As per my previous message, Richard's funeral is taking place next Wednesday, December 17th at 4pm.
The service is taking place at The Chilterns Cremetorium in Amersham. The website for the cremetorium is www.chilternscrematorium.co.uk there is a location map on this page for anyone who needs directions.
After the service we will be moving onto Stoke Place for the celebration of Richard's life. The website for Stoke Place (not to be confused with Stoke Park which is in close proximity to Stoke Place) - www.stokeplace.co.uk/index.shtml. It will be lovely to see everyone there after the service and all are welcome - as Rich would say the more the merrier.
Stoke Place is aproximately a 20 drive from the cremetorium, however a very easy route to follow. I will arrange for some instructions to be available for people at the cremetorium to ensure that no-one gets lost.
I would also like to once again express a massive thank-you to my family who have been a constant support at my side for the past week and all our friends who have been helping out with the arrangements/building work/paper work etc or just being the supportive ear at the end of the telephone or over a glass of wine. Without you all I would not be able to function at the moment so thank-you and I love you all so very much.
Friday, 12 December 2008
As per my previous message, Richard's funeral is taking place next Wednesday, December 17th at 4pm.
Tuesday, 9 December 2008
Before I go into the details I would like to say a massive thank-you to everyone who have left messages, sent cards and for all the phone calls I have been receiving daily. It's times like now that friends and family are needed to lean on and I am blessed to have fantastic friends and an amazing family.
The initial arrangements for Richard's service have been made as follows:-
Wednesday 17th December, 4pm at The Chilterns Cremetorium
Anyone wishing to attend will be more than welcome and I will be arranging somewhere for the celebration of Richard's life afterwards - details will be advised on here once I have everything sorted.
I am requesting that we only have flowers from family and close friends. I hope this does not dissapoint people but I am going to arrange for a charity to be set-up in Richard's name (or Mr Baldy Lymphoma) and the funeral director will collect any donations people may wish to make. They will then transfer the monies to the charity once everything is set-up or we will donate to Cancer Research if this process takes longer than anticipated (I have only made initial research into how to set-up a charity so it may take some time, I'm not sure...... if anyone has any experience of this all advice is welcomed)
Friday, 5 December 2008
For those of you that I have not been able to contact directly, or via friends I am sorry if this is where you hear the news. But sadly my fabulous husband lost the battle this morning and passed away in his sleep.
For all of you that have been following this blog and helping Richard with your fantastic words of support I would like to say how appreciative I am that you were all there behind him every step of this fight.
I will add another post on here once the arrangements have been made.
I wish that I was as witty and good with words as my boy to add a comment to make you all smile, all I can think is that in his non-believing state he is now having an argument with St Peter at the gates to let him in! Which no doubt he will win (probably bribing them to update their IT systems).
Friday, 28 November 2008
Last morning I woke up with a husky voice, today none at all. I could make gruff noises, whisper quite coherently but not talk, at least not in human. I think this gives an idea how aggressive this thing is. No small change every few days. The radiotherapy doc noticed that the tumour has increased significantly from the scan he saw barely a week ago, so have moved the radiotherapy forward to this Monday. I'm quite happy with that as I want it zapped. He is worried about the amount of radiation its going to take to have a chance to clear the left lung (I think it is the left one). There isn't any choice really. Unless the main mass shrinks, it'll have burst out my chest aliens style before there'd be any chance of being ready for the stem cell procedure. My current set of doctors/consultants at Wexham just seem to want to keep me down. I had to go in today and give blood. I was hoping to see my normal consultant, who the consultant/doctor dude from Hammersmith, who we saw yesterday, would have got in touch with and brought up to speed and set on the task of coordinating donors. Anyway, he wasn't there and I got to see another doctor, she was okay until she started talking about all the different things that could go wrong before even getting to the stem cell transplant and that it was very low chance statistical that I'd get there. Bloody marvellous. I think I'm only going to listen to the Hammersmith doc. So far this week I've spoken to three doctors. Two from Wexham (first of whom depressed me so much I broke down in tears in their office), the Hammersmith doc who filled me again with hope yet tempered by the possibilities, risks and dangers and a final Wexham one who pissed me off again. Just tell me the path is fraught with potential issues and dangers and leave it at that. I don't want "very low chance statistically". One sounds hard but worthwhile, the other sounds like "give up, you're wasting your time". Argh! They make it so hard to remain positive and focused.
Thursday, 27 November 2008
We had an appointment today with a doctor in Hammersmith hospital. I hassled my consultant that I'd like to see him, based on the fact that he suggest my last chemo when everyone else was out of ideas. My consultant contacted him with my details and I made an appointment for 10.30 today.
I was nervy all night in case my voice was going to disappear forever and slept elevated and anything else I could think of (it was when I was not elevated at all that it happened. So, clutching at straws, but you never know!). Strangely, I woke up feeling pretty good despite a 38.6 temperature.
Things were manic, just as they are most mornings in our house, what with kids to get ready and drop off at appropriate places. Time was ticking and it looked like we would be late and then Harry caught his foot and fell on the step as we were heading to the car (he was okay and more worried about the toy he dropped, I almost filled my pants when I saw him go). We dropped him off, then entrusted ourselves to the mighty SAT-NAV. According to the ETA, we would arrive bang on time for the appointment, so if parking was easy and we were right next to the clinic we'd be a couple of minutes late, so all good so far. We hit some traffic and my heart fell, but there wasn't much and my wifes majestic driving (eek!) got us ahead of schedule without triggering traffic cameras or getting traffic police on our tail, so all good. We got there and to reception bang on time, then were kept sat waiting for half an hour. Typical.
The doctor came out. He was smartly dressed, i.e. shirt and tie, but somehow managed to make it look a tad dishevelled, but hey, I was more interested in what he had to say and whether it was just the same of rubbish.
He went through my story so far and sympathised (I started to think he was going to say, nothing we can do). He then went through the various options normally used. He said because RCHOP, RICE and ESHAP chemo have failed, it is highly unlikely any other regimes would work, so chemo was not really a viable option. He said the radiotherapy was a good idea and that media stinal tumour usually respond very well (much more positive). He said the only other option was a stem cell transplant. This would involve high strength chemo, then adding back in stem cells to rebuild the now battered immune system. He then said that it was highly unlikely that would have an effect. I thought this was where he was going to offer to do it, but just for the sake of doing something and maybe, slim slim chance, might work a bit. I felt my heart start to dislodge it self and get ready to drop, but then there was a "but". I like "buts" in there situations. He then went on to say that in this situation, the option with the best, real chance of eradicating (I liked the use of this word) the tumour was to do stem cell transplant, but not use my cells. So, it go as before, but instead giving me back my immune system, I'd get someone elses (how romantic). The idea being that the new immune system sees the Lymphoma as foreign, something mine hasn't done, and lays into the bleeder. The chances of success are not amazingly high, I think 35% was guesstimated, but that's better than what was on offer (0%).
First step is to find a matching donor. The best and most compatible are siblings, with a 1 in 4 chance of matching (so sisters I'll be asking you soon if you fancy throwing any stem cells my way). If not then they will search for a match in the UK database and I am told it is usuaully easy to get one. The thing with a sibling donor is that there is less chance of nasty things happening at the beginning, which is slightly riskier with a non-sibling donor. So the risks for me are very real but not as bad as the 100% risk otherwise. So I'm excited. There is a new plan and it is progressing. The only danger is that the new little nodules will be left to there own devices, so the hope is they do not become troublesome!
Wednesday, 26 November 2008
Today was bad. In fact I think I hit rock bottom. Not a good place to be. Let me explain a little...
During the night / early morning, (I guess the opposite of twilight, but can't think of a name for it, if it has one. (I could call it norning or might, but that is just silly)) I woke up and it felt like my throat was clagged up with phlegm. I tried to talk but couldn't which freaked me a bit. I coughed and growled and tried to clear it but to no avail. My voice came back but very quiet and husky. My actual cough was not normal either, it sounded like a hobo giving his last splutter just before falling into the dumpster for the last time. It was weird, unpleasant and bloody frightening. I tried water and gargling but nothing would shift it and my normal voice wouldn't return, just this quiet husky alter ego. Next morning my ears were still not right and the right one was deciding whether to ring or sound like the sea. My temperature was high and I felt washed out and tired. It just seemed like it was lots of little things piling up, trying to kill me off in a kind of death of a thousand cuts or something equally dramatic. I was pretty low. My wife rang the Eden centre and they said for me to come in and they'll see what they can do for my throat. That made me a bit happier but my mood was down after so many days high temperature, feeling tired, worried about what's going to happen and the steroids I had recently had had made my legs as bad as they were yonks ago etc.
Sam had to go to London for work so she rang her mum, to see if she could drop me off and she could (my mother-in-law is great). They said they wanted me to come in quickly, so we rushed in and then I was just sat there waiting for about an hour or so. A bloke next to me kept trying to talk to me, but he kept using my ringing/sea ear so I couldn't hear him, just occasionally catch his lips moving. I tried to explain the situation but I don't think he could understand me with my quiet huskiness. That was just awkward. Anyway, finally the doc sees me. I'm expecting to get straight to business and get my throat checked and maybe my sinuses or something for my ears, but no, she just starts asking me a raft of depressing questions about my worse fears about dying. She asked me what I thought the throat problem was and I said it was either mucus/fluid or the lymphoma had done something. She said most likely the lymphoma had invaded part of the larynx or one of the nerves and that was why. I asked if during radiotherapy, if the tumour regressed, could I get my voice back? Answer: The radiotherapy may do nothing (nothing like building up a bit of positiveness). ME: But if it does? Answer: Maybe ME: Could I lose the ability to speak altogether? (scared now) Answer: Maybe ME: Would that be permanent, even if this thing was cured etc Answer: Maybe. Then she went on to highly emphasise how unlikely any type of cure was and there may not be any response from the radiotherapy (what has she got against hope? and radiotherapy for that matter). Anyway my pile of depression was being added to by the second. I so wished I hadn't come. At some point I broke down in tears. It may have been during some of the questioning or at some other point, just because I felt so low. I don't know if this was registered as a point on the "help come to terms with things" ledger (good work everyone, the patient cried, they can go to their graves easier now!).
Anyway, I finally escaped. I went back to ma-in-laws had some food and then had to rush home, as Sandra (who comments here regularly) was coming to visit. Got home as she was arriving, so good timing. Spent a nice afternoon and felt a lot more perked up by the end, which was cool.
What really perked me right back up was when my wife got home. She was all smiles and wonderful and just lifted my spirits. Thanks wifey!
Tuesday, 25 November 2008
I had my first planning appointment for Radiotherapy. Sam drove me over and Harry came too. The appointment was at 7pm, which was unusual, but left plenty of time, or would have for normal people, we got there in the nick of time. We managed to get lost in some deserted corridors before finally a friendly cleaner told us we were on the wrong level. So off we went Harry in the lead, Sam setting quite a pace and me at the back, my feeble pin legs struggling to keep up. We got there and they were waiting for us. I took my top off and was positioned on the CT scanner and some lines and dots were drawn on me. Then I was fed in and out of the machine a couple of times. When they were happy, three of the dots were turned into tattoos. Sadly dot was the only tattoo going, there was no catalogue or anything. That was that. The idea is that they can use the scan for planning where the beams go, which is then all computer controlled. It felt good that something was happening.
Monday, 24 November 2008
Yesterday, I woke up with a temperature of 39.3, which is pretty high, but the hospital aren't too concerned now, as this close to chemo day it is pretty normal for me (as long as my infection markers are low and I'm not neutrapenic). Anyway, it leaves you feeling washed out and crap, so I spent most of the day dozing. My wife had loads of work to do and was beavering away and the kids were playing. We were actually at the in-laws and they have a stair lift for great grandma, but she never uses it. Because it is there, some of the stair banisters had to be removed so it could travel okay. Well, I was lying there and Sam was tapping away on the keyboard when a loud bang was heard followed by Harry, our little boy, crying. Sam moved like lightning, I told somewhat longer unfortunately. Harry had fell off the stairs where some banister was missing and took quite a fall. He was in shock and had hurt his little hand. Sam had already got her sister to call an ambulance by the time I had got down. The paramedics checked him over and he seemed pretty much unhurt, but he was in shock and not himself. His mum went with him to hospital to be checked out and he livened up when he saw the toys to play with. He had an xray and a thorough check by a nurse and a doctor and seemed fine. By the time he got home he was his usual crazy self!
Well, I'm back and focussed again. After the shock of the previous news, especially when my consultant had said there were plenty of back up plans, things are settling. I will not lose to this thing. It is not an option.
Thursday, 20 November 2008
So I had the scan. No problems. There was no queue and it went like clockwork. The next day I had an appointment to go through the results.
Monday, 17 November 2008
Well, I was in the hospital on Friday for a blood test and line redressing. I also wanted to find out the details for my scan which was meant to be scheduled for today. Did the blood stuff and that but when they checked their system for my scan appointment, there was nowt, nothing, zilch.
Monday, 10 November 2008
I've not written a post for a while again, I know, I'm a very bad person. I'm finding it hard to get motivated to do things, pretty much anything, including getting out of bed. I just feel tired, tired and then a bit tired. It hasn't helped that I've had a cold on the go too, which has left me with that annoying ear thing, where whenever you speak it sounds really loud in your head. I keep saying, "what?" or "pardon?" to anything said to me, as I can't hear a sausage!
Tuesday, 4 November 2008
A few of us went to see the new James Bond film, Quantum of Solace, on Sunday evening. I did my injection for the day, whoo, got to love the injections and I was ready to go.
Thursday, 30 October 2008
Sunday, 26 October 2008
So, we're sat at home yesterday. I'm in bed, just getting myself ready to shift my ass and go downstairs. My wife wasn't feeling very well and was sat on the bed with my sister.
The mood and message seems to change each time I see my consultant. Once again the mood is positive and the message is that the stem cell transplant option has not gone away. If this chemo regime can get a reduction in the nasty stink beast (my affectionate name for it) then they will jump into high strength chemo, utilising these drugs that have worked. Sounds like a plan. Also, this chemo is given as an outpatient, only takes about an hour to do and also is meant to be easier to tolerate. So far, sounds a winner!
Monday, 20 October 2008
I had the heavily awaited scan today. I got to the place, was given a big old nasty drink to drink and sat waiting a bit. The waiting room was pretty full and they were an amusing chatty bunch (total surprise, but a nice one!). So the wait was pretty short. They all got called and I was left with a very fat man, a man in a wheelchair and a couple of middle years, where the wife was frequently belching and issuing orders to her husband in her Scottish drawl. Amused me.
Last week on Monday evening, I got a call from Hammersmith hospital saying they had a slot free on the magical mechanical stem cell machine and could I get there for 9.00am Tuesday. I checked with Ma-in-law who would be driving me and she said yes, but we'd have to leave at 7 (2 hours, not bad for a 14 mile journey. We love you traffic).
Well, it's been a good few days since I last posted, but I have a fair excuse (well, I think it's fair anyways). I have basically been feeling like utter crap! Since the Saturday before last Saturday, I was presented by the health fairy with a constant banging headache, that wouldn't shift with pain killers.
Friday, 10 October 2008
I'm out and discharged from hospital. I feel really tired and lethargic and can hardly walk due to my wasted leg muscles. I walk like a badly coordinated 96 year old. That's not the worst bit, getting up to standing is a swine. Don't even ask about the worry I had when I sat on the toilet (yes, I thought I was stuck and was going to need help to get up. I just managed it though. Not fun). As soon as I was released I tried to start getting some walking done and to go up the stairs a few times (that's a killer). Next morning the few scrawny muscles I did have were throbbing and I could hardly move my legs at all. Standing wasn't only difficult it was bloody painful too. So, as good as high dose steroids are for somethings, they are bastards when it comes to scoffing muscle tissue. I now officially have chicken legs (or chicken bone legs to be more precise!)
Tuesday, 7 October 2008
Grrr! I'm not patient any more (although I am a patient, boom boom, puntastico!). The doc has been to see me and checked everything off the list: no puking, no fever, temperature under 38 for 24 hours, looking well, not dizzy, weight ok, etc, so-on-and-so-forth.
Monday, 6 October 2008
So they told me when my last bit of treatment was done, I'd pretty much be able to go home. I was an excited kitten. Sleeping in ones own bed and all that. Well, the last slow bag of fluid crawled into me and I had a good nights sleep, all ready to be up and out the next morning but, shock horror, I had changed...
Saturday, 4 October 2008
Many thanks to all the well wishers who have sent me messages. I love all the comments I get, unless they are hideous death threats due to my writings about the prophet (not done any, so should be okay there, unless the Johovas Witnesses read my previous post and get militant).
Well, chemo has slowly dragged on. It hasn't made me feel bad particularly. I've been tired and not wanted to leap tall buildings in a single bound but the previous CHOP chemo made me feel worse. The rub here is that you are wired up 24/7. There are 4 lots of a drug called Cisplatin that you get for 96 hours, accompanied by loads of fluids (as it is a bit of a nasty sucker to your insides if let loose on its own). Now, the annoying thing about constantly getting fluids fed in, as I've gone on about before is that they start to bloat you out unless you can get rid of them. They give you some drugs to help get rid of them, but it's an ongoing drudge. Anyway, the 96 hours is getting near to an end and my grumpy mood (obviously noticeable as my wife has bought me a Mr. Grumpy t-shirt. Thanks love). Also, both a plus and a minus are the large steroid doses used on this chemo. Plus side, I've always responded well, so yay there. Downside, if they are given late they can stop you sleeping. Mine were given late, as the infusions were going on so long (on and on and on...! You can tell I'm not the most patient person in the world). So, first night, no sleep, just mad thoughts that wouldn't go away. You think of one thing and go off on a tangent and then another and then another, until you pull back and think "I WANT TO GO TO SLEEP!" and then a thought about sleep, e.g. a film that had sleep in the title comes to mind and away you go again. Thankfully, I seem to have adapted and was able to sleep okay last could of nights, apart from the regular wakings up to pee in bottles (all urine out has to be measured and compared to fluid in, to make sure it's not welcome to bloats-ville).
Friday, 26 September 2008
Thursday, 25 September 2008
I tried to warn you, but no.
Wednesday, 24 September 2008
I'm a bit pissed off. Not about some ache or pain I have to moan about or some treatment option but about 2 of my busy body interfering neighbours back home.
Tuesday, 23 September 2008
Well, scanxiety wasn't around for long. My consultant came in and told me that despite the fact that the two scans were different, one was a high res scan and the other was something else (I don't remember every detail) and difficult to compare like for like, as far as he could see they did not show the level of tumour response that they would be looking for at this stage. Great! Super! Magic!
Stupid temperature! After 24 hours of it behaving, it decided to ping up again, but its back down now and I'm feeling pretty decent appart from the stomach twisting fear of scanxiety. I've mentioned scanxiety before (sadly, not my own term, but if no one comes along in the next 30 days with proof of original invention of it, then I'll claim it as my own, damn it, and fight till the death to defend it, hurrah!).
Sunday, 21 September 2008
We did it! We mounted an escape bid. Well, my wife did really. She is very clever and very cunning (and may also be reading), did I also mention beautiful and talented too? :)
Friday, 19 September 2008
I'm still incarcerated in the Wexham Hospital of correction without being charged.
Saturday, 13 September 2008
So I'm sitting at the in-laws with a cheeky glass of red (purely medicinal of course!) and a bowl of freshly made pasta (the sauce was made from fresh tomatos home grown next door, deeeelicious) when the phone rings "Its an emergency we need you to get in now". "Who is this" I asked, just in case it was MI5 and they had finally caught up with my dark past (that's another blog all together, or is it.....), sadly it was just the hospital. Bed battle had commenced and I had to haul ass to Wexham Park Hospital immediatly to secure my bed for my week-end chemo session. It was starting to get political! So faster than a speeding bullet (or the type of bullet with fat ankles, swollen arm and baldy head hobbling like a Granddad) I headed off.
Wednesday, 10 September 2008
Not so Fritz!
Monday, 1 September 2008
I've been in hospital since my last post. In that time quite a lot has happened. A quick summary:
* Dark thoughts of doom (not fun)
* 3 days of chemo (details later)
* PICC line in my arm
* Arm the size of an elephant and the colour of a babboons bottom
* Coughing till I'm sick
* And.... hospital food!
Got here wednesday and was scheduled for a PICC line being put in on friday. This is a tube that starts at your elbow, goes inside veins, along your chest and empties the other side. Having it put it was like being the sausage skin when then the sausages were being made. My arm was already swollen so i think he needed to give it some extra gumption to get it in.
Later chemo started with the Rituximab and a quick infusion of one of the other drugs. All ok.
Saturday was the 24 hour infusion day. Unfortunately when they put in my line they only had single ones whereas I need two, so they had to use the canula in my other hand. Basically this chemo drug is pretty nasty and so they have to load you with masses of fluid and another drug called Mesna, so it doesn't start messing up your bladder and kidneys. Yummy. Now, here's the rub. Getting about 12 litres of fluid means that it has got to go somewhere. They dont want it settling in your body as a)that leads to bad things and b)makes you look really silly. The solution? Everything you drink and everything you pee out has to be measured and checked to make sure its balancing the fluid going in. So, picture me now. I have tubes in each arm, going to drips on either side of my bed. A kind of crucifixion set up. I'm not going anywhere. I'm feeling rubbish, due to chemo, mood, energy etc and don't want to do much at all.
So, the infusion started in the early evening and by night I was getting checked for urine production, as i was falling behind schedule. Couldn't be arsed, leave me alone was my productive thought. The response was to inject a diruretic into my line. It was like dark magic from ancient yore! I felt the rumbling approaching. Stomach to brain, erm, sir, I think we have a situation. Bladder here, I have incoming! It took about a minute before I had to slide my butt out of bed, grab a nasty cardboard hospital piss pot and unleash. Unleash it did. Only just got the next pot in place before reaching the top. Good skills prevailed though. Back into bed after. Now, trying to donate to the pot a little sooner. All was ok until the the pee monitor arrived looking worried again. Quotas not reached. We know what happens when quotas are not reached. Brace yourself bladder outer defenses have failed.
I got through my 24 hour infusion, but in this time being stuck in bed, there was a certain other body function that had been neglected but was not about to be forgotten. My second line was removed and I could be vaguely mobile. I stood up and the alarm went off. This is a 5 second bowel unload warning. All other protocols are disregarded. 5..4..3..2.. I hobbled like the wind, dragging my other attached drip with me. Thankfully all attrocities were averted.
Being bed bound so long and received big dose steroids has meant my legs have become pathetic and like chicken legs. Walking ceased to be the natural talent I've had for many years and became a new skill to learn. Very perturbing. Slowly lowering yourself out of bed onto swollen feet that look like skiddoos. Then wobbling left and right to get balance, then performing the nursing home hustle, throwing one disobedient leg forward then the next. This wouldnt be so bad, but I had a cough. This cough began when I changed position radically and each burst got worse until I started to gag and finally be sick. So, I had to time my expeditions so that I could be back and still before hitting the gag zone.
The cough has lessened right off, but still loiters a bit. My right arm is still swollen and red but not as bad as it was. I was sleeping with it suspended in a sling in an attempt to help drain fluid away. Stupid fluid.
There's more, but this post is too long already. I will hang fire, reload some vitriol and engage again later, may be mentioning some of the good points (there have been good points, e.g. my boss visiting with loads of home made brownies and more importantly getting a sneaky 3G dongle to me so I can get online, yay, online again)
Wednesday, 20 August 2008
Well, I went in to see the consultant today. I was pretty anxious, as I've been noticing dodgy little symptoms, similar to what I had at first diagnosis. Shortly after going in he told me that the news wasn't good and that the scan showed that the tumour had been growing again. The bastard! Why can't it just die!
Anyway, this means it's plan B (sadly there are no plans C or D, so plan B better work!). This involves going into hospital (where I'm heading shortly), where I'll get a line put in (a tube in a vein) (which I'd been hoping to avoid). Then there will be a 3 day chemo infusion. This regimen is called RICE. My last one was CHOP-R. Then it's 3 weeks off, then back for another RICEing, then 3 weeks off. Then there is a scan. If the tumour has shrunk, it is on to step 2. If it hasn't then...oops, sorry, we're out of ideas. Bye. Don't like the sound of that much, so lets assume it works. Next is a loads of injects to get the body producing extra stem cells which can then be collected. In to hospital then for 4 days of hardcore chemo. This one will blast away my poor immune system and bone marrow that would regenerate it. Hopefully it will also nuke any remaining tumour. Then the previously collected cells are returned and they magically recreate a brand new shiny immune system. Hoorah. Apparently the success rate isn't amazing but it's not rubbish either, but I need to talk to the big man total specialist dude to get those details. So, the boring journey continues. Not sure when I can post again, as hospital beckons.
Tuesday, 19 August 2008
I'm back to work, but not feeling that good. My stomach has still been giving me grief and I've been getting this weird double vision type thing going on after I wake up (continuing until it kind of sorts itself out).
I thought I'd be pretty chilled regarding my first scan, but little things keep happening that are freaking me out a bit. Yesterday my right arm seemed to be swelling up a bit. This was what happened on my left arm and was caused by the blood clot. I neither want another clot or for the swelling to be due to growing lymphoma. No sir!
Its a bit tender and it seems to be a bit swollen around the forearm only. I'll keep an eye on it.
My previous upbeat (at least I think it was pretty upbeat) mood is starting to fade. I'm getting fed up now and just want to feel well. Hit a bit of a low.
Thursday, 14 August 2008
It's been a number of weeks since my last treatment but rather than feeling better I've been feeling rubbish. As of today, I feel a bit more energised (read that as: don't just want to sleep (not that there is anything wrong with sleep)).
My stomach has been the biggest offender. Not that it is that big or weirdly shaped or anything (at least I didn't think it was. I feel the need to check it now, due to pure paranoia!). After my anti-biotics were completed, it started hurting quite badly pretty much constantly and my energy dropped right down. Now, a few days later, it seems to be starting to settle.
I've got my CT scan on monday, a blood test on wednesday and will be seeing my consultant for the results on friday. I'm hoping it is smaller than last time but understand that it is not expected to be all gone (dead tissue and scar tissue left behind) due to the type of tumour it is.
If all goes well, a couple of weeks after I will get a PET scan, which will determine if anything left behind is still active (bad) or dead and buried (yay, die tumour scum, die!)