Hi all and thanks for the nudge straw,
I head back to the hospital on Sunday to start the 3rd round of treatment which will be a repeat of the first I had some 8 weeks ago.
The 3 weeks off after the last round of R-IVAC was very much needed as it pretty much floored me and have only really recovered in the past week. Essentially it blasts your immune system and knocks your bloods to zero. Generally with this regime patients are kept in as the likely hood of infection is very high however we managed to defy the consultants and doctors. I was fortunate enough not to get any infection even though I visited the day clinic numerous times to receive both blood and platelet transfusions.
Infact I was back in to Aberdeen Royal Infirmary just yesterday to get a midway scan then was due to restart my treatment today however due to some confusion on the medication I was on I've been let out again until Sunday.
I had a quick chat with the registrar today and she let slip that they are all extremely pleased with my scan results and term 'dramatic improvement' was used several times. I get the impression they are going to wait for my consultant to officially relay the message on Monday but we get the gist.
So I am now half way through this and so far everything is working as expected so will stick to the plan and repeat the process and hope for yet another positive scan result.
I must say the staff at ARI have been fabulous and I see the haematology ward lacks nothing in terms of equipment, drugs and the staff are first class.
Finally as usual a shout out to the soontobe Mrs King who as usual never ceases to amaze me with her caring and compassion whilst putting up with me when I'm grumpy and low.
Cheers.
John
🙂
EDIT: smilie looks a bit moronic but the gist is I'm pleased for your good news.
Stay strong - even Livestrong
🙂
Excellent news - we have had a terrible day here, so really glad to hear such epic good news 🙂
Good news, hope the next round goes equally well.
I DEMAND a visit from WADA !I see the haematology ward lacks nothing in terms of equipment, drugs ...
Great news juan, f##k cancer!
Really happy to hear that you are doing well. Your missus definitely sounds like a keeper 😉
Take it easy and my thoughts are with you for the second half.
term 'dramatic improvement' was used several times
Good to read. Hope it continues for you.
Don't know how I missed this the first time round, but just had a catch-up read.
A terrible, scary thing to go through but it sounds like the experts have it under control.
Best wishes to you and your family for continued successful treatment.
Good luck J!
Brilliant news pal. God bless you and yours.
Thinking of you, man. How you doing...?
Morning all,
Currently at home on a rest break before starting the fourth and final round of treatment. Everything appears to be working well and my consultant is happy with the progress so far so good!. The midway scan was very positive and showed a dramatic improvement so again all good.
I'll probably start the fourth round next week so enjoying having a week of feeling well and strong. The best way I can describe this its like a game of 'whack a mole' by that I mean you get the treatment, feel crappy and weak for a couple of weeks. Then your bloods stabilise and improve then normalise then 'whack' your hit again.
I think the end of treatment scan is going to be tough due to the anxiety associated with the results but suppose thats normal. The other factor is to decide on whether to do a PET scan or not. This would provide a more definitive picture but there was little point doing one mid way as only a CT scan was done for the initial diagnosis. The down side is there could be a myriad of other things that could cause the PET scan to 'light up like a Christmas tree' which is not related to the lymphoma.
Anyway enough of all that. The family are all keeping well and the soontobe wife and daughter are coping remarkably well and are a constant source of support and joy. It sounds corny but times like these really do help refocus whats important to you and those around you.
Make the most of remainder of the bank holiday weekend and have some fun.
Cheers all.
John
Very, very best wishes for the final round JK
Thinking of you and yours mate!
Yes, best wishes for your next round. Take care buddy!
J
Best wishes & positive vibes for the next course.
Good luck!
F cancer!
John,
Like a number of folks, I also think about your progress and hope and wish it works out positively. So far so good - which is great 🙂
A few years back I was waiting for the results of a number of tests one of which would indicate whether I had Multiple Myeloma. To be honest the anxiety of waiting screwed my head up totally. The results were negative, but it took some time for the medical induced anxiety to go (actually, I don't know if it has....waiting on some blood test results at the moment...). However, your posts in themselves have helped me be in a much better place than I would have been, so thanks!
Take care and I sincerely hope that apart from the slight downs during treatment, it will be a big up at the end of the treatment. Best wishes.
Good news thanks for sharing, love it all and especially this
The family are all keeping well and the soontobe wife and daughter are coping remarkably well and are a constant source of support and joy. It sounds corny but times like these really do help refocus whats important to you and those around you.
Hi John, hope everything is going well. Let us know how you are pal. God bless you and yours. Paul.
Thanks for the nudge Paul.
So I completed my fourth and final round of treatment last Monday. There was a slight delay in starting as I have been getting infections of some description due to my immunity system essentially turned off. As mentioned I completed the fourth round last Monday and was out on Tuesday but was re-admitted this Tuesday with high temperatures and am still in ARI. They have never been able to pinpoint a cause of the infections however the PICC line I have fitted is being taken out tomorrow as a possible/likely cause.
On the up side it now appears as if my bloods are now stabilising and my body is able to start creating white blood cells once again due to the bone marrow stimulation injections I've been on for a fortnight. That will greatly help me fight off any bugs whilst rebuilding my strength.
This fourth round was bloody tough going afterward mainly due to exhaustion however I'm coming out the other side now and am starting to feel better daily. I hope with a combination of the PICC line removal and neutrophils/white blood cells improvement these seemingly random temperature 'episodes' are a thing of the past.
I have a final/end of cycle scan next Tuesday and review with my consultant the following week. So long as the results are as we expect it then a case of debating the merits of a PET scan.
It's only 6 short weeks to our wedding which will be a relatively small intimate affair so looking forward to that then in true STW style off camping for our 'honeymoon' but with my sister brother in law and 3 nephews!
As always finally a big thanks goes out to Kirstin for helping me through this over the past 4 months, visiting me in hospital daily and bringing me in lunch and fruit so I'm not stuck on hospital food. She really has been my rock and nobody else knows what we've been through except the two of us.
That's all for now folks and remember to give those you love a kiss tonight.
John.
Awesome. Fingers crossed and congratulations.
Wow. Yeah, as above....fingers crossed for you.
May you have an amazing wedding and honeymoon!
All the best to you and your family....
John glad to hear your looking up.
Really hope you guys have a wonderful wedding and honeymoon.
It's gonna rock. Sounds like she's there 100% for you.
Show this shit who's the boss !
Thanks for the update John and fingers crossed for the results. I hope you have a lovely wedding and honeymoon. Take care
Yes fingers crossed and have a brilliant wedding
Fingers all crossed for you here. Enjoy your wedding!
With you every step of the way John, keep looking forward, there's a brighter dawn just around the corner.
Cracking news 😀
Great news and enjoy the big day!
Have fun getting married and good luck with the other thing.
Nice one, John. Stay positive.
Evening all.
It's about time I updated this so here it is!
I was just scrolling up to see when I last updated this and remember the moment well which now feels like a lifetime ago...
Once the PICC line was removed and my neutrophils normalised the temperature spikes have stopped so not entirely sure which was the cause/solution either way it means I've now been hospital free for a fortnight!
The end of treatment scan was done and we met with the consultant to discuss the results. The summary was very positive with the current status of my 'condition' was I am in 'complete remission'. This is obviously the best outcome we could have dreamt of so to say it's a huge relief would be an understatement. We have check up appointments every 8 weeks for the next two years as the relapse rate is highest early on. He did also mention that typically those who have such a dramatic response to the treatment early on are typically those who do not relapse at all so fingers crossed.
My strength and stamina is improving on a daily basis with a combination of food and gentle excercise. This is being hampered a little with the neuropathy (numbness/prickly sensation) I have in my feet but this is slowly improving. My stomach is still a little tender so am conscious of that and am a little neurotic of any innocuous aches or pains but suppose that's normal.
The next big hurdle to overcome is our wedding in 3 weeks so Kirstin is busy sorting all of that so looking forward to seeing lots of family and friends. This is going to be more of a party/celebration so am hoping for lots of laughter, drinking, chatting and generally have a nice time with those who are closest to us. We are not doing gifts so have setup a donate page to 'friends of anchor' who do amazing work and am thankful for the care I have received over the last 4 months.
Cerys finishes nursery on Thursday so am looking forward to having a few weeks of fun and normal things that we usually take for granted but should not. We are off camping early next week as a trial before our longer trip in 3 weeks for our 'honeymoon'. Just today we were walking on the beach front here is balmy Aberdeen and both Kirstin and I agreed that today just felt like a normal day and we were on holiday rather than at the (positive) end of an emotional four month rollercoaster.
That in itself is a huge step in the right direction compared to where we've been...
I have found this thread very cathartic so thanks to the 'powers that be' and may even upgrade to a P.
The final big discussion in our house is what do I do about my lack of eyebrows as it does look strange in photos, do I go for fake, pencil or HD brows? The lack of hair isn't such an issue as I've been a grade zero for the last 10 years or so!
Thanks all
John
Ps. The fellow Aberdonians I will honour the BBQ promise and will message you after the wedding.
Cracking news.
As for the eyebrows make yourself a stick on set.
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Glad to hear this 🙂
John, your post has made my day and also made me look at my family and truly enjoy taking the faithful hound for her last walk before bed whilst sniffing the air and enjoying the sky, breeze in the leaves, etc, etc.
Pollen must be bad today too
😉
Great news. Truly.
Go HD 8)
Super news, best wishes for the big day.
Great news. The wedding and honeymoon will be amazing 😀
Woohoo!
Great news, good luck for the wedding and future 😀
John, this brought back some memories I can tell you. What an inspiration, I'm so happy for you and yours. Have an amazing wedding.
This is good news, says Badnewz.
