Follicular lymphoma

Follicular lymphoma is a type of non-Hodgkin lymphoma (NHL). If you're suffering from follicular lymphoma, or know someone who is, join this support group.

Follicular lymphoma

Thehighlander
Posted by

Good morning , post Stem Cell Transplant - Shingles can be very very nasty and could unravel all the years of hard work.

I am sitting in sunny Inverness reflecting back to this time 2014 when I was about to go in for my final cycle of R-EPOCH.......if only 5 hrs could have been my record....... my R infusion was a minimum of 96hrs every cycle and I had 6 cycles......  

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

Cecren
Posted by

Yikes!  What a time committment.  96 hours?  Imagine somebody trying to run their own business, or a single parent trying organise child care, or even get time off from work!  It's a bombshell to be diagnosed with something like this for a startoff, let alone have to fit a programme like that into a busy life.  Not to mention the joys of travelling for treatment from a rural area like Invernesshire....

I've huge respect for what you've come through to get your life back, Highlander, but the sheer logistics of this is tremendous.  How ever could you manage it?

I'm found myself retired at 57 because nobody wanted to employ a nurse with a limp, even with a stack of qualifications & degrees.  It means my time is my own to lose.  I won't whinge about time consuming treatments with that firmly in perspective! 

C

Thehighlander
Posted by

Hi . I always say you have to do what you have to do.

You may we’ll have looked at my profile and yes it was at times a logistical nightmare especially when we had to go up and down to Glasgow but it is what it is - just one persons route to survival.

My cycles were actually 120 hrs minimum, 5 days/nights in hospital as I was also getting various chemo drugs over this time so was connected to my two pumps (Laurel and Hardy) 24/7. I did actually walk a good few mile every day round the small Heamatology/Oncology ward corridors and this helped over come a good part of the fatigue.

I was self employed by this time after retiring from teaching at 55 but there was no chance of working for all the 3+ years if you include my two Stem Cell Transplants. I am 63 now so have given up the thought of trying to pick this back up.

So this is why I have the time to help out on the Community. Some blood cancer treatment for AML  for example can be very long, very hard and require months in hospital then they may well have to go onto Stem Cell Transplant.

In all this I always say that it is what you make it. Struggling every day with the “why me whirlwind?” or knuckling down and getting on with it - keeping the greater good at the forefront of each day. 

You are doing great and in a few months you will be seeing the light more clearly.

Rural Scotland? Where are you and where are you getting treated?

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

Peter1954
Posted by

Hello Cecren,

I've had hydrocortisone before, it didn't agree with me as I kept falling over and feeling like I was permanently drunk, but as you say we are all different.

Peter

In the end, it's not the years in your life that count. It's the life in your years.  Abraham Lincoln

Cecren
Posted by

Hi Peter1954

I'd been attributing similar behaviour to the Piriton, but you cast interesting doubt on that interpretation.  I wonder if I'm wrong?  I get the two together.  Back to the drug reference books.... but they can only be general, not particular to each of us.  It's obviously something we both find hard to enjoy!

C

Peter1954
Posted by

Hello Cecren,

I've not had Piriton, but 6 years ago was given Domperidone, which is a anti nausea/vomiting drug thats supposed to help your stomach, I got swollen toes that split with horrible consequences.

I'm also allergic to codeine, gives me dreadful headaches, I'm told that could be as its an opiate.

Certainly makes life interesting when it comes to taking drugs you've never had before.

Peter

In the end, it's not the years in your life that count. It's the life in your years.  Abraham Lincoln

Cecren
Posted by

Lawdy, Peter, what gruesome side effects! Your poor toes!    I'm not going to complain about my zombie days anymore. 

So far, the drugs actually seem to suit me and I think they're working.  Still not fit for proper walks yet, but I spent a day planting and weeding and watering.  Blissful weather!

C

Cecren
Posted by

I live 100 yards from the Highland line fault, in northern Perthshire.  I'm not Scottish, but I married an Aberdonian.  Wasn't sure about coming to live so far from the Valleys, but it's so friendly round here, it's made me feel quite at home.  Just a different accent and no slag heaps.  And much less rain!

I miss music in Wales, especially opera.  It's simply not part of Scottish popular culture & in England much of the audience seem to be corporate wallahs with fat wallets and tin ears.  In Wales, it's a jolly night out and you already know the music.  It's emotional.

Never really thought 'Why me?'.  I guess 45+ years in nursing means I saw a lot of nice people who didn't deserve the crummy deal they got.  So I think it was more like 'Sh*t happened to all these other people, so why not me this time?'   And I was glad it wasn't anything worse, because I've seen how bad that can get.  Sounds like you have been there too.

I get my treatments in Tayside Health.  They've overspent their budgets for years and they get a lot of political criticism for it, but the hospitals are cleaner, better staffed, better equipped  and better run than many in England.  It feels safe and they look after me. 

C

Thehighlander
Posted by

Good morning , great to know a little more about you. I was actually born North of Aberdeen on the Buchan coast. 

I am pleased that you feel safe and are being well looked after in Tayside Health, even although they have been having a hard time in the press lately.

Wales and music especially Opera is great. Music runs in our family with many generations playing the pipes - not me though I went doe the route of other instruments.

So pleases that you have a mindset that will get you through this as it is all about fighting the battles we can control and keeping the end in mind.

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

Peter1954
Posted by

I wish I'd taken pictures when they were just swollen, they looked like 1 big sausage and 4 chipolatas. I think these drugs I'm taking for the boost to my imune system are doing something as yesterday evening I had to go to A&E with a thorn tear on my arm and it was bleeding quite badly, Saw a doctor in about 10 minutes, he took one look asked what medication i was on and gave me enough tablets to get over this weekend of antibiotics. So having these problems does have its upsides lol.

Note to self, don't presume that I'm impervious to the gardens plants.

I'm now pushing to get to my 5 miles a day, so desperately need to build up some stamina.

Peter

In the end, it's not the years in your life that count. It's the life in your years.  Abraham Lincoln

Peter1954
Posted by

I'vce only ever been to Scotland twice, 1st time was a plane ride to Aberdeen for a ride on a rig support ship to Stavanger, that was in 1988, then my wife and I went to Edinburgh for a long weekend in 2016 (Easter).

We are planning a 2 week holiday to see the west of Scotland, but not sure if it'll be this year.

I'm not into opera as I am tone deaf and its a challenge to know where peoples accents are from.

Have a lovely Easter anyway, we have a houseful of family in a couple of hours, so it'll be a day of laughs and the sunshine is so welcome. 

Peter

In the end, it's not the years in your life that count. It's the life in your years.  Abraham Lincoln

Cecren
Posted by

Have a wonderful Easter!  For once, the weather is great and I hear vitamin D is good in lymphomas.  As long as we avoid the sunburn...

Thehighlander
Posted by

Good morning Peter, I actually did keep a photographic record of my brick growth in my neck both growing and reducing - it is remarkable to flick through the slides quickly to see the progression.

2 weeks on the West Coast - an amazing place.

It is good that you were able to get through the A&E system quickly and get some meds. Having had to do this so many times we have developed a system that reduces the time in the waiting room and get taken straight in to be seen, even bypassing A&E and straight to the ward.

Sun is out up North, all the 4 granddaughters are with us (NOISE) so off into the forest this afternoon to let them let off some steam.

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

BedrockFred
Posted by

Beautiful up the NW of Scotland one of my favourite places in all the world fantastic place to sit and reflect what you've been through, some nice long walks 

We are going Snowdonia in August all being well a big family holiday with all the kids and grand kids 11 bedroom cottage really looking forward to it, all our family enjoy the walks and the scenery

Enjoy your family Peter magic times that sometimes is taken for granted, no more will I 

Together we are stronger
Thehighlander
Posted by

Peter, you started this thread in August last year, and it’s amazing the twists and turns it has taken in the 8 months, including a few rabbit trails but it’s a great example of living a cancer journey together.

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela