Wednesday, 10 February 2010

WEBSITES to check out...




Monday, 8 February 2010

Checking in...almost 6 weeks after the 3rd round

I thought I should just check in...

Most of the noticeable side effects have worn off now...or I should say are much less than they were so I think they've worn off. If I compared it to me at the start I think I probably still feel shit. Tiredness is definitely still an issue...being careful not to over do it, but WHATEVER...Im getting on with life now, too much lingering around my house over the past few weeks. Still, I did get to miss out the best part of a pretty bleak winter so "every cloud" and all that

I think a week or two after I got home from this last round the psychological and emotional effects started to seep in. I think that in a crisis all your focus and energy goes into getting you through that crisis and out the other side...I think you put all the other effects into a box somewhere to be dealt with later. Since the worst of the effects have worn off I find myself reflecting on it all and feeling quite sad...if thats the right word...emotional maybe, not sure...definitely reflective. My dreams were quite panic'd for a week or so but that seems to have died down. Anyway the last thing i need is some subconscious long lasting effects from burying my troubles...people have advised me that seeing a therapist would be a good idea (a shrink that is)...I think now I feel like it might be useful, its quite difficult to discuss such issues with people, you need a lot of time to ponder before getting anywhere and generally people lose concentration unless its their job, or they have a particular vested interest, plus having a regular time and place dedicated to your deep and meaningful waffle to come out kind of forces you to think about it. I havent done this yet anyway so its all just assumption so far.



Thanks so much to all those people who got in touch and showed me the love…it helps a lot. I know its hard to know whether to bring up these things with people when you hear their bad news…in my experience it did help. I said this in an email to a bunch of people it is again for EVERYONE around me, and for anyone else who ever gets in a similar situation, its funny, people do give a fuck! What a lovely realisation about the world to come out of all this. Thank you xxx

Yes the past few weeks have been pretty bleak, and the love Ive got from all sides has been a great help...Its one of those funny ones where you hear something really bleak happening to someone you love and its always difficult to know whether passing on your love and concern for them is the right thing to do..I know Ive always felt a little awkward about expressing such things, you never know whether the person will appreciate it or feel awkward about it being brought up, or rather not talk about it rah rah rah...from my experience it has been nice to hear from people, so I know in future to try to express myself in the same way! Some people would believe that being sent love like this from all around you will directly aid healing...I would say I am one of those people, so everyone around me is a little responsible for me being alive for years to come (remember that next time Im wasted at and ranting some obnoxious bollocks in your ear!)

One of the big positives of it all is hearing from everyone, and knowing that all those people you love from throughout your life are real and the relationships are real...lots of you choads I rarely see or speak to but you all, and many others besides, are all considered friends of mine and I hope you all know you can count on my love and support.

End of Week 14 / Beginning Week 15 – Round 3!

End of Week 14 / Beginning Week 15 – Round 3!

Hospital. Waiting around. Blood tests. Bla Bla Bla…


What!? Damn. OK. When?

As my blood count was so low, specifically the neutrophil count, they would give me an injection that would stimulate my bone marrow to release white cells into the blood. Interesting!

So that’s what they did. And I went out for dinner for NYE which was nice…glass of champagne, or was it two…but returned to the hospital in good time so I was still safely locked away out of harm’s reach…

A couple of people called me that night which cheered me up...thanks girls x

I was warned that this injection could make my bones ache. IT FUCKING DID. All my bones throbbed with each beat of my heart for about 48 hours! However, pain killers work very well on pain, so it wasn’t so bad…

So New Year’s Day Round 3 began. I was out of hospital 4 days later…and SO pleased to get out of there. This was really starting to wear thin! The old moral was starting to get hit..jesus, so glad it was only 3 rounds…hard rounds but only 3..

In fact, my doctor suggested that we were probably vastly over doing it with 3 lots of this treatment…that seeing as it was clear after one round…even round 2 was maybe unnecessary. HOWEVER, being as there is no statistical evidence comparing the effects of 1, 2 or 3 rounds and the percentage of recurrence in each case…DID I WANT TO BE THAT TEST CASE? NO NOT REALLY.

Given the option, I would have chosen the third round anyway I think. Anything to stop it coming back right?

Of course, when given that option, you don’t know how bad its going to affect you. Round 3 was definitely the worst by far. I didn’t get the same horrible intense sickness I got in the first round…they amended and added to my anti-sickness plan and it worked (although round 3 they switched me back from metrochlopromide to domperidone. No one could give me a sensible answer as to why seeing as last time it all worked so well. This was intensely irritating to me..but “let it go!”…as was the conflicting advice as to when it was best to take this or that…but whatever, “let it go!”)…as I said earlier I think…KEEP CONTROL OF YOUR OWN TREATMENT…from my experience, the doctors and nurses and such like are all dong their very best to give you the best treatment possible, HOWEVER, it cant be as important to them as it is to you who is being treated, and they have to look after a lot of people…so my advice is to make sure everything is as you think it should be…take an interest. Not to mention that when I apologised to one of my nurses as I kept grilling him about details “why this, why that” he told me that from his experience he thought people who do take that kind of interest in their own treatment tend to have better recovery rates. Who knows.

It’s now two and a half weeks since I got out from round 3. This has definitely been the worst lot…everything has lasted longer and been worse. In fact, although I stopped taking anti-sickness drugs after about a week and a half that feeling still hasn’t gone, the drugs just stopped making any difference. My hearing was more affected, although that has mostly gone now…Its just tiredness now that’s really affecting me…but that’s ok, I’m just not doing much and resting a lot...luckily my work has been extremely supportive throughout all of this, and I am in a situation whereby I can dedicate all my time and energy to getting better – had I been a freelancer, or a sole trader, or working for an unsupportive employer this would have all been much harder.

I have a blood test at the end of next week to check my blood count is rising back to normal levels – it should be by now really…

And then don’t have another CT scan until 6 months after the last one…and then a year after that. This is a great sign of their confidence in my return to perfect health Im told J