Top of the League!

Well I can experience being top of the league for once (as Ali joked) … But I will explain more after the first three paragraphs!

Last Thursday after a Physio appointment I picked the kids up from school and attended Joshua’s school christmas concert – so 2 of my first ‘home’ targets achieved – It felt so good to be out, to be welcomed by so many of you, but most importantly it was great to be able to see Josh smiling throughout the whole performance as a King with his friends. We felt very proud.

I was really struggling to get any decent sleep for the first week home, the second week has got slightly better, but replaced with nightly sweats and coughing fits. However, at our appointment today Mr Waller re-assured me this can all be quite normal post op, with the sweats potentially coming from the gradual reduction in all the medication – cold turkey! The Coughing is due to my insides moving around and adjusting to the space the left lung has left behind!! I have continued with my daily walks though (with some encouragement from Ali!!!) which do make me feel so much better.

I do get highly frustrated with lack of energy and not being able to do normal stuff. There is only so much TV you can watch!!! However, I need to keep reminding myself my body needs to rest, and only 4 weeks ago we were on the night before the big op!!! I’m such an inpatient-patient.

Today was results day and it has given us a huge boost. It couldn’t have gone any better. Mr Waller confirmed my X-Ray shows the space where the left lung was, is now about 3/4 full, as to be expected. He was really pleased with the way my body was healing with ‘the shark bites’ and is happy for me to start chemo in the New year. He confirmed the memo is at Stage 1 and that the tumour hasn’t spread to the heart lining, diaphragm muscle, or any of the 13 lymph nodes. He confirmed the tumour was in the inner & outer chest lining and the diaphragm lining. He said I am like Leicester City, top of the league for Meso (hence as Ali said, I don’t normally experience being top with supporting EFC!!) Aside from the obvious of not having meso, the results couldn’t be any better. I can’t describe how good this feels. As you can imagine this is the best Christmas present we could wish for (in current circumstances), and despite our tiredness, has given us both an amazing boost. Chemo will now follow in the New Year.

Ideally I would love to go to a local and buy you all a drink to celebrate and say thank you for all your support, but as that is not possible we will be donating money to mesothelioma uk this Christmas. Instead, please lets have a Virtual Toast – wherever you are and when you next have a drink please raise your glasses to: all the medical team (whether in Glenfield, Wythenshaw, or the Alex hospitals) whom have looked after me and to family & friends – all of you whom have supported us amazingly throughout. Have a wonderful Christmas and a fantastic 2016 with family and friends. Treasure every moment….

Lots of love and a massive thanks for your continued prayers, help and support.
Dave & Ali xxx

1 Lung, 3 weeks on!

They say life begins at 40 – well my life with 1 lung began 3 weeks ago!

The 3 weeks have gone quickly – though I guess I wasn’t fully aware of the first 3/4 days!

I was discharged last Monday, after 2 previous days of time out (for good behaviour!!) for tasty pub lunches – food never tasted so good thanks Ali & Steve. Sunday Steve also drove me to a local shopping centre to fix my phone, but after 1 flight of stairs and walking 100 metres I realised it was a step too far. My body was telling me I had done too much. My Registrar Rocco had suggested this time out of the hospital over the weekend, which helped us greatly. It gave both Ali & I confidence in coping with the new challenges ahead and what my body could and couldn’t do. On the Saturday, I was ready to go back to the hospital for the comfort and security, but by Sunday evening, I was ready for the great escape!

I woke Monday very excited to be going home, my bags were packed before Ali & Vanessa had arrived. After waiting though for what seemed forever, we said our good byes and thank you’s to all the wonderful staff on Ward26, and headed home (via McDonald’s – a bit of comfort food & anything better than the hospital food!). Thank you to Vanessa for a very clean car and driving us home, it was a massive help.

We surprised the kids and after 13 days of not seeing them, it was such a wonderful feeling to be able to give them hugs and to be around them …even when they did start bickering 10 minutes after I had arrived home! We have told them that I have had my lung removed, shown them the ‘shark bite’ but as yet not mentioned the C word. This may well come in the New Year when we have the results and chemo may start (but your continued current discreetness is appreciated). One night at bedtime this week, Erin said to Ali “Daddy isn’t really ill is he, he hasn’t been sick in the toilet has he, he is just resting”….Considering everything, they have done exceptionally well. We are really proud of them and thank you to all (Especially Grandparents & Family) whom have helped share in looking after them, giving them extra hugs, pressies, tlc etc.

Each day I have improved. I am trying to get out for twice daily walks, breathing exercises and I’m putting the weight back on (what a shame!) Advice is high calories/ high protein diet. Thank you to Nicola and Jo for setting up a fantastic meal rota for us and to everyone who has contributed to that – they are delicious and it has helped massively.

For this last week at home, Ali has compared it to bringing your first new born baby home. You’re worried about how you will cope and what to do. It’s been scary at times with my breathing, coughing and also shivers etc, but as time goes on we are learning how to deal with it.

In the early days I did suffer with breathlessness, but this is improving. The other difficulty has been sleeping. On my second day home, we went to a mobility care shop for a bed relaxer cushion to help and I walked in and broke down. I felt I’m only 40, I shouldn’t be buying these things. It’s odd how it hits you and at times when you don’t expect it but also I know I’m lucky to get to 40 without any extra help compared to many others too. Thank you very much to Gen for sourcing & delivering a proper back rest to help me further. We also have managed to source a Physio now which starts tomorrow.

I am trying to change my pattern of pain killers to try and help me sleep (and Ali sleep too) now at night. Being up 4/5 times a night is a right pain (& again like having a new born – though I guess Ali did do more of that with our kids!!), but considering it’s only 3 weeks on, I can’t be too harsh on myself. I am up every day and walking further every day. Today, I walked to Doctors and back – 1.6 miles. Who needs two lungs?! It really is amazing how the body is made and how mine has reacted.

Tonight as both kids were out for an hour, Ali & I even managed a quick drink – Ali on the wine and me on a pot of tea in the local!!!!! I look forward to that first beer at Christmas, and feel very fortunate as there are many others whom will have to spend it in hospital (Malcolm Armstrong from St. Helens, I do hope your operation went well at Glenfield and that you do recover in time to be home for Christmas). Ali & I have both missed celebrating Christmas at various events, but I’m hoping to attend Joshua’s Carol Concert tomorrow night – just excuse me please for those whom see me if I’m armed with antibacterial gel!!!

I will try and write a blog before Christmas as we travel back to Leicester & get results from the Op and next stages from Mr Waller on the 22nd December.

In the meantime, I know we sound like a stuck record and you all keep saying to stop saying ‘thank you’, but your help, advice, support, humour is all much appreciated. Cheers!

Lots of love Dave & Alixxx

10 days, 10 Marathons

We were told by one of our consultants, “It will feel like you have been hit by a truck, and that each step would be a marathon”. Looking back over the last 10 days, I wouldn’t argue with this advice (even though I have never ran a marathon!!!).

Surgery day was relaxing (as can be) nice lie in, spoke to the kids before school, and then watched Ali eat breakfast to ensure she did! After checking back into the ward, and going through final checks, I was ushered down to Theatre about 12.30pm. Ali was supported by her parents & best friend Emma. Thank you so much Emma – especially your support to Ali in those first 48hrs after the op – I believe it is very important your nearest and dearest watching are supported more than the patient! You were there for a shoulder to cry on, but also someone who was able to make her laugh and smile at the right time & stay awake with her throughout the night when I was at my worst!!!

Whilst in theatre I remember the kind nurses & talking football with the anethetist, whilst he put various needles, drugs in me etc. After talking through the whole procedure in detail Tuesday, I had 100% trust in Mr Waller and the team, to do their job and remove the necessary…… Next thing I remember (vaguely) is waking up in Recovery about 5pm, and moving onto the Ward to see Ali and her parents about 7pm ish!

Back on ward 26 in HDU, I remember feeling relieved at getting the first step over with, being examined every hour, and seeing Ali, with her Gorgeous-smile! (getting some browny points built up…..) Ali told me the operation was a success, one of the registrars advised he had never seen it caught this early before, they didn’t have to remove as much of the diaphragm as they first thought and much if any of the heart lining. Also after the operation I didn’t need any support breathing as my other lung was doing it all for me! Mr Waller and his team did an excellent job – a huge thank you to them – and they were really pleased with how it had all gone (we await results later this month). I do remember moaning to Ali about the tubes down my throat, being very uncomfortable, but they were everywhere – neck,nose, arms, chest, stomach, down below! It was like spaghetti junction!!

Whilst in HDU, I was constantly checked and scored every 1 or 2 hrs. After an okish first night seeing every hour (still nill by mouth), the nurses got me out of bed, and I was able to have my chest drain removed. Ali & her parents came in to see me, and good progress was being made, so they left by 1pm to see the kids. My Dad and sister arrived, and commented that they didn’t expect me to be looking so good, though my first trip to X-ray in a wheelchair by Lewis Hamilton the “porter” made me feel a little dizzy……

Back to the advice mentioned at the start, I would like to add 5 more words:
“It will feel like you have been hit by a truck, well as Emma phrased very well the ‘TRUCK REVERSED BACK OVER ME ‘ that next day & night! Thus, 24 hours post op, I was sat in my chair, having moved around to get changed, X-ray & physio. I started to feel sick, and get hotter and hotter, next minute I am lying back on the bed after blacking out. My scoring was causing them concern, and due to the low blood counts & blood pressure, they considered moving me to ICU. I remember seeing 2 ICU doctors, ward specialists, Mr Waller arriving at 11 pm, all wondering what’s happening. I was mostly oblivious to it all, in and out of sleeping, and my worried wife 2hrs away in Manchester. Thanks again to Nigel very much for driving her down at 11pm and Emma being here to meet her at a post midnight ‘party’ for the three of them here- not!!!

Whilst I was drifting in and out of sleep, Nigel was driving back home 4.30am – no excuses for not staying out on the beers past midnight now!!!!!!!!. Ali & Emma pacing the floors, and trying to get some rest, whilst I was receiving amazing support from Everyone on Ward 26! Constant 24/7 monitoring, calls to my surgeon in the night and 2 blood transfusions was finally doing the trick. They advised it was okay, but when you have so many people examining you, and you are looking the same colour as pure white nhs bed linen, it’s not always that easy. However they were right, and within 24-48 hrs, I had improved, drinking 60ml of water an hour, and I started to ask for more!

By Saturday teatime I had turned from white to yellow to more like my normal colour & was drinking unlimited fluids and had taken my first mouthful of Heinz Tomato soup! It had never tasted so good. I was now slowly on the upward trend. Eating, drinking and walking more. Continued monitoring on HDU as it was possible I would have to go back to theatre briefly to have fluid drained away from the space where the lung had been removed. The space needs to fill naturally and not too quickly as it would cause extra pressure, therefore Monday morning I was nill by mouth again just Incase, but luckily by lunch Mr Waller was happy with progress. However, Blood counts had dropped, Ali said I looked very pale & weak so they arranged for 2 more units of blood transfusion.

By Wednesday morning, there was only one thing major left on my mind to achieve…… One of the side effects of all these drugs; epidural, paracetamol, anti-sickness, codeine, & Tremadol (never again-made me hallucinate, eyes roll) is Constipation! All I wanted was a good poo…. Not matter how young or old we are, there is always a story when it comes to poo…. Happy if you want to skip this paragraph, cringe, or just laugh……So having taken the lactulose, Senekot, rockets up my bottom, and other stuff for 6 days, as I was still in pain. They put me on stronger sachets which should do the trick. Well for 30 minutes of loosing all my dignity and nurses suggesting ideas via Alison (from outside the room!!), it was marching on the step, knees up to the chest, that finally led to the best poo I have ever had in 40 years….(I’m sure it’s close to labour- only joking ladies)! I was exhausted, walked to the bed and literally fell asleep in seconds!! Everyone who stepped through my door in the next 24 hrs heard the story…..

Each day has seen improvement and feels like a marathon: getting out of bed on my own; first shower; first shave (3S’S!), first steps without a stroller; walking down /up ramp; stairs yesterday, getting dressed; coughing, the list could go on. These are the things we take for granted, but one that each day makes me proud & so grateful now to be able to do.

I was told on Friday that I could spend the weekend going out on trips away from the ward, and all being well being discharged on Monday. This is great news, as it allows me and Ali to gain confidence in getting out and about and experience what works or not! Also going home on Monday means I get to see Josh & Erin. I have been able to speak to them just these last few days but not being able to cuddle or kiss them, be with them, is extremely hard. They have done fantastically well and have been well entertained and looked after – thank you to you all!

Today I have had 32 staples removed, the other half will be tomorrow! I am now in normal clothes for the first time, and enjoying a steak in a local pub with my good lady. Those first steps outside felt good but very emotional.

A special thank you to everyone on Ward 26, I couldn’t have achieved this without their support. Thanks to Jo (practice on your jokes!), Kate (whom looked after Ali& Emma so well through that awful night). Becks, Claire, Natalie, Eleanor, Lauren, Hayley, Nunzia, Dr’s, Specialist Thoracic Nurses, sisters the list could go on. Apologies as I can’t remember all your names, but every single one of you, do a fantastic job, and your encouragement, kindness and banter have kept us sane throughout it all…. Thank you so much.

Throughout we have received so much support. From afar in America, Australia, New Zealand, a special mass in Peru! Whether it’s helping out in bramhall with kids, dinners, visiting me in hospital, driving & supporting Ali & our families too, or just simple texts/ messages/ prayers each and everyone single one of you have played a part to get us through. We thank you from the bottom of our hearts.

Lots of love
Dave & Ali xxx