Genie in a bottle

Well where did that week go? I am continuing to recover and am getting stronger and less tired each day. I no longer need an afternoon nap and I can sit without instantly falling asleep. With the assistance of my able carer I am now getting out again. I still feel nervous but this is something I will just have to overcome. All I want now is for this lethargy to leave me - I seem to have no interest in anything and cannot concentrate on much for any length of time. Even getting to the punch line of Ray's jokes is proving challenging! Being impatient with myself does not help.

I had a post op check up with consultant surgeon last week. She showed me the before and after pictures. My heart was shoved over to the right and my windpipe and oesophagus were both kinked where they too had been shoved over by the fluid. However you will be pleased to hear that all organs are now back in their rightful position! Best of all is that the collapsed 'locked' lung which would not expand has begun to do so of its own accord - even the consultant said 'well I didn't expect that'! I will see her again on 15th August and then have an appointment to see my oncologist to see where we go from here.

My lovely nurses now come in alternate days to deal with the chest drain - they have it down to fine art now and we no longer need the instructions. The plan is for me (and Alan) to start doing this ourselves next week. Just need to remember to close the clamp before opening the suction on the bottle otherwise I might  disappear into the bottle like a genie in reverse!

Jon is once again cycling to raise money for MacMillan Cancer relief. His charity page is here http://www.justgiving.com/jongully2012  . Please support him if you are able - any donation however small will go to help the work of these wonderful nurses.

I have received two gorgeous photos of the Grandies this week.

Lilah looking remarkably like NanaTess!

Ethan rowing with friend Bryony

Hope the sun is still shining in your world. Love. Tess x

Getting there

Well it is now 2 weeks since surgery and I have been home for 1 week. The op went well in as much as 5 litres of fluid were removed from the left pleural space and a Pleurx drainage catheter fitted. My left lung could not be re-inflated as we expected so a pleurodesis was not possible. I am feeling stronger each day although still very weak but my breathing is so much better and as bonus I can yawn again!

I have wonderful nurses that come in daily to deal with the catheter and drainage. Hopefully their visits will be every other day quite soon and then the plan is for me and Alan to do it ourselves! Could be a bit like 'Carry on Nurse'

I no longer need additional oxygen and I can manage our stairs albeit slowly. If you know my stairs you will understand why I refer to them as climbing Mount Everest! I am very upset about my weight loss as I had been so good at maintaining body weight but I try to console myself with the fact that at least 6kgs must be due to removed fluid if 1 liter = 1 kg and then 8 days of not eating while in hospital must account for a few more kgs. Now that Masterchef Al is back in charge I hope the weight will start to return.

Thank you to all that have visited, sent flowers, cards, jokes, messages, emails, phone calls and even a big yummy home made fruit cake from Yorkshire! 

I have a check up with the surgeon on Wednesday. She will see me in Canterbury so I won't have to travel up to London. The team at Guys were fantastic - I am grateful to them all. Amanda I met Ollie - what an amazing guy! xxx

PS I have had to withdraw from the 200m sprint in the Olympics!

What a week

... full of love, laughter and positive energy. A picture speaks a thousand words......  Tess x

Sunshine and happy days

It has been quite an eventful week. Being able to breathe again is good! This is only a very short-term fix but  so far so good. The sun appeared this week - what a treat - too many dull grey days really depress me. So we had a trip round to Minnis Bay and sat and soaked up the warm rays. So different from our visit here last week.

OK I added the palm tree but the photos are real!

On Friday we headed west to Somerset where we were guests at a wedding (Gaby's sister). We stayed in Wookey Hole near Wells and the wedding was at Leigh-on-Mendip. So where was the sunshine when we needed it? My feet were numb but at least the torrential rain held off until we were all cosy and seated inside the marquee. What a brilliant day - I do love a good wedding even if the youngest page boy didn't quite understand his role! We headed back on Sunday stopping off en route at a hostlery for lunch and later at Bernie & Normas for a cuppa. A few photos for you:

Medical matters however continue to dominate our lives.

I had an  appointment  yesterday with the thoracic surgeon. Several options were discussed but it was thought that the best option for me now was to have a VATS (Video Assisted Thoracic surgery) procedure to completely drain all the remaining fluid from the pleural cavity. Much of it is loculated (in small pockets) so not just a simple drainage job. A permanent chest drain would then be fitted. The surgeon would then try to reflate the lung – it is unlikely that this will happen but if it does she will try a partial pleurodesis (sticking the lung to the chest wall). The surgery is booked for 10th July – some urgency as the procedure will be done at Guy’s hospital (London Bridge) and all but emergency ops are likely to be postponed for 2 weeks late July/August for the Olympics and then there will be the inevitable backlog . I  will be in hospital for at least a week mainly that they can monitor the drain and make sure there is no infection or air locks etc. Ho Hum!

But the bestest news - the Canadian branch of the family arrive this Saturday - the Griswalds will be together once more! So I will not be blogging, forum posting or facebooking for the next week. I don't know if or when I will have my two grandies together again so I intend to have Fun Fun Fun. It is quite amazing how two such little people have have boosted and helped Alan and myself over the past 20 months - two reasons to keep on fighting. Welling up here now so will stop.

Hope the sun is shining in your world. Tess x

Feeling Drained! Ha Ha

Another week has gone by. Friends Jacky & Ray visited last Tuesday. They are members of the Enfield Classical Guitar Society which Alan belonged to before we moved. Lovely to hear the plink plonk trio again (did I really say that)? We went out to lunch at The Minnis restaurant great food – pity about the awful weather. Good to see you both again and thanks for the flowers.

 Our lovely granddaughter Lilah was 1 year old on Friday – now where did that year go? She is a little stunner. Here is a photo Tim sent me on her birthday.

Counting the days now until they come to the UK. Having Ethan and Lilah together will be wonderful.

Had a call from my oncologist as promised and I am now waiting for an appointment to have a discussion with the thoracic surgical team. Meanwhile I had my chest drained this morning to see if it helps with the breathlessness / eating problem – the theory being it might relieve pressure on my diaphragm and stomach. I find it very confusing when different consultants give you different options. Having been offered chemotherapy options by both the consultants at Canterbury and St Barts (both of whom had the same scan and knew of the fluid) I was advised this morning by the thoracic consultant that it would be pointless having more chemo while I have so much fluid on my chest as the chemo would be ‘lost’ in the fluid and not touch the cancer even though I would have the side effects. Oh my!

I have completed my sessions of ‘breathlessness management’. The theory is fine and exercises easy to do when I am practising and not breathless but quite a different story when I am breathless and anxiety takes over!

Congratulations to Chris Knighton on being honoured with an MBE in the Queen’s birthday list for services to Mesothelioma Research.

Tess x

Where did that week go?

Well the Jubilee weekend came and went so quickly. I enjoyed all the coverage on the TV but some of those ancient pop stars really should hang up their guitars now don’t you think? Jon, Gaby and Ethan spent the weekend with us so I was a happy bunny. The weather was so miserable we didn’t get out much which was a shame.

My brother and his partner came to visit this weekend. We had a good lunch in The Goods Shed in Canterbury. Well worth a visit.

Health wise I have not been feeling too wonderful. The breathlessness is getting worse and is now slowing me down no end. The fluid in my lung is pressing down on my diaphragm and stomach which is also making eating a bit of a chore too. I now eat little and often which helps to keep the nausea at bay but thankfully I am maintaining body weight which is important.

I had an appointment this morning with my oncologist at Canterbury Hospital. She was in agreement with the advice given from St Barts to have a break in treatment. In this respect they are singing from the same hymn sheet but I still cannot see how doing nothing while the beast continues to grow is a sensible option. Am I alone in feeling this way? Does it make sense to anyone else? My oncologist was not familiar with the chemo regime suggested by St Barts (not surprising as it was not conventional treatment for mesothelioma) but we have since given the details to her secretary – she wants to investigate it further and see if funding would be available for having this treatment locally rather than having to travel to London. I left it that I would see my oncologist again in 4 weeks time. She is happy to prescribe Pemetrexed / Carboplatin chemo if that is my choice and meanwhile she is going to get the thoracic surgical team to look at my latest scan to see if they can suggest anything to help with the breathing problem. A permanent chest drain was mentioned. She pointed out that so far my scan has been assessed by 3 well qualified thoracic oncologists but not a thoracic surgeon. So we play the waiting game once more. Patience is not one of my strong points!

Meanwhile I have my final session of ‘breathlessness management’ this week and another reflexology session.

Sadly fellow mesowarrior Norman Fletcher passed away last week. He fought every step of the way and was a true inspiration to others experiencing this vile disease. R.I.P Norman.

Tess x

Funny old weather!

Weather wise we have had it all this week. We enjoyed the sunshine and warmth earlier in the week. A short trip around the coast to Botany Bay (near Broadstairs) was fabulous. We walked on the cliff top and as there was only a gentle breeze my breathing was fine. I took a few photos and played around with them in a digital scrapbook program. The torrential rain on Wednesday evening was quite spectacular!

 

Not much to report this week on the medical front which is good! I had a reflexology session yesterday and a 'Breathlessness Management' session this morning - this was somewhat disappointing and not very useful to me - I was also very critcal of the teaching style used! I think I am turning into a Grumpy Old Woman!

We hope to be spending some of the weekend with Ethan & his Mum & Dad - hope the weather perks up so we can go on the beach.

My thoughts today are with fellow mesowarrior Norman (who I met last Friday at St Barts) - he is fighting today in ICU. Sending my love to both Norman & Rose today.

 Hope you all enjoy this Jubilee weekend and hope the weather is good for you. Tess x