July 2017 – Not A Mouse This Time

Two days ago I had my sixth, and final (ever, I hope) chemotherapy infusion. Both of the last two infusions have gone really well. The nurses have to find new veins each time, which they are superb at doing, as the veins used are now about a third of their normal size. Apparently, they’ll take about a year to regrow. One of my veins is also discoloured. Shows just how bad ass those chemo drugs are.

The cold cap hasn’t been too bad, it’s certainly much more tolerable in the warmer weather. It’s also amazing how much easier it all seems when the end is in sight. And wearing Wonder Woman pants gave me added super powers.

After my last infusion this week, I had big hugs and thanks for all three of the chemo nurses on the chemo suite. Their bedside manner, care and patience have been exemplary.

Treacle – a preferable variety

In terms of side effects, #5 was the easiest so far, so I have high hopes for the next couple of weeks as I recover from #6. I’m pretty much housebound for 6 days once the steroids wear off and the nausea, fatigue and leg pains start. I also have the joy of hot sweats, which in our heatwave of 35 degrees was not much fun! So, it’s very hot and sweaty treacle, but not as thick as the previous variety.

The fatigue is cumulative, but I’ve just learned to pace myself and get lots of rest. One of the most long lasting side effect seems to be how weird my mouth feels. It feels slimy. One of my favourite drinks in the hot weather is an iced coffee, so I treated myself to one in the heatwave. Yuck! I nearly spat it straight out – what a waste of £3. Apparently my taste buds should return to normal after a month or so. I can not wait to enjoy a cup of tea again. How you come to appreciate the joy of simple pleasures once you’ve lost them.

And so far, my finger and toe nails have been ok. I’m wearing dark nail varnish to protect them, and wearing Marigolds for all household chores. Fingers crossed that don’t start to lift off in the coming weeks.

Being normal(ish)

After #5, my good week was great – I’ve seen lots of friends and work colleagues, it’s been so lovely. I feel very lucky. Been to a couple of birthday parties too, which has all felt like normal life. It takes me quite a bit of courage to do some of the things that used to be normal. I’m not much of a mingler at the best of times, and without Dutch courage, parties and events can be especially daunting. Can I talk about anything else but cancer? Will others be bored of me? Is my cancer the most interesting thing about me? Will they all notice my thinning hair?

But I am determined that cancer will not stop me doing what I want to do. It’s about finding ways through. For instance, I feel very self conscious in my wig, so I’m wearing head scarves instead. It feels more me and works for me. My hair’s not too bad, the torture of the cold cap has paid off. But I don’t want a sunburnt scalp and I have a definite bald patch.

I’m continuing to exercise, including spin classes, on my best days. Exercise helps me hugely, mentally and physically.

Radiotherapy

No hanging about with Project Lumpy, we’re on to planning the next phase. Yesterday I was at the Royal Free where I will be having my radiotherapy. Lots to learn, but all seems much more straightforward than chemotherapy.

The hospital team were great, very welcoming and informative. I met my consultant oncologist, Dr Stewart, and the team of specialist nurses and radiographers who will plan and administer my treatment.

Radiotherapy starts Monday August 7th, and I go to the hospital every week day for four and a half weeks, so 23 days of treatment.

Whereas chemotherapy treats the whole body, radiotherapy is a targeted treatment. High energy x-ray beams are used to target any remaining cancer cells. As the radiation can also affect healthy cells, and brings with it its own cancer risk, the medical team plan the radiotherapy to target it to an exact site in the body. Consequently, yesterday I had my first ever CT scan (not scary at all compared to MRI) and learned how to lie still and flat with my upraised arms in rests and lasers angled on to my torso.

The CT scan produces internal images of my body so that the radio waves can be targeted to the tumour site and lymph nodes, whilst trying to avoid my lungs. Fortunately, as my tumour is on the right side, my heart will be well clear. To position all of this accurately every time, yesterday I had my first ever tattoos! Three little dark blue dots, one on either side of my rib cage, and one in my cleavage.

Possible Side Effects

During radiotherapy, I am likely to get tired, especially towards the end of treatment as my body will have had its full dosage of radio waves. I’ve been warned that the fatigue is usually at its worst two weeks after radiotherapy finishes, but then wears off. So, that’s looking like mid September. The skin also gets burnt, so I will be liberally applying E45 cream to the site and wearing soft bras and cotton clothing. I’ve been advised to keep the site covered from the sun for a year after treatment, as it will be new “baby” skin, and quite fragile.

Lymphodema risk increases, and my ribs are more likely to break than bruise. Better be careful on my bike then! It may scar my right lung, but this won’t affect my breathing.

The longer term side effects can be 20 years from now, and are potential lung and heart damage. However, as Dr Stewart explained, much of this is based on old data, when radiotherapy was less technically advanced. One of the radiotherapists told me that the big radiotherapy machine costs about £2m, and the level of technology involved is astounding. Quite amazing.

But despite all the possible complications and side effects, the consultant told me that radiotherapy reduces the risk, on average, of cancer returning from 15%/20% to less than 5%. Worth doing then.

Tamoxifen

Another phase of Project Lumpy is taking the hormone therapy drug, Tamoxifen. I’ll be starting this as the same time as radiotherapy. Really pleased these will be happening in parallel. Whilst this may add to the side effects I have to manage for a few weeks and months, it all hastens the time when I can start to define my new normal.