27th December 2017

Janet Elizabeth Smith

16^th March 1948 – 21^st December 2017

We have lived with MS for forty years.

Janet was diagnosed in 1978 before our youngest child, who is thirty seven this year, was born, we have addressed the limitations it imposes on both our lives, and we like to think, risen above them.

After my retirement to become a carer, we have travelled widely and there have been some memorable moments:

Back packing with a wheelchair across Spain and across to North Africa, faced with the steep flight of steps in Tangiers our request for assistance was met with the comment, Aah! You have this woman?

Having boarded the wrong train at Malpensa, in Milan we were faced with the most amazing Ascensori, operated anonymously after requesting assistance in faltering Italian via an intercom on the wall.

The wheelchair and its inhabitant having to be carried bodily up the steps and into the Aeroplane, that happened twice, once in Schipool and once in Gibraltar.

So we have travelled by car, by bus, by train and by plane as well as foot.

But our the horizons closed in.

After surgery for breast cancer in 1998 the cancer we thought was in remission was diagnosed during a routine Mammogram about five years ago, surgery followed, this time not a ‘lumpectomy’ but a ‘Mastectomy’.

But new lesions appeared and following further examination confirmed as Cancerous.

You know really, when you are led from the hard back seating area away from the other patients sitting in the Atrium of the Hospital with a plaque proudly describing that it had been ‘opened in 2000 by the Right Honorable Tony Blair PM.

We were shown into a smaller room with more comfortable seating, with green the dominant colour and a large picture of a scenic lake on the wall.

Well it doesn’t take a genius to know that this is the ‘breaking bad news room’.

And it was.

Further examinations followed including MRI and Bone Scans, inevitable logistical problems, moving the patient from wheelchair to scanners were overcome by staff who were kind and caring and sensitive.

And after the test results were confirmed we were introduced to a new word.

Metastasis.

Strangely enough, a word that I had hardly heard and never used, suddenly appeared in novels, articles, commentaries and newspapers, referring to specialist and everyday matters, from bad news, to wars, to general dissatisfactions.

When we were advised as to the results of the various tests not only were shown into the breaking bad news room but the Consultant found it necessary to have a specialist nurse with him, presumably armed with tissues?

Whether they were for him or us was never clear.

One interesting outcome of this experience was the reaction from the Neurologist we saw who commented that the major issue was addressing the Cancer, not in his remit however.

The Radiologist meanwhile had noted the major issue was the uncertainties presented by the MS about which he knew very little.

Of course once you become drawn into this world it becomes clear that the Medical Profession lives in Silo’s and this makes medical intervention’s predictable depending on who is undertaking the examination:

The Surgeon’s hand reaches immediately for a scalpel.

The Radiologist’s hand reaches for the prescription called Radiotherapy.

The Physician’s had reaches for his prescription pad to prescribe drug therapy.

Each of these played a part.

The surgery was carried out with local anaesthetic but the biopsy revealed a further spread of the cancer and so it was proposed that further surgery under a general anaesthetic was required, a suggestion politely but firmly declined.

So we were referred to the Radiologist. This was definitely the worst of our experiences. The kindest thing to say was that the consultant had unfortunately missed, whether through holidays or illness,, the bedside manner module in his basic training.

We left that consultation clear in our minds that a second opinion was necessary.

Our referral was to the Northern Cancer Centre in Newcastle and the bedside manner of our consultant was impeccable and so it was agreed that further Radiotherapy might well,  ‘buy us some time’.

Over time further treatments were proposed to address the issues raised by the tumours in the spine but whether the complications from the MS or other factors were involved most of these treatments have had a fairly negative impact on the Janet’s well being.

The pain has broken through again and again and with the support of the Macmilllan Nurse and our GP, Morphine has been prescribed.

Morphine is often described as the ‘Gold Standard’ for the management of pain.

Timescales are difficult for the medical profession to comment upon. We have had both positive prognoses and pessimistic prognoses.

Our aim had been to celebrate our Golden Wedding in 2018.

It still is, but recently the body language of the medical teams, the Pharmacy at the surgery and other folk along the way who are supporting us, has changed suggesting that maybe, just possibly, we are being overly optimistic.

As indeed proved to be the case.

Our 49^th Anniversary was celebrated in a somewhat subdued manner with Janet surrounded by her family including grandchildren and she found the occasion tiring.

Within a few weeks it became necessary for support to be provided by Hospice at Home and as Janet slowly became bed fast the District Nurses introduced a syringe driver to ensure that the pain was controlled more efficiently.

Janet died on the 21^st of December 2017, she was 69 years of age.

R.I.P.