Monthly Archives: September 2010

News

Apologies for taking so long to write this post, and most of  you will already know from Facebook and/or Twitter, that as of yesterday, September 28th 2010, I was given the all clear. Yes. I AM IN REMISSION!

Don’t you just hate it when you get called into a room to get your results and the doctor says to you “How are you?” My reply yesterday was “I’m not sure yet, ask me again when you’ve given me my results.”

It turned out that the mass and activity in my chest has all gone. Nothing there any more. My thyroid is still acting up, but we have a date for surgery to sort that, but there was some new activity going on in my nose/throat/neck area. However, we have put this down to my throat infection and cold that I had at the time of the scan.

I can go on holiday (armed with some precautionary antibiotics just in case!) safe in the knowledge that I kicked cancer!

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Guest Post #3 – The Hubby

Roz has been asking me to write this post for quite a long time, but I’ve refrained because I’ve never really known what to say. 

I think back to when it all really started.  Roz was having pain in her shoulder when she had even the slightest amount of alcohol.  Despite my protestations, she’s a bugger for researching things for herself on t’internet.  When she inevitably did and found lots of references to Hodgkin’s Lymphoma I took it seriously, but at the same time didn’t really believe it.  I just told her to go and see the doctors, deciding our lack of medical training meant we weren’t really qualified to make a sound diagnosis.  “If you’re worried, see the experts about it.” I said, and left it at that.

That was my first mistake.

Some time later (Roz will remember the exact time that passed; I never can) she did visit the doctor.  This particular GP hadn’t heard of the alcohol-related pain as a symptom of Hodgkin’s before, and promised to look into it for us.

We never heard from her about it again.

Some more time passed, Roz was still concerned so went back to the doctors and saw a different GP.  He sent Roz for some blood tests, but when they came back normal (apart from a slightly high white count that could’ve been attributed to Roz’s recent pregnancy) he simply suggested that nothing was wrong, and that Roz should just avoid alcohol.  “It’s probably nothing, maybe you’ve got an achy shoulder because now you’re carrying the baby around and alchohol relaxes it.”

So we took his word for it.  That was the second mistake.

Some more time passed, and Roz tried alcohol again – finding that the pain was still there.  Once more concerned, we returned to the doctors and saw a third GP.  This one had heard of the alcohol-related pain as a symptom of Hodgkin’s, and ordered Roz to the hospital for x-rays.

Then various things happened that actually led to Roz’s diagnosis.  You probably know from reading this very blog.  I did get very upset when we were told, but managed to hold it together pretty well I think.  My frame of mind then and since has been “Right, so what do we do to fix it, then?”.

My way of coping has been twofold: don’t think about it, and think positive when you have to.  I quickly assimilated Roz’s illness as “normal”.  I changed the actual definition of what “normal” meant.  This meant that I didn’t sit depressed and distracted, mulling over it in my head and unable to concentrate on other things like my work.  I’ve tried quite deliberately to anchor us and not let it take over any more than it had to.  I may have changed more nappies (I work from home), but on her good days Roz still did washing and cooked and looked after Jake.  She’s been a star for that, she really has.  On her treatment days and bad days friends and family went above and beyond so that I could carry on at work.

All in all, I don’t think I’ve perhaps, on the face of it, done that much out of the ordinary.  I’ve considered Roz’s illness something that’s an inconvenience for us, which should be fixed and put behind us as soon as possible.  I’ve not cried about it, because while it’s upsetting to think how things could have worked out, I decided that was definitely not going to happen, so why get upset?

Roz has occasionally thought me not sympathetic enough.  It’s true that I’ve not pandered to her too much – whimpers of “I’m not well” have been met with a simple “Ask your doctor about it”, although these days we don’t take “it’s probably nothing” for an answer.  I don’t wrap her up in cotton wool, because then her illness is having an even greater impact than it deserves, but then when early one morning when she told me her temperature was over 38, I rolled out of bed and we got Jake and ourselves together to go to the hospital.

It’s been a crappy year for Roz, so my reasoning boils down to this: the more normal life at home could be, the better.  This might sound harsh, over-rational and maybe a bit selfish, but everyone has their way of coping.  I like to think my “keep it real” attitude acts like a damper to Roz’s emotions, preventing her swinging too far one way or the other.  I hope that while it doesn’t always feel or look like it, I’ve helped.

I felt a great sense of relief when Roz completed her last trip for chemo.  It’s not been easy for her (though she has been very lucky with her reaction to the treatment) so the fact she doesn’t have to go for it again needs to become normal, just as “chemo Friday” had to become “normal” once upon a time.

Tomorrow Roz has her final PET scan, and results come back in a week, and we have a nice holiday abroad booked for after that.  I have all the usual extremities crossed for a great result from the scan.  We’re not out of the woods just yet, but I hope if we just keep going the way we’re have been, we’ll all be just fine.

 


Scanxiety

Tomorrow is my end of treatment scan, or at least we hope it’s end of treatment anyway! I won’t get my results until next week, but at least I have a busy weekend to help keep my mind off it. I never have been very good at waiting for results.

London was fab. I didn’t win the award, but as you know, I didn’t expect to, and I am in no way upset about it. To me, it was an honour to have been nominated and short-listed and it was fantastic to meet so many lovely people on the night. As I’ve said, my biggest fear is relapse. On Thursday I met a lovely lady who like me, had stage 4 Hodgkin’s. She is now 5 years out of treatment, with no relapse, and has gone on to have 2 children naturally. Now, I know this doesn’t mean that I won’t have a relapse, but it did make me feel better. It was a very emotional evening, and I’m not ashamed to say that I shed a few tears.

I then went on to stay for the rest of the weekend in London and had a girlie weekend with some friends. We had a brilliant time, but I think I may have overdone it a wee bit, as I am now on antibiotics for a throat infection. Getting a little bit bored of being poorly, if I’m honest. Just wish my immune system would hurry up and fix itself!

My next entry will probably be next week, when I let you all know the results of my scan. Watch this space…..


The Aftermath

Tomorrow marks 5 weeks since my last ever (hopefully!!!) chemo treatment. It’s gone so fast. But I am finding myself counting down the days until my next appointment.

During chemo, I was at the hospital at least once a week for blood tests, chemo, clinic appointments etc. Now it feels weird not to have been there for so long, and it’s only been 3 weeks since I was last seen.  It’s so strange. I should be ecstatic that I’m not at hospital every week any more. But I just feel a bit lost. At least when I was being seen every week for chemo and bloods, I had people to ask if I wasn’t sure of anything. Now, if I get a sore throat or a cough I’m not sure what to do. Do I call my GP? Do I call the haematology department? What I’ve actually done is kept quiet and hope it goes away!

The rules have changed now, and I’m not sure how to play it!

I’ve read about a lot of people that have gone through chemo and have coped absolutely fine, but when chemo has finished, they’re not sure what to do and can’t cope. Others are just glad it’s over. I’m not sure what category I fall into just yet, and I’m sure time will tell. I need closure on the whole thing, I know that much for sure, and I hope I get that when I get my scan results.

Then there’s the whole scan results thing. How do I know who I need to contact, and who can find out on the blog/twitter/facebook? I don’t want to offend anyone, but at the same time, I can’t contact everyone in my phone book, and neither do I want to.

In other news… Did you know that this week (13th – 19th September) is Lymphatic Cancer Awareness week? The lovely Lymphoma Association have launced their PITS campaign in order to make young people aware of lymphoma. Lymphoma is the 6th most common cancer, and within the under 30’s age group, it is the most common, yet we know so little about it. Next week, I’m going to Birmingham City University to help the Lymphoma Association with their campaign and talk to the students about it. I’m really looking forward to it, and hopefully, it will help keep my mind off my scan the day after!


Beacons of Hope

On Thursday 16th September, I am off to London for the evening to attend the Beacons of Hope Awards Ceremony, held by the Lymphoma Association.

I have been nominated and short-listed for one of these awards, in the category of Raising Lymphoma Awareness. Quite what I’ve done to deserve this, I don’t know. I know I’ve written this blog, but I’m not sure that qualifies me to be up for an award? I certainly don’t expect to win, but am honoured to be nominated.

My father-in-law has also been invited to the awards. He has been nominated (by me) and short-listed for the Outstanding Care and Support Award. I think he’s much more worthy of winning than I am, although, if you asked him, he would disagree. He doesn’t think he’s done anything out of the ordinary, but we think he has!