Overwhelmed

Hi,

Thanks for making contact.

It sounds like your type is at least isolated and hopefully you’ll make a full recovery.

I will be having my lumbar puncture next Friday so will endeavour to ask all questions if I can as part of that process and I will write them down. 

I think I need to ride the wave a bit longer until those results come in.  Then get the support as needed.

Everyone sounds like they start to ‘cope’ so I’m holding on to that.

x

I too was diagnosed with high grade DCBCL but back in April last year... unfortunately mine had manifested itself through a series of gall bladder attacks, so the surgeon decided, without discussion with a haematologist, that I probably had bowel cancer & proceeded to remove three feet of my bowel... subsequent analysis of lymph nodes gave the correct diagnosis... I was just 60 when things kicked off... fast forward 14 months... chemo was terrible (No. 4 saw me really I’ll with neutropenic sepsis but luckily the lovely nurses & doctors in the ACU turned it around [they did similarly after Chemo No. 3 - cytopenia & No. 6 - neutropenic sepsis again but not so acute]... in the October the PET scan declared me all clear...

im struggling now with a couple of other issues - lymphodema from the chemo but my lovely, lovely Haemotologist is trying to get me to a vascular surgeon & a hernia from the bowel surgery... I’ve also just developed haematuria & am pushing to get that investigated (I’m scared - no denying it - but I got through R-CHOP and I’ll fight anything else that comes my way!)... my oldest sister lost her fight with pancreatic cancer last September, 8 months after I’d last been able to see her... so, I promise, whilst DLBCL is hard, it’s very beatable... focus on the hedge & anything else you can (& I didn’t watch the tv for 9 months!)

love

sarah xx

Good luck tomorrow with your lumbar puncture. I hope you are able to see your consultant or at least a Haemotology nurse (mine are excellent) and get some answers to your questions. 

Mine seems to be reasonably contained but it has made its way south of my diaphragm, hence the stage 3 diagnosis. I have an ongoing fear that it will manifest elsewhere. 

I have had a really useful conversation to assess my holistic needs with the local Macmillan support centre, and she signposted me to many other forms of support and how to access them. I really do urge you to find someone to talk to about your concerns and fears - whether that’s your consultant, Haemotology nurse team and/or a counsellor. In my experience it’s very easy for the fears and worries to expand exponentially in your head, but speaking with someone really helps reframe the issues and find perspective. 

wishing you well. 

Hi,

Thank you for remembering! 

I got a letter on Wednesday this week telling me to expect the phone call last week!! So I will ask them to telephone with the dates in future as clearly the post is not getting out in time!

I obviously want more info today if I can get it but I am in a better headspace this week.

There is still a long way to go I know but I think that maybe a month of no sleep because of the pain and a cocktail of painkillers that were prescribed which were stopped and then straight into chemo was maybe also just my brain adjusting to all the chemical changes.

I have done exercise every day, I drink a lot of water and have so far maintained a really healthy diet. 

I might be sobbing again later but at least, if so, hopefully it will because of known facts and I’m genuinely just feeling sorry for myself and not me just blowing unknown stuff out of proportion.

Thanks for your support.

x

Good luck today. 

Yes - sleep and drugs play a MASSIVE part in influencing your mood? Have you had any steroids? You can end up with a quite pronounced depressive slump once you come off them. I’ve taken to writing down daily sleep/mood/drugs/side effects/treatments so that I can trace things back. The doctors really appreciate it when you can pin these things down too. 

One more thing - your emotions are all completely justified given the circumstances. They don’t have to be in some way proportional to the medical reality of your diagnosis, or its severity. You are allowed to feel the way you feel. Uncertainty is perhaps the hardest thing to deal with. So do make sure you find support when you are feeling low - you don’t have to wait until you have a ‘reason’ if you see what I mean. The emotional whirlwind is part and parcel of a cancer diagnosis and the oncology staff, more than any other medical staff I’ve encountered, are fully trained to help you with the emotional/psychological side and to signpost you to more specialist support as you need. If you at all like me you might be finding it very hard to adjust to a new state of vulnerability and loss of independence. I’m very bad at asking for help but learning that it makes me feel much much better once I have. 

Hi Sarah , your not the first person to come through the Community saying that a surgeon jumped in without all the jigsaw peaches being in in place and removed a growth area. Your journey has been full os twists and turns but hearing "all clear' does help give the journey some positive spin. But yes, there are the treatment 'left overs' to deal with but good you have some medics pushing to get answers for you and to move this forward.

You have fought through this far and you will continue to do the same if required I am sure.

Every now and then I remind group members to put some information into their 'profile' as this helps you unpack your journey and also helps others who come along looking for information...... you obviously can look at other profiles by hitting members names. A link to how to put up a profile is at the bottom of my posts.

((hugs))

Spring2021 good to hear some progress is being made. Most folks will eventually agree that the initial diagnosis and planning before treatment starts can be the most challenging part of the journey.

Pity me parties are allowed....... but keeping a lid on an over active brain is important..... it's so good at making 2+2 = 157.

I think that   highlighted keeping a daily journal, this actually help far more than you would imagine..... my ones go back over 21 years.

It was especially helpful at silly o'clock when the brain was in overdrive with so many thoughts and question..... I would pick up the journal, write everything down and park it until morning. Next morning I found I would put lines through some of the toughts as i realised that they made no sence but other were put on to the back pages as questions to ask at my next appoinments.

You are doing great, hang in there ((hugs))

Hi,

Thank you for your support.

I had a good chat with a really lovely Registrar today, saw my scans and reports etc.  They did a lumbar puncture and also inserted chemo at the same time either as part of treatment or as insurance.  Results due next week. I will have another set of scans after Chemo 4. 

Really hoping I can stay as well as possible so that each treatment doesn’t get delayed.

I had my gallbladder out 19 years ago.  No one has mentioned if it might be connected but I am guessing not as it’s not the slow growing kind and I’d probably have known before now. But who knows. My mum has rheumatoid arthritis so maybe that’s a link! 

My dad died of pancreatic cancer 4 years ago. It was the reason I pushed for the original ultra sound because I didn’t believe my back pain was purely mechanical. 

I hope your ongoing issues are resolved swiftly.

x

Hi,  

I saw a really nice Registrar today who took me through everything.  As well as the lumbar puncture they also inserted chemo either as part of treatment or as insurance. The actual results won’t be in until next week. 

He continued to talk of curing it.  Obviously they can’t promise anything but whilst the visit took much longer than expected I feel it was a positive experience.

I have also had a missed call from the Macmillan team to discuss holistic support. So will call her back next week. 

Things appear to be back on track, for the time being at least. 

Thank you. Today went well.  The Registrar took me through the scans and reports and whilst quite a few places are affected he still spoke of curing it. So still a long way to go but things seem more back on track.

They did the lumbar puncture and also put chemo in either as treatment or as insurance. The results will be known next week.

More scans after chemo 4. 

So we’ll see, but hopefully I can remain positive until told otherwise, as life is definitely too short to worry about stuff which might never come to pass.

x