Lots going on

Yesterday’s review of the CT scans (last week’s and December’s) with the Oncologist confirmed that the cancer has spread significantly on my left lung (but not anywhere else so far), and the life expectancy prognosis is still 2 – 4 months (although this is acknowledged to be imprecise and variable for everyone).  I discovered a lump under my left armpit for which the Oncologist has recommended a blast of radiotherapy.  This won’t apparently have the same side effects as the chemotherapy – just soreness – and I await the appointment.  I also have another chest infection and will apparently be very prone to further ones, so we’ll have to rigorously enforce the no visits rule from anyone with coughs or colds and the hand disinfecting on arrival.

I’ve started on weekly acupuncture sessions and am awaiting an appointment for day-care sessions on ‘strengthening breathing’ at the hospice.  The stair lift has been fitted and various aids and adaptations from Social Services have arrived on schedule.  I’m not despondent and am looking forward to some days out when the weather is fine and Karen is a bit stronger.  Work on the book has been going well (although it would have benefitted from more editing) and I’ve just got the epilogue to amend before passing it over for Karen to do the pre-publication work.  Next big jobs are putting the remaining archive papers in chronological order and feeding into the file boxes for transfer to the local studies library and chucking other papers into recycling bags (or shredding).  Any volunteers for helping with these jobs will be gratefully received.

Despite everything, I’m feeling (and looking) very well (apart from the breathlessness), am eating well, sleeping well, not losing weight, and am not in pain (except when I forget to take meds on time) so it’s still difficult to accept that this is really happening.

All is calm now

Karen had her appendix out last Saturday and was discharged on Sunday.  It was ‘key-hole’ (so-called) surgery which means three holes in her abdomen rather than one big cut. It’s been painful for her walking about of course and she was promoted to patient no. 1 with Peter promoted to Carer no. 1 (what a good man he is) and me relegated to patient no. 2.   Given all the support they’ve both given, I’m letting them off doing anything for Mother’s day.

Although we planned a quiet recuperative week, it turned out to be very busy.  We had stair-lift companies coming to measure up and quote, a second visit from our new cleaner, a Tesco food delivery, a visit to St Ann’s hospice, a consultation with an acupuncturist (for me), a visit to a garden centre (me in the wheelchair and Karen with a walking stick), my CT scan at the Christie, and some visitors when Peter needed a break.  This might not sound a lot to some people, but for us it was hectic (given that getting up and having a shower takes nearly half a day).

Karen is well on the mend now, I’ve been promoted back to patient no. 1 and Peter and Jenny are having a weekend away (Jenny’s mother died a week ago).  I’m making progress on the book – just final editing to do now, and we’ll be open again for visitors soon (although we’ve a lot of appointments this coming week) - I’ll be in touch.

           

You won't believe it!

The latest episode in our family drama is so unbelievable that if it was part of a TV soap opera, the script would be rejected as too far-fetched.

When Karen got back from Northampton on Monday evening, she had back and abdomen pains and then started vomiting violently (around 11pm).  Within a short space of time she was in excruciating pain and thought she had kidney stones again (first experienced 4 or 5 years ago).  After trying the out-of-hours doctor service (too slow) I eventually got an ambulance.  She took some of my liquid morphine (which the paramedics were not happy about when they arrived, but it brought down her pain).  Fortunately Neil and Christine were able to come round and Christine went to MRI in the ambulance with Karen and Neil stayed with me until I had calmed down.  After 5 hours in the hospital, Karen was discharged (Neil brought her home) with antibiotics and pain killers – they said no kidney stones, but possible diverticulitis - and gave  instructions for her to be seen by GP in 48 hours.  I had to register her with my GP, which couldn’t be done over phone of course, but Vera was available to take me to the surgery to fill out all the forms.  GP came on Thursday morning and diagnosed possible appendicitis and arranged for re-admission to hospital.  Fortunately, Peter was here by then (now finished working in London) and he was able to take her in. 

Peter took me in the wheelchair to visit her today and she has been put on the list for appendix to be taken out tomorrow sometime.  She looks (and feels) OK now but is not happy about having an operation.  However, it seems the best solution because otherwise the problem will recur and appendix might perforate.  So, Peter is supporting both of us now, and his partner, whose mother’s death is imminent from a brain tumour.  If re-incarnation is true, we must have all done something really terrible in our previous lives.

I know everybody is keen to visit and help, but at the moment, it’s hard to think of things people can do.  We have plenty of food in and mainly just want to rest.  I’m feeling OK and the steroids are helping with the breathlessness.  I can cook and do things for myself and am managing to stay positive.  I have a CT scan on 25^th and review meeting with Oncologist on 30^th.  Should then be able to get a more accurate prognosis.  I’ll be in touch about visiting next week when I know when Karen will be home and how much help we will need from then on.  

           

Bad News

The outcome of the review meeting with the Oncologist yesterday was that the chemotherapy has not been effective and there is no point in continuing with the 4th dose (particularly since it makes me feel so ill for so long).  The breathlessness and persistent cough are all cancer symptoms that should have been alleviated by the chemo but weren't.  I'm pretty relieved about not having to go through any more chemo I must say, but also pretty pissed off that so much time has been wasted on it.  All that can be done now is palliative care (including steroids) and possible alternative therapies (acupuncture, meditation etc). 

My life expectancy will probably only be around 2 - 4 months (June/Julyish) and there is no way of predicting how quickly I will deteriorate.  So, its a bit of a blow (to put it mildly) and I just hope I'll have time to finish the book and say goodbye to people before I go into a hospice, although I will have a go at some alternative therapies.

We’re still coming to terms with it here and have an appointment with the Macmillan nurse tomorrow.  When I’m ready to talk more about it I’ll let people know. Sorry this is so stark.

Not as bad as expected

I started to feel human again on Friday and have continued to feel better each day, apart from still being breathless after the slightest exertion.  So I wasn’t ill for as many days as from the 2^nd dose of chemo (8 days as opposed to 14).  If this pattern is repeated for the 4^th (last) dose on 16^th March then I feel much more optimistic about being able to cope with it. 

Karen and I had a lovely afternoon out at Debdale park when the sun was shining and all the crocuses and snowdrops were out, but the undulating paths made it hard work for her pushing me round in the wheelchair.

I’m making good progress with the book editing, but still need more input for the last chapter covering 1995-1997 (‘Change of Leader and IRA bomb’) so if any members of the Labour Group reading this blog have any recollections of that period to offer, please get in touch. 

I’m due to see the Oncologist on Wed 9^th and hope to get some more information about what’s likely to happen after the last dose of chemo (as well as what can be done about alleviating the breathlessness). And finally, you may be interested to know that I haven’t lost my hair (which was expected) so haven’t had the opportunity to wear the lovely, brightly-coloured hats I bought in anticipation.