Jo Wiggans, Director of Aimhigher Greater Manchester, given Special Award in Honour of Kath Fry

I was very thrilled to have been asked to present the Special Award in honour of Kath Fry at the Manchester Women's Awards 2011 last night (Friday 7 October). The award was for a group or individual that has made a significant contribution to education and/or gender equality. This is basically what I said, except I missed a bit out because I was stumbling.

I’ll call her Kath for the rest of what I’m going to say, because I’m not going to be talking about Kath Fry my mum, but Kath Fry a woman of outstanding achievement.

If she’d been here and someone had suggested that this award could be named after her, I’m sure she would have said something like, “Oh no… there are far more deserving women than me” and probably would have suggested a few. But I know that inside she would have been really pleased.

I think that kind of modesty is a characteristic that many of the women here today will share. This ceremony and awards are a great recognition, but the things they do are not for that reward. They are good women who are driven by a desire to help people and make the world a better place.

Kath was a very active campaigner in the women’s movement in the seventies and then in the Labour party at a local and national level.

She was Secretary of the Manchester City Labour Party from 1984 to 88 and a City Councillor from 1988 to 2004. In that period, she held key posts of chair of Personnel sub-committee, chair of Education Committee and deputy of Children’s services committee.

In her working life, she was a careers officer and then a maths teacher, first in secondary schools and then in adult education. She was passionate about young people and education, and to that effect one of the achievements that she was most proud of was her 20 year involvement in the Ghyll Head Outdoor Education Centre.

Ghyll Head is Manchester’s residential outdoor centre for young people in the Lake District. With the pressure on Council budgets over the last 20 years it’s often figured on lists for possible cutbacks or closure. The full cost of high quality residential outdoor education is beyond the budget of many families in Manchester and yet a hugely positive experience for the young people.

Kath first visited the Centre as Chair of the Education Committee in 1992, attending the Centre’s 25th anniversary celebrations. She gave a speech alongside Benny Rothman, a native of Manchester, famed for his role in the Kinder Scout mass trespass, and the battle for access to the countryside for the common man. During that day, Kath became aware of the impact that the Centre could have on young people from the City.

This turned out to be an important occasion for the future of the Centre, because a couple of years later when Ghyll Head was on the list for possible closure by the City Council, it was Kath who came to the aid of the supporters who wanted to voice their protests to the Education Committee.

When the decision was made to keep the Centre open, Kath chaired the newly formed management committee and inspired the Centre’s supporters to form the Friends of Ghyll Head. Despite all her other work, Kath volunteered to take on the role of Secretary to the Friends, something she only relinquished as her illness took hold last autumn.

And to illustrate this commitment, in February she hosted a meeting of the committee at our house, because she wasn’t up to the journey to somewhere else.

That was actually too much for her and afterwards not only was she very tired, but also sad once everyone had left. Not for herself, but that because of her illness, she felt she was letting everyone down, and was worried what would happen to the Centre without her input.

I am here today to award a prize to another outstanding woman. The winner of this year’s Special Award in honour of Kath Fry is Jo Wiggans, director of Aimhigher Greater Manchester.

The Aimhigher initiative was a national partnership project, the funding for which came to an end in July 2011, but some of the projects across the country are continuing without government funding or still winding down.

Aimhigher Greater Manchester, was a partnership of ten local authorities, more than a hundred and fifty high schools, 22 colleges, 7 higher education institutions, plus work-based learning providers, Connexions services and others.

The initiative had a budget of more than five million pounds per annum. This was for programmes of activities to encourage young people from underrepresented groups to progress to higher education.

The initiative in Greater Manchester was an unprecedented success. Just one of the successes of the programme was the number of young people from Manchester who applied to higher education increased by 91% between 2003 and 2009.

The rate of increase in Higher Education entry was also greater for those from the most deprived areas of the city.

Jo and her small team were based in the Open University in the North West Regional Centre in Sharston. Jo was formerly Assistant Director for the Open University in the North West where she worked for ten years. And previously had worked for Leeds Metropolitan University and other providers.

I am sure that Kath would have been very pleased, as am I, that this award in her honour has gone to such a worthy recipient from such a successful and worthwhile project.

Aimhigher Greater Manchester was an outstanding success in raising aspirations and supporting young women from the most deprived areas of Manchester to progress to higher education, enabling them to fulfil their potential.

Dress code for the funeral

There isn't one! Wear what ever you feel comfortable wearing, black or bright colours, smart or casual (but I draw the line at naturism - it will be too cold!). Kath would not have cared and neither do we ;-) I only mention this as a few people have asked me.

Manchester Evening News notice

We placed a notice in the Manchester Evening News which appeared in Friday's paper. It is also available online at http://notices.menmedia.co.uk/9727243. There is the option online to leave messages and photographs.

Finally the proof of THE book has arrived

For more information about publishing progress, bookmark this site: http://kathfry.tumblr.com/

Ghyll Head launching the Kath Fry Award

The Friends of Ghyll Head has initiated the Kath Fry Award to mark her special role in promoting and preserving Ghyll Head. They had hoped that she might be able to be there when the award is launched at the presentation to the winners of the Millenium Challenge (which it will replace) on Monday 16th May at 1.45pm at Loreto High School in Chorlton. Sadly this will not be possible, but in a way this makes it even more of an appropriate recognition and memorial.

Funeral Arrangements

The date for the funeral is Friday 27th May.

The ceremony will be at 2pm at the Manchester Crematorium, Barlow Moor Road, Chorlton-cum-Hardy, Manchester M21 7GZ (http://www.manchestercrematorium.co.uk/contact.htm)

Followed by a gathering at 3:30pm at the Woodstock Arms, 139 Barlow Moor Road, Manchester, M20 2DY (http://www.thewoodstockarmsdidsbury.co.uk/findus/) for people to chat, reminisce, eat and drink. There will be a pay bar with a provided buffet with tea and coffee.

Please note that the crematorium has a capacity for 100 people, so given that there may be a lot of people who wish to attend, please be aware that there may be some over spill and if it is likely to rain take appropriate precautions (it is Manchester... it will rain!).

Please remember that we do not want flowers and instead would like donations for the Friends of Ghyll Head. Please see http://www.justgiving.com/kath-fry/ if you would like to donate online.

We would like people to add to a memories book at the Woodstock Arms part so if you have any cuttings or written down memories or photos that you would like to stick into the book, please bring them along. I am adding to the photos online http://www.flickr.com/photos/dentonpotter/sets/72157626668680308/ as people send them to me and as I am scanning more.

Some pictures to remember

I am uploading some pictures to my flickr pages here. If anyone has information about any people who are also in the photos or when they were taken, please feel free to add comments to each one. Also please feel free to send me any photos you have that you think could go up there.

Sad News

Sorry to announce this way, but this is to pass the news as quickly as we can without too many phone calls. Kath sadly died on the morning of Thursday 5th May, in Accident and Emergency at the Manchester Royal Infirmary. She was very breathless in the night and we called an ambulance. The initial diagnosis was that she had a chest infection, which they thought would be fine to treat with intravenous antibiotics, but she went downhill very quickly and passed away at about 10:45am. Pete and I were both with her at the time. It was very quick and she did not have unnecessary prolonged suffering or pain. There will be a post mortem which the GP thinks will show that the cancer had spread and that was what the main cause of death rather than a chest infection.

I will post details of funeral once we have made arrangements. You can imagine we are naturally pretty shocked, since she had been reasonably well, although not as well as people might have thought from her upbeat blog. We cannot make any firm arrangements until after the result of the post mortem which will likely be late next week.

It seems fitting that Kath should pass away on election day and having cast her vote already by postal ballot. She would have been very pleased with the results in Manchester. Thanks to Cllr Hughes for his tribute to Kath - Newly-elected Gorton North Labour Councillor John Hughes added: “I am dedicating this victory to former Labour councillor Kath Fry who died of cancer yesterday.” (see here - last paragraph) and Councillor Peter Cookson for the same (according to Twitter).

Being Kath's children we'll be up front and ask you not to send any flowers or other gifts of condolence (well cakes are OK) but we plan to ask for donations instead to go to Friends of Ghyll Head, which was a cause very close to her heart. I have enabled comments for people with Gmail accounts on the blog, so we are happy if you wish to leave messages here.

Not very eventful week but more positive information on the 'wellbeing' front

Apart from the continuing glorious weather, the highlight of Saturday 23rd was the new ‘Dr Who’ episode, and Sunday we just chilled out (and I did some more ‘stuff’ sorting), but Bank holiday Monday was a bit more eventful. Karen and I drove up to a local ‘tourist site’ - Ryecroft Hall which had pretty impressive gardens (owned by Tameside Council) but then gave up trying to get into another local garden centre (because of the queues).  In the evening we went to the Chernobyl 25th Anniversary memorial concert (organised by Lydia) at St Ann’s church in the city centre.  Les’s Beech Road band was in good form with their English and Irish folk tunes and Bolton Clarion choir were in good voice.  It was lovely to see all my former singing colleagues and I mouthed along to the words of the Russian song we learned nearly 2 years ago.  The evening was part of a world-wide memorial and particularly poignant in the light of the Fukushima catastrophe.  

On Tuesday, the District nurse came to check out Karen's wound dressings and the GP called to discuss my new pain med regime and make a referral to the consultant at St Ann’s Hospice for an in-depth discussion about ‘prognosis’ etc. Then Peter, Karen and I had a lovely afternoon with cousins Colin and Anne.  On Wednesday, Karen drove down to Northampton (to pick up more of her ‘stuff’ and see friends) and Peter came to stay over for the night.  I had some pampering in the afternoon (Pedicure and Reflexology), but more importantly, received through the post a lovely letter from Terri (Bolton choir) and information about an organisation called ‘canceractive’ which is a non-profit-making organisation dedicated to publishing information for cancer patients on research, what the various drugs are designed to do (and their side effects), treatments (alternative and otherwise) and is basically about improving one’s wellbeing and holding the disease at bay as much as possible.  I’m very interested in all this (and have nothing to lose from trying things out) and will be posting more about this as I try things out.

Lots of visitors on Thursday and then on Friday a short sojourn at Bernard and Debbie’s “Not the Royal Wedding” party (Neil was my Chauffeur). Today’s highlights were a lovely few hours with Tony Lloyd reminiscing and talking politics, Karen’s return from Northampton and ‘Dr Who’.

Recycling and Radiotherapy

Having made lots of headway sorting through ‘the stuff’, I’ve got an appeal to send out to you. I’m looking for a good home for a collection of French stamps.

One of my teenage obsessions was with everything French – including stamps.  I built up quite a collection and my father contributed some fairly valuable ones (amongst his many other obsessions after his retirement being buying and selling stamps and coins). There are some complete sets and some very old stamps – all catalogued and labelled.  However, the dealers I consulted some years ago said its not really worth much and any collector would just take out the one or two worth more than a few pounds, which would spoil the sets, which I wouldn’t like to do.  So, if anyone out there knows someone – young or old – who would take an interest and give it a good home, please let me know.   

The LP archiving is nearly complete and I’m hoping the Council Library service will be sending a van out after Easter to collect the file boxes.  Then I’ve just got to decide what to do with holiday photos (???!!!) – any ideas? and every postcard ever sent to me by every friend on any holiday anywhere, ever ……. OMG!!!   Not to mention diaries, theatre programmes, birthday cards… etc … even more OMG!!!  What was I thinking for all those years?   

I spent a lovely afternoon with John Shiers on Tuesday.  We talked politics and shared our cancer experiences and he gave me lots of useful information - more of that in next posting.

Radiotherapy at the Christie on Thursday took 3 hours (mostly waiting in oppressive, hot and airless waiting rooms) – the actual treatment was less than 5 minutes.  The Doctor changed my pain med regime because he said there would be some more pain later (which the Oncologist hadn’t mentioned) and I needed Morphine patches.  But it took a long time for it all to kick in and I was in pain most of the night.  Karen and I were hoping to go to Colwyn Bay on Friday, but given my lack of sleep and Karen’s exhaustion from the heat and the driving, we decided not to go.  Having seen the reported traffic jams on all the coast roads, I think it was the right decision.  Anyway – we both slept really well last night and have had a much better, relaxing day today.

Karen has finished the book typesetting, produced a snazzy cover and e-mailed it off for 2 proof copies to be printed (at an amazing cost of only £20 within 3-4 days), so just proof reading and decisions about publishers to be done now.

Lots to do

Not much change since last week.  Have a date for the radiotherapy appointment (next Thursday) and am having acupuncture twice a week (5 sessions to date).  I seem to have much more energy and less of a problem with pain, so it must be doing some good. 

As the weather was so fantastic again on Saturday, Karen and I went across to Pete & Jenny’s and we had a great barbecue lunch.  Sunday and Monday were quiet and I finished the book (at least the writing)!!!  Karen is now doing the typesetting and trying to squeeze it all into one volume rather than two.  I may have to cut out some of the appendices.  Had visitors on Wednesday (1) and Thursday (3), and following acupuncture on Thursday, K, P & J and I all went out for a fish meal in the city centre - 'Livebait') which was very good.  Lots of family visited yesterday (brother and sister and cousins) which was nice but a bit tiring.

So its now back to the archiving and chucking out years of accumulated rubbish.  To those of you out there who are hoarders like me, can I suggest you start clearing out your ‘stuff’ now, otherwise it’s an overwhelming task.  Years and years of ‘stuff’ that I’ve no idea why I wanted to keep.

What a lovely day its been today

I had a lovely afternoon in Fletcher Moss Park with Gita today and managed to walk around most of the gardens without getting too breathless. Stairs are still a problem though, but having the stair lift has made a big difference since I can now go up to the loo without panting for breath for 5 minutes.

Since the last posting I’ve started to have some difficulties with pain again, but I’m hoping the acupuncture will address that rather than having to increase the number of tablets.  Also, another 2 lumps have appeared under my armpit and I saw the senior Oncologist at lunch-time today who confirmed that a blast of radiotherapy should sort them out - appointment expected within 2 weeks.

Despite all this, I’m still feeling very well; eating and sleeping well, so am optimistic that I’ll have 4 months rather than 2.  Karen is doing well and getting stronger every day. We had our first trip out into the world last Saturday (an overnight stay at Peter’s house in Macclesfield) but it highlighted the difficulty of being away from familiar surroundings and the joy of ones own bed, which led to my decision not to risk the possible trip to France at Easter.  There’s nothing much else to report other than I’ve almost finished the epilogue for the book and Hilary Wainwright is about to start on the Forword that she promised to write for it, so I’ll be looking for visitors again in a week or so.

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. 

Even longer marathon at Christie's

In the context of the seismic changes taking place in the Middle East and the hundreds of people dying for democracy, it seems very self-indulgent to be blogging about my health concerns, but in the classic phrase from Mastermind – “I’ve started, so I’ll finish” – but I’ll keep this short.

I decided to go ahead with the 3^rd dose of chemo yesterday, despite my trepidations about the likely cumulative effect of it.  The day at The Christie was even more of a marathon than before – 15 hours in total.  The treatment centre had 5 fewer staff than needed and too many patients booked in.  I didn’t finish on the drip until 1am, and wasn’t the last one to leave.  The staff didn’t allow the stress and the late working hours to change their behaviour towards the patients and were very cheerful and efficient, but they shouldn’t have had to tolerate the situation, nor should the patients have had to suffer such delays and additional stress.  I shall be putting in a complaint to the Chief Executive of the Trust.  

Anyway, today (as with the previous pattern) I’ve felt very well and able to eat normally.  I expect the real problems to kick in tomorrow, but Peter is here and staying overnight and my sister (Barbara) is coming tomorrow, then Karen is back on Saturday, so I shall be well looked after. I couldn’t have wished for better supportive care.  I expect to be out of contact for at least 2 weeks, but will then hopefully be back in touch and able to catch up with everyone’s news 

Poorly but still optimistic

I know its been 2 weeks since my last posting, but I’ve really been too ill to focus on it.  My reaction to the 2^nd dose of chemo on 2^nd February was much worse than the first.  I didn’t have an infection and I didn’t have the thudding ache all over my body that I had the first time, but I felt more nauseous and generally unwell for much, much longer.  In fact, I felt so bad that I was contemplating not continuing with doses 3 and 4 – reasoning that I’d rather have a shorter lifespan feeling well than a longer one feeling like sh…..!  By the time of the review meeting at the Christie yesterday, I was feeling a good deal better (although not as well as I’d felt after the first dose), but very breathless, and had decided to ask for a week’s deferral for dose 3 on the grounds that I was not strong enough to withstand it.

I saw a different doctor who was very forthcoming and explained a lot of things about the chemo and the life expectancy - basically - for patients with non-small cell lung cancers who respond to the chemo, life expectancy increases to 2 years (or more with further treatment) so they do recommend continuing.  The X-Ray and blood tests showed no fluid on the lung or infection (possible causes of the breathlessness) and no progression of the cancer.  He thought that I would feel much better by next week (23^rd) and so shouldn’t yet cancel the appointment.  However, if I continue to feel bad by Tuesday, I've to phone the specialist nurse and they will defer the treatment for a week and arrange a CT scan so they can really check the impact of the chemo so far.  I’m happy with that arrangement and in fact do feel a lot better, and a lot less breathless, today.  

Linda was brilliant at the Christie and pushed me in a wheelchair from the treatment centre to the x-ray, then to the cafe to get lunch and then to the afternoon clinic (after the doctor had chance to examine the x-rays and the blood samples (I think she was knackered though). I got a taxi home and slept for an hour and felt a lot better afterwards.

To all those who have sent me e-mails, cards and letters, please accept my apologies for not replying.  Now that I’m feeling so much better, I will get round to it in the next few days, and I will post a blog update next Thursday.

Two chemos down, two to go.

Just a short posting to say that since the last posting I have felt relatively well, but the 2^nd chemo session at The Christie yesterday was even longer than the 1^st one (didn’t finish till 10.30pm) – partly because the blood samples weren’t taken till 9am (half an hour after my appointment) and it took 3 hours to analyse them and make up the chemicals for the drips.  Then there were delays in the treatment room and I wasn’t called up till 2.30pm (good job I’d brought a good supply of food).  The nurse struggled to find a good enough vein for the cannula.  After 2 attempts, he called a senior nurse who managed to find one straight away (so I have 3 bruises rather than only 1), and then the drips were started around 3pm.  Visitors all arrived on time to entertain me, but I was a bit too tired to fully appreciate them (did enjoy Drew’s holiday photos of Ramblers holiday in Turkey though).

Today has been a good day (as per the 1^st chemo session) so I’m preparing to be hit hard tomorrow and for the next few days.

However, my problems have been as nothing compared with what Karen and Peter have had to cope with.  On Monday morning, Karen was de-icing the windscreen of her car, parked in Northampton outside the house of the friend she stays with when down there, when a car crashed into it (narrowly missing her legs).  The car being driven by someone who hadn’t properly de-iced their windscreen and didn’t see Karen’s parked car!!  Eventually police cleared all away, but Karen had to spend the rest of the day negotiating with insurance company and getting car taken away and a courtesy car arranged.  This turned out to be a huge car and an automatic which she didn’t feel comfortable driving.  Then the garage decided that her car was actually drivable and so the courtesy car was taken back.  But, her car had to be left in Northampton to be fixed and so Karen had to come back to Manchester by train on Wednesday.  There are some other complicating factors with the car (including the MOT being due and her need to get it to Heathrow (and park there) while she is away in 2 weeks time) but it would take too long to describe it all.  As if that wasn’t enough, Jenny (Peter’s partner) heard that her mother (who lives in Johannesburg) has had a serious stroke and so she is going to fly over tomorrow and Peter is going with her for support.  A slight positive bit to add to that is that Jenny has put Karen on her car insurance so that she has something to drive here while Jenny and Peter are away.  

So is this family jinxed or what?  Peter says crises are like buses – nothing for ages and then 3 or 4 come at once!

Getting better

For the last 8 days I have felt very well – stronger and fitter every day - and a lot less breathless.  In fact, today I feel better than I have for several months, so even though the chemo means 3 – 4 days each 3-week cycle of feeling terrible, it’s definitely worth it.  On Tuesday I even went out for a walk to the health centre to pick up a repeat prescription, and to the post office, and walked back.  A journey that would normally have taken around 15 minutes, but took me 45 (including a 15 minute wait at the chemist).  Still – I made it without help and only had to stop to rest a few times.

I had my blood tests and X-Ray at The Christie yesterday (and didn’t have to wait very long at all) and saw the young Italian Oncologist again to recount my experiences.  I didn’t get chance to ask him any of the questions I had ready (they’ll have to wait till next time) apart from whether or not the second dose of chemo (due next Wednesday) will be better, worse or the same as the first dose.  He wasn’t able to say because it’s different for every patient.  So, I’ll just have to wait and see, but at least I have a better idea of what to expect.  At the recommendation of my GP I’ll take the anti-biotics from day 1 and so hopefully pre-empt the possibility of any infection.

It’s been great seeing so many friends over the last week and I look forward to all the other planned visits over the next few days, but I’m going to have to limit future socialising and put some more time into finishing off the book editing if I’m going to meet my target deadline of end of March.  I’m feeling much more optimistic about my expected lifespan and so I think I’ll have more time than I previously thought to catch up with everyone.  Anyway, I don’t think I’ll be putting on another ‘posting’ until around 5^th February (few days after the 2^nd chemo), so bye for now! 

Bleeuugghh!!!

I spoke too soon last Thursday when I said I felt great – it was probably just the impact of the steroids.  The after-effects of the chemo really took hold on Friday - I felt as though I’d been hit by a bus! Every part of my body throbbed and pounded with pain.  In the evening I took a big swig of liquid Morphine and managed to sleep for a bit.  I felt marginally better on Saturday and then a bit better again on Sunday, but then started uncontrolled coughing on Sunday evening, just after the carer changeover from Karen to Peter.  It was apparently a chest infection, but I didn’t get a wink of sleep all night and my GP (who is brilliant) had to make a house call on Monday and got me on antibiotics (again!).  If there hadn’t been an improvement by the next day, he was planning to get me admitted to Christie’s, but there was a massive improvement by Tuesday, and by Wednesday, I was back to normal (at least what passes for normal these days). 

The other side-effect was the nausea and complete inability to contemplate eating anything.  The anti-nausea pills helped, but the thought of eating even tiny quantities of food was enough to set me off retching.  However, eating is now easier and I’m pampering myself with only food that I really fancy, regardless of whether it’s good for me or not (or ethically sourced/transported – the planet will have to look after itself for a while).

So, I’m up for visitors again.  I prefer arrangements to be made by e-mail or text, since telephone calls interrupt my daily naps, and I particularly don’t like phone calls in the evening, so be warned!

Anyway – the latest on my book is that Tony Dale has been an absolute star and has started going through the chapters and indicating where he thinks passages can be deleted or shortened, which gives me something to work on over the next few weeks.  I’ve also got interviews lined up for material to finish off the last chapter and some ideas from Neil on how to link the Introduction with what’s happening currently on the Council to make it up to date and relevant.

And, in relation to the new project idea I had when my brain was buzzing on Thursday – this is to set up a Manchester EMA Trust fund for those students currently in the middle of a 2-year A-level course who have had the rug pulled from under them. From my experience of setting up charities, and contacts with business people etc, I’m sure it will be possible to set something up and garner enough funds to help a significant number of young people.  I need to talk to more people about it, but – watch this space!

Well, that’s all for now.  I’m due to see the consultant on Wednesday for blood tests CT scan and to discuss the next steps (and quiz him some more about the survival statistics).  Next chemo session due on 2^nd February and I don’t know if they’ll change the ‘cocktail mix’ in the light of my experience, or whether my reaction will be better or worse than the first time.  At least I know what to expect now – forewarned is forearmed!

  

13-hour day at the Christie

Yesterday, Karen and I arrived at 8.30am for the blood tests appointment. I’d been awake since 2.30am (not from worry, just couldn’t stop my brain whizzing round and get back off to sleep), so wasn’t at my best. I wasn’t called until 9.15am at which time Karen left and I had time to kill until the next appointment (for treatment) at 11.30. Went to the information centre to find out about complementary therapies, popped my head into the wig centre (apparently I will lose my hair in about 10 days – so a wig is on the agenda – waiting for a referral), then went to meet Gita in the on-site coffee shop.

At 11am I went back to check the location and ‘calling’ procedure for treatment and was told they were an hour or so behind and that I should leave my mobile phone number for them to ring me, so I then went to track down a sandwich and sat down to read.  At 12, I got a call to pick up tablets at the Pharmacy and to take one an hour before starting treatment (ie now), and then was called up to the treatment suite at 1pm to watch a DVD with around 6 other women. The DVD was all about after-effects of chemo with great stress on watching out for signs of infection and not ignoring them, followed by around 5 case studies of patients saying how they’d had high temperatures but not phoned the hotline – thinking “oh I’ll be OK” and then of course weren’t.  We’d all got the message after the first one, but had to sit through another 4 cases.  My problem is that of the 5 or 6 symptoms of infection, I already have 4 of them (persistent cough, sore mouth, breathlessness and fatigue). But, I’ve got a thermometer and will check it at the first sign of raised temperature (over 37.5ºC for the uninitiated).

After the DVD there was more sitting around until allocated a bed and then I was taken off to have the catheter inserted (around 2pm) – in the back of my hand.  Pretty painful experience since the first attempt wasn’t a good enough vein so the nurse had to go for another one.  Then back to my bed for the drip to be attached (for 2 hours) and the injection of vitamin B12 (even more horrible than the catheter).  Fortunately Linda was by my bedside for comfort by this time.  I didn’t find out till later that there were to be another 5 drips of varying lengths of time, with rest periods in between.  Going to the loo while pushing a drip stand with a mind of its own was an experience not to be missed (together with peeing into cardboard containers so the ‘outputs’ could be measured and correlated with the ‘inputs’).  I managed a few snoozes between drip changes but the adjustable chair, which was initially comfortable, ceased to be so after more than 7 hours in it.  Anyway, food came round at 5pm and I actually enjoyed a ham sandwich, fruit yoghurt and a banana. 

Karen and Peter came round at 8.15 and spent the last hour and a half with me and took me home – the rest of the building was in complete darkness, but the treatment centre still had new patients coming in (some just seemed to have a drip in for a couple of hours and then went home).  I was actually hungry when we got home (10pm) and relished a meal (first time for ages I’ve had any appetite for food) and watched a film on TV (‘Thank you for smoking’ – irony huh?).  Unfortunately I missed the last 15 minutes cos I fell asleep on the settee (K & P having gone to bed earlier).

This morning I felt great and ravenously hungry (probably the effect of the steroids) and full of plans for a new project I want to get involved with (more on this later), but by afternoon I was flagging and then slept for 2 hours. Felt a bit nauseous an hour ago, but have tablets for that (the number of tablets to be taken – on top of the pain meds – is just phenomenal). So, that’s about it for now.  I’ve no idea how I’ll feel over the next few days, but think I should keep away from people until my antibodies build back up again.  I’m hoping to be up to seeing visitors from Wednesday and will text or e-mail to make arrangements.

I must pay tribute to my wonderful circle of friends who have been supplying me with good conversation, support, information and pampering (reflexology from Vera on Monday and shoulder massage from Lydia on Tuesday).  Lesley picked up an interesting BBC news item about new research into a genetic marker for non small cell adenocarcinoma – a really interesting development, but too late for me.  Hannah’s been tracking down statistical research, but latest data is for 2007 and again, all lung cancers are lumped together and the figures given are - 25% survived lung cancer for 1 year, 7% for 5 years.  Given that 80% of all lung cancers are ‘non small cell’, one could assume that these stats are mostly for that, but the virulence of some of the lung cancers could skew the figures.  When I next see the consultant I need to quiz him more about the basis for their prognosis, ask what data is kept, and whether any analysis is done by gender, age, ethnicity etc. I suspect there isn’t much data analysis done (future job for a free-lance statistician??).  Finally, there is an interesting article in today’s Daily Telegraph by Cassandra Jardine (referred to a few weeks ago) on Michael Douglas’ apparent recovery from throat cancer – in the health section of the paper’s website.

Ups and Downs

I had intended to post something last week but good days have been filled with visitors and bad days have been spent wrestling with pain control.

Christmas was very good – one of the best I can remember.  Karen and I drove over to Peter and Jenny’s on Christmas Eve and we all went to the local pub (Stanley Arms) before dinner.  Never having been to a pub on Christmas Eve before I had assumed it would be crowded and lively, but it was very quiet, so we didn’t stay long and went back for dinner, which Peter cooked (with Jenny assisting) while Karen and I watched another episode of ‘Lost’.  We’d received DVDs of the 6^th (and final) series as a joint Christmas present (both being addicts) and, of course, opened it before Christmas day and tried to limit ourselves to watching 2 episodes a day (or at least no more than 3…).   On Christmas Day we watched TV and DVDs while Peter cooked a wonderful dinner with all the trimmings.  I can’t claim any credit for him being such an accomplished cook because he took it up long after he’d left home.  Then we all played Scrabble, slept and watched more DVDs.  Being so warm and sleepy and comfortable, Karen and I decided to stay another night and came home on Sunday morning. I had a quiet afternoon at home while Karen and Peter went to see their half sister and new baby nephew.

Monday was Peter’s birthday and I’d planned to do a roast beef and Yorkshire pudding dinner for the four of us, with special birthday cake to follow (bought, not made – with a Manchester City logo and appropriate piped wording) – reminiscent of their childhood when I used to make birthday cakes with themed decorations for their birthdays. However, I’d not taken into account how challenging this meal would have been at the best of times - ensuring that everything (joint, Yorkshire pudding, roast potatoes and vegetables) would all be ready at the same time (many years since I’d done it).  The result was that by the time it was all ready, I had to leave them to do the carving and the serving out, while I crawled on to the settee to lie down for 10 minutes before I was fit enough to eat with them.

The rest of the days since then have been very busy with visitors, alternating with bad days when I just couldn’t get the pain under control.  In an attempt to control the severe peaks of the pain cycle and try to get smaller fluctuations I changed the medication regime to taking smaller doses more frequently rather than large, infrequent doses, but this turned out to be a disaster, so I went back to large doses at 4-5 hourly intervals. The pain peaks were still erratic and unpredictable, and the only thing bringing it down was a double dose of Codeine.  Although small doses of Morphine helped initially with the breathing (and Karen called it my turbo booster juice) it’s ceased to be effective.  The Macmillan nurse said that I could take larger doses at 4-hourly intervals, but unbelievably, it still doesn’t bring down the pain – although I’m sure if I drank the whole bottle it would!!!

Anyway, last night things came to a head and whatever I took, the pain went on escalating until I daren’t take anything else for fear of overdosing, so I rang the out-of-hours GP service – which I have to say was wonderful.  After going through the routine questions with an administrator, a doctor rang me back within 10 minutes and went through with me what I’d taken during the day and said I could safely take another Tramadol and that a doctor would be with within 2 hours.  He actually arrived within 20 minutes (by which time the pain had begun to recede) and did a very thorough examination and was very informative about what pain meds could be taken frequently and what should be restricted.   He thought I might have fluid on my lung again, so this morning I contacted the Christie and they booked me in for an assessment at 11am.  After chest x-ray, blood tests and the usual ‘obs’ and tests the doctor concluded that there wasn’t any fluid (thankfully) but possibly a chest infection, for which I now have anti-biotics.  So, the pain is now under control and the chemotherapy is still on schedule for next Wednesday (followed by 3 other courses at 3 weekly intervals).

I heard over Christmas that an old friend from the Labour Party in the ‘80s (whom some you may know) - John Shiers - has also got lung cancer – mesothelioma (from exposure to asbestos).  He is not going to go for chemotherapy but, as he is a therapist and practitioner of meditation and acupuncture, he is going to use these alternative therapies. We are going to meet up when he gets back from India and compare notes and he is happy for me to share all this in my blog.  Very worryingly, his exposure to asbestos was from his days living in the Hulme Crescents and he says there are a number of former Hulme residents in the same situation who are getting together a campaign to raise awareness and claim compensation. As soon as I know any more about this, I’ll pass it on. 

I need to finish this now, or it will never get posted. I’ll post something about the book in a few days.