H is for… Hairloss

20 Nov

Although I stocked up on wigs and invested in a pair of clippers – I was fortunate enough with the cold cap not to have to use them. However, dealing with hair loss is a massive part of a cancer diagnosis so a friend (who is MUCH braver and MUCH prettier than me and is now rocking the pixie crop) has been kind enough to share her experience below.

hair loss cartoon

H is for hairloss.

H is also for having to buy scarves/ wigs/ hats.

H is for having to see your bald head in the mirror too.

H is for (beautiful and soft) hair regrowth.

H is for hairloss. As quite a girlie girl, after the shock of the cancer diagnosis, the horror of knowing that I was going to lose my hair was almost unbearable. For me, I was in such a state of shock at that time, that I couldn’t really contemplate using the cold cap and accepted that, to save my life, I would need to lose my hair. As the impact of this sank in, I found that to feel a little more in control I would need to take steps to help myself when this actually happened…

bald-disney-princesses

H is for having to buy scarves,wigs and hats. I visited Trendco to meet with a wig specialist to discuss my hair pre-chemo (I went with my long hair so she could see it) and to find a suitable replacement.  The staff were lovely and very understanding (even though I felt as if it was all a dream – no, a nightmare – and I was simply looking in on another 30-year old choose a wig because she was going to lose her precious hair). You can get an NHS voucher to go towards the cost of the wig from your doctor or nurse. Be sure to ask about this. Don’t worry too much if the wig isn’t quite perfect as you can get them restyled or thinned out – either by the shop that you buy the wig from or you can book an appointment with Trevor Sorbie’s My New Hair (you might even get Trevor himself). I went for a hairpiece quite similar to my own hair but actually found that I only wore it nine or ten times. While I met a few ladies who wore their wigs every single day, including one friend who went funky and spent her days in a bright pink wig, I felt much more comfortable in hats or funky scarves to match what I was wearing, and less as if I was pretending to be something that I was not. Scarves can obviously be purchased from pretty much anywhere and I found that people stared much much less than I thought they might. You will need to work out what works best for you – wigs, hats or scarves – and until you do, I wouldn’t waste too much money on headwear or expensive wigs (for example real hair or custom-made). I was in touch with a girl who hated the lot and embraced the baldness, even as a bridesmaid to her sister. Brave lady.

chemo scarf

A quick practical note on the scarves; square ones are best. You need to fold them diagonally in half to make a triangle shape and then put the longest side of the triangle along your forehead. The bundle can then be tied at the back or side of your head and you can even add a flower clip or something pretty to make it look more feminine. Click here for a link for a demonstration of how to tie a scarf. Breast Cancer Care also offer a free service called Headstrong with trained volunteers running private sessions talking through how to look after your hair and scalp before, during and after treatment. They also show you how to make the most of the alternatives to wigs by using scarves, hats and other headwear so that you leave feeling confident that you’ve found something that works for you.

cancer hairlossH is for having to see your bald head in the mirror. So after one treatment I had my long hair cut into a jaw length bob. Everyone was telling my how much it suited me which I thought was a waste of words as it was clearly a halfway house to my baldness. I had a bit of a plan though. I visited my hairdresser and asked her to tightly plait my hair and cut off the whole plait. I then bound my plait up with hair ribbons and sent it off to the Little Princess Trust.  If I wasn’t going to be able to have my beautiful hair then I was going to make sure another person who deserved it could! This amazing charity uses human hair to make wigs for children that have lost their hair due to cancer treatments. The small act of doing this did help lessen the blow of losing my hair a little bit.

After my second treatment I was terrified about the inevitable loss. My hair follicles on my head felt weird. Kind of zingy and as if they were opening. They ached too and clumps of hair began to come from my head if I loosely pulled at them or washed my hair. Obviously I knew what this was leading up to… and I honestly felt one hundred times better once I had done the deed. So, 2 weeks after my first chemo, I was home alone and I shaved my head using clippers borrowed from a friend. I just sat in front of a mirror with a blanket underneath me to collect the hair and went for it. It was a scary sight seeing myself in the mirror for the first time. I guess it was the first time that I felt like a cancer patient but at the same time I felt totally and utterly numb. As if it wasn’t me but some other poor girl, and that at any second I would wake up or head off to work as the previous me would have done. It was honestly the strangest and most surreal half hour of my life. Because of the numbness, the upset didn’t really register. I didn’t cry (although I have heard from other women that this was unusual), it was what I HAD to do to live. So I did it. Showing my partner when he came home was strange, no doubt as much for him as for me. However, once I had done this, the thing that I was so very terrified of had been stared in the face and dealt with. And from then I was going to get new hair.

I will just mention here that it is not just your head that you will lose hair from! Over time you will probably lose all of your facial and body hair. You will discover it in strange ways; your nose will run as there are no hairs up there to stop the flow! But it all comes back, sometimes thicker than before!

H is for (beautiful and soft) hair regrowth. I was told that three months after the final chemotherapy treatment you will have a full coverage. I found this to be true and at this point bravely outed my new hair. It is much curlier than before and incredibly soft. I would never have chosen to have short hair but by wearing funky headbands and clips I feel more confident and some days I actually like how it looks now. Hair growth is unfortunately never as quick as you want it to be – but if you are really struggling with your new short hair do, or want longer hair for a special occasion, Racoon hair extensions who provide subsidised and very gentle extensions after approximately six months of regrowth.

Maintenance and regrowth. I only ever shaved it the once. Some ladies shave the regrowth and wispy bits during chemo, but I would never have shaved it off again as I was so happy to have new bits growing back! And it was so awful I wasn’t going to put myself through it again. When it grew back it was fine, it did not need another shave, just regular cuts to make a style to give my hair more of a “do” rather than it all being the same length. I washed my hair/head with baby shampoo as I wanted to be gentle to my head. I sometimes put Bio Oil on my head afterwards to keep it moisturised. When my hair had returned I bought some gentle natural shampoo from the Body Shop. I quite like the idea of not putting any chemicals on my new hair but we will see how long this lasts! If you’re not too bothered about the chemical thing, there’s a new shampoo called FAST (Fortified Amino Scalp Therapy) which they claim doubles the rate of your hair growth and was developed for chemo patients…I don’t know if it works – but coule be worth a try?

Sometimes hair regrowth is a slightly different colour. And might be curlier than before. If you have grey hairs or usually dye your hair, the official line is to wait 6 months after your final chemo before dying it. However, I know quite a few ladies who only waited a couple of months, and used a gentle ammonia-free, semi-permanent vegetable dye such as Herbatint with no problems – but be aware that you might need to go a few shades darker than normal as the colours come out funnily for some reason…

Good luck girls. I did it and you will too. X.

Here’s a pic of the gorgeous Jo as a bridesmaid, 6 months after chemo:

Hairloss

Resources

Cancer Hair Care is a fantastic website with info on regrowth, post-chemo haircare and hair dyes, and short hairstyles.

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J is for… Jumping the Gun – “Scanxiety”

20 Nov

Fear of cancer returning

OMG! THE FEAR that follows a cancer diagnosis!! The problem is that (contrary to popular opinion) we can never be given the “all clear” and have to be happy with being “NED” (No Evidence of Disease). The new challenge following treatment is managing this knowledge and being vigilant but without panicking that every lump and bump, ache and pain is the cancer having spread. Naively I thought that treatment would be the worst bit of a cancer diagnosis and that I would never, ever feel as worried or as scared as when I was given my primary diagnosis. However, that was before I’d had to deal with “the fear” and “scanxiety” of various symptoms that I have suffered since treatment has finished. It is all too easy to jump the gun and diagnose yourself with a whole heap of nasties.

protective bubble

During treatment you feel like you are in a little protective bubble as you will have constant hospital appointments with specialists and nurses who keep a close eye on you, constant blood tests, maybe scans too, and your veins are being pumped full of all sorts of amazing toxic chemicals which gush around your body, zapping those pesky cancer cells. Once you’ve finished treatment, the protective bubble bursts, you rarely see your consultants and you are either off to fend by yourself or, if your cancer is receptive to oestrogen, you are provided with what looks like a harmless-looking little white pill to take daily (but is much more cancer-butt-kicking than it seems – see T is for… Tamoxifen). Then “the fear” can set in. The fear of it coming back and the fear of every abnormal symptom being indicative of the cancer spreading.

waiting room

It is now far too easy to jump to the conclusion that any lump, bump, ache, pain, bruise or cough is due to cancer – and when your consultant sends you off for a scan to “check it out” it just compounds the fear and makes it feel that it is more likely to be something sinister, sending panic levels stratospheric. And don’t even get me started on waiting for the test results. Being back in the waiting room sucks at the best of times – let alone when you’re waiting to see if you’ve been upgraded to a terminal diagnosis. Words can’t even describe the fear mounting in you by the second. Luckily my oncologist is very sensitive to this and rarely keeps me waiting. For the results of my last MRI he blurted “your scan was clear” as soon as we walked into the room at which point Mr B promptly burst into tears with relief and collapsed.

bad back

The problem is that treatment itself causes side effects, so it is not uncommon to have a number of symptoms following treatment that didn’t exist before. This can range from scar tissue which feels like another lump to osteoporosis caused by lack of oestrogen, which can mimic secondary bone cancer. Luckily <touches wood> my symptoms have so far been attributed to various treatments and ongoing medication. After radiotherapy I developed some little mole-type marks around my scar. Obviously I googled it and diagnosed myself with skin mets. Cue major meltdown. I booked an urgent appointment with my oncologist who reassured me it was just skin damage caused by radiotherapy. I then had a cough for 4 months. After numerous tests my heart medication was changed and voila! I was cured. I then had a bad knee which I mentioned to my oncologist who sent me for an immediate x-ray. All clear. I then developed an incredibly bad back with pain radiating through my hips, making it painful to walk, lie down or sit. The spine tends to be a favoured route for breast cancer to spread. One lengthy MRI scan and terrifying wait for results showed nothing sinister – and after a few physio and acupuncture sessions the pain was eased – although it still niggles at me daily. My physiotherapist explained how my back had been affected by my surgery choice and the muscles weakened by chemo. What else…? Oh, my chemobrain symptoms of  fogginess, lack of concentration, memory and confusion coupled with headaches and my newly developed double vision led me immediately down the brain mets route. However, turns out it is just chemobrain (I say “just” but it sucks! BIG time. See I is for… I’ve finished but I still feel rubbish…) and my eyesight being affected by the chemo and Tamoxifen, which was then giving me headaches as I was straining to see.

The fear

Unfortunately I don’t have the answer how to deal with “THE FEAR”. I wish I did! If anyone else can offer advice, I’d love to hear it. All I can say is that it is normal – everyone I have met has had the same worries and fears on varying scales – and it does get easier. How you handle it will be somewhat down to you as a person. I need to be able to talk about it, cry if I want to, and need to keep busy to keep my mind off it. All I know is that the further you get from diagnosis the more you will be able to trust your body again (yes – the same f*cked up body that just tried to kill you) and the less you will think about cancer. It doesn’t seem possible at the beginning, but despite still having regular hospital appointments and continuous side effects from the treatment, cancer is definitely not at the forefront of my mind as it was when I was first diagnosed. It will always be a part of us, but as we adapt to the new “normal”,  it will sink further and further to the back of our minds.

scanxiety

I guess my point is that although we all know that cancer is a crappy, crafty disease and can come back and bite us on the arse at any time, and unfortunately have too many upsetting reminders that this is the case, we need to be vigilant, but sensible with it. Take deep breaths and think sensibly. One girl I met had a complete meltdown when she got a cough. Having spoken to her, I found out that her whole family had colds – and coughs – but such was THE FEAR that she wasn’t thinking straight and hadn’t done the obvious thing of putting her cough down to a bug that had affected her nearest and dearest too – but down to cancer! Another friend was panicking that she was losing weight. Unexplained weight loss can be indicative of secondary cancer. However, she’d been doing Weight Watchers religiously! Think that might just explain the weight loss! Just don’t panic straightaway, especially if there is a logical reason for your symptom. Before you were diagnosed you will have had bumps and lumps and aches and pains and it wouldn’t even have crossed your mind that it was sinister! You need to remember that – and you need to remember that it most likely ISN’T RELATED TO CANCER.

However, it’s easier said than done, I know. I must head off now and try and practice what I preach.

K is for… Keeping Hair – Cold Capping

20 Nov

The thought of losing my hair was terrifying in itself. I know that sounds really vain when you’re being faced with a life-threatening illness, but that wasn’t my motivation. I just wanted to look like “me” and preserve some control, normality and self-confidence – my diagnosis had already taken TOO much from me. I’m also quite a private person and didn’t want my head to scream “I’VE GOT CANCER” to those I didn’t want to tell. So I decided to try out the cold cap.

At my first visit to my oncologist I was told that I was having dose dense chemo – 8 sessions of the stuff – and that it was the most aggressive form of chemo and that the cold cap wouldn’t work for me. This was like a red rag, and I set out to prove that my hair follicles WOULD hang on in there….

It works for some and not for others, some hospitals don’t offer scalp cooling, and those that do have different types. Some are kept cold in the freezer and have to be changed regularly during treatment and others are run by machines to keep them at the brain-chilling temperature. I had the latter – a machine made by Paxman. You wear it for a set period prior to chemo, during chemo and after chemo. The time varies dependig on the drug, but it will add at least an hour onto your treatment time. I lost quite alot – about 3/4 of my hair – but have met some women who hardly thinned at all (in my experience most of them didn’t have TAX) and others who lost all of their hair but persevered as your hair grows back quicker afterwards.

Here I am wearing my cap and plugged into my chemo drip! Helloooo!

cold cap

One thing I wasn’t quite prepared for was actually cracking ice off my frozen head having worn it for hours and hours. But hey, no pain, no gain.

This was me one month after my final chemo (eyebrows and eyelashes also reappearing – but topped up with make-up – see B is for… Beauty Tips During Chemo):

Cold Cap Results

So here’s my advice and top tips:

1) Before you start. I chopped my hair into a short bob and got my hairdresser to dye it to my original hair colour prior to starting chemo so my roots wouldn’t look so bad. I have lots of pesky grey hairs and spoke to Paxman during my treatment who said that I could use a natural, vegetable-based hair dye (no parabens, no ammonia) during treatment – but I piked out and waited until a couple of weeks after my final chemo before getting it done by my hairdresser.

2) Be prepared for a bad hair day…everyday for 5 months! Infrequent washing, limited hair products and limited use of hairdryers, straighteners or curling tongs mean most of us wont be looking our best. BUT a bad hair day for me was better than a no-hair day and the long-term results are worth it (in my opinion!).

3) You WILL lose some hair so don’t panic too much when it starts falling out. My first major shed was about 3 weeks after my first chemo. My scalp felt really tender and handfuls of hair came out and I was convinced it was game over. However, I persevered and although I generally shed hair all over the place with another major shed after each chemo sesh, I managed to hold onto enough hair. I wore mini scarves (not full-on chemo ones – kind of gypsy-scarves with bits of hair poking out of the bottom and the front), headbands and clipped my hair up (mainly to stop it from falling out all over the place). My favourite scarves were from Fat Face and Accessorize. I did develop some bald spots and my parting got wider and wider – but this all filled in pretty quickly even before the end of chemo as you can see in the pic above. I wish I had taken a photo of the state of my hair while using the cold cap as I have met girls since who have given up using it halfway through and don’t believe that my hair thinned as much as theirs. But I looked rough and hid from cameras! So no photos exist. All I can say is that my hair thinned drastically and I almost gave up but persevered on the advice of friend who had used it the previous year – and I am so, so glad I did.

4) Use natural ph balanced shampoos and conditioner and apply gently. I used Simple and only washed my hair every 5 days or so. I just smoothed the shampoo and conditioner onto wet hair and rinsed it off – no vigorous rubbing.

5) Comb your hair gently with a wide-toothed comb. At one point I decided not to comb it in an attempt to preserve more hair – but just ended up with a massive matted dreadlock thing which I had to chop off.

6) Be gentle. Don’t rub your hair vigorously with the towel and limit your use of straighteners and hairdryers to special occasions only. Otherwise just let your hair dry naturally.

7) Conditioner rocks. Apply conditioner liberally on damp hair before using the cold cap and leave for as long as possible – at least 24 hours – although I tended to leave it for a couple of days. I just donned a headscarf or buff to hide my greasy-looking locks.

8) Invest in a silk pillowcase. I got a cheapy off Ebay. It is recommended by Paxman, and I don’t know how effective it is at slowing down hairloss, but it’s also meant to be good for your skin and feels nice!! Especially when those hot flushes hit…

9) Dealing with discomfort. I, luckily, had no issues with the cold cap and am not sure I could have done it for 8 sessions if I’d hated every second of it. I just popped it on and settled in for a Jeremy Kyle/This Morning daytime TV fest. Whilst having TAX I actually slept for 4 hours  each session with the cold cap on as a result of the piriton that was pumped into my IV. However, Mr B gave it a go and lasted less than a minute – so success could also be down to the individual’s ability to cope with it. I popped a couple of paracetamol on my way to the hospital, drank a nice hot drink when it was being wedged on my head, and cosied in under my electric blanket that my hospital kindly provided. You could always take a blanket and a hot water bottle along if you suffer from the cold. I had my chemo over the summer months, so the weather was quite nice, but I would imagine that if you are having it in winter, then a nice, fleecy buff would be in order to don after you’ve hacked the icicles from your head and are about to brave the wintery cold.

10) What to do post-chemo. I continued treating my hair as above until it felt a bit more sturdy – about 2 weeks after my final chemo session. I then tried out a number of products. My favourites were Nioxin (which Kylie was reported to have used) and Kerastase. Both came in packs with a shampoo, conditioner and a spray. My hair thickened up very quickly and grew really fast. There’s also a new product on the market that a couple of my friends are trying – it’s called FAST (Fortified Amino Scalp Therapy) which was developed for chemo patients and they claim that it makes hair grow 2 inches every month. I also ignored professional advice and got my roots dyed a couple of weeks after my final session as they looked awful – and I didn’t see what the point of keeping my hair if I had to continue to wear headscarves for 6 months. But maybe best to talk to your hairdresser and consider a vegetable-based parabens, ammonia and peroxide-free dye if you feel like risking it too.

L is for… Lymphoedema

20 Nov

Being an absolute klutz, the risk of lymphoedema really scared me and, before I understood it a bit more, I was convinced I’d get it straightaway. I knew nothing about it before being diagnosed with breast cancer (as if we didn’t have enough to bloody worry about!), but it is an important topic with significant risks, so I had to dedicate a post to it, describing what it is in layman’s terms for any newbies out there and sharing some tales from those who have developed it.

Remember, I’m not a doctor! I’m just repeating info I have been given at various forums and appointments with my LD nurse. Best to have an appointment with a lymphoedema nurse to fully understand your risks and how to avoid it.

LymphoedemaWhat is lymphoedema? This is when the lymph system can no longer effectively drain certain areas of  your body, meaning lymph builds up in the tissue, which then swells up. With breast cancer the most commonly affected areas are your arm, hand and breast on the side on which you were operated as you will have had at least a few of your lymph nodes removed, which may affect the effectiveness of your lymph system.

What are my risks? Everyone seems to get told different figures when it comes to the risks. My lymphoedema nurse told me about a third of women who had a Full Axillary Clearance (all lymph nodes removed, like me) will develop it, compared to 10% of those who had a Sentinel Node Biopsy (where they remove the first 2 or 3 nodes to test for cancer) – although your risk is increased to that of a Full Axillary Clearance if you have radiation to your axilla.

What can I do to prevent lymphoedema? Prevention is best as there is no cure – if it develops it can only be managed and treated so you then have to learn to live with it. There are a number of things you can do to reduce your risk of getting lymphoedema.

  • Avoid cuts, bruises and burns on your at-risk side. Be sensible like wearing protective gloves when gardening, oven gloves when cooking and rubber gloves when cleaning. Also be careful when shaving your armpit and around animals that are likely to bite or scratch.
  • Look out for early signs of infection – including redness, warmth, pain and swelling. If you notice anything see your GP immediately who will prescribe antibiotics to keep the infection at bay.
  • Always use your other arm for medical procedures like blood tests, injections and blood pressure.
  • Do not get a tattoo on your at-risk arm.
  • Avoid insect bites – use a strong anti-repellent or wear long sleeves.
  • Wear a high sun factor to avoid sunburn.
  • Do not lift or carry anything heavy – I was advised no more than 2kg. Particularly difficult if you’re a mum to little ‘uns.
  • Avoid straps that dig into your arm, hand or shoulder. This includes handbags, shopping bags and tight bra straps!
  • Avoid tight clothes, watches or jewellery that restrict your BC side.
  • Avoid extreme temperatures like saunas and steam rooms.
  • Do not do repetitive movements for long durations without stopping (like painting or exercising). Take frequent rests and stretch the arm.
  • Keep your skin clean and moisturised – clean skin is less likely to develop infection and moisturised skin is less likely to crack.
  • Exercise. Following surgery, stick to your physio plan. The gentle stretches keep your joints and muscles working and helps the lymph system develop new pathways to drain the lymph fluid. Once you have recovered, doing other exercise will continue to help your lymph system. I do pilates and swim. Be careful of sports and exercise classes that involve contact that could cause you to harm your arm or involve lifting weights.
  • Keep within a healthy BMI range. Being overweight increases your chances of getting lymphoedema – so best to stick to/get to a healthy weight.
  • Take some precautionary antibiotics with you if you are going abroad. Your GP should prescribe these for you in case you develop an infection in your arm or breast on your BC side.
  • Some lymphoedema nurses recommend wearing a lymphoedema sleeve on long-haul flights.

You can also get medic alert bands and bracelets to wear on your at-risk arm.

SnorkellingIf you DO cut, bruise or burn your arm, or develop an infection, it doesn’t mean you will definitely develop lymphoedema (just as you unfortunately can’t guarantee avoiding lymphoedema even if you follow all of the above and never have an accident). Initially I assumed it was game over as soon as I did anything to the arm. And I am SO INCREDIBLY clumsy that within weeks I’d banged it quite a few times, burned it while cooking and chopped the tip off my finger while chopping onions… Dufus. A month after my final radiotherapy I went on holiday with the intentions to be REALLY good. On the first day, fresh off my long-haul flight, I got sunburnt, bashed into some coral while snorkelling, resulting in cuts and bruises from my wrist all the way up to my shoulder and then topped it off with a couple of mozzie bites in the evening. I thought that was it. Game over. And waited for my arm to swell. Amazingly it didn’t. When I got home I booked an appointment with a lymphoedema nurse to get a better understanding of it all. She measured both arms, all along each arm at 5cm intervals and measurementscompared the measurements to see if there was any noticeable difference that could indicate the onset of lymphoedema. Luckily, no evidence of it so far (touch wood – I could obviously develop it at any time). She then showed me a diagram of the lymph system and told me how it works, and explained that some patients never get it as you always have some lymph nodes remaining in that area – either in your chest or under your collarbone – and your body can sometimes work out another way to drain the lymph fluid. But some patients’ internal plumbing means they will definitely get it. So while some people can put their at-risk arm through major trauma with no ill-effects, others can develop lymphoedema with no, or a very small trigger.

I’m obviously not advocating bashing your arm around like me! Best to err on the side of caution! I’m just illustrating that you don’t need to hit the panic button if you do cut, burn, or bruise yourself. Clean the cut or burn, apply some antiseptic if you have it, and keep an eye on it for signs of infection (redness, soreness, pus etc). If you develop an infection, go straight to your GP for some antibiotics to clear it up quickly, and take the pressure off the lymph system (hence why it is important to have some precautionary antibiotics if you are going to be out of reach of western medicine for a while).

What are the symptoms of lymphoedema developing? 

The main symptoms are:

  • Swelling – either noticeable swelling compared to your non-BC arm, or if your watch, rings or clothes suddenly feel tighter.
  • Change in feeling of the arm. This could be pain, aching, heavy-feeling, tightness or stiffness. Please note that surgery itself causes these symptoms, but best to get any weird feelings checked out…just in case.
  • Changes in skin texture. This could be dryness, flakiness, tightness of the skin feeling stretched or an orange-peel effect.

If you develop any of these, book in to see your GP, breast care nurse, lymphoedema nurse or surgeon ASAP. Again, they don’t necessarily mean you have developed it – it could be down to something like cellulitis or a blood clot – but whatever it is, you want to get it sorted!

How do you treat lymphoedema?

The main treatments are below.

  • Compression sleeve and gauntlet. You will be fitted for a lymphoedema sleeve and glove which compresses the tissue to stop the fluid from building up. 

lymphoedema sleeve

  • Manual lymphatic drainage (MLD). This is a form of massage performed by an experienced therapist which encourages the lymph fluid to move away from the swollen tissue so it can drain away.
  • Simple lymphatic drainage (SLD). This is a simpler form of the MLD – which you are taught to do yourself at home.

For more information please see the Macmillan website, Breast Cancer Care website or The Lymphoedema Support Network website.

So far, I have been lucky, but know quite a few ladies who haven’t been quite so fortunate and developed lymphoedema pretty soon after their surgery. A few of them have kindly allowed me to share their experiences and advice:

“I have it in my upper arm which is mildly swollen permanently and never really went down after the post-op swelling. My chest wall also has LD. The swelling is a pain – sometimes my hand gets enormous and looks deformed. The swelling does go up and down but never back to normal. When it aches, I have to put the compression sleeve and glove on as I know that it will swell up shortly afterwards. It’s a mildly sickening ache. The NHS sleeves are in a zombie-flesh colour. The arm and sleeve are different colours of zombie-flesh so look odd.  I don’t have to wear the sleeve/glove constantly but am meant to wear it if it is aching or swollen and before any exercise, including housework and driving.  It aches horribly when driving, even with the gear on.

I have MLD from the LD nurse every few weeks and she has taught me some simple strokes to do at home. Mine is classified as “mild” even though my hand can swell to twice the size.

With regards everyday life, I have to be careful with which clothes to wear – both to cover up my sleeve and the swelling and also to ensure that they are not too tight or restrictive. The compression sleeve can also be uncomfortable and can chafe. It’s also a bugger when washing hands! The glove has to come off and the sleeve’s hand-anchor has to be rolled back. The glove also gets very grubby very quickly.”

“The first indication I had was a heavy feeling in my arm and hand with no obvious change in size. My arm would ache and it was more annoying than sore. I was a right-sided node clearance and right-handed so the more active I became after treatment the more I realised there was a potential risk of lymphoedema as my hand felt tight and would swell at night. However the trigger was when my hand ballooned while I was decorating. The main trigger for me is using it too much – I therefore wear a glove and sleeve when I do specific tasks like housework, writing and decorating. I wear it to work as I’m office based and typing triggers it off. Luckily I caught mine before it took hold so to speak and I can control it. Prevention is better than a cure. If anyone suspects they have it, it must be checked ASAP. The sleeves and gloves are provided in nude (yuck) however I now have a couple of black sets which people strangely don’t notice as much . Mine mainly affects my hand , but my arm can swell too. 

So the main symptoms for me was a heavy, achy arm , then tightness and swelling at night and lastly the ballooned hand when using it too much. I only wear the sleeve when at work and occasionally at home. I can play on it at home to avoid nasty tasks!!!!!”

“My lymphoedema started 3 months ago, almost as soon as rads had finished. Mine is in my breast which is very swollen, red and hot, and the skin all over breast is like orange peel. I am told by specialist that this is the first classic sign of LD. The pain is a constant throbbing with shooting pains that travel all the way down to fingertips. I wear a crop top style sports bra as it supports it well and feels more comfortable with it on.”

“Remember American Tan tights? Welcome to the world of American Tan arms. As there are different makes and sizes, it can be a question of trial and error to find a sleeve that fits without pinching while still giving the right sort of compression. Manual lymphatic drainage (MLD) can be REALLY helpful, but it can be a bit of a lottery for how often you can get it on the NHS. In the meantime, you can do Self Lymphatic Drainage (SLD). For best results get into the habit of doing this regularly, to keep the lymphoedema under as much control as possible. 

Something else to watch out for if you have lymphoedema is any scratches or insect bites, which could result in cellulitis, a very painful inflammation of the tissue in the affected area. A useful tip is to keep a travel tube of antiseptic cream or wipes with you wherever you go, in case you do get scratched.

If you have lymphoedema in the hands, you may need to wear the rather sexy gauntlets. Unfortunately, they can get dirty quickly, so get hold of a box of latex gloves (if you’re not allergic to latex, of course) to keep in the kitchen, and shove a few in your bag too, in case you do anything messy when out and about. Use them whenever you’re preparing food, eating anything messy or sticky, and when using the loo.”

Thanks girls! If you are really not getting on with the tan compression sleeve, you can ask your GP or LD nurse to prescribe you a black one (some will, some wont – and some chemists wont dispense them) or buy an alternative sleeve or cover. You can buy patterned covers like My Tattoo Sleeve online. There are many more companies in the States that do sleeve covers and coloured and patterned lymphoedema sleeves – but be wary if you are buying an actual sleeve as you need to make sure that it fits your personal prescription and size.

N is for… Nutrition and Diet

20 Nov

Like A is for… Alternative and Complimentary Medicine, this is a bit of a minefield with many people, patients, nutritionists and medical experts having very strong, but opposing views, which makes it really confusing for us patients! Who should we believe?!! I’m afraid I don’t have the answers, but here’s my view to throw into the mix!

Pile of booksWhen I was first diagnosed I was given a whole heap of books from very well-meaning friends and family, but all it did was ended up confusing and overwhelming me. Some of them had very frightening names and in my fragile state all they did was end up terrifying me that each thing I was putting in my mouth was going to kill me! The two most common are Your Life in Your Hands by Professor Jane Plant and Anti Cancer – A New Way of Life by Dr David Servan-Schreiber, but there are many, many more out there. A very, very brief summary is that Prof. Jane Plant advocates no dairy or red meat and Dr David Servan-Schreiber recommends avoiding sugar, dairy and red meat (among other foods) while increasing your intake of a list of foods including green tea and soy. However, other studies suggest that soy increases your risk of developing cancer or recurrence, and that dairy helps prevent recurrence and is fine in the UK as our cows aren’t pumped full of oestrogen like they are in some countries!! AAGH! What to do?! Who to believe?!

Breast Cancer DietI asked a few oncologists when I was having my mini-panic and was told that the most important thing was to have a balanced diet and not to deny your body  important vitamins and minerals, particularly during treatment (remembering that we need to be careful with supplements). They realised the importance of us, as patients, wanting to take some control ourselves and were happy for me to go dairy-free if I wanted, but stressed the importance of ensuring that I must consume enough calcium to protect my bones and teeth due to the increased risk of osteoporosis during treatment.

Balanced Diet Breast CancerI then went to a couple of seminars on diet and nutrition at the Haven and at the Breast Cancer Care forum – and they also advocated a balanced diet rather than a dairy-free diet. The BCC nutritionist (who’d had cancer herself) recommended a book called The Genesis Breast Cancer Prevention Diet by Dr Michelle Harvie. It’s a good read – and a diet that I felt would be very easy to adapt to (and therefore stick to!). It follows the same lines as Dr Susan Love‘s recommendation of  eating “an abundance of winefood from plants, moderate amounts of cheese and yoghurt, weekly consumption of small to moderate amounts of fish and poultry, limited sweets and red meat and a low to moderate consumption of wine”. This balanced diet wont starve your body of any important vitamins and minerals and is proven to help you lose or maintain your weight and decrease mortality from many causes, of which breast cancer is only one.

You need to make your own informed choice as to whether and how you are going to adapt your diet. I decided to follow the diet guidelines that would fit into my lifestyle best, that I would stick to and, quite frankly, that I would enjoy the most (and I do like my cheese and wine…!). During treatment I stuck to the balanced diet approach including dairy and got really into juicing – but didn’t beat myself up when I was a bit naughty. There were times when I was feeling nauseous or had the yucky taste in my mouth – and at those times I just ate what I fancied. Now that I have finished the most active treatment, I am doing my best to get back to a healthy BMI by following a healthy, balanced diet as one thing EVERYONE agrees on is that being overweight increases your risk of recurrence.

Feel free to leave your thoughts and comments below.

P is for… Preparing Yourself for Treatment and Surgery

20 Nov

Don’t be scared – take some control back and be prepared! Being prepared for each stage of my treatment and surgery gave me back some control and helped ease the anticipation and fear of the unknown. It also helped keep me busy and passed the time in the run up to the next daunting stage of treatment. We’ll obviously all have different needs, but I’ve made a few suggestions below as to things you can do or buy to feel more ready to face your surgery or treatment.

Preparing for chemotherapy


Surgery

preparing for surgery

  • Ensure you understand what to expect. When you have your pre-op meeting with your surgeon make sure they explain the procedure, where to expect scarring, how long you will spend in hospital, the expected recovery time, how long you should take off work, how long until you can drive, recommendations for post-surgery clothing and physio and ask any other questions that have been weighing on your mind. Also make sure you understand why you are having the suggested procedure and that you are happy with what they are suggesting. You are entitled to a second opinion, particularly if you are unhappy with your assigned surgeon or had been expecting or had hoped for a different procedure (such as immediate reconstruction or a lumpectomy instead of a mastectomy) – another surgeon may agree with you, or simply agree with your current surgeon, at which point you can be confident that it is the correct surgery for you.
  • Work. Discuss your recommended recovery time with your employers and ensure you understand where you stand and your rights. Hopefully your employers will be understanding and compassionate, but if you face any challenges, Macmillan can help with offering advice.
  • Post-surgery underwear. Your surgeon should be able to advise you on this. They usually suggest firm control, non-underwired cotton bras (very UNSEXY!). I got mine from good old M&S. Let the vendor know that it is for post surgery as they should then take off the VAT. If you are having a full clearance you might want to consider a front-fastening bra as you might struggle with arm movement for a while, meaning putting on a back-fastening bra is a bit tricky.
  • Front-fastening  pyjamas or nighties are useful as it can be sore or difficult to lift your arms and you have to constantly show the site to the consultants – it’s much easier to undo a few buttons than try and struggle out of a top. Make sure they are a good, natural, breathable material. I have a good selection on Not Another Bunch Of Flowers.
  • Similarly, some front-fastening clothes can be useful for when you leave hospital in case you struggle lifting your arms. I bought a few button-up shirts and cardis.
  • Some cosy bed socks or slippers for your stay in hospital to keep your tootsies warm in bed and while shuffling to the loo on the cold floor.
  • If you are having a mastectomy without reconstruction, you might want to get a nice scarf or cardigan to drape over you for when you have visitors as it will be a little while before you are able to wear a prosthesis.
  • Ear plugs and eye mask for a less disturbed night’s sleep and for napping during the day. The best I found were by Daydream.
  • Wipes to freshen up.
  • Dry shampoo if you are in for a while.
  • Moisturising lotion – I always find my skin is very dry – maybe due to the air con or heating.
  • Entertainment – whatever floats your boat to pass the time! Load up your kindle, download films or TV series onto your tablet or laptop, buy some books, magazines or puzzle books, or take up a new hobby.
  • Transport. Plan how you will be getting to and from the hospital.
  • Luggage. Consider a wheely bag if you don’t have someone accompanying you to carry your bag as you wont strain yourself

This isn’t a definitive list of what to pack – don’t forget undies and your toothbrush etc!

Chemotherapy

preparing for chemo

  • Dentist. You are recommended not to visit the dentist during chemotherapy as your immune system gets very low and you could pick up an infection. Most units make you book a dentist appointment before starting treatment to ensure that you don’t have any underlying problems that could be exacerbated by chemo. If you do this in advance you wont risk holding up treatment. Besides, everyone loves a trip to the dentist, right…?!
  • Visit the chemotherapy ward. Arrange to visit the ward either as part of your pre-chemo assessment or with your nurse. You might think it will be more scary seeing patients hooked up to beeping machines etc, but it honestly isn’t as bad as you imagine it will be and visiting in advance removes the fear of the unknown, making it much less scary. I was terrified before I saw the ward, my imagination ran wild, but I was immediately put at ease by the comfortable surroundings and lovely, kind nurses. It also gives you the opportunity to ask any questions that have been keeping you up at night. 
  • Work. Again, it is usually best to discuss your treatment with your employer so they understand how your treatment will affect you and when/whether you will be able to work during treatment, and for you to understand what your employer expects of you. Hopefully nothing more than taking it easy!! Do take it really easy for your first session at least – this will give you an idea as to whether you will be able to work during the following sessions. Some of you will be keen to continue as normal and work throughout treatment – but be careful of putting too much pressure on yourself. Macmillan’s cancer support specialists will be able to offer advice on this subject.
  • Arrange for help with school runs/dog-walking etc following your first chemotherapy session to enable you to take it easy for a few days while you work out any side-effects. Keep a diary of these as they tend to be the same for each session and you will soon figure out which days you need extra help and which days you’re up to doing everything yourself.
  • Buy a digital thermometer. If you feel ill during chemo you will be told to go to hospital if your temperature rises over 37.5°. It’s easy to get a bit  OCD with taking your temperature with the first session – but you’ll soon relax about it!
  • Buy some antibacterial hand soap and gel to keep those nasty germs at bay both at home and on the move when your immune system is low.
  • Headwear. Unfortunately most chemotherapy agents cause hair loss and you will feel a bit more prepared for this if you have a nice scarf, hat or wig at the ready. Annabandana are pretty  good value. Bold Beanies was set up by one of my friends who has had breast cancer and sells lovely soft, cotton beanies. I wouldn’t go overboard at the start as it’s not until it happens that you work out what works best for you. I had a drawerful of sleepcaps, buffs, a couple of wigs, loads of scarves in different styles and colours and in the end used about 2 of them. Maybe get a cheap buff and scarf initially, and then buy more when you’ve lost your hair and know what you feel more comfortable in. Your hospital might have free wigs – but if you don’t like any of them, ask for your NHS voucher which will give you discounts from specialist shops such as Trendco. It is very difficult to find one that looks like  your current hair, so best not to have expectations of that, but you will hopefully be able to find one that suits you and that you feel happy in. Some ladies actually end up preferring their wigs to their normal hair! If it’s not quite right, it can be tweaked, thinned out or shaped. My New Hair is a charity run by Trevor Sorbie who does wig-shaping for free. You might even get a session with him! You could also invest in a pair of cheap clippers for when the moment arrives. Your scalp gets quite sore, so shaving it off is less painful. You might want to shave the fluffy bits regularly through treatment.
  • Hairdresser. Whether you are planning to use the cold cap or embracing the bald look, it is worth booking an appointment with your hairdresser to cut your hair shorter which will make the hairloss less traumatic. I used the cold cap and got my hair cut in advance into a short bob and dyed back to its normal colour so that my roots wouldn’t look too awful during the following 5 months when I couldn’t colour it.
  • Enrol on a Look Good Feel Better workshop. This is a fantastic service that gives you a real boost. It is free and they teach you skincare and make-up tips including painting on your eyebrows and enhancing your eyes if you lose your lashes – and you get a wonderful goody bag full of cosmetics and smellies from the likes of Clarins, Clinique and Estee Lauder. There is often a bit of a waiting list, so if you book on before you start treatment it will give you something to look forward to.
  • Stock up your food cupboard with a few items that  are good for nausea (plain biscuits, ginger biscuits, ginger beer), some healthier treats to help tackle the steroid munchies without piling on the weight and some goodies in case your tastebuds start playing up (pineapple chunks, ice lollies or juice worked well as did citrus sweets and coke). You might want to stock up the freezer too for the days you can’t be bothered to cook! The anti-sickness meds can block you up a bit, so prune juice, fruit and veg are good at naturally helping this. And fruit squash can be useful to ensure that you keep up your water intake when your taste buds go funny.
  • Arrange transport and company for your appointments. Make sure you have people to drive you to and from your appointments and to keep you company (if you want it).
  • Entertainment – Load up your kindle, download films or TV series onto your tablet or laptop, buy some books or magazines or take up a new hobby. Anything to make the time pass a bit quicker while you’re waiting around or receiving treatment and to take your mind off it.

Radiotherapy

preparing for radiotherapy

  • Ensure you understand what to expect. You will most probably see the radiotherapy unit when you go for your planning session a few weeks before you start. At mine, a lovely nurse took me aside to discuss the procedure,  told me how to look after my skin during treatment and talked through various logistics like parking.  See Z is for… Zapping those Cancer Cells with Radiotherapy for my experience to see what to expect.
  • Work. Again, important to have the discussion with your employers as to whether you will be working during treatment. For some of us, radiotherapy will be the last part of treatment and while you might be super keen to get back to normality and work – radiotherapy can take its toll on you and make you feel quite tired, so don’t commit to too much if you don’t feel up to it or need to, otherwise you might end up making yourself ill in the long-term and end up having to take time off work anyway.
  • If you need to wear a bra buy a soft, non-wired cotton bra or crop top. You don’t want to wear anything that will aggravate your skin. I just went braless (ooh la, la!).
  • Entertainment – Again, load up your kindle, download films or TV series onto your tablet or laptop or buy some books, puzzle books or magazines. Sometimes there’s a bit of waiting around! (And sometimes A LOT of waiting around).
  • Toiletries.  Advice on this varies so much from unit to unit. I washed with Simple shower gel and moisturised generously and regularly with E45 and Organic Aloe Vera Gel and avoided deodorant. My skin held out pretty well – nothing more than a little pinkness like a mild sunburn. There is a new organic and natural skincare range that is forumlated especially for people facing chemo and radiotherapy. The best oil to use during rads is the Defiant Beauty Soothing Skin Oil.
  • Support. Line up some supportive friends or family who can step in and help if you feel  you need it. Some people feel fine but others feel very fatigued or ill – in which case it would be nice to know that you have someone you can rely on to pick up the kids/walk the dog/do the grocery shopping if you’re going to need a little rest.

Q is for… Quacks and Nurses

20 Nov

Your main medical team will be made up of your GP, surgeon, oncologist and lots of wonderful nurses. Depending on your diagnosis and treatment plan you might get some other specialists added on along the way. I now have a cardiologist, opthamologist, physiotherapist and dermatologist thrown into the mix.

I’ll discuss what they do briefly – but think the most important advice is to ensure that you have a team looking after you that you trust and believe in. You’re not dealing with a cold or tummy bug here. Your life is in their hands and you will be relying on them for a long while. A cancer diagnosis is an extremely difficult time – both physically and emotionally – and if you don’t like or trust one of your consultants, it will make the whole process much more difficult. You are entitled to second opinions and to change consultant to one you feel more comfortable with. In most countries it is the norm to shop around a bit – but in the UK not many people realise they are able to.

GP

GP. Your doctor will have been the first contact regarding your original symptom and will be the one that will have referred you to the specialists for further tests. My GP is LOVELY. Really empathetic and sensitive and thorough. When you are receiving treatment you will be having more regular contact with your oncologist,  surgeon and breast care nurse who might be the most appropriate contact point for any symptoms or side-effects that you need to discuss. However, your GP will be able to help you with medication for any adverse side-effects suffered during treatment and after surgery, and for any concerns following treatment if the wait to see your specialist is too long. Mine gave me all sorts of goodies to help with some of my side-effects during chemo.

SurgeonSurgeon. Your surgeon usually be the one to diagnose you, perform your surgery and discuss your pathology with you. Some only do the taking away of bad stuff and don’t get involved in the reconstructive side of your surgery, in which case you will also see a plastic surgeon (if you are interested in reconstruction). Oncoplastic surgeons specialise in both the removal of tissue and also in the aesthetics. My initial experience with my allocated surgeon wasn’t great. He misdiagnosed me for months, dismissed me with antibiotics and assured me that he’d seen thousands of cases of breast cancer – and mine definitely wasn’t… It wasn’t until I broke down in tears and begged for a biopsy that I was given one. Then when he finally had to break the news he gave me the most sugar-coated version of my true diagnosis that I just couldn’t believe the true extent when I finally discussed it with my oncologist. As a result I had no faith in him. I needed someone who would give it to me straight and whom I could trust.

As I had my chemo prior to surgery this gave me a good few months to get a number of opinions about what surgery to have and to meet lots of other surgeons. Some wouldn’t do immediate reconstruction, others would. Others wouldn’t consider bilateral surgery, while again, others would. I was adamant that I wanted both sides done with immediate reconstruction. In the end, I opted to go with a fantastic oncoplastic surgeon who did a presentation on breast reconstruction at a Younger Women’s Breast Cancer Care Forum I went to. I met a few of her patients who raved about her work and showed me the results. They looked fantastic.

Some surgeons will explain things on a need-to-know basis and not inundate you with too much information about your pathology unless you want to know everything (like me!). So think about what you do, and do not, want to know and whether you want copies of the full reports or if knowing too much will confuse and upset you. The most basic things you might want to know will be whether the tumour is receptive to oestrogen or not (ER+) and if it is HER2+++ as this will give you an idea of what to expect when it comes to treatment. You might also want to know the size and type of tumour, the number of lymph nodes involved and what this means for your prognosis. Or you might decide ignorance is bliss! Breast Cancer Care do a fantastic guide to understanding your pathology report. Click here to see it. Your surgeon will either meet your oncologist at a multidisciplinary meeting to discuss your case – or be in touch with them if they work at different hospitals, but your surgeon probably wont know the ins and outs of your treatment plan. It will be your oncologist who will discuss this with you. The number of appointments you have with your surgeon will depend on your type of surgery and whether you are having treatment prior to, or after your operation.

OncologistOncologist. This is your cancer specialist who will devise your treatment plan and explain it to you. Again, you will want to think carefully about how much you want them to tell you about your diagnosis, pathology and prognosis. During your first meeting you might want to get an understanding of what is to come – whether you will need chemotherapy, radiotherapy, hormone therapy and any other targeted therapies such as Herceptin. They will be able to discuss potential side-effects and prepare you for what is to come. Once you know what to expect, you can start to get your head around it, and suddenly you regain a bit more control as you are given your chance to fight back.

During treatment you will have regular appointments with your oncologist to discuss the drugs, treatments and side-effects. Once your treatment has been completed you will then go to 6-monthly appointments, followed by annual appointments.

I was assigned an oncologist who scared the cr*p out of me the first time I met him as my surgeon had sugar-coated my diagnosis so much. My oncologist then gave it to me straight and told me it was a very aggressive form of breast cancer. I left feeling very scared and upset but actually respect the fact that he gave it to me straight, and as such, I trust and believe what he tells me. Following my initial appointment, I did get a second opinion in London with an oncologist who specialises in  younger women with breast cancer just to discuss the treatment plan I had been given. He agreed with it and said it would have been what he would have prescribed, and as such, I left feeling with 100% confidence in my treatment plan.

Others. The radiologist is the one who does the x-rays and scans. I was also assigned a cardiologist to monitor my heart as I was given Herceptin which is toxic to the heart and can seriously affect some people. I had regular echocardiograms (see X is for… X-Rays, Tests and Scans) and unfortunately my heart did suffer and my treatment was stopped after 5 months. I was then put on a variety of heart medication with the aim of strengthening my heart so I could restart the medication, but unfortunately my heart is still not strong enough. My eyesight was affected somehow during treatment – they don’t know if it was the chemo, the steroids or the Tamoxifen – so I now see an opthamologist. My back is also very sore as a result of my muscles being moved around during surgery and due to my muscles being weaker as a result of chemotherapy, so I have an oncology physiotherapist sorting that out. My little team is completed by a dermatologist as I developed a few dodgy-looking mole-type things, but they have decided it’s nothing serious, but are just keeping an eye on me.

Breast Care NurseNurses. I was super lucky as my Macmillan Breast Care Nurse was an absolute godsend. She was present at my diagnosis and spoke to Mr B and me for a couple of hours afterwards, she attended at all of my subsequent appointments and always took me aside after each one to see how I was feeling and if I had any questions. She held my hand when I was being anaesthetised for my first surgery. She called me at home to see how I was doing during my treatment – and even called my husband too to ask how he was coping. She is always there to answer any queries or questions I have. She helped make the whole thing a bit more bearable and I am extremely grateful to her and Macmillan as a result.

However, I have since learned that most people don’t have such supportive nurses and sometimes struggle to even get hold of them which leads to confusion as to who to turn to with questions about treatment or surgery or with any health worries.  They should be your first stop. If you can’t get hold of them, then contacting your oncologist, surgeon or GP (depending on the nature of the issue) would be my next stop. However, if you have some very general questions or niggles or are after a bit of support or reassurance then I can highly recommend the helplines at Macmillan or Breast Cancer Care. I used the helpline at Breast Cancer Care a few times and always spoke to a qualified breast care nurse – a few of whom had had breast cancer themselves. A couple of times I had specific questions about my treatment and was looking for a better understanding. Other times I called when I was feeling low and just needed a cry and a chat about what I was going through. They were BRILLIANT. It is so important to feel supported during such a difficult time – and if your medial team aren’t providing this support (shame on them) – these fantastic charities can fill that gap for you.

I’d like to say a massive thank you to my chemo nurses who made me so relaxed and comfortable when I was, quite frankly, cr*pping myself – and all of the nurses who looked after me during my surgeries.