Day + 146Hey! You know what really grinds my gears? Tiredness... and not just any old tiredness. Man, I am cabbaged. I just cannot seem to get out of the cycle of fatigue that I am stuck in. I'm on a one day on one day off routine right now and it is annoying. I go back to work next Monday (on a phased return; 3 days a week) so I'm hoping that might knock me into shape. I've been working from home these last few days so my brain still works... which is a bonus.
You know what else grinds my gears? People telling me I look great. I can't tell if people are talking about the amount of weight I've lost or the fact that I look better after transplant. I suspect for the majority of people it is because I am thinner. and the shallowness of that actually hurts. Not one person has ever said "You look great but how do you feel?". I feel shite, by the way!
The final thing that grinds my gears?
Depression.
I haven't been this low since my collapse at the end of SCT. Talking to my onc nurse a couple of weeks ago lifted me out of it but I'm afraid I've let myself sink back in. I see her again tomorrow so maybe she can give me a lift again.
I now suffer from many side-effects as a result of all my treatment:-
1) Severe fatigue... as moaned about above.
2) I can't feel my toes unless it is cold and then they hurt like hell. This is called neuropathy.
3) Lost about 60lbs coz of SCT and radio
4) Still can't eat properly and need morphine every now and again for throat pain
5) My hair has turned black and I need to shave my back! I'm turning into a silver-back mountain gorilla.
6) Paranoia about twinges in my neck
7) Veins are hard as rock.
8) Chemo-brain
9) No tolerance for trivial matters.
10) Depression... the worst of the lot.
On much happier news all my bone marrow tests came back as good or excellent. I have no sign of pre-leukaemic cells, the stem cells have engrafted nicely, my bone marrow is functioning as it should be at this stage and there is ZERO sign of The Hodge. It couldn't be better really.
Veronica and I have book our wee trip away to Boston, MA next year. We arrive on the 26th June for 7 days and are really looking forward to meeting the people who have helped us during our difficult times. We'll obviously miss the kiddies but will enjoy our first taste of freedom since Erin was born as best we can. Getting travel insurance is proving difficult but I just need to find that specialist cancer one!!
Talking of the weans, they got a mention in the Lymphoma Association quarterly newsletter. You can check it out here. They actually raised over £2100 pounds when you include the amount my company raised but for some reason they ignored everything my work did! The newsletter is actually a pretty good read so please have a look.
So, apologies for the fairly down post. This is probably why I haven't updated for so long. I'm now just keeping my head down and focusing on the trip to the States. It is giving me something to really look forward too.
7 comments:
And WE are looking forward to having you and Veronica come to the see us in Boston!!! Don't be so hard on yourself Wullie - you have fought a hard battle...all soldiers have some scars left over to deal with. Don't let yourself stay down for too long. Hopefully going back to the grind of going into the office for work will help pick you up.
Lauren also gets upset when people as how she's feeling, and say she looks good. She'd rather they ask how life/school is. She feels if she hadn't been sick people wouldn't ask how she's feeling - she wants to put it all behind her. People mean well - at least they ask!
I so wish you weren't depressed, my friend. Depression is the icing on the gigantic cake of crap that you and your family have been through. You don't need icing, dang it!!
Bakery and poo euphemisms aside,
I hope something helps soon. I hate to hear of you still feeling sad. Maybe it has to run its course. You, V-Darling, and the little ones have been going through this for a long time, now. There has to be some aftermath, I guess.
Like you said on the forum (not verbatim), the side-effect from treatment is being alive, and you'll take that.
I've adopted that attitude, myself, finally. Thank you.
Love and TOG hugs
Have you looked at Endsleigh Insurance? I'm pretty sure they insured me to go to Italy when I was about a year and a half out of treatment (if I recall, they asked if I had been inpatient in hospital in the last year). You can look up the wording, and you'd probably have to phone up to check, but since you'd only be having regular checkups it might cover you. (Much cheaper than specific cancer insurance too.)
It's odd, but even very mainstream insurers can vary quite a lot. Endsleigh I've not had a problem with as long as I wasn't going less than one year out of transplant (when my doctor said it wasn't a good idea to travel). STA Travel (which is better for me as it covers most adventure/fun activities) would only insure me from this year, and that was a bit of a surprise - I phoned up and they decided that four and a half years was good enough to be considered five years.
Dearest Wullie,
My heart hurts for you and your cycles of fatigue and depression.
Just know that the sun will be shinning in Boston when you and Ms. V come to see the gals -- and I'm totally convincing D to come too, I'll just bat my eyes a little ;)
Sending tons of love your way that this month is a relaxing, and smooth as possible as you enter into the work-world again. You have gone through a battle sir, as Susan said do not be so hard on yourself.
We all have to hit our lows, to start moving upward and onward. Know theres lots of beautiful ladies in boston thinking of you and the fam <3
LOVE,
Bekah
Wullster, I don't know why I didn't comment on this sooner, I apologize!!
I'm really looking forward to your visit here, and having lots of fun with you and the Mrs.
Please just take things one day at a time, and enjoy the good days! Ya know, last time I talked to Veroinca, we talked about how you're with the girls a lot during the day...aka the little horrorbags, and well, kids can make you exhausted as well! Sooo maybe when you're back at work, it won't be as exhausting :)
I'm thinking of you often! Maybe next time I chat with Veronica, I can call earlier so I can catch you awake as well!!
XO
Hey Wullie,
When you're in the US next June, let's try to meet up. I'd love to meet both you and Veronica.
Thanks for the update!
Stay well, friend.
BTW, congrats on reaching day +146! That's fantastic (despite the nagging side effects). Feel better!
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