Lymphoedema

Breast cancer lesson number 94: How to get more from active treatment

Cancer treatment is like being signed up to run a marathon race with no training. In short, it hurts. But, just sometimes, days like today are sent along to remind us that there are plenty of pit stops along the way that are actually rather enjoyable. As long as you know how to find them that is – and make the most of them when you do!

On annual leave, you’ll usually find me tucked up in front of a log fire with a glass of wine or strolling along the Dorset Coast path. The UK is our oyster and we do our best to enjoy it. Today, however, I spent the day with my arms in the air for a really good cause.

While most of you were commuting to your desks, I was on my way to the wonderful Haven charity in Fulham to take part in an exercise video. By exercise video, I don’t mean raising a sweat (although I did have a few too many hot flushes). By exercise video, I mean a series of exercises designed to help those who have had lymph node surgery manage the risk of developing lymphoedema (or arm swelling). Ok, so it might be the world’s most sedentary exercise class and I am not about to give Nell McAndrew a run for her money. But that didn’t make it any less important.

exercisevideoday

Although I don’t think I am destined for life in front of the camera (I dread to think what my exercise face looks like and I waffled a bit on my vox pop at the end), it was a really wonderful day. I met a fantastic team dedicated to getting the medical side just right and also informing people about the latest thinking surrounding lymphoedema. No longer are we supposed to rest our affected arms and wear preventative compression sleeves. Exercise (within your limits) is the answer to ensuring we all have a really good base from which to get on with daily life. Managing the risk of lymphoedema isn’t about focusing on what you shouldn’t do, it’s about making a few adjustments to life so that you can keep doing everything you love. Saunas may not be top of the list, but everything else is pretty much up for grabs.

I also met some pretty special ladies, all at different stages of their treatment. With their positive spirits and colourful characters they were great film buddies. It will certainly be interesting to see the final cut, that’s for sure. Don’t expect a screening!

Never did I think that three rounds into chemo, I would be described as the fit one. It’s also strange to think that my hairless self (albeit in a hat) will now be immortalised, a DVD reminder of the fact that even when chemo piles on the side effects, you can still come out smiling.

Amusingly, I got a few odd looks on the tube. It seems a cancer patient with a hair loss cap, jeans and a t-shirt presents no challenge to onlookers. Dress her in leggings, trainers and yoga tops and suddenly she becomes an enigma. An active sick person. Does she deserve a seat or a round of applause? After what feels like about a thousand arm raises, I think I’ll take the seat thanks.

The great thing about today is it doesn’t end there. I am just doing a quick dress change before making my way to ZSL London Zoo for a safari gala dinner.

Take that cancer!

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

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 33: Smile even harder when things don’t go according to plan

It’s Sunday morning. Most weeks, I would be enjoying a leisurely lie-in and a lovingly-prepared cup of tea while putting the world – and the week – to rights. On this morning, however, I have had to go to hospital to make sure I don’t have dangerous levels of hormones running through my body. Thanks cancer, first you take my boob and now you’re going after my lie-ins!

It was supposed to be a blood test. And, it certainly started like a normal blood test. Left arm tick. Needle tick. Rubber band to bring up veins tick. Lovely smiley lady in scrubs who called me ‘darling’, tick. Only thing missing? The actual veins.

With right arm (otherwise known as obedient blood giving arm) now permanently out of action due to risk of lymphoedema, left arm is left in charge. Trouble is, left arm doesn’t like to play by the rules… Ever!

So, here’s what happened on my Sunday morning (before my morning cup of tea).

1) Smiley lady preps left arm and starts tapping. Nothing.
2) Smiley lady tries in three places to draw blood from my elusive veins. Nothing.
3) Smiley lady asks whether she can try my leg. I say: ‘go in anywhere. I have a high pain threshold’.
4) I, dutifully, start taking my jeans off. Smiley lady points out that by leg, she meant ankle, so no undressing required. Oops!
5) Smiley lady heads to my ankle. All I can think of is the fact I should have shaved more closely as it looks a bit hairy.
6) Ankle does not play ball.
7) Smiley lady looks less smiley as she asks me to sit outside and drink six cups of water and rub my hands together.
8) I head to the watercooler, realising that I didn’t do my jeans up properly after the aborted undressing attempt. Quick adjustment required.
9) I drink eight cups of water for good measure and look like I am rubbing my hands together in front of a fire. To others in the waiting room, I look like I have ants in my pants. I look weird. I am now the weirdo in the waiting room.
10) I need the loo. I cross my legs.
11) I go to the loo. Oops!
12) Smiley lady, rejuvenated by my epic water drinking, tries again. Four times. Nothing.
13) Smiley lady not smiley any more. I just feel bad that I haven’t been the perfect patient. My smiling looks a bit misplaced. My mind goes straight to the chemo nurses, the blood tests and the cannulas all waiting for me in the next round.
14) No more needles. Just another appointment tomorrow first thing with the anaesthetist. I have been upgraded from weirdo in the waiting room to annoying Monday morning patient with an arm that doesn’t play ball. Lucky anaesthetist!
15) I leave hospital with instructions to keep injecting (while still wondering about my hormone levels). And, guess what? It’s two injections for me today, not one. First Menopur, now Cetrotide wants in on the action!

By the way, if you’re wondering where everyone is on a Sunday morning in London, I’ve found them. They’re in the Assisted Conception Unit, watching me be a weirdo.

So, thank you cancer. You took my lie-in, you took my boob and, because you decided to spread out into my lymph nodes too, you took my right arm (for blood taking purposes).

My left arm looks like a dot to dot. My bladder feels like it has been abused (the body corset isn’t helping) and I really need a cup of tea. But, you know what? Even though I had the burning desire to start wailing in the waiting room, I didn’t. Every time you knock me, I’m going to dust myself off and come back fighting. Just let me have the tea first!

Breast cancer lesson number 20: It’s amazing what cancer will take away when you least expect it

Loss and cancer are like butter and toast – they belong together. So far, I have focused a lot on the positives surrounding this frightening illness (time with friends, happy memories, mashed potato and the excuse to stay in fluffy slippers all day long). The trouble is, cancer likes to give with one hand while taking something away with the other.

By loss, I don’t mean death (I haven’t gone all philosophical on you). By loss, I mean the things cancer (or its treatment) won’t let you do any more – be that temporary or permanent. We all hear about temporary hair loss with chemo (that might turn into permanent hair loss on the legs if I’m lucky). But there are other losses lurking, waiting to crop up and catch you off guard. The only loss I was actually hoping for was a bit of weight loss, so imagine my surprise when the breast care nurse said I should prepare myself to gain up to three stone while on chemo! I give you all full permission to march me to a treadmill is that happens!  

Temporary loss is easy to handle. The loss of sensation in right my armpit doesn’t trouble me and the fact walking to the station behind my house is like running a marathon is just a small hurdle I will overcome (did one giant circuit today so am gaining strength every day). And, you could argue, not being allowed to lift anything heavier than a kettle for six weeks is a bonus!

Permanent loss is a little different. I can’t say I’ve shed any tears over the fact I can no longer use a razor to shave my right armpit (for fear of lymphoedema) or the fact I won’t be able to hold my arm out straight with a weight in it (was never very good at my Bums, Tums and Thighs class anyway). I am even learning to love my new boobie (complete with a bit of my tummy skin as well as fat) after the old cancerous one was taken away (and I will get a new nipple tattooed on eventually). No, the loss that hit me, was finding out nobody wants me to donate my blood anymore.

Image

This wasn’t the first loss that came to mind when I thought about life after cancer. After having received two texts and a letter about a possible donation appointment last week, however, I thought I’d give them a call to explain. I did a bit of research, which said it looked like things could return to normal after a good five years (maybe more for the hormone therapy). I called up thinking I was going to save them a bit in postage costs. I didn’t worry when the lady said she’d just have to: ‘go and check’. So, I wasn’t expecting her to say: ‘I’m sorry, you won’t be able to give blood again.’

Now, don’t get me wrong. I won’t miss the little blood bus, the pricked finger and the cotton wool ball you get at the end to cover the hole (I thought a packet of biscuits, a bag of prawn cocktail crisps and a glass of squash in exchange for a pint of blood was a fair trade though). It’s the fact that when you want to do your bit to give something back and the cancer says no, it’s quite hard to take. Loss is easier to accept, when you know what to expect. What else will cancer want to take from me before my treatment is over?

I decided early on in this process, however, that cancer won’t win! So, while I may not be able to give blood any more, I can act as a blood ambassador, encouraging all of those reading this who can donate blood to donate blood. It may just be one pint. You may get the bug and sign up for life (you do get a credit card sized membership card is that sways you). It doesn’t hurt much (unless you hate needles, go white at the sight of blood and find the whole thing a little bit weird – in which case I would say back away from the blood bus). It takes half an hour and it can change someone else’s world! In my mind, that makes it a very good use of half an hour.

I appreciate that it won’t feel as positive being the back seat passenger while you hand over your veins to a nurse. But, I want to turn this loss into somebody else’s gain.

Thanks all for giving me the strength to fight in the face of loss. For every thing cancer takes I will smile twice as hard. Maybe one day, it will get the picture and stop taking things away.

Breast cancer lesson number eleven: There may be leeches!

Ok, so what’s the word I was least expecting to hear today at my pre-assessment clinic? Yep, you’ve got it: leeches (followed swiftly by ‘glue’, ‘girdles’ and, that old favourite, the ‘catheter’!

You could be forgiven for thinking that the introduction of leeches into the breast surgery mix is a bit random. I certainly did. The good news is, the chances of meeting them are slim. The bad news is, they tend to come in pairs (or worse threes) if they do make an appearance.

A fascinating tissue reconstruction fact for you. New bionic boobie (sounds better than tummy fat shoved up top) gets checked every 15 minutes or so for around a day after surgery to make sure it’s still alive. If it’s looking a bit sick, in come Mr and Mrs (and possibly auntie) leech to have a play and help things along. This is a party to which only the boob gets invited, but I have been reliably informed that they will be monitored closely in case they fancy going travelling.

Today was fascinating in many ways. Here are some fun facts of the day:

1)    My lovely breast care nurse mentioned that, because the tummy is tight, it is likely I will be fitted with a band or girdle to keep it all in and make sure the ‘glue’ sticks. That and big knickers! Oh, cancer you are spoiling me.

2)    I am now a research guinea pig. I am participating in a clinical trial with the exciting title of: Multifrequency Bioimpedance in the Early Detection of Lymphoedema. This basically means they will measure the volume of liquid in my arm at certain intervals over the next five years to see whether or not they can spot changes that may lead to a rather nasty arm swelling

3)    I currently have 2.5 litres of fluid in my right arm. This means nothing (yet), but I thought it sounded like a lot of liquid for a little arm.

4)    They use a giant old-fashioned called a perometer to measure your arm. You even get to hold a plastic tool that looks like a cake polisher while you are holding it up in the air (oh the glamour). Note to self: when they say sleeveless top they mean a sleeveless top. The other test lasts about a minute and involves three stickers (one on each wrist and one on the right ankle) and a few electric wires. I was intrigued, as was the nurse getting a lesson in taking the test.

5)    Today’s blood test was completely painless. I didn’t even know when the needle had gone in. Amazed, I applauded her on her incredible skill. Her tip: she used to practise by sewing socks. A skilled phlebotomist, a seamstress and a thifty lady (who also had a similar bag to me) = my kind of lady!

Aside from the leeches and the well-sewn socks, I have established that there are many positives to being on the surgeon’s slab for about a day (beyond the induced sleep):

  • I will have a flat tummy by Saturday
  • I get breakfast, lunch and dinner in bed
  • I get a compulsory week of no exercise
  • Having the lymph nodes out on the dominant arm is actually better because you are more inclined to start moving it more quickly. Less fear of ‘robot arm’
  • There is a good month before I can do any heavy lifting (I would put kettles, groceries and hoovers on that list. The physio did suggest this could be a ‘flexible’ deadline if that helped me avoid tasks for a little longer. Lovely physio, nice tip!
  • I can wash my own hair
  • I probably won’t need to use a bedpan (quiet whoop)!
  • Some pilates moves are already part of the post-op exercise plan (albeit lighter than my normal Wednesday early morning reformer class.

Only real shame is the op part. Let’s not dwell on the seromas, nausea, wound infection or, best yet, dead boob!

Tune in for the post-surgery hospital ‘I-wish-I’d-known-that-before-I-went-in’ checklist!