Bendamustine + Brentuximab Vedotin

Hi Jason

How are you???!! 

I haven't logged in here in what feels like a long time. 

I hope you and the family are staying safe! 

Hi HopefulMummy,

My family and I are doing well. I’ve been working from home the last few weeks, my son is a sophomore in college. He’s moved back home for this term and is taking online courses. My daughter is a junior in high school and the school’s in our state are closed until at least the end of the month, and that will probably be extended. Her teachers are working on getting set to teach online. My wife occasionally goes out shopping, but we mostly get things delivered. We take turns walking the dog outside. So all four of us are home nearly 24/7. Luckily we all are getting along.

Overall, I’ve been doing well, except that I managed to get shingles last November. I don’t think that it’s a coincidence that that was two months after I stopped taking acyclovir. Luckily, it was a pretty mild case of it since I went to the doctor pretty early with it and got medicine for it.

As far as I know, I’m still in remission. I have another scan coming up in May, but that could get rescheduled. I had the one year anniversary of my last treatment a couple weeks ago.

How are you holding up with everything going on? It’s been over a year since your SCT. How is your recovery going?

I’ve been thinking of you. Take care,

Sorry it popped up in my emails so I thought I would drop in and say hello. 

Good to hear things are still going well Jason and I feel your pain. We are homeschooling three children at the moment so rest assured I will never say a single bad word about a teacher again. To be fair they’ve all just got along with it and it’s mostly done online now so the biggest issue has been desk space. My wife is working from hone and I need two screens for my job which along with 3 laptops for the children school had meant wrestling for the best spots on the house. I don’t much how more my poor router can take, Im sure it was smoking to other day with all of working and me using building 3D modelling software. 
Are the government helping out families and businesses? We have been fortunate and a lot of people will get financial help to stop so many job loses.
It’s certainly strange times to be cancer patient and even more so after having a stem cell transplant. We have all had letters from the government explaining we are a very high risk and more so if your taking immunosuppressants and steroids. Most people are stopping home but still some don’t care which is scary. 
Anyway other wise doing good after a few hiccups so happy with that. 
Stay safe keep up the good work homeschooling. 

Thinking of you all.......I'm in the over 70 group so have been self isolating for a while now.

Stay safe, all....

hugs xxx

So glad to hear you are well Jason and hopefully still clear! I assume it will be a bit tough if they rearrange your scan, but as long as you are asymptomamatic, I guess that would be reassuring in the meantime! Do you have any ongoing issues, or are you pretty much back to 'normal'? 

I am doing okay recovery wise thank you. Most issues are now focused around my mental recovery. I too had shingles at the end of last year, well timed alongside pneumonia, so was pretty rough, but was lucky to be treated from home. Had a couple of swellings scanned since last October too, but they are thought to be nothing, so just told to monitor them as they are still small. I don't believe they have grown, and as we know, these things can grow quite quickly! 

I am homeschooling at the moment too - never looked forward to the Easter holidays more...! Mine are 9 and 6 (and baby 18 months now!) and with the eldest being a homework refuser - things have been 'fun' haha.

As Mark says, the government have advised we stay home for 12 weeks - we are supposed to stay 3 steps away from family members at all times and not go outside at all, even the garden. Thankfully, we are fairly rural, so I have managed to flaunt the outside rule slightly and been in the garden as there are no other people around. We have also decided that as long as my partner and children stay inside and don't visit the shops, that we can have 'contact' as there is essentially no risk.

Luckily, I have the next 2 weeks of food deliveries booked, though there is now an item limit so we find this a stretch with 5 of us to feed and nappies to buy! Lots of things are out of stock too which doesn't help. England have a priority register so that they can get priority to booking online supermarket slots, but there is no such system here in Wales unfortunately, so in 2 weeks time, I have no idea how we will get the food we need. Such a stressful time for lots of people in the area. On a positive - most of my anxiety was centred around leaving the house, so I am a bit calmer now that I know I can't/don't have to! Though it does hinder some of my recovery plan in going out for longer, further etc. 

And again, as Mark says, lots of people are not listening to the rules! We are rural and typically only see 1 or 2 people pass our house every day - this has increased to 10-15 people/families going for cycles, walks, dog walks daily (sometimes more than once!) All touching the same fences, gates etc as they go..... Anyway, moan over lol 

I am supposed to be, finally, returning to work next week. I am a bank cashier, so technically cannot bring my work (all the money!) home, but it is hoped I work from home and become a call handler of some sort. This is only if equipment can be sourced for me. I am a bit worried how I will manage this, as I have been out of the business for 2 years now, so incredibly out of the loop and will have no colleagues with me for support. Any tips on home working?!

So glad to hear from you too Mark. I logged on a couple of months ago to see how you were getting on, I think it was when u were quite unwell and I was worried about you. How are you doing now? How are you managing outpatient appointments? Have you started your re vaccination programme?

Take care too, Moomy. I hope you and your daughter are keeping well, and safe! 

Good to hear from you HopefulMummy123 and Jason too, had been wondering how you both were coping!

we are all ok so far in our separate households, hubs and I have now locked down fully for almost 3 weeks (we picked up our new small motorhome 3 weeks ago tomorrow and at the end of that we locked down!) I confess we were worried for a couple of weeks, but were so glad we drove to collect it rather than use public transport! 

Son (part time Funeral arranger, part time peripatetic music teacher) is still working as Funeral arranger so goes to the office 3 days a week, but is teaching via internet otherwise, and his partner is able to work from home but freelance so pay for both is reduced.

Daughter is also able to teach via internet (two conservatoire teaching posts) and has a certain amount of voiceover work, she’s still in need of immunoglobulins so the decision to go in for that about 10 days ago had her changing clothes in her campervan and again when home after her shower. They have said she’s next on the list for treating herself at home but the list got closed so she waits.....the hospital staff will weigh up the risks to her in another couple of weeks but have provided her with different antibiotics anyway, in case of need, should it be too risky for her to go again. Her partner too is working from home, and their isolation has been longer than any as they knew instantly that the risk of infection would be huge. Their puppy is struggling a bit, settling on a view of the outside world as his ‘go-to’ favourite spot, bless him! 

Stay safe, all of you 

Hugs xxx

Hey guys. 

Yes it certainly strange times with the lockdown and home schooling. I was back in hospital again this morning for my fortnightly appointment and yet again I was the only person in there and the pharmacy, 10 mins in and out. 
I finally came off the immunosuppressants at the end of last week and although it’s early days, so far so good. My consultant has just phoned for my appointment and said my bloods are all spot on so we have decided my next appointment I can have at my own hospital in Exeter and he will see me in Plymouth in 4 weeks. I won’t lie but it’s going to be hard when I hopefully have to say goodbye to them all in Plymouth as I’ve been going there for a while now. The past year has without a shadow of a doubt been the most stressful and difficult for my family and I and the team down there have really looked out for me so although it’s positive that I can start sharing appointments with my own hospital, it is certainly tinged with a great deal of sadness. 
It’s good to hear from Jason and Hopefulmummy and know you’re both ok. I don’t know when you last logged on but I did have a spell last year following the Allo that I was extremely ill after my EBV came back and I ended up with glandular fever. The resulting few weeks were quite scary as I developed swelling on the pituitary gland at the back if my brain and on the back of the brain itself. I’ve lost memory from a few weeks during that period in September/October  and my family and even my consultants were fearing the worse but thankfully I pulled through. 
It’s good the hear that everyone is ok and looking after themselves although I don’t think you’ve picked a great time to think about going back to work Hopefulmummy. 
I have been back since before Christmas but got put on furlough last week so the house and garden are getting a much needed makeover after been neglected last year. 
The weather down here is gorgeous so we’ve just been out for our daily walk/jog with dog and I’m now getting the BBQ prepped for tonight. 
Are you making use of the camper van Moomy? It’s you shame you can’t travel around in it at the moment as the weather is perfect, cold beer, bbq and a lovely sunset what more could you wish for? 
Enjoy the weather guys. 
Regards

Mark

Hi Mark, 

It hits hard when those strings tying you to a specific hospital start to ease out, for daughter it got easier or maybe necessary, as she moved house. But you will be looked after well wherever you are, I'm sure, daughter found her new GP was fascinated to have a post-allo patient to look after!

We keep popping new bits into the van, and go and sit in it on the drive, I think its handy having time to think things through, to be honest. We used to caravan but it got too much for hubs, this is a step towards feeling freer again. I think the most we need to consider is stuff rattling! We did experience that before total lockdown when we drove out to fill up the tank! Certainly looking forward to making use of it! 

Hugs xxx

Wow, where did those couple of weeks go?!

So busy trying to keep my 3 entertained I forgot to reply!

Yes, those weeks are the weeks I was thinking of Mark. So so glad things worked out and that you are on the up now. Do you have any lasting effects? How are you managing appointments at the moment? I hope you are still managing to keep busy at home. I'm struggling a bit this week, feeling a little trapped and wondering if i should danger going out for a walk with the kids. We are semi rural so could easily avoid people (the extra walkers have seemed to calm down this last week. Novelty worn off perhaps!) . Are you shielding too?

Moomy - so jealous of the camper. You could sleep out in it and pretend you are on your holidays. Though maybe not tonight as I think we are due rain... Or would that make it more of an authentic UK break?! Ha

Stay safe everyone. Thinking of you all

Hi, HopefulMummy, I slept in it the very first night we got it home! It was lovely, a sort of cocoon, and all the blinds made it really dark. I had the heating just ticking over and was toasty warm! And yes, rain and wind make it feel even cosier, somehow, maybe because you're closer to the elements? 

We are self isolating too so getting foods etc delivered thanks to Sainsburys and our local cake icing specialist shop who saw a gap in the market and bought in supplies of strong flour and yeast, bless her! She's helped me lots only a couple of months back (I made the celebratory cake for the 80th anniversary of the first ever Bombe machine, in the form of a Bombe drum - google Turing Welchman Bombe to know more!) so remembered me and drops my orders off to the door if I need anything. I've a bread machine (used one for many years) and flour and yeast were impossible to get! And pharmacy deliver our repeats....

Stay safe, all....

Hugs xxx