Today, 25 Nov, the nurse specialist phoned me to say that the pathology discussion with the consultant oncologist had decided that I could start Tamoxifen asap and that she would arrange for my GP to prescribe it next week. We discussed side effects: of developing a predisposition to deep vein thrombosis so getting used to wearing flight socks on long trips (which I already do); having menopausal symptoms (which I've already been getting so no wild excitement there); being all over the place for the first couple of weeks having hot flushes and the rest (again, a familiar scenario!); and of expecting womb thickening but having periods taper off gradually. I would be on Tamoxifen for at least five years. Top tips were to counter experiencing the early side effects at embarrassing times of day, take the pills at night; and to reduce future the risks of cancer recurence and DVT risks, keep up the exercise - walk, walk, walk.
We also ran through how far I had got in arranging my postoperative homecare and/or residential care. I've been working on it for a month but really got not very far. To help with timescales, the nurse explained I would be back for radiotherapy after 5-6 weeks, depending on how the DIEP flap breast reconstruction wounds were healing - but sooner rather than later; during the early weeks of travelling in a car, I could ask the DVLA for a dispensation not to wear a seat belt because of the tummy tuck scar (terrifying on local roads, so I think I'll invest in a cushion instead!); and I would be doing a lot of physiotherapy at St John's and they would be organising my post op care, not BGH. But, in terms of residential care, because home care might not be possible given I have a contaminated water supply that might poison/infect wounds not just on me but on any carers helping to look after me, I would have to work something out for myself with a private healthcare provider in Edinburgh or Glasgow because there was nothing in the area for under 65s or younger generations without permanent disabilities. All this info was a huge help because it narrowed down my search for residential care (after one week postoperative in hospital) to, say, three weeks in a residential home and then back to the contaminated wilds of the Borders with less home care, ready for radiotherapy.
The thing I've found most frustrating is the number of private healthcare companies that have no idea what nursing services they provide. So my bizarre 'youthful' residential care search has got as far as a pharmacist on PPP's 'Health at Hand' helpline. Watch this space.
