Resuming Normality

The week has been a good one. 

A visit from Chris & Mick (and Poppy) on Monday buoyed us up. We had a good chin wag and enjoyed a stroll along the prom. Thank you both for your love and continued support and your apple crumble!. The gladioli are still beautiful (see pic above).

I  resumed my reflexology sessions this week as my therapist has returned from holiday. I always feel so relaxed and positive after each session.

We visited our gorgeous grandson (& his mum and dad) on Sunday. I felt very brave and we stayed over until Monday. I haven’t been far from home since I had the chest drain fitted so this was quite a confidence boost for me. Ethan has recovered from his Scarlet Fever and is back to his normal self. He is great fun now and I felt so good that I was well enough to play with him again. He has the most wonderful chuckle. My son says when Ethan and I are together we are always up to mischief! 

I am happy to report that I have also regained my taste for Pimms with lemonade and chilled Alsace Riesling so things are definitely on the up.

The best news of all is that Alan has just passed his probationary period (as a chest drainage nurse) with flying colours! He has his first solo flight on Wednesday! This will give us back our freedom and independence – Yeah!  - I’d better start being nice to him! Just don't call him Sister Alan! 

I must say that the community nurses have been absolutely first class over the 6 weeks we have depended on them - I cannot praise them enough. They will still pop in once a week to deliver supplies and have a chat - those girls do love to chat! Bless them all.

Tess x

Lazy Days

It has been a fairly quiet week. The weather has been good so we have been able to get out and about. I feel much stronger now thank goodness – at one point I thought I would never regain any strength. We had a visit from mesowarrior friends Mavis and Ray on Monday which was great. We had a good chin wag and a walk along the seafront as the weather was so good. I did warn Alan that if he stayed still for any length of time Mavis would take a photo! There are a few photos on Mavis’s blog if you would like to see.

On Wednesday I had a follow up appointment with my surgeon/consultant. She was very pleased with my progress and my x-ray was good. She doesn’t want to see me again for 6 weeks and we can now drain my chest every 3^rd day – so we are getting there. I have put on 1.25 kg in the last 2 weeks. Another 7kg needed to get back to where I was before surgery. So another few weeks to regain strength from the surgery before we have our next appointment with my oncologist to see what we do next to fight the beast which we know is progressing. I do not feel confident about yet another regime of chemo just now – my body really isn’t ready for another battering so soon – but if this is my only option then................

After my hospital visit we went into Canterbury for mooch round. We had a scrummy lunch in Carluccio’s and a very brief look in a few shops. I still have not regained my love of shopping! Alan said not to worry!

Well today is the day Alan takes over from the nurses in draining me! They have ordered him a large box of big boy sterile rubber gloves! I have every confidence we can do this! Today the nurse will supervise us then we are on our own. Hopefully this will allow us to have a few days away  – thinking about the New Forest.

Our little grandson Ethan has got Scarlet fever – haven’t heard of that for donkey’s years. He is on the mend now and hopefully soon back to his normal boisterous self. Love you little man.

Tess x

N is for .....

.........Nurse

Yes I have seen quite a few nurses this week!

My wound did not feel right on Saturday and on Sunday we went to A&E on the advice of my nurse who comes to drain my chest drain. This has to be a record – I was in and out of A&E in just 21 minutes thanks to a few phone calls from my lovely nurse Debbie. Other patients had a wait of 2-3 hours which I think is the norm. So we were back in time to watch Andy Murray get gold! Yes I had got an infection where the tube enters the body. Just picking myself up from the surgery and now something else to deal with!  I was also getting a bad reaction to the very sticky adhesive dressing that comes with the pluerx kit. So antibiotics for the next week or so. Please Lord just give me break! 

The saga continued! I had great difficulty swallowing the antibiotics ( I have a problem with gelatin coated pills and these were giant 500mg jobbies) and a very disturbed night. I went to my GP on Monday morning and he said I should not be on the high strength dose as the prescription is based on body weight. So he gave me the normal strength for a longer time in a liquid form. I am doing alright on this prescription.

Nurse came again on Tuesday and said that stitches really ought to be removed as they were not helping the infection and they were getting a bit mucky but they had to contact the consultant/surgeon at Guys hospital to be given the OK. Given the thumbs up the stitches were duly removed on Wednesday by another 2 nurses – bliss! They used a curved scalpel blade which was a bit scarey as they were right up to my skin – I held my breath and closed my eyes – all was well.

On Thursday I had 6 (yes 6) nurses! They were on a training day. They had done Day 1 training on using a Pluerx catheter system with the manufacturers but for Day 2 training they had to observe a real patient being drained! They were all lovely. Alan had to leave the room – he couldn’t cope with all those girls in uniforms!

In between times I have been getting out and increasing my walking distance. The weather has been good so the walking along the prom has been good. 

Tess x

I know God will not give me anything I can't handle.  I just wish that He didn't trust me so much.  ~Mother Teresa

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