Stage 4 Hodgkins Lymphoma

Hi again Yolanda64 ….. when you get a cancer diagnosis the brain goes into catastrophe mode but the more clear and accurate information you get from your medical professionals, cancer support specialists and indeed people who have the ‘been there done that’ T shirts…… the more the noise between your ears will start to call down….. it’s like a raging storm at the moment and until you take control of the areas you can control the noise will just increase. 

it’s great that your daughter lives in Cheltenham…… get yourself into the Maggie's Centre ASAP…… as these folks will help you piece everything together and help you realise that although this is a rubbish hand to be dealt….. and even although Lymphoma is the 5th most common type of cancer in the UK (after breast, lung, colon and prostate cancers) it is abd remains to be one of the most treatable cancer out there.

When I was first diagnosed back in 1999 our daughters were 14 and 18 at the time……. but we went on to see our daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters (8, 10, 11 and 12)

((hugs))

Exactly, I agree and I do catastrophize about it , I’m trying to stop myself from going on google because I’m finding worse possible scenarios and scared I have a rare form of lymphoma they can’t cure or treat , my dr has given me some meds to calm me so hopefully they will work x Thankyou for you kinds words and wisdom 

It natural to catastrophize the unknown….. but take a big breath….. and another.

There was no Google when I was first diagnosed so I had to trust the consultants….. and I think this was an advantage as all these years on I just don’t use Google for medical information.

When I started volunteering for Macmillan and also Lymphoma Action I keep hearing about people using or in my mind misusing Google……. I did a trial a number of years back and put ‘lump in my neck’ into Google and followed the top hits….. within 4 or 5 clicks I had 6 months to live…… the next thing that come up was an advert for a funeral directors in my area….

As for rare types of Lymohoma…… my first type was 8 in a million with my second type being 4 in a million…… and I am still here.

My first type is classed as incurable but it’s fast asleep….. my second type is seen as curable but my consultant will not say the word….. but it’s also fast asleep so I won’t be kissing a princess ;)…..

Your go to place for information should be the Lymphoma Action website as it is reliable and up to date.

Exactly , that’s what I’ve heard , trust the professionals, thank you again , I’m just overthinking x

Good morning Yolanda64 and all - Pete here (what again!).

I must emphasise forget Dr Google - if you delve long enough you will probably come across someone advocating delicately entering a stick of rhubarb in one of your orifices to cure you of everything from herpes to cancer. And they say "that knowledge is power" but how do you know that the knowledge you receive is robust? So as has been said already, use Lymphoma Action or the NHS or the medics you will soon learn to trust and depend upon.

As for feelings? My late wife said that I had a compartment for her - it is how I cope with pressures when working/home life. Diagnosis then the (extensive in my case) treatment regime, followed by cure?remission? (in my case). So I try to put HL in a compartment and try not to let it dominate my life - sometimes easier said than done. And I shared what was happening with the ones I love and who love me. We go on the journey together.

But I wouldn't criticise anybody who is anxious, worried, traumatised by the diagnosis. I have been. It is a bugger and I think what hasn't helped us with cancer, is we have been conditioned to equal cancer with death. You've got cancer mate then don't make any plans (holidays for example) for the future.

Perhaps 30 years ago the outlook was bleak (and some cancers, let's face it, are, even now a death sentence). HL is not. Me typing this proves otherwise. so much research, use of new regimes and drugs e.g. immunotherapy usage, has meant that the majority of people with HL live a long and positive life.

So hug everyone - hugs are good for you. In fact have another one from me,

Pete

Hi Pete , thank you for your kind words , you have all really put me at ease on here , I was only told on Friday I have a Hodgkin’s type lymphoma , it’s just a waiting game now , I’m waiting for a scan etc, it’s the waiting that’s the worst, then I find myself worrying about the chemo etc, my son gets married in May and I want to be there for him , my head is just spinning , worrying about everything, the treatment not working etc x

 Yolanda64 sorry to keep repeating this…… but talking will help you a lot so do call the Lymphoma Action support line or go to Maggie’s with your daughter ((hugs))

Ah "waiting"!!! This is one area which isn't discussed (in my experience) but is an area which probably can cause anxiety throughout the rest of one's life. and there are different types of waiting. And in no particular order from my experience:-

Waiting to get the results of tests then initial diagnosis. Maximum anxiety?

Waiting for test results - for example you have a PET scan, during the treatment regime to see how you are progressing. This might be because you are scheduled say every 6 months and tests are carried out 2 weeks before the meeting/telephone consultation with your consultant. And the days before the consultation drag and loom during the waiting time. Will the results be good/bad or inconclusive? So the treatment continues, modified or not.

You treatment regime has "waiting" built-in.  If treatment is every 2 or 3 weeks and you don't react well to the actual treatment then waiting for "treatment day" is looming . . .

Even after you (I suppose I should be writing "one" instead of "you" but sod it) are given the all clear you might be on a 6 monthly monitoring regime which might include a scan (see above). I was told if a lump comes up or rapid wait loss then contact the hospital asap. Relaxing? Not totally. And all this waiting could cause PBS. Never heard of it? Pimple on the Bum Syndrome. I suffer from this. In other words I'm waiting for a pimple to erupt somwhere on my body thinking does that mean HL is coming back?

I hated and hate the waiting for reviews. But I can't do anything about the latter. I could refuse to cooperate with the reviews - but really? However I have learnt to live with it by not letting it dominate my life 24/7 - how I did this I can't explain except to say that I kept/keep myself busy physically and mentally. And enjoying my family (my g-kids and g-g-kids think I'm brilliant).

We all want answers/treatment yesterday - it doesn't happen like this; but we know it but it doesn't neccessarily help. So if anyone knows how to cope 100% with the "waiting", please let me know. I can bottle it and make a fortune (and me a socialist!!). I wish the professionals had told me about "waiting".

Hugs and more hugs, Pete

Hello, just read your comments and wanted to pat you on the back and also thank you.  I too have Stage 4 Hodgkins and have started every two weeks for six months (ending hopefully end of April).  I think I'm doing ok; very shaky and sorry for myself, I was diagnosed when my husband died, so a lot to take on board in one go.  I also was told that if I didn't have chemo and I really didn't, then I would have maybe eight months.  Yes, scary stuff but also these drugs, though very toxic are very clever too in their ability to target the right areas etc.  So, fingers crossed, I too will come through it well.  Did you by the way experience any hip pain?  Could be that I'm not keeping fit, I've just got stiff.  May I ask how old you are?  I am 73 yrs old.    Anyway, good luck and hope you live long and prosper. 

Hi thank you for reaching out. Thank you for your pat on the back. I’m so sorry you’re going through it and so soon after losing your husband. I am 57. I was 54 when I was diagnosed. No I didn’t experience hip pain. Keep hydrated with the chemo, drinking water really helps with the side affects.