer lesson number 35: It’s ok to not be ok

On By Jackie ScullyIn Fertility5 Comments

I have a confession. Last night, I cried while trying to inject myself with my Menopur drugs. I sat looking at the needle that I was about to inject into an already sore and bruised thigh and I cried and I cried and I cried.

I cried not because it was yet another needle (although 13 needles in two days, is not fun). I cried not because the fertility department hadn’t called me back to advise me on dosage so I didn’t know what to inject (although that was a little concerning, because I don’t want to be hyper stimulated!). No, I cried because I was weary and the thought of seeing more blood and being the one to inflict yet another bruise made me sad.

My body is fighting the pains that come from having my tummy turned into a boob and my lymph nodes removed. My body is fighting every time it gets confronted with a needle. My body has a cocktail of anti-cancer drugs and fertility hormones swirling around inside it. My body needs a day off from fighting. The trouble is, that day is about six months away.

I promised myself when I started this blog that I would be honest and true to myself throughout. I have, up to now, been incredibly positive. I have smiled in the face of cancer. I have been diligent in my research and have made all the right noises. I wanted to be a great and patient patient. And, you know what? I will do and be all of those things again and again.

But, right now, as I sit on the sofa I am not being brave or strong or inspirational. Today, I’m just being me. And that’s ok. Today, I am hurting. And, the fact is, that’s ok too. I am writing this post, not because I want people to feel sad for me, but because I want to reach out to those experiencing challenging times and say, it’s ok to not be ok. You’re not made up of a series of powerfully positive personality traits. You just have to be what your body allows you to be when you wake up each day. And, listening to your body and admitting that it’s ok to not always be a pillar of strength is probably the greatest lesson you’ll ever learn. It’s hard, but it’s also quite liberating.

Ask me how I’m feeling right now and I’ll tell you. I feel like I have already run a marathon but am back at the starting line (complete with injuries from the first one) waiting to go again. I want to stop, rest and heal but I can’t, because I’m running for my life. I also want to give Duncan and I the chance to be parents. That’s a big thing. Cram it in between major surgery and chemo and it’s still a big thing. It’s just that there are two other really big things either side fighting for attention.

Yesterday, my lovely oncologist turned to me and said that he was behind me 110% and would be there to support me through this next phase. He also said that there will come a time when I will desperately want it to stop. When that time comes he said he will remind me of the need to keep going. This was a pep talk unlike any other pep talk I have ever received. For surgery, they told me it would hurt, but if I did my exercises, I would recover. It did, I am and I will. For fertility, they told me to inject, inject, inject and then they will eventually inject me for once and take my eggs. I am and they will. The experts are usually spot on. Based on yesterday’s conversation, I should be preparing for the fight of my life. I need to be ready. But, when you’re covered in bruises and you’re just piling on the pain, it’s hard to get ready.

Yesterday, instead of trying to take the title of world’s best patient (I seem to have a burning desire to be a textbook student in every consultation because I think people often forget that doctors and nurses are humans too with real lives away from the ones they’re trying to save), I should have just accepted the support available and explained how scared I am. The truth is, there is no such thing as the world’s best patient (and if there is, don’t tell me because I don’t want to be tempted to apply). No patient is good or bad. Everyone is different and, while it’s nice to be the nice one in the waiting room, I am just another name on a long list of cancer patients. Nice people don’t queue jump or get better drugs (just extra biscuits if they’re lucky). I will continue being nice, but I know that far better than seeing me, would be to never see me at all!

As a quick aside, it’s not all bad being one of the youngest people in the waiting room. While I was waiting for my appointment, a lovely old chap chose to sit next to me because he’d picked me out as ‘the good looking one’. Trust me, there wasn’t much competition, but it still felt good. Not sure he’ll be rushing to my side when I have no eyebrows though!

There will be a time to be strong. But, for now, I’m just going to sit on the sofa, drink tea and work up the courage to take my next injection. Wish me luck.