- So, I've just found out I too have cancer.
- Ramsey NeilMember
Great news , your prognosis seems to be improving week by week . I think the oncologist who suggested that any care you received would be palliative should be on the end of a serious bollocking , I an only imagine how awful that must have been for you and your loved ones .Posted 1 year agograntyboyMember
glad to hear your making progress in the right direction.
I’m also in Aberdeen and live near ARI so if you ever need anything just ping me, grot mags, bacon butty’s, rum etc etc. But I’m expecting you to smash this, then we can go ride the local trails and smash out some STRAVA! KOM’s
GrantPosted 1 year agotrail_ratMember
Well I’ll Look forward to the Aberdonians party when you have smashed this.
Can’t believe how this has changed over the course of three weeks.
No doubt it’s a long tough road ahead but you, your family/friends and your docs got this by the sounds of it. #teameffortPosted 1 year agomuppetWranglerMember
That’s a great read on wet and windy Wednesday morning. Really hoping that this carries on in a positive direction but if i can offer one piece of advice. Chemo can be a fickle beast. As you work through the sessions you might feel fine, fine, fine, absolutely bloody awful, then fine again. So although your not feeling too bad on this session that might not be the case for others. If you do have one or more where you feel awful don’t be disheartened it all part of the process and it will pass.Posted 1 year ago
Thanks for the messages and comments guys appreciated.
So there is currently some disagreement between various haematology consultants as to whether I have pure Burkitt’s or diffuse B Cell lymphoma or B cell lymphoma with some Burkitt’s traits… The main difference being Burkitt’s responds well to a higher grade of chemo whereas the diffuse B cell responds well to a less intensive plan. So far i am handling the more aggressive chemo well so my consultant is of the opinion let’s continue with the plan as Burkitt’s and review after a cycle has been completed.
I got the impression he was outlier whereas the other consultants would have been happier to treat me for the lesser b cell with the milder chemo but he simply wants whatever is going to give me the best chance of full recovery.
Good news that there is no trace of it in the bone marrow or spinal fluid so again hopeful signs for the road ahead but acknowledge it’s going to be a slug.
In myself i still feel ok and managing to get some work done from hospital which is a welcome distraction and have just been told i can go home for the weekend for a break!
As always SoontobeMrs King is epic and a rock and look forward to spending the weekend with my daughter.
Have a good one!
JohnPosted 11 months ago
Thanks for the responses they are much appreciated.
I’m happy to say I’m back home again for 2 to 3 weeks while the business end of the R-IVAC phase kicks in. So I am now at the midway point of the treatment cycle having completed R -Codox M and IVAC initial cycles. I understand the next couple of weeks could be tough as my bloods might reach zero so need to be careful but am happy to manage that from home rather than be stuck in hospital basically doing nothing.
I was literally let out on pass yesterday for the break so having a family dinner at home last night and having tea and toast in bed this morning was priceless. I’m pretty sure I even woke up smiling!
So far all has progressed well and and not feeling too many side effects of the treatment but appreciate this can change. My consultant and team are happy with my progress so take a great deal of confidence from that. They appreciate I don’t live too far from the hospital, have a young family, am still in good shape and won’t do anything daft so have given me greater freedom than most perhaps.
I think my family has been single handedly supporting the oil price with the amount and frequency of visitors travelling up from Wales which is greatly appreciated. It was also great to see a bunch of my oldest mates travel up to visit just so they could check on me with their own eyes. Personally I think it was a bit of an excuse to be away from their families and have a few beers either way it was grand.
Looking forward to spending the next couple of weeks tidying and planting the garden up, tidying the garage, a gentle pootle on the bikes and eating lots of lovely non hospital food.
I know and understand we are only half way through but I’m feeling strong and positive so take that as a win. The soontobe Mrs King is an inspiration and wonderful mum who is tackling all of this with amazing strength and determination any woman ought to aspire to.
Enjoy the remainder of your Easter Weekend all and give all those close to you a kiss or a thought.
JohnPosted 11 months agoalpinMember
This gives me so much confidence.
Mum was diagnosed with leukaemia last week and is undergoing her first bout of chemo. Fortunately she is responding well to treatment. If it wasn’t for the tubes hanging out her arm you wouldn’t know she was ill.
Good luck with this, fella.
Stay positive….Posted 11 months ago
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.
JohnPosted 10 months ago
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.
JohnPosted 9 months ago
You must be logged in to reply to this topic.