Saturday, 26 May 2012

Getting ready for action

My thanks to all of you who sent messages over the last week or so. I am gradually replying to the emails – will get through them all soon – promise.

I am feeling much more positive now and ready to continue the fight. Since my last blog entry I have been to St Barts for my review with the team there. I have a lot of confidence in them. They have given me yet one more option to consider – do nothing for 3 months to let my body recover from all the poisons it has received over the last 18 months and look at a different chemo regime to start in August. This option has a certain appeal but as you might expect there are drawbacks. It would have to be administered at St Barts every 2 weeks and the side effects could be ‘not nice’. So no decisions made yet. I am still waiting for an appointment with my oncologist at Canterbury to discuss all these options.
Lovely to meet up with Rose & Norman (a fellow mesowarrior) at Barts.

We spent a lovely weekend with Ethan (& Jon and Gaby). Poor little man had a rotten cough and cold but is much better now. We have been planning our holiday when Lilah (& Tim and Anna) come from Canada – we hope to get over to France for a few days.

I had some wonderful memories this week when I went to buy Mr Men and Little Miss books for the grandies. My two (now 35 and 37) were brought up on Mr Men books – I can remember reading to them – Mr Bump and Mr Silly being the two favourites. Alan even composed songs about them which he sang to the boys – he has threatened to resurrect them for the next generation. So I have started the ‘book corner’ with Mr Funny, Mr Muddle, Mr Tickle, Little Miss Sunshine, Little Miss Helpful and Little Miss Naughty.

My session on ‘Breathlessness Management’ was useful and I have been practising using my diaphragm. This is not as easy as it sounds as I have a lot of fluid resisting the movement on my left side. I missed this week’s session as I was up at Barts but will go again next week.

I have continued with my relaxing ‘pamper’ sessions and have had reflexology and shiatsu this week. My shiatsu therapist was suggesting maybe I look into Chinese herbal remedies to boost the immune system – um something else to look into!

Hope to get out and about while the sun is shining. Hope the sun is shining in your world. Tess x

Wednesday, 16 May 2012

Decisions, Decisions

Well it has been a long and anxious week. I had my meeting with the consultant at Maidstone yesterday. The bad news is that the cancer is growing once more - but this much we assumed from talking to the research nurse last week. Hearing it said though brings home the truth and reality of the situation. There is a build up of more fluid in the lung which would account for the increased breathlessness. Draining the lung is not an option.
The good news is that the cancer has not spread and is still contained in the lining of the left lung. My right lung is good and coping well and compensating for having only one working lung. This is a huge relief to me as I was imagining all sorts. The consultant said he could see 4 options for me:

1. Another regime of chemotherapy. A different combination has been suggested this time.  Do I really want to poison my whole body again? Do I really want to feel so ill and ‘out of it’ again? This will be my third chemo regime in 18 months plus 5 months on the drug trial. Can my poor old body take more bombardment? Is it fair to put Alan through this again? However up till now it has worked in stabilising the growth of the tumour.
2. The ADAM trial at St Barts - I have an appt there Friday week (to get a second opinion) so will ask for more info then. I applied for this trial earlier but as my cancer was not progressive at that time I was not eligible. Again the stamina needed to take part in these trials is high especially when there is a lot of travelling involved each week.
3. Phase 1 Trials – there are several going on around the country testing ‘new age’ cancer drugs (which target a specific tumour rather than the whole body as in conventional chemotherapy) but this seems a bit iffy to me as they will be testing safety levels in humans! Apparently there are several such trials at the Royal Marsden hospital in Sutton. Not sure I could face the M25 on a weekly basis even if I was well!
4. Do nothing, enjoy myself and call in Macmillan nurse care as and when required. Don't think I am at this point yet. Doing nothing to me equals giving up and losing control – perhaps I am wrong and for some people this option is the right one. Each person’s cancer is unique and each person faces a terminal diagnosis differently.

I will now be referred back to my oncologist in Canterbury and hope to get an appt to see her in the next week or so to discuss what I am going to do. So lots to think about and research but at least I do still have options.

Meanwhile I have tried to keep busy and reduce the stress levels. I have had an aromatherapy massage using Frankincense and Chamomile. I also had a reflexology session.
We had a lovely lunch and walk around Mt Ephraim Gardens.
On Sunday we had such glorious warm weather so we sat down on the prom watching the sailing yachts.  There were lots of cyclists out on the Viking Coastal Trail. Good to see so many children cycling with parents.
Other visits have included Gadds Brewery (for Alan’s benefit not mine) & the garden center where we bought some more pots and plants for the hanging baskets.
I start my ‘breathlessness management’ sessions on Friday with a physiotherapist at the local hospice. Hope it helps.

The grandies continue to amaze me – they give me hope and make me smile so much. We are counting the days now till we will all be together. I can’t wait to see Ethan & Lilah playing together. This is keeping me focussed and I know I must keep fighting. Happy days.

Congratulations to dear friends Janice & Tony who have become grandparents for the first time this week.

I am amazed at how many people access my blog pages but I don’t know who they are – please don’t be shy in leaving a comment or emailing me – nice to know you are there. Tess x

Wednesday, 9 May 2012

Ups and Downs

I had my trial treatment and CT scan at Maidstone on Friday. I didn’t know at the time that this would be my last treatment there. Having done the trip every week since last November it kind of becomes part of the routine. However the research nurse phoned yesterday to say the consultant had looked at my scan and wanted to cancel my trial treatments. The only reason he would do this is if I have disease progression. I have an appointment to see him next Tuesday to discuss the results and my options now. I do think he might have spoken to me on the phone rather than leave me waiting anxiously for a week. I have also got an appointment the week after with the team at St Barts (Jeremy Steele et al) so will get their opinion too. I have requested that Maidstone send a copy of my scan to Barts which they have agreed to do. So at the moment I am not sure where we go from here. A case of watch this space. I need to keep positive now until I know what is going on - easier said than done. I have always been in control of my life and do not take kindly to having this control taken away. I will fight this bastard with whatever it takes. A few positive vibes, hugs, prayers - whatever you can offer would not go amiss right now.

The bank holiday weekend was not good weather wise but we spent Saturday in Tunbridge Wells – Ethan continues to amaze and delight us both. We stayed over on Saturday night so we got Ethan in bed with us on Sunday morning – what a little wriggler! We then went to Caterham to catch up with cousins Chris & Mick – lovely cup of coffee and choccy biscuits. We interrupted their decorating but hopefully it will be finished soon. Off then to Warlingham to visit my brother & partner. Another good meal and so good to catch up with Louisa too. Another sleepover and then back to Westbrook after a good fry-up.

I had a lovely reflexology session yesterday – soooo relaxing. An aromatherapy massage is booked for Friday in Canterbury – I’m lovin these pamper sessions. I have also signed up for ‘breathlessness management’ sessions which should start next week.

So that’s my week in a nutshell – many highs and one big low! Tess x

Wednesday, 2 May 2012

A Quiet Week

It’s been a quiet week. My treatment at Maidstone on Thursday went well with only minor delays. The heavy rain and wind kept me grounded over the weekend as I find it hard to breathe in the wind. The sun shone on Monday and it was warm so we sat for a while down on the prom. The tide was out and Alan was threatening to bring home the seaweed for the garden! While I was sitting there I was thinking how this awful disease is progressing as I cannot walk far at all now without getting out of breath. Watching other couples strolling, jogging, cycling made me feel so sad – this is what we retired here to do! Hate it!

I did get to the optician to sort out these new single lens glasses – can’t get on with them at all. I think I have worn varifocals since they were invented so all this on and off with the damn things is not going to work and I keep getting the chain caught up with my earrings! Life’s hard! Have yet more glasses on order –and so expensive – just under £400 just for the lenses!

On Tuesday morning I went to my local hospice to meet with my Macmillan nurse. It was a difficult (emotional) meeting. My only previous experience of a hospice was when my lovely dad died and this has many bad memories. However things seem to have a changed a lot since then and although people do still go there for end of life care it seems to be more a social center. We talked about lots of things that needed to be talked about. I am going to see them for breathing management and supportive therapies (reflexology, aromatherapy etc). My lovely nurse Jenny could not have been kinder. I came out feeling much more positive and much less anxious. Alan found the meeting useful too.

In between rain storms Alan has been busy in the garden. Spuds and broad beans are sprouting, carrots, dwarf french beans and beetroots have been planted and geraniums that have been in the porch all winter have been planted out and more cuttings taken. Thank you Ray for the veggie funnies.

I have managed some online shopping this week – a few crafty bits for me and new Arsenal outfits for Ethan & Lilah as they have grown out of last season’s outfits. ‘Come on you Reds!’

My trial treatment has been changed to Friday this week as I have a CT scan as well and I didn’t fancy making the journey two days running. Tess x

‘Give your stress wings and let it fly away.’