Hi guys - very long (haven’t checked it so hope it makes sense!) January 19th After 26 days, I was finally going home! Car was loaded before my final radiotherapy session. A ‘review’ with a doctor which lasted all of 60 seconds. “Any problems?” “No, but can you tell me if I’ll be scanned before stem cell transplant?” “No, I can’t” ”OK then. Bye”. Nurse said I might feel a bit nauseous for a couple of days and to keep using the cream. Then I was off. Spent the evening catching up with the boys and watching films in front of the xmas tree. Lovely. January 20 - 28th Christmas day #2. Presents and xmas dinner to look forward to. Present opening was fine. Lunchtime, I started feeling sick. Then being sick. Then diarrhea-ing. All accompanied with the worst stomach cramps I’d had since childbirth - every 5 minutes or so. Mums out there, you know those deep breathing exercises they gave you to help with labour which went right out the window at the time? Well they came flooding back (without the hissing for pethidine…)! They do actually work :D Temperature was ok. Anyway, no dinner for me - 2 years in a row now. I ended up lying on the sofa listening to them eat. Not what we’d planned. This got worse overnight til I got totally freaked because it was just red. Now in hospital, they always ask if you have any diarrhea and is there any blood like it’s a bad thing so I wasn’t happy. Pete spent Thursday on phone ringing and waiting for calls from haematology (radiotherapy dept should help you), radiotherapy (you need to deal with haematology now) and my GP surgery. Anyway, they all rang back eventually and all agreed on the course of action. GP on call came out with some loperamide for the diarrhea, some codeine for the cramps and ondansetron for the sickness. All of which combined to gradually slow things down. All symptoms were related to the radiotherapy - why didn’t they warn me? I’d spent a month feeling fine and as soon as I get home? Whammo! Had to postpone pre-transplant meeting at Newcastle but they said it wouldn’t delay anything. So spent the week shuttling between bedroom and bathroom. Meanwhile… My youngest had had a bad cold with fluey symptoms during my last week in Middlesbrough but seemed to have recovered after a couple of days in bed. However, the weekend after I got home, he started up again and after checking with NHS Direct, P took him to local casualty. They said not swine flu because temperature had dropped to normal and sent him home. A couple of days later the surgery reckoned it was swine flu but too late to take Tamiflu. Fuuu*k! I’d had my 1st vaccination jab and Pete had had his but the boys hadn’t because of the snow. He stayed in bed and we were kept apart - communicating by banging on the walls and shouting across the landing. It was like something out of a Peter Kay sketch “Can yer ‘ear me now?!?”. The other two had the pleasant job of antibacterial-ing the doorknobs and the bathroom which we had to share. January 28th - 29th He seemed to be getting better on Thursday and me and P went up to Newcastle for an overnight before our meeting with the Consultant on Friday morning. Joseph (my eldest) was working on Thursday night so Jordan would be on his own for a few hours but he was quite happy with DVDs and we had people who could sit with him if necessary. We were ringing home every hour to check his temperature and that he was breathing OK (he gets asthma) and, sure enough, at 9ish it hit 40.2 degrees. Felt sick. Rang Joseph and he left work early to go home and play nurse. Two hours later it was 38.5. At least it was coming down. Rang the out of hours doc who confirmed there was nothing more to be done. His chest seemed fine so we dozed for a few hours and at 5.30am, we were both up and wondering whether it was too early to ring home and check J . Left it til 8am and nurse Joe reported it was 37.9. Pre-transplant meeting We went off to the Freeman and got there at about 9.30am. After a short wait, Consultant came for us. We went through the treatment timeline to date and then we got to the consent forms. “Now, there are risks. Firstly, there is a mortality risk (puts fingers in ears “LA! LA! LA! I’m not listening!”)…about 3 in 1000 (“Shut Uuuup! Can’t you see I’m not interested?!)…which is up there with any hospital in the world “Good. Moving swiftly on…” say I. He grinned just a bit toooo long before starting on mucositis (mouth ulcers/sore throat/ not being able to eat etc), diarrhea, vomiting, blood and platelet transfusions, potentially fatal infection risk (septicaemia etc). At this point my eyes must have been on stalks (probably through lack of sleep) so he leant in and said “Don’t worry! We’ll all be watching you. Like. A. Hawk.” Wasn’t sure whether to be reassured or terrified (anyone seen Fear & Loathing in Las Vegas?) - went with the first option. To finish with, he mentioned the possibility of relapsing and /or different cancers occurring later in life because of the chemo I’d have had. “But, this really is the best option for you - we are looking to cure you.“ So I signed the form. Seven lines of risks outlined and one little line under “Intended Benefits” - To treat and cure Non-Hodgkin’s Lymphoma. Re-read that about 10 times to make it sink in. Oh and he looked like Steve Coppell (football manager). Surreal. No time to dwell on it though because the transplant co-ordinator took over. He sent me off for a chest x-ray and an ECG first. Then back to talk about my joining their research programme as part of a control group. They are investigating ways of making donor transplants ‘better’ and wanted blood and skin samples from me. I told him he could have anything I didn’t need but he made do with a load of blood samples. He also took enough for cross-matching / blood counts / checking for diseases etc. I gave him my urine sample but no stool because I’d hardly eaten anything for over a week. He recommended swine flu jabs for me and Joseph as soon as possible. Also said it was OK for me to go to the dentist and get any work done that was necessary. A couple of teeth were starting to feel sensitive to cold drinks and I didn’t want them whipped out during treatment if possible. All done by 1pm and home at 3.30 ish. We arranged to get flu jabs at 5pm so had time to have cup of tea before Joseph drove us to surgery. They gave us a side room to sit in to avoid the waiting room which was good and we were in and out pretty quickly - Joseph was good even without the lollypop for being a brave lad. And home to bed… January 30th - February 5th Totally shattered. Having a bath, getting dressed and washing up sends me crawling back to bed. Jordan finally ‘settles down’ by Thursday and is eating again. So we progress to sticking heads round doors to speak. To the dentist on Tuesday and 2 fillings replaced. More snow predicted for Thursday when my outreach nurse is due to flush my Hickman Line. I’m keen to avoid another infection so we decide to go to the hospital on the Wednesday. A wise decision. February 6th - 7th Still shattered but have to make myself sort out the accounts - invoices to go out and all the rest. Today, I’ve watched Flight Of The Conchords with J & J which lifted me out of my sulk at feeling so crap for my 3 weeks off treatment and away from hospital! (I know, “Poor me!“). Definitely a bit grumpy today and didn’t need reminding that I still had to pack my bags for another month away (Sorry!). Eventually, bags were all lined up and ready to go. February 8th
So today’s the day. Woke up at 7am (Boo!) and “Oo! It’s been snowing! Again! Don’t the roads look lovely and white!”. Have to ring hospital to check bed situation then head south to head north because they’ve closed the road north out of the village (3 hour drive now).
As far as treatment itself goes, the protocol isn’t BEAM as I’d expected from the tales on here but EM or ME - I only get Etoposide (which I’ve had before) and the dreaded Melphalan (which I haven’t). The whole chemo bit lasts 36 hours and will start this evening. Then I get a day or two rest before they re-introduce my stem cells through a drip into my Line (hope they organise this better than I organise dinner and have remembered to defrost them!). I’m a bit concerned about the Line still because it has been known to be temperamental when it comes to blood transfusions but they assure me that any probs they’ll stick a cannula in and do it that way. Then I’m ferried down to Middlesbrough for 2/3 weeks at least whilst my blood recovers.
So there you go - told you it was long. I might try writing it as a Japanese Haiku in future - just 17 syllables allowed - I think most would be swear words though…
Thanks for the messages MacMates - I hope everyone’s doing OK. I’ve got a fair bit of catching up to do with blogs now but, off the top of my head, congrats to all with good results recently and eyes crossed for those waiting; Kezzer - give ’em hell; big thanks to Paul and his stem cell blog which I’m going to re-read (again!) - can’t believe how quickly the time seemed to pass.
I feel better now - writing this has definitely helped get my head in the right place for what’s coming so thanks again!
Keep on keeping’ on!
Love
Kx
