Day 1 Chemotherapy (Cetumibix) followed by Radiotherapy and RIG attention.
This is the other halves second chemotherapy session, he attended a session last Monday. He stated that he felt comfortable in the chemotherapy suite and was not nervous as he knew what to expect.
20 Minutes for anti sickness infusion followed by 1 hour chemotherapy infusion, 10 minutes flush followed by waiting around for another 50 minutes, this is to ensure that you are not suffering any side effects. Hubby tells me at this point he went for a walk around outside, Son attended with him so had someone to chat to. Thankfully no effects to date.
Whilst having Chemo a Nurse looked at his RIG as he was concerned this was coming away, he has been very fastidious cleaning his rig, but even so when the nurse looked at this she reassured him that everything is fine, took his stiches out, been there for 2 week, the nurse also took a swob from this area to send to lab to ensure no infection as the area that had been stitched was red and she wanted to check for infection. (Great to know they are on the ball). The rig was dressed with appropriate padding at the back to make this a little more comfortable, he was shown how to change the water in the balloon once a week and informed if not comfortable doing this they would do it for him at his Chemotherapy sessions every Monday.
Radiotherapy - Oh dear this was the one thing he was always dreading especially as he will be having another 29 sessions. He gets rather claustrophobic and was really stressed about this treatment. Son accompanied to the room, he put on his mask and almost immediately it was taken off again, apparently this was to try and make him more comfortable and try the mask again. Once the mask was put on again and he was fastened onto the machine he indicated that it was too tight and he was uncomfortable, they moved a block from his head rest and all was okay. He hates the mask and wished the 10 minutes away, he did state that the machine is noisy but he felt nothing. Again thankfully at this moment in time no side effects. Back tomorrow for 2 of 30.
Fun part of having a rig - Hubby decided to have a bowl of ice cream last night, 20 minutes later went up for a bath, I heard him laughing and thought what a nice sound that was for a change. Apparently he noticed that there was 2 lumps in his feeding tube, so opened it to release them and this was followed by a stream of ice cream which he found hilarious, personally its a waste of food. You got to have a sense of humour.
Background - Hopes this helps those like us who have recently been diagnosed and going though the treatment.
Hubby had a lump on neck for at least 3 years probably longer. Despite me stating many times that he should get this checked out and attending his Doctors at least once a year for check up for his Heart problems he constantly failed to mention the lump. Long story short he finally mentioned this at one of his check-ups as an after thought as he was leaving Thankfully he's got a good Doctor who said we will send you for a scan to local hospital. 4 days later appointment arrived and off he went, scan completed, that same night (Tuesday) we received a call at home at 8.45pm. You can imagine the feeling when the caller turned out to be your Doctor who informed Hubby that they are not happy with his lump and he will have an immediate referral to Castle Hill, well we all know in our household what that means, we recently lost a friend who was looked after by them and a long ago ex partner of my Hubby lost her life there also. You can imagine the feelings running through us both at that time, we decided we would stay positive until informed any different. We waited approx a week maybe less, attended the first appointment think this was a Monday his throat was checked and his nose, the lump was felt and we was informed that a diagnosis was unable to be made at this point as everything in his nose and throat appeared normal. A syringe was used to take some cells for analysis from his neck and we was advised we would return in approx. 2 weeks for the results. A MRI scan was advised but my husband stated there was no way he could go in that machine so a CT scan was planned in. Well within a week we received a phone call to say that a PET scan had also been arranged. ( I usually take the calls as he does not hear well) All hell and no notion from then on, he was informed that he was to be admitted for a tonsillectomy and biopsies. We was a little flummoxed about this but could not seem to find out the reasons why, we just kept thinking we will ask when we go back for the results. Well we never got the results, we did receive another call saying his admittance had been brought forward, (panic) informed them that he had not had his CT Scan or PET Scan, apparently this was divulged to his Surgeon who informed us that the surgery will go ahead anyway and to try and get his scans earlier (panic again) we managed to get his PET Scan on a Saturday but could not change his CT Scan. We arrived at 7am on the day of surgery still a little confused and tired, had to get up at 5am to get there. During the pre surgery checks the aneseathiast came to see him and said you know why you are you, we both stated "well no not exactly" he seemed a little surprised, he was followed by the Surgeon who asked the same question with the same response. He looked a little shocked, took a breath and then told us that he had Cancer, our response ( Right okay what next) Apparently the surgery was a partial tonsillectomy and biopsies. For 2 weeks after the Hubby said this was the worst pain ever, beware; he is pretty strong but really suffered eating and drinking, but like everyone on here you get through it.
We then had an appointment with a Professor who apologised for the mix up and stated that the vital appointment to inform us of the initial results had been missed and that should never of happened.
Apparently the team meet once a week and he thinks that everyone got together at one of these meetings planned his treatment and forgot the vital link. We was informed at that meeting that he has Squamous Cell whatever it is can't remember now. With CUP (this is the worrying part) they cannot find the primary but the Surgeon informed us this is not unusual. Surgery was planned for a Neck Dissection, hubby hates being curtailed and found the hospital stay a nightmare, he managed to stay in for 2 days and then he was home, sore and uncomfortable, staples stayed in for 10 days and removed by his local doctors. (Shame just before Halloween as Son thought it would be great to scare the local kids) This followed by a CT Scan, then appointments at another hospital to have his teeth checked, this is quite a distance from our home at least 1hr 45min each way, he attended for his initial assessment and was informed that he would need 2 back teeth out, not to bad and a clean, unfortunately they where unable to coordinate these appointment and he had to attend for 2 consecutive days, a long trek. We went with friends on one of the days, had a day out and a fantastic lunch. He found that his gums have not healed as quickly as normal. The upside of this he will not get free toothpaste with high fluoride and mouthwash for free for life, there's always an upside. He then had an overnight stay to have his RIG fitted another curtailment, he had to lie still in one position for 6 hours, man did he hate that, no food or drink since 8am and he finally got a sandwich and water at 12.45pm wow he said that was the best ever cheese and pickle sandwich ha ha. Home next morning with another weeks break then last Monday the first chemo session. We are now back at this extremely long first blog.
It is Hubbys intention to drive himself the 100 mile round trip everyday for as long as he can apart from Mondays which is his longest day as he likes company. We are lucky we have some good friends who can attend every Monday from now on with him.
Me - I work full time and help out with grandchildren taking them to School some mornings in the week, my hubbys patience with them is wearing thin some mornings, but a gentle reminder usually sorts this out and he is aware he needs to be patient with them. One is 7.5 and one 4.5 so can be an handful. They know Granddad is poorly but we should said he had a sore neck , and now he showed them the RIG so they aware he cannot pick them up as often and they need to be careful running into them, they got told that Grandad got a poorly tummy and it is to put medicine in, the children was quite fascinated and the youngest said "Oh Granddad you must of been really poorly" bless them. We have decided that is all they need to know for now and we will revaluate if we need to. Back to me, I have used up all my years holidays now attending appointments with Hubby, informed my HR that I may need to take time off in an emergency if he is unable to drive himself to appointments. I got information from this site about a carers rights within employment and quoted this to HR, I have been informed they will support me (laugh out loud) and can have time off without pay if business needs allows (I don't think so I will decide it does allow, there are more important things in life).
okay I am boring myself now, so will end this first blog. Well nearly, they will never be as long as this one again, but my intention is to try and write up a daily blog and plot my Hubbys progress and feelings to help anyone starting out on the same treatment plan.
