My A to Z of the past seven months

It didn’t take me long to put together this A to Z of the past seven months. It’s just a random snapshot. I didn’t think about it too much. If I’d done it an hour earlier, it would have been different. An hour later, it would be different again.

A: anxiety, appointments, antibiotics, appreciation, awe, Andy

B: bald, blanket, bike, blogging*, Breast Cancer Care

C: consultants, chemotherapy, cellulitis, compassion, confusion, children, Christmas

D: drugs, dying, decisions, dad

E: exercises, emotions

F: flowers, fear, fate, family, friendship, fellow travellers

G: Glasgow, Google, grateful

H: hospital, hope, humour

I: inadequacy, ignorance, injections

J: journey

K: kindness

L: letrozole, lymph nodes, life, laughter, love, luck, laptop

M: mastectomy, MRIs

N: needles, numbness

O: operation

P: Paris, panic, physiotherapy

Q: questions

R: radiotherapy, results, recurrence (worrying about), resilience, relief, rest, recovery, reconstruction, Ruth

S: surgeons, surgery, scars, scans, shock, sadness, smiles, Scrabble, Sugar Loaf

T: tiredness, tears, tennis

U: ultrasound, underwear

V: veins, visitors, victory

W: worry, wigs, writing, walks, wishes, Wimbledon

X: x-rays

Y: yesterday, yearning

Z: zoledronic acid.

That’s a bit of a weak finish but everyone always struggles with Z.

*My posts are already becoming less frequent and I guess I’ll stop blogging at some point. I’m not there yet, though. Follow me if you want to be notified when I post something new.

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Breast cancer “reminders”

Quite apart from coping with the emotional side of having had breast cancer, there are plenty of physical reminders to make sure I don’t forget what I’ve been through any time soon.

I was thinking I would list the various side effects I’m experiencing in order of annoyance but that’s hard to do. I have different types and levels of pain or discomfort in different areas and each side effect is annoying in a different way. Here goes.

Peripheral neuropathy. I’m still experiencing pain – numbness, tingling and throbbing – in the balls of my feet and toes as a result of the nerve ending damage caused by the chemotherapy drug paclitaxel. This comes and goes, ie it’s not constant, and while it is improving, on some days – if I’ve done a lot of walking, say, or have worn heels – it can get pretty bad. I can’t remember when it last woke me up at night but it’s usually the first thing I’m aware of physically when I wake up in the morning. This can take up to a year to get better, although in some cases it’s permanent. So I’m guess I’m playing a waiting game.

Post-surgical pain. I still have pain – numbness, tingling (but different from the feelings in my feet) and a burning sensation – in the upper inner part of my right arm and what feels like muscle pain where the reconstructed breast meets my chest and below and behind my armpit. This is much less painful than the peripheral neuropathy but it is annoying, as this pain is more or less constant so I’m aware of it most of the time. I’m pretty sure the muscle pain – or what feels like muscle pain – has got worse in the past few days. It’s at its worst when I wake up, especially if I’ve rolled on to my right side while I’ve been sleeping.

The numbness and tingling is caused by nerve damage that happens during surgery to remove lymph nodes from the armpit area. The effects subside as you heal – within about three months for most people – although they can last or become worse months after the surgery. The numbness and tingling is definitely not as bad as it was but it’s still annoying. Another waiting game.

Breast lymphoedema. I saw the radiation oncologist on Monday and, while the cellulitis (It went downhill from there) has evidently cleared up nicely, she mentioned the dreaded L word – yes, lymphoedema – with regard to the persistent swelling in the breast area. Early treatment is recommended to help prevent hardening of the tissues and reduce the risk of you getting cellulitis (please, not again!). So I’m to have a course of manual lymphatic drainage (up to fifteen sessions over up to six weeks), a very gentle form of massage that allows the lymphatic fluid that’s collecting and causing the swelling to be redirected to – untouched and undamaged  – lymph vessels in the vicinity where the fluid can drain away more easily. Also, later today, I’m to be fitted for a lovely compression bra. I’m assuming this will be an even sturdier version of the post-surgery bras that I’ve really never stopped wearing since my op on 19th December – other than for a few days during radiotherapy when I had cellulitis and a bad skin reaction to the radiotherapy – because there’s always been some sort of swelling or another. Compression treatment for lymphoedema puts pressure on the area where you have swelling, and the pressure helps the lymph to flow through the lymph vessels. It also acts as an extra force for the muscles to work against, which helps the fluid to drain out of the area.

The swelling is not painful in itself, I suspect mainly because I have no feeling in most of the area in question. At rest, however, my inner upper arm rests against part of the swollen area and this aggravates the already tender upper arm.

By the way, breast lymphoedema I can cope with (Fear of lymphoedema); please let it not spread to my arm.

Cording. Now that the cellulitis has cleared up, I can start having physiotherapy again on the cording, this hardening of the lymph vessels to form tight bands under the skin from the chest or under arm down to the elbow and beyond that can happen after breast cancer surgery involving the axillary lymph nodes. The cording is not painful as such but, again, that’s because I have limited sensation in the affected area. I also know to limit my movements so that it doesn’t hurt where I do have feeling. It’s only painful in those areas when I forget and try to stretch further than I am able to. With physio and the arm and shoulder mobility exercises I’m continuing to do every day, the cording should go over the next few months.

Hip-to-hip scar. I was really nervous about the potential consequences of the surgery to get the fat and blood vessels from my abdomen for my reconstruction. While the immediate aftermath was tough, it’s the part that’s giving me the least trouble now in terms of ongoing post-surgical pain and/or discomfort. The scar that runs from one hipbone to the other has healed well really well (there’s just one small area of less than an inch long where it’s a bit messy) and while the surrounding skin can still feel very tight and hard in some places, there’s no pain. Discomfort, yes, but not pain. I’ve been shown how to massage the area above the scar to loosen the skin up and I do abdominal stretching and strengthening excercises at least twice daily. Things should continue to improve.

Lost toenails. Chemo played havoc with my nails, especially my toenails (Note to self – keep your toes covered when trying on shoes). The nails on my two big toes are in the process of growing out and the nails I lost on four other toes are growing back in*.

I think that’s it on the physical side effects front.

And then there are the drugs:

Hormone tablets. I take one tablet of letrozole every day and will do so for the next five years, when I’ll move on to a different hormone therapy, for another five years. I count myself lucky in that I seem to be tolerating letrozole very well; I have no side effects to speak of.20160311_100210

Calcium and Vitamin D supplements. Letrozole can cause osteoporosis; the calcium and Vitamin D supplements I take daily are to counteract the effects of the letrozole in this regard.

Iron tablets. I’m still taking these three times a day for post-operative anaemia. I stop taking them in a few days, three months after my op.

Zoledronic acid. I’m to have my next cycle of the bone hardening drug, zoledronic acid, this coming Monday. Thereafter I’m to have it every six months for as long as I’m on letrozole. This drug – and other drugs of its kind (bisphosphonates) – is used in the treatment of post-menopausal women with early-stage breast cancer as it’s been shown to lower the risk of them developing osteoporosis and of breast cancer spreading to the bones. This treatment is given via an iv drip in the chemo unit at the clinic.

Now none of the lingering side effects I’ve described above is so painful that I have to take painkillers. And I’m otherwise quite well, if still pretty whacked. And it’s still early days and hopefully everything will get better over time. But for the moment these things are annoying and they do cause pain and/or discomfort. They – and the drugs and exercises that I still need to take or do – are obvious reminders of what my body’s been through over the past seven months. I used to think I’d been quite lucky in terms of physical side effects. Reading back through this latest post, now I’m not so sure. I guess it’s all relative and no-one said it would be easy. One thing is certain, though. Regardless of how I deal with the emotional side of things, physically I’m really not going to forget any time soon that I had breast cancer, am I?

*My fingernails are looking great, I’m relieved to report.

“…3, 2, 1 and relax. Congratulations!”

I’d heard the radiographers count down from three then tell me to relax dozens of times during the 15 sessions of radiotherapy that I’d already had.

I’d to hold my breath seven times during each session as the radiation was delivered (A very strange position to be in (Radiotherapy Part 1)).  “3, 2, 1… and relax” was what the radiographers said through the intercom at the end of each hold to let me know I could start breathing normally again.

This time was different. It was Friday 26th February and it was a big day. It was my 16th and final radiotherapy session and it marked the end of the hospital-based phase of my breast cancer treatment. That’s why the radiographer guiding me through that session added “congratulations” after his final instruction to relax. Now for all I know they say that to everyone at the end of their last session. Regardless, I really appreciated the gesture. The moment deserved to be acknowledged. I’d been preparing for, having or recovering from treatment for seven months. Since last July, I’d had chemotherapy, major surgery involving a mastectomy, immediate breast reconstruction and axillary lymph node clearance, and finally, radiotherapy. Less than a month after I’d had surgery, my dad died. His funeral was in Glasgow on 1st February, I came back home to London on the 3rd and started radiotherapy on the 4th.

The day of that final session was an emotional one. I’d been in tears within seconds of waking up, from relief at having got to this point. I’d been expecting to burst into tears the second my last radiotherapy session was over but I was distracted by the radiographers chatting to me about how I felt the sessions had gone, asking about my plans for the rest of the day, getting me to sign the treatment completion form, warning me that the side effects from radiotherapy can continue to happen for another couple of weeks and giving me a leaflet about finishing treatment. My composure didn’t last long, though. I’d to have dressings reapplied to where my skin had reacted badly to the radiotherapy and I started to lose it as I walked from the radiotherapy suite over to the treatment room. Once inside, I sat down on the nearest chair and out it came. The tears only lasted a minute or two and I think I can be forgiven for feeling somewhat overwhelmed by the occasion. The radiography assistant who applied the dressings was very understanding. I guess they’re used to it.

There were more tears throughout the day when the enormity of what I’d gone through would hit me or I’d think of how different the day would have been if my dad had been around to share it.

I’m glad I waited a while to write this. I look back now and recall a lovely day. Cycling back from my appointment in the sunshine later that morning (Bike 8 – Car 7. Victory is mine.), I remember feeling immense gratitude towards everyone involved in my treatment. Just as I got back home I bumped into a neighbour I hadn’t seen for a while and we’d a bit of a chat. I got a massive hug from our cleaning lady. I had lunch with my tennis buddies, tea later in the afternoon with some good friends and lots of people got in touch to say congratulations. Andy, the boys and I finished the day off with our traditional celebratory family meal. You know the one (More good news)… lasagna, garlic bread and salad. This time the champagne was better than usual. We toasted ourselves and we toasted my dad.

In the end it was a day of huge relief and quiet celebration. It’s a day I won’t easily forget.

 

It’s not over ’til it’s over

The hospital-based phase of my breast cancer treatment has finished but there’s still lots going on. My final radiotherapy session was a week ago now (Bike 8 – Car 7. Victory is mine) but by tomorrow afternoon I’ll have been back at the centre every day this week except today. Given that I started radiotherapy on 4th February, that means I’ll have been there every weekday – including two days as an in-patient – for precisely a month. No wonder I’m tired. And there’s more to come.

On Monday, I had my post-radiotherapy appointment with the consultant oncologist who organised the radiotherapy treatment. Also on Monday, I had to have new dressings put on those parts of the irradiated area that are worst affected by the radiation. On Tuesday, I had a six-week check-up with the plastic and reconstructive surgeon. On Wednesday, I was back at the radiotherapy department to be checked over and to have fresh dressings applied. I’ll be there again tomorrow for the same.

Let’s start with the “radiotherapy-induced skin reaction”. This is really common in people receiving radiotherapy (Sunburnt backs, patchwork dressings and crop tops (Radiotherapy part 2)) and can involve redness (yes), dryness (yes), itchiness (yes) and skin breakdown, ie cracking or weeping (not quite, although one or two areas are still at risk). The reason they’re keeping a close eye on things is that radiotherapy side effects can continue to develop after treatment ends and indeed can be at their most severe around 7-10 days after your final session. While the radiographers don’t think the skin will break down now (if it did, I’d be at increased risk of infection), they’re continuing to take precautions until the 10 days are up. Better safe than sorry, especially with my record on infections.

On to Monday’s meeting with the oncologist. She examined the irradiated area and said she was “hopeful” the infection that had me in hospital for two days on iv antibiotics was resolved (It went downhill from there). I finished my course of antibiotics later on Monday and there’s been no flare-up, so it’s good news on that front.

There’s still swelling/fluid build-up in the reconstruction and under my arm and the cording  (where the lymph vessels have hardened following the removal of the axillary lymph nodes) there has got worse. The cording now stretches from where the reconstruction meets my chest to past the crook of my arm. The oncologist suggested that a massage treatment called manual lymphatic drainage or MLD might help with the swelling. From what I can tell, this could require sessions three times a week or more for up to three weeks. So much for finishing treatment. Except now, of course, instead of treating the cancer, we’re treating the side effects of cancer treatment. Major difference. The physiotherapy I was having – and loving – for the cording is on hold until the skin reactions from the radiotherapy clear up. The MLD wouldn’t start until then either.

As for the plastic surgeon, there’s good news there in that she didn’t seem overly concerned at the appearance of the reconstruction and surrounds… despite the swelling, redness, inflamed scars and indentations. She did agree it was not the “lovely” – my word, not hers – thing that it was in the aftermath of the operation. However, she said reassuringly that while it might take six months (yes, six months!) for everything to settle down and will likely require a second round of surgery to tidy things up, “I don’t think you’ll have any problems” in the longer term. Phew. My claim to fame is that she took a couple of photos for her collection. She didn’t often get to see her reconstructions like this, she said, ie in their full, immediate post-radiation, scarlet glory! I’m really not used to having this part of my anatomy photographed but I was happy to oblige.

The abdominal scar has healed really well. I got some advice on how best to massage the area above the scar to loosen it off (it’s still quite tight) and on scar care in general. Also, not that I did that that much of it before, but I can start running again. I’ve to wear two bras, though, a regular sports bra and a crop top!

Next week is shaping up to be a lot quieter on the appointments front. Hopefully the radiographers will sign me off at the beginning of the week and then I’ll have nothing until the following week when I’ve got appointments with the two consultant oncologists involved in my care. The oncologist responsible for the radiotherapy – a clinical oncologist – will review how the skin reactions and swelling are looking and perhaps I’ll get an idea of when I can restart physio and perhaps start this new MLD treatment. The oncologist who’s been responsible for all my drug treatment to date – a medical oncologist – will arrange a date for me to come in to the chemo unit for my next cycle of the bone-hardening drug, zoledronic acid (Breast cancer does indeed “come with baggage”). I’m to have this initially every three months and then every six months during the five years I’m on letrozole hormone therapy. I had the first cycle with my final chemo session last November. It’s hard to believe that was only three months ago. It seems like an absolute age.