What to expect?

My partner was diagnosed with secondary bc in Nov. 2010 with mets in her liver, pancreas, lungs and bones. After having headaches, vision and balance problems in March 2011, an MRI scan revealed that the cancer had spread to her brain. She had WBR and then in July was put on Lapatinib and Capecitabine. The reast of the cancer had responded well to Herceptin and she was doing very well throughout 2011. In February this year she started getting headaches again and a feeling of numbness in her left leg. Steroids were prescribed which stopped the headaches, but the numbness grew worse until she could not move it anymore. Quickly it spread to her right leg and within a week she went from being able to walk to being permanently in a wheelchair. She is also incontinent of bladder and bowels. A MRI scan revealed a small tumour at the top of her spine which was given a single treatment of radiotherapy. That was eight weeks ago and she has not got any feeling back. The oncologist thought that most of the problems are to do with the mets in her brain, but we had hoped that the radiotherapy may have helped. At the moment she is free from any headaches and apart from a some pain in her neck and generally feeling very tired is coping well and with great courage. She has now declined any further treatment and I am looking after her at home with assistance from district nurses and regular contact with the hospice nurse. She is being incredibly brave, but not knowing what to expect next is in some ways the most difficult thing to cope with. Is this a unique situation or does any one have experience of this and can say what we might expect.

Dear Dylan, welcome to the BCC forums

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Lucy

Hello Dylan,
I am so sorry to read of your partner’s diagnosis and prognosis,and I really hope that you are still coping as well as you were when you posted originally. I am sorry that I have not spotted your post until now - the website has had a lot of teething problems since it’s revamp and then I have been away on holiday. Had someone not alerted me to your post I would have missed it.

I have no direct experience of your situtation, but in a professional capacity (I am a minister) I do from time to time accompany people on the journey from similar diagnoses to the point where they slip through the door to eternity. I think, if I am honest, that for most people who have a lot of medical intervention, a point is reached where they feel that they have had enough of hospitals and doctors and procedures and simply want to enjoy, as best they can, what time is still left them. It sounds as if your partner has reached this place - and she will have done so knowing your love and your unconditional support for her.
I wonder if your partner has any unfulfilled wishes - not big things that might now be impossible, but little things that are still achievable? I am sure that each day can be a joy and a pleasure in simple ways, that are not too tiring or demanding. Little goals that she will enjoy, coffee out, a walk in the park, the breeze on her face, the smell of the sea… you will know what she loves.

Palliative care these days is generally excellent, and the team will work with you both to ensure good quality - or the best possible quality - of life. Very often as people near the completion of their life, they become steadily more tired - often speaking of weariness - and their sphere of interest contracts from diverse and wide to only those nearest and dearest to them. Many people who have ‘near death’ experiences speak of a bright light and an overwhelming sense of well-being; some speak of being beckoned by those they love; most say they feel content to travel towards the light and are momentarily annoyed at being jerked back to our world. Knowing your love for her, your partner will be better able to face her own mortality, and when the day comes that she is ready to slip away, you will be able to face that moment bravely.

I have waffled too much, and may have missed the point of what you are asking, in which case I am sorry. Just to close - your love for your partner is really clear from what you have written, and she will rest secure in that knowledge, however the path turns out.