Day 338

It has been a while since I updated my blog and when I tell you why you’ll probably appreciate I had other things going on.

We had a great end to what was a tough, but worthwhile year of stem cell treatment and I was doing pretty well, my hair even started to get back to its normal straight self and lost the curls, although the darkness is still there, but hey, that’s the least of my worries. I was feeling more independent and willing to face reality that although I’ve had the stem cell treatment it’s not a cure for my failing eyesight. For some it’s hard to come to terms with issues we face, much easier to brush them under the carpet and put on a brave face, which is what I have done. At the end of the year I went to a 2 day workshop lead by the Royal National Institute for the Blind (RNIB) centred around Understanding Sight Loss. Anna took some time off work and came with me, which I think she’s tell you herself was pretty insightful (no pun intended). The course was lead by an inspirational lady who became blind after her 1^st child, she leads a ‘normal’ life with the help of her Guide Dog and an aid who her assists her at work. Now, I don’t have full sight loss, so I am classed as ‘visually impaired’; to put that into context, when you go for an eye test and they ask you to read the row of letter on the white board I am ‘count fingers’ as I can’t read them. Some of the folk who attended the course were recently partially sighted, one from a stroke and the other from a freak accident involving a door handle – I won’t go into detail!

It was comforting to spend 2 days discussing understanding sight loss with those who are experiencing the same thing, to listen and to not only be able to sympathise with their woes, but to find positives in our daily challenges. I suppose my situation is slightly different in that I also have mobility and memory issues.

Anyway, we are into January 2018 and I’d since been in touch with the RNIB to discuss how I could get involved with the RNIB on a volunteer basis, but it soon came to a halt as I had another incident with the stairs. I know, I do love those stairs! I got up to go to the bathroom in the middle of the night, was walking back along the corridor to our bedroom, lost my footing and fell down the stairs. Anna woke up, probably from the almighty bang and my yelping, and with the help of my Dad we made it to A&E. The long and short of it is I had fractured my back, I didn’t realise at the time as I didn’t score my pain at a 9, more a 5/6, whereas the Orthopaedic Consultant was puzzled as to why I wasn’t reporting my pain as higher; the more he got to know me through my time in hospital he realised I don’t feel pain like he or you would, and this is probably a cause from my MS – either that or I’m one of the X-Men!

I missed Freddie’s 6^th birthday party, which really saddened me, but he came into the hospital on his birthday and we had a cake for him to celebrate. I got an infection while in hospital and I battled through it, but it meant a 5 day delay once I’d responded to the antibiotics as I needed to be well before any metal was put in me. The brilliant Consultant fixed my T12 fracture with screws, cement and some bone graft taken from my hip, ouch! There are always risks in any kind of operation, but one which worried me and more Anna was the risk of losing my sight completely if there was interruption to the spinal cord; the risk was low, but increased due to my MS and optic neuritis. When I came out of the operation and into Recovery one of our Anaesthetist friends met me in there and FaceTimed Anna so she could be comforted that I could see – a bit of a moment for Anna, and we are so grateful for his friendship.

After a while in hospital I came home, a few gifts from Occupational Health for the home and a back brace to aid my recovery. So, having been on a good stretch my fall down the stairs at the start of the year was a real blow. I used a walker for a few weeks and have gradually got back using a stick outside the home. It’s now April and I had my first trip to the gym and pilates lesson since my fall; I’m feeling more positive.

Last year I was honoured by a couple of close University friends, Mark & Dave, to run the Belfast Half Marathon for the Blood Fund, the charity for the facility that carried out my stem cell treatment at Hammersmith Hospital. This year another friend, Hannah Smith, who Anna went to school with, found out in January she got a place to run in the London Marathon and asked if she could run it in honour of me to raise funds for Multiple Sclerosis. This is the first marathon Hannah will have ever done and I am impressed with her gusto and determination. She’s found herself training in rain, snow and more snow and this week is the first time she’s done a run in shorts. Hannah’s husband Rob is a good pal of mine, our boys are good friends and Hannah has been great support for Anna. She’s made her way from Norwich to London today, she’s picked up her kit and I hope she’s going to be in bed now after a hearty pasta supper. I’ll be tracking Hannah on the Virgin Money London Marathon app, with her number 43980. I’m sure many of you may know of folk running the marathon with a story to tell, but if you don’t and fancy giving Hannah some last minute donations to the Multiple Sclerosis Society then please do, she would welcome the donations and inspirational comments. You might think, I can’t donate again, but it’s not for me, it’s for the Charity that can help me and others.  www.justgiving.com/fundraising/hannah-smith2018

Good luck Hannah – I’ll be watching and wishing I could run with you.

 

To download the app, search ‘Virgin Money London Marathon’ in the iPhone or android app store

Day +111

Some weeks on and with hair on my head and a smile on my face I am feeling stronger. It’s been a while since my last post, it’s been noted and thanks for the reminders.  I haven’t written because I suppose I didn’t have much to say or to update on, but as friends have been in touch asking after me, I realise even a little update is valued and it’s good to be heard.

So, what have I been up to? Well, I’ve had 3 consultations with the Consultant Haematologist at Hammersmith Hospital, Dad has driven me on each occasion and I felt rest assured he’d pick up anything I forgot to ask or forgot to recall to Anna when I got home. The consultations have essentially been blood tests, checking my levels and making sure there are no signs of unwanted bacteria growing in my body and to monitor my medication. All 3 consultations went really well, full marks, and since everything is in order, my bloods are ‘normal’ I have been discharged from his care – hurrah. I won’t just be forgotten about post treatment, I will still continue to see a Neurologist at Charing Cross Hospital. Unfortunately, the Neurologist I saw last September and who put me forward for the HSCT treatment is unwell and not taking clinics. If I’m honest I am slightly upset by this as the one and only consultation I had with him changed my life and I know I would be in good hands. I do of course wish him well with his health. So, I will be under the care of another Neurologist, a specialist in MS which is good and gives me confidence. I’ll await an appointment for an MRI scan next year.

So what’s changed and how am I feeling? My walking has definitely improved, I can certainly walk for longer periods with less wobbling, although still with a stick outside, but that’s ok. When I say longer periods I don’t mean I’m ready to trek the Lake District, I really mean for 10’s of minutes.

My stamina is such that I’ve joined my local gym! I know, I am very pleased to be doing some exercise, I’m a long way off from the muscle power houses, but if I get a spray tan and a string vest I could try and fit in…or maybe not. I get the bus from outside my house and the bus stops outside the gym which is perfect. Although my first bus trip to the gym took longer than anticipated as I couldn’t see which stop to get off at and the bus driver wasn’t the most helpful.

I usually bump into a friend at the gym and will join them for a coffee or lunch afterwards, this really brightens up my day as it can be tough staying at home surrounded by four walls. So, when Anna comes home and she asks how my day has been, I’m delighted when I can tell her something exciting that’s happened in my day “I bumped into one of our lovely friends at the gym and had lunch with them”.

Along with joining the gym I have started 1:1 pilates lessons; I did pilates about 2 years ago and it really helped me, so I’m excited to be getting into it again for my core stability as it will really help my rehabilitation and make me stronger. I’ve had some sessions with a fantastic teacher, a former ballet dancer who has been teaching pilates for many years; her approach to pilates and how she teaches is very good. She’s unable to take me on as a client, but she’s been brilliant and has organised for me to have 1:1 sessions with a pilates teacher she actually taught. I love how things work out sometimes.

I feel much chirpier and life is pretty good. I only wish I could do that little bit more and I don’t feel idle. I am principally talking about my eyesight, which may be a touch better than it was, but I have not had my eyes tested yet and so I don’t really know what the real situation is. I have an eye test booked in for this Friday, so I’ll get some clarity on whether my vision can be helped at all by the optician. The reason for my poor eyesight is my optic nerve, so I may need have a referral to the ophthalmologist, but we’ll see…

I had a lovely break in Knutsford with my folks while Anna went to Spain with the boys to see our friends Anna & Mike – guys I’ll be there next year. It was lovely spending time with Mum and Dad and it was also an opportunity to touch base with the financial firm I’ve been working with – feel free to get in touch if you need any financial advice, I would welcome any new clients or merely a chat.

I turned 40 in July – I know, you wouldn’t think it! I had a brilliant weekend celebrating, an afternoon tea party at my folks with family and the Colmans; we lived down the road from each other when we were young and have been great friends ever since, it great to see the whole crew. Anna arranged a party at home for me on the Saturday afternoon with a hog roast and a bouncy castle for the kids – there were loads of kids with bellies full of ice cream and a brilliant cake baked by my talented sister, Sarah. It was such a memorable afternoon to be surrounded by my friends, some who had travelled pretty far just to celebrate with me, thank you.

Looking back and writing this blog I realise I’ve had a pretty busy summer; I’ve been to parties, an evening outdoor concert (parking with my disabled permit got us pretty good VIP parking at Blickling Hall), listened to the cricket on a friends allotment while he tried to kill knot weed, days out at the beach with the boys and I even had my first train trip to London last weekend to go to our friends Imo & Rich’s leaving party – I was exhausted the next day, but wouldn’t have missed it.

The highlight on my excitement radar is a run in Northern Ireland, which my University muckers Mark and Dave are doing in my honour… good on them, great lads, and many thanks to all those who have given so generously thus far. I am bowled over by 1. The generosity of people; and 2. The desire to do their bit and the thought, from two such lovely fellas. They have created a justgiving page, please feel free to have a look https://www.justgiving.com/fundraising/daveandmarkrunbelfast

I am now a couple of weeks on from my consultation in London, at the Hammersmith. Dr Gabriel talked positively about my recovery and he was very pleased to see it. Since then, I have dropped him a note to say thank you for all that was done. I think about the nurses who looked after me, often and that is partly what I would comment to all those sponsoring the run in a few weeks, which Dave and Mark will conquer. I would like to do it and would so love to be able to.

Nearly forgot to mention my hair! It’s grown back quite a bit, I’ve got the two-tone look, dark with some light bits running through. I really thought it was all going to grow back grey, it’s pretty dark, but I don’t think it’s grey; it does make me look different, but there’s a story behind my look!

Rugby season started, my boys had great fun while Anna cooked a lot of bacon on kitchen duty!

Day +34

It has been 2 weeks that I have been out from hospital, the second week has been better than the first.

It feels great to be back home where I feel stronger. I have my home comforts around me and the boys are rarely far away during their time off from school/nursery. I feel more alive and my parents, friends and in-laws have been fantastic, although I am not the most effervescent of characters at the mo’. But each new day is different than the last. I can either do more or offer more and I am increasingly independent.

The one main improvement I’ve found since the HSCT is my fatigue has improved. It wasn’t uncommon for me to fall asleep at the table, but now it’s amazing, I don’t doze off and can enjoy sitting at the table with my boys listening to them telling me what they’ve been up to – ‘nothing’ is usually the case, but I know behind their cheeky grins they’ve been up to lots!

During my first week back there were some days when I could do little but rest and had a few headaches, which is fine as it was my body trying to rest; it’s been working pretty damn hard recently and I’m still amazed by the whole process.

I’m no longer classed as neutropenic (no neutrophils), I had a short period in hospital where I was on a neutropenic diet, but I still remain cautious over what I can eat. I’m staying away from shellfish, salad leaves, raw fruit and vegetables without skin or making sure the later are thoroughly washed and cooked to kill any bacteria. We don’t’ pick up our food from the side of the road, but Anna and I just don’t want to take the risk of any unwanted bacteria getting into my system and causing any unwelcome issues.

Anna is getting through quite a few packets of Dettol wipes and antibacterial spray, again to prevent germs spreading, particularly from the boys. Anna tells me there are notices up at Harry’s nursery informing of sickness bug and scarlet fever, the boys are resilient as they’ve got a pretty good immune system, but again, not taking any chances.

Now, I’ve already mentioned my fatigue has been an instant win, but the hot weather can set me back with extreme lethargy which is typical for those with MS, I know the rest of you have found the heat intense too. I’m not complaining though as I’ve enjoyed BBQ’s and being in the garden watching the boys jump, dive bomb, slide and roll into the paddling pool, it really makes me smile.

My skin is extra sensitive since the chemo, so I’m trying not to be in the sun for too long and have been slathering factor 50 on my bald head, but I’ve noticed it was a little red, so I must remember my hat.

I had my first visit from the Physiotherapist on Monday. She did some strength tests on me, showed me some exercises and took me for a walk in the garden. She was impressed with my strength and mobility, however, advises that although I can walk around the house without my stick, I should use it when walking outside for support. I did ask whether she’d had a consultation with my wife before as she said the same thing! Walk tall and chest out people!

My next highlight is next Tuesday, when I have an appointment with the Consultant Haematologist at Hammersmith Hospital. It will be lovely to walk in there as a better man, higher on the joy of life. I will also call in on the nurses with some treats, who looked after me so well and saw me through what were some dark times.

I would like to do so much and my mind runs away with fantastical ideas, which are rather pie in the sky just now, but I’m holding on tight and I will get stronger with each day.

Until the next time, smile long and laugh loudly.

Day 19 – Home!

I’m home, it’s great, Praise the Lord, I’m happy, it’s been tough.

Today is a good day, back with my wife, for a refreshing new life. The boys have both grown and they’re happy and lovely. I feel lucky and drained, fairly empty, not pained.

I realise that tomorrow may be tougher than today, as I embark on my drug selection and forge my way.

I hope to make strides, please all linger a short while, as I tread my boards with a shake and a smile.

The last few weeks have been a trial and I’ve battled to smile, I appreciate your listening to my sorry story.

But now it’s all good and I’m bacķ in the groove. I’ve had a a fine supper and supped some wine.

Breathe deep and long, feel happy and strong. Speak soon, Jonno

Day +15

It’s been a while since Jonno’s last blog. Whenever we plan to update the blog, when it actually comes to it Jonno is not up to it. He’s been dying to post some positive news, he has had positive days, but sadly they’ve been overridden by bad days.

Last Saturday Jonno was on the home straight and making plans for him to go home, albeit by ambulance as the physio wasn’t confident at that point that Jonno would manage stairs. He managed to walk 10 metres, but he needed a few rests in between. The next day Jonno was a new man, it might have been the Superman t-shirt he was wearing, a gift from the boys, and it certainly gave him the super powers he needed to walk a full length of the ward, with a rest in the day room and a return walk back to his room. He was spurred on from the smiles and mutterings of congratulations from the nurses station, held his head high and soaked in the positivity. However, shortly after this Jonno experienced haematuria of the bladder, a set back for Jonno and scratching of heads by the Consultant and Senior Registrar. They did what they needed to do. Jonno’s hospital visit had been extended.

Since then Jonno has been up and down with a fever, he’s been moved from one antibiotics to another due to a reaction from one, not strong enough or breakthrough infection.

Yesterday afternoon though, when I’d returned from staying in Kent to see the boys for a night, Jonno was a new person. The specialist nurse, Gillian, came to see us, again to plan for heading home; what we like about Gillian is she is never in a rush with her visits, she sits down and talks through everything, answering questions and putting Jonno’s mind on a positive track. She suggested Jonno make notes of what he’s achieved each day, so he can look back the following week and see how he’s progressed and to set goals. Jonno’s recovery won’t be a straight path, there will be good days and there will be bad days, but we’ll take each day as it comes.

The improved Jonno that I returned to yesterday sadly didn’t last very long. We’d not long said goodbye to Gillian and we joked we hoped not to see her on Monday as Jonno would head home at the weekend, but then Jonno spiked a fever and experienced uncontrollable shakes of his body. The Consultant ward round was going on at the time and the Consultant openly admitted that Jonno’s fevers were puzzling them, his bloods and urine are clear, so they are not sure where the infection is, BUT they will find it and they just need to find the right cocktail of antibiotics to kill it – so, a new antibiotics was started last night, after they finally got a vein for the cannula as his PICC line came out a few days ago. Jonno felt like a pin cushion!

Jonno has had some visits from Sandhurst friends, reminiscing the days for those that are no longer serving and enjoying fruitful banter. He’s been watching and listening to a lot of politics, which he loves, but the frustration is clear and messages repeated #GE2017.

Jonno’s parents came to the hospital for a visit this morning, this certainly brought a smile to his face, and mine. He’s had a little walk along the corridor and is now in back in bed for a rest. The doctor came to see Jonno this morning while David was here, I was relieved as it’s always for doctors to speak the same language and particularly as David has a keen interest is his son’s health. They suspect Jonno may have something called Engraftment Syndrome which can present itself after HSCT. This would explain the fevers, rash and perhaps why the blood cultures and urines haven’t grown any bugs. So, he’s on steroids to suppress any inflammation and Domestos type antibiotics – the idea being no bug has a chance of growing inside him. Jonno’s not going anywhere until he’s feeling better and he’s happy being here as it’s the best place for him right now.

When Jonno does finally go home, to be surrounded by normality which will spur him on.

 

Day +5

Wow, what a week or so. I have gone from the highs, to lingering too long on the lows.

As you all know, I have got my STELLs (stem cells) back and I am sure that they are trying to find their feet, while I go through okay and better days! After having my STELLS returned apparently the room spelt like a freshly opened can of sweetcorn. I say apparently as I couldn’t smell it because they are my stem cells, all very odd, but it’s the odour I expire and from my breath, during this time. I could have been mistaken for the Green Giant as I’ve looked quite green and grey, Anna said she had to check I was breathing a few times as I looked pretty dead. But, I’m alive and trying to get more strength.

I get a flow sheet from the nurses each day, this details my bloods; my platelet levels have been pretty low, I’ve had a couple of platelet transfusions, but my levels are still low, so we’ll see what today brings.

I’m taking a concoction of tablets throughout the day, permanently on a drip to keep my kidneys working and have been on antibiotics for what seems like an age, trying to fight and prevent infections in my non existing immune system – white blood cell count is 0.0! The dress code for my double sealed room is a plastic apron and washed hands. Andy came to visit with Pete Jenkins, he (Andy) was dressed in a suit and tie and commented he felt like the Health Minister dressed how he was.

I’m missing my boys, I’ve been sent some of their artistic creations and letters which puts a smile on my face, thank you. Anna is heading back to see them today, I’m very jealous, but I get to see MY Mum and Dad over the next couple of days.

Anna has been my rock, listening when I occasionally talk, feeding and showering me, and coordinating the odd welcome visitor. I am glad that love is not wholly transient, such that you cannot just park it during the bad times.

Stem Cell Birthday

Today I woke up with a smile on my face, it was a big day, it’s my stem cell transplant day.

There was paperwork, people in white coats, a liquid nitrogen chamber containing three frozen bags of my stem cells and there was me ready to receive them. My nurse said a prayer for me before we started, I feel blessed.

I celebrated with cake from a patient next door and a visit from my sister Sarah, just wonderful.

Happy stem cell birthday to me, the start of a new chapter, I hope.

Day 5

Hi folks, I’m afraid it’s Anna again! Lots of you lovely people have been asking after Jonno, which means I’m overdue with an update.

So, what’s been going on at the Dacie Ward? Jonno completed his 4 days of chemo and 3 days of ATG, I’m please to say his body tolerated the ATG much better than the 1st day; Jonno was pretty relieved by this. Today he’s had a drug free day, just a drip to keep him hydrated.

He’s had some issues the past couple of day, which I won’t go into detail, but an ultrasound has given an all clear, so they are monitoring his organs closely.  I’ve been in the hospital pretty much all day everyday, I’ve got my own little routine of getting in at 8am (to make sure I get a parking space), getting a coffee and sitting in a waiting room doing some work until visiting hours start at 9am. It’s lovely being with Jonno, his body is being put through so much, so he needs help and although there are great nurses and healthcare assistants I’m very pleased I’m here. I’m desperately missing the boys, but I know they’re having a great time with grandparents. we are blessed to have them all.

I broke my routine today and went into the London office this afternoon, knowing our friend Charlotte was coming to visit to keep him company.  I came back and Jonno has spiked a fever. I get the hint Jonno! So, the Senior Registrar has been in to see him this evening and they’re giving him 3 different types of antibiotics for the next 3 days to try and kill off whatever bugs are causing him to be unwell. This is all to be expected; when Jonno had his initial consultations before any treatment we were told he would get an infection, but they take bloods, urine and any other samples on a daily basis, more if needed, so they are constantly monitoring him.

Tomorrow, is a big day, it’s the day he gets his stem cells back! I will definitely update you with how the big event went.

Jonno is just BRILLIANT

 

 

 

 

Day 2

This is Anna giving an update on Jonno. Day 2 of treatment and Jonno is feeling a little unwell, but is doing really well. So, what has he been up to? Yesterday kicked off with chemo (cyclophosphamide for the medic folk), this is intravenously through his PICC line, he’s had his second dose today and 2 more days to go.

He’s having MESNA continuously which will protect his kidneys and urinary tract from the chemo and earlier today he started ATG (thymoglobuline), an anti-rejection medicine to prepare his body for when his stem cells are returned. The trial dose went well, they monitored him afterwards and gave him some piriton and steroid and seemed to do pretty well. He’s started his main dose of ATG and this is causing his body some upset. His body was going into spasm and he’s spiked a temperature, all expected from ATG and the nurses know exactly how to react: pethadine for the spasm, anti sickness and also running a blood culture, even through they know the spike in temp is from the ATG, they want to be double sure. They are very efficient and seem to run a tight ship here.

Jonno had very high spirits this morning after an upset night, he’s amused his nurse with his wit and charm, she thought he was very amusing. He’s not feeling a barrel of laughs at the moment, but he’s fully prepared for this ride and is in safe hands.

Thank you everyone for all your comments and messages, he loves reading them and the support spurs him on.

I’m in!

Today I got, “the call”. Luckily it wasn’t an error from the NHS cyber attack, I’m in and I’m not moving!

Anna and I were quite well rehearsed for this call, our bags were still packed from our last visit, so we picked the kids up from nursery and school, packed the car, dropped the boys off at my folks and battled through the Friday afternoon traffic. Sat Nav kindly told us, “you have reached your destination”, hurrah!

I have a great room on the transplant ward; ensuite with a fridge and TV, my home for the next few weeks.

Anna is staying with Charlotte tonight, the effortless hostess.

My chemo medicine was ordered this afternoon, it’s arrived and treatment will start at 10am. Bring it on!