[CANCER] So what’s been going on?

[CANCER] So what’s been going on?

I am struggling HUGELY with fatigue – I feel like I spend my whole week just about managing to fit in work (and yes, I’m still trying to do too much)/making food during the week, along with swimming/yogalates and the odd Pokewalk to try and improve my physical and mental health, taking Friday off (as leave) at the moment to give myself a breather, and using the weekend to do a bit more sorting (onto the last bits of paper, digital sorting, pre-writing cards, etc.) to take the pressure off later in the year… and seeing the occasional person, attending the odd wedding!

What do you know about Metastatic Cancer?

Not forgetting that yesterday was Secondary Breast Cancer Awareness Day – a lot of serious advocacy work going on, because we can feel time running away through our fingers waiting for new treatments, awareness and policy change:

 

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What do people with MBC need?????????? ????????? I’m going to paraphrase from the awesome campaign #MetupUK are running at the moment…….??????? ????????? What we need is;????????? ????????? ?? Greater Awareness of the disease????????? ???????? ?? A wider understanding of the symptoms and signs of a spread????????? ????????? ??More access to drugs that can extend our lives????????? ????????? ?? Policy change from NICE. (Our lives are worth more than the £30k limit they put on them)????????? ????????? ?? Accountability from the charities, drug companies and NICE. ????????? ????????? With the right treatment we can all be living longer than the averages we’re give. We all want to be alive. We just need help in getting the message across to the people who can change policies.????????? ????????? If you want to know more, please visit www.metupuk.org.uk????????? ?.????????????????????????????????????? .?????????????????????? .?????????????????? .?????????????????? .?????????????????? .?????????????????? .?????????????????? .????????????????????????????????? .??????????????????? #metastaticbreastcancerday #bcam #secondarysisters #secondarybreastcancer #metupuk #cancerthriver #metup #metastaticbreastcancer #breasties #walkingmiracles #dyingforacure #womenwithcancer #stageivneedsmore #researchnotribbons #thriver #truecancerbodies #cancersucks #cancerrightnow #fuckcancer #emmaVcancer #ybcn #thegramgang #BreastCancerAwareness #standup2cancer #su2c #breastcancerawarenessmonth

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Oopherectomy

So, I’ve had another appointment with the gynae clinic about my prophylactic oophorectomy. There are twofold risk-reducing reasons for this:

  1. Ovarian cancer is hard to detect (and I think I’m at higher risk now I have secondaries, although I don’t have the BRCA gene) before it is quite advanced
  2. The level to which your cancer is fed by oestrogen is measured out of 8. My tumours are 8/8 fed by oestrogen, so removing the ovaries (main producer of oestrogen in the body) reduces the risk hugely.

I’ve had my pre-op, for the surgery that was scheduled to be for September/October. I’m awaiting the robotic surgery (less risky with my higher body weight), which apparently only occurs alternate Thursdays (4 patients per day), and will be given a date as soon as a new list is signed off (hopefully November, or at least before Christmas).

The benefits of robotic surgery compared to more traditional types of surgery are numerous and include; less trauma to the body than routine surgery, significantly less pain for the patient, less blood loss resulting in fewer complications, less anaesthesia, less scarring, less long term side effects, improved cancer outcomes, a shorter hospital stay and a faster recovery time.

I’m struggling with so many questions related to treatment, home renovations and what work does/can look like, but trying to just keep deep breathing and hoping it will be soon – so I can recover in good time for New Zealand.

Living with Less Stress – with Cancer

I’ve been continuing on this course with Maggies. We meet Tuesday morning for 6 weeks – and with my surgery being delayed, maybe I’ll get to go to the remaining 3.

I think I’ll post more on this at the end of the course – but:

  • We’ve talked about sleep A LOT. Even knowing how normal it is to be waking up frequently as you age (and chemical menopause has aged my body by about 15 years) and to not keep stressing at frequent wake-ups has reduced the stress.
  • We talked about the fact that I haven’t been able to get that excited about New Zealand … because I’ve got used to the idea (particularly over the past couple of years), that I don’t get a run of good news, and there’s always potentially something that may get in the way of the trip actually happening… and I think mentally it will put me in the best place for coming back to start teaching again (aside from anything else). I’ve also become very used to my home as a ‘safe space’ in a world of unpredictability so…
  • Learning how to breathe, and taking time for rest/relaxation is important .. and my job at the moment is still recovery (you know they say it takes 1-2 years for your body to recover from chemotherapy, and I’ve 2 lots + a whole lot of radiotherapy which friends who’ve “only” had radiotherapy seem to be struggling years down the line). Can’t control that though I’ll give it a darn good try…

#100Voices

Do you remember that last year, when I was just starting investigations into my spine, I went on a day art event with The Christie – seeking to sum up ‘the cancer experience’ in one word, and then creating an acrylic panel for that. Well, it’s gone up:

I’m the orange ‘unsettling‘ off to the far right if you’re watching the video.

Saying Farewell

You may have seen that we said farewell, so long (not goodbye, actually) to the breast team at Stepping Hill Hospital, so I’ll be adding Wythenshawe Hospital to my collection of hospitals visited at some point soon!

Possible Lymphedema

That visit to Wythenshawe may be sooner rather than later. I’ve noticed over the past few weeks that the back of my left hand has felt bruised (and thought very little of it), but over the last week or so I have definitely noticed that the back of my hand also looks swollen. This could mean that I have developed lymphoedema – I was at high risk as I had all my lymph nodes removed on my left side when I had my mastectomy. We’ve always been told to try and prevent lymphoedema, but not to fear it … but it will bring more treatment/appointments with it (if that’s what it is).

Anyway, it looks something like this, so if it is, good to catch it early…:

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