Breast cancer lesson 133: Embrace those tattoos! It’s radio planning time

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It’s official. I am a rebel. This morning I woke up a tattooless woman. Now, I have three!

Ok, so when I say tattoos, they are pretty unremarkable. Here’s one, and I must say it looks more like a misplaced biro mark or poppy seed. It certainly won’t be doing the rounds at parties, that’s for sure! But it is permanent and the hospital radiographer used the word ‘tattoos’ so I’m taking it. Surgery took my boob and tummy fat, chemo took the hair I spent 32 years learning how to style (it won’t come back exactly the same I doubt – let’s just hope it’s not grey) and will no doubt scar me in some other way, so I see this as radiotherapy’s way of getting in on the action and making its mark.

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As appointments go, the radiotherapy planning session is fascinating. Down in the windowless lower ground floor of the hospital I sat in a waiting room with just one other (a rare treat) ready for my biro dots. Here’s what happened:

  • It started with a quick pep talk from a radiographer. She talked me through the planning session, checked it was me who signed the consent form and took a photo (just to make sure they blast the right person in future).
  • Next, I was collected once more from the waiting room and ushered into a room with a CT scanner, a bed and a variety of plinths. The team of three (including a student) were really friendly and it was lovely to see them getting on so well. I was also amused by the party mix playing in the background, which was later revealed to be a playlist from someone’s younger days. Certainly livened up proceedings.
  • Once I’d taken my top off (again) and popped on a gown (best to wear a top and skirt or trousers rather than a dress so you don’t have to take everything off), I was asked to sit on the edge of the bed in a specific position. I then had to lift my legs up to rest against a metal plate at the end of the bed, before shuffling my bum to rest against something behind me. Bum in place, I was asked to lie down, clasp my hands together and raise them above my head, placing my arms into two arm rests. Finally, I was wiggled around (they ask you to let yourself go heavy in the bed so they do all the moving) to get my body in the correct position.
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  • Position sorted, the felt tip pen came out. Then started the art class all over my boobs! Here’s one of the marks (that thankfully I do get to wash off tonight). The marks were accompanied by little stickers and lots of shouting out of letters and numbers (apparently my arms are CYK). I believe this is to make sure they record accurate measurements so that I am positioned in exactly the same way for every dose.
  • Art class complete, the CT scanning began. It takes a matter of moments and is completely painless. I did start to get pins and needles up my arm at one point (I think this may have something to do with the ongoing peripheral neuropathy in my hands), but thankfully it did fade so I didn’t need to move.
  • After the scan came the fun part – the tattoos. A bit of ink, a few tiny pricks, some cotton wool to stem the slight bleeding (I bleed at the sight of a needle) and it was all done!
  • Dignity restored, I was handed a piece of material to bring with me to each session (I was lying on it so imagine it is to do with the alignment or protection – if you know please post here) and my times for the 15 blasts. I now know that 2pm on Monday 15 September is the end! 
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Lesson of the day? Don’t wear a white bra and shirt to a radio planning meeting. A bit of blood and felt tip do not clean clothes make! Also, maybe best not to wear sandals in hot weather that make your feet a little whiffy. 

I was also amused that the book I am currently reading started to allude to the children’s book We’re going on a bear hunt just before I was called in for my appointment. Regular readers may remember my connection with the book and the words inside. Click here for lesson 107 and a quick reminder! 

Biro dots in place, I am ready for my blasting!

NB: as a side note, my piece on running for Breast Cancer Care, has been picked up by The Guardian and is currently on the homepage and the Life and Style section. Duncan’s marvellous pink shorts have made it into the nationals! Click here to see them in all their glory.

Breast cancer lesson 125: Active treatment is like a roll of toilet paper. The closer you get to the end, the faster it goes

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Today was a big day. One last weigh-in. One last meeting with the oncology nurse (who loved her pink heart). One last chemo blood test. One last trip to the hospital pharmacy. And, one whistle-stop tour through the world of radiotherapy with an oncologist, my mum and two work experience students.

For me, the word radiotherapy means end. Yes, I will have to take hormone therapy drug Tamoxifen for ten years. But, when I walk out of the hospital on the last day of radio, active treatment will be officially over. And, just knowing that that day is no longer a day buried far in the future, is a fantastic feeling.

Radiotherapy is radiation treatment, designed to damage the body’s cells in a specific area. In my case, there are two specific areas. One is the chest wall and the other is the area above the collarbone where more of my lymph nodes are currently hiding. The two treatments are going to be run side by side, which means only 15 days of blasting! WOOHOO!

It does feel in many ways that they are saving the best treatment for last. For starters, the PICC line is coming out on Friday, so there won’t be any drugs involved. Secondly, the list of side effects is contained to one sheet (I think the seven-page chemo consent form will be imprinted on my memory for life). The main side effects are skin reactions and tiredness, both of which I would take tomorrow if it meant I could taste, sleep and not have to watch toxic drugs travel through a tube into my veins.

There are, of course, a number of other less common side effects that can present themselves even years afterwards. These include breast swelling, chest tenderness, the creation of scar tissue, rib fracture, breathlessness and, yes, more cancer (extremely rare as you can imagine). But, the benefits (risk of recurrence reduced by two thirds) make the risks more than worthwhile.

The appointment was an interesting one, with everything explained in full for the benefit of the two work experience students (and me of course). We started by talking through the treatment, the fact I have to have a planning session with a CT scan and some tattoos (the rebel I am!), followed by a ten-day wait before treatment can start. We then tested out the radiotherapy position (basically arms in the air) and had a good look at the area. The oncologist was very complimentary about my new boob (thankfully this part of the appointment wasn’t open to the 16-year-olds!). She even thought I was looking pretty symmetrical! I’ll take that!

No course of cancer treatment would be complete without the obligatory ‘banned’ list. And, unsurprisingly, there are a few comforts on there that are about to be taken away (should be used to it by now). Here’s a quick run down:

1)     No hot water when washing and no long soaks in the bath (that’s a shame now I have learned how to blow up my inflatable bath pillow)
2)     No shower gel, bath oils or bubble bath in treatment area (lovely!)
3)     No rubbing with a towel (ok, patting it is)
4)     No talcum powder (no real loss)
5)     No shaving under the arm (there’s no hair there anyway at the moment!)
6)     No perfumed moisturiser on the area (Doublebase or E45 is recommended)
7)     No tight-fitting clothing (what will I do with all those boob tubes J)
8)     No under-wired, lacy or tight bras (surgery sorted that out long ago)
9)     No swimming (the opening of the Olympic pool so close to my house still hurts me)
10)  No sun exposure for a YEAR (probably a good thing given my tendency to go red just looking at the sun)
11)  No hot water bottles (I think I should be ok in August!)

One radiotherapy planning appointment, one CT scan, three tattoos and 15 blasts of radiotherapy stand between me and the end of active treatment (please note the distinct lack of needles or scary tubes). That is, once I have navigated a little thing called THE LAST CHEMO on Friday! Wish me luck!

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

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 34: Take one day at a time

Hermione Granger (of Harry Potter fame) has something every single cancer patient needs. By this, I don’t mean books (although you get given quite a few), a wand (wouldn’t say no, though) or intellect (although it does come in handy when tackling those cancer terms). By this, I mean a time turner. Basically, if you ever need to be in two places at any time, you can.

In the absence of said magical device, this morning was a little bit challenging. My task, on the face of it, was simple. Visit the Assisted Conception Unit at 9am for a blood test with an anaesthetist and then head over to oncology for a 9.45am with a cancer doctor. You can usually get quite a lot done in 45 minutes. Not so in hospital. Blink and you can miss a whole day in cancer land.

Armed with a cup of tea (second of the day as first was one designed to warm the veins), five layers and a scarf, I was toasty and ready for my blood test at 8.50am. Little did I know, it would be 11.20am when they actually managed to squeeze me in to take it (by which time I had changed departments, undressed for the oncologist, redressed, and pretty much lost the benefit of all the tea drinking). The good news? He got the blood. The bad news? It wasn’t easy. The good news? At least I can handle the pain even with bad veins. The bad news? Even with a high pain threshold, it still wasn’t very nice.

Why is it that time always seems to disappear quickly when you need it the most? Running between departments certainly doesn’t do much for the stress levels, so first lesson of the day is: one day, one appointment. Any more and you quickly develop an unhealthy obsession with clocks (which all conveniently like to tell different times). In fact, I think my Blackberry likes to tease me by moving forward a minute a day just to play with my mind.

Albeit in the wrong order, I did get to both appointments and, am now, one step closer to the end of my treatment. Abraham Lincoln once said: ‘the best thing about the future is that it comes one day at a time.’ All I can say is, thank goodness for that. Today, I got one long look into the future. Eighteen weeks of chemotherapy followed by five weeks of radiotherapy. My reward for passing this endurance challenge? Five years of anti-oestrogen drug Tamoxifen. If that future came all at once in a giant high-dose injection, I think my body would probably start walking… with my mind not far behind. Put it this way, left arm certainly wouldn’t produce a vein for that one.

Having had a whistle-stop tour through the world of cancer drugs and its wonderful list of side effects (starting with: ‘you will lose your hair’), it didn’t take long for the subject of time to rear its head once more. Because the cancer they extracted so neatly from my body was high stage and aggressive, they want to get going… as soon as possible. For someone still strapped into a body corset for the next three weeks and still currently injecting herself with fertility drugs in any part of her body that doesn’t feel tender (there aren’t many of those left), the prospect of swapping one set of drugs for another lot (while also still trying to laugh and cough without my tummy hurting) is not particularly inviting. Guys, this is really hard – and don’t let anyone tell you any different.

It looks like my next two weeks will be a delicate juggling act of blood tests (both fertility and cancer), appointments (scans, tests and assessments), a quick anaesthetic to collect some eggs and possibly the insertion of a PICC line. Fertility and cancer are fighting for my attention and they both need time. Trouble is, by the looks of both schedules (and the current uncertainty surrounding egg harvesting day) neither really wants to wait in line. Far from avoiding two appointments in one day, I’ll be hard pushed to avoid two at the same time. If life can’t magic up a time turner (or just a few extra hours in each day), I will just have to get used to the fact that the day I wake up expecting might not be the day I end up experiencing. 

The future does looks brighter with a game plan, and I just have to accept that, for the foreseeable future, my time is not my own. All I can do is take one day at a time. If I can get through this unscathed, I will give myself the best chance of survival. Then, I might just have time on my hands – or on my side – once more.