Left tonsil and left lymph node.

Thought I would let you know I rang the bell on my treatment today.. In the end I have come out ok so far.. in summary at the end of week 3 I lost my sense of taste, the beginning of week 4 I had the second round of chemo which knocked me sideways to the point that for about 5 days all I could do was sip water at best. Fortunately that passed and then started the fight back after loosing a load of weight. Stabilised the weight loss and the search began for what I could eat, anyway I know have a few things on the menu and also drink lots of milk. Neck and throat are very sore but have kept the exercises up etc.. pain relief am managing with the normal paracetamol and ibuprofen, using two different strengths of CBD oil on the side and have morphine as a back up…

anyway… ding dong people.. the treatment was no joyride but stayed positive with a happy heart and have got through it.. I can now hope that it has done that trick and I can focus on the next stage of the healing process.

thanks all for your help..

kind regards

T

Hi T

That is just wonderful news. Pretty good that you're still managing to eat and not knocking yourself out with morphine in the process.

Yes....so pleased for you, now get on and heal and get better

PS

Did you use Genesis care in the end? Just curious xx

Hi TWell done in completing treatment onwards and uowards to recovery. Keep doing what you’re doing great to hear that the treatment hasn’t caused too much suffering one if the lucky ones. Gives hope to others following you. 
We’re still here if you need us 

Hazel x

Yes.. used Genesis in the end. Pluses and minuses but overall far more pluses than minuses. The main care teams for both chemo and radiotherapy where really excellent, caring, supportive, compassionate and we had a few laughs along the way.. The only draw back was one day when I had a bit of a problem I got caught in the call centre loop which was really frustrating and in the end pretty hopeless.   Overall though the facility was good, the appointment times were always on time, had a couple of equipment challenges that got sorted quickly, there were some good alternative support services such as reflexology and acupuncture  and I was always picked up and taken home at the end of each session.

Hi Hazel.  Thanks for the note. I think suffering is a relative term. I have to say that after the second batch of chemo I have never felt so Ill in all my live and was genuinely quite frightened at times when my temperature started to climb. Also whatever anti sickness I was being given didn’t work. I think the really scary part was that for about a week I felt like I had little control over what was going on in my body and had to just hang in there convincing myself that it will pass and when it does I can regroup from there. When it did pass I had lost about 6 kilos in weight, which is not a crash diet I would recommend. This also lead to another problem which really hurt as even though I had hardly eaten in 7 days stuff need to get out. The side problem was as I was not able to get anything down that ruled out the laxative helpers. Anyway that was a bit of a set back but I have moved on from there.  The main thing I found, which is easier said than done, is try your best to stay as positive as you can, read the material, check out other peoples experiences but look for a balance, then prepare for the worst but hope for the best which in doing so if you get hit with the odd curve ball you are in a position to handle most of them and can draw on the care teams experience for the rest. 

As I said the treatment is no joy ride and I wish I never had been in the position to join this club.. All I can say is that you will have some really bad days but you will also have really good days that give you heart. As I said before try your best to stay positive, go in with a smile, take each day as it comes as they are rarely the same, listen to your body and if it says flake out do just that,  I can recommend setting up little WhatsApp group for support and humour, in my humour group there were so many bad jokes for me to look over, there was always something there that made me smile.

The main thing is the treatment might be bloody gruelling but it is doable and I think with the positive mindset and a happy heart, listening to and acting on the advice you can get through it.  All that I hope now is this it has done the trick and I can focus on the healing process and with fingers crossed get the all clear in a few months time.

Regards

T

Hi Hazel.  Thanks for the note. I think suffering is a relative term. I have to say that after the second batch of chemo I have never felt so Ill in all my live and was genuinely quite frightened at times when my temperature started to climb. Also whatever anti sickness I was being given didn’t work. I think the really scary part was that for about a week I felt like I had little control over what was going on in my body and had to just hang in there convincing myself that it will pass and when it does I can regroup from there. When it did pass I had lost about 6 kilos in weight, which is not a crash diet I would recommend. This also lead to another problem which really hurt as even though I had hardly eaten in 7 days stuff need to get out. The side problem was as I was not able to get anything down that ruled out the laxative helpers. Anyway that was a bit of a set back but I have moved on from there.  The main thing I found, which is easier said than done, is try your best to stay as positive as you can, read the material, check out other peoples experiences but look for a balance, then prepare for the worst but hope for the best which in doing so if you get hit with the odd curve ball you are in a position to handle most of them and can draw on the care teams experience for the rest. 

As I said the treatment is no joy ride and I wish I never had been in the position to join this club.. All I can say is that you will have some really bad days but you will also have really good days that give you heart. As I said before try your best to stay positive, go in with a smile, take each day as it comes as they are rarely the same, listen to your body and if it says flake out do just that,  I can recommend setting up little WhatsApp group for support and humour, in my humour group there were so many bad jokes for me to look over, there was always something there that made me smile.

The main thing is the treatment might be bloody gruelling but it is doable and I think with the positive mindset and a happy heart, listening to and acting on the advice you can get through it.  All that I hope now is this it has done the trick and I can focus on the healing process and with fingers crossed get the all clear in a few months time.

Regards

T

Hi All

Just thought I would post a little update for you all as to how its going. I am now 18 days post treatment and have pushed pretty hard to make progress and think things are going OK. The first week following treatment was a bit of a struggle as the throat was very sore and I think that the treatment also caught up with me a bit and spent quite a bit of time sleeping.. 

Since then the changes have come pretty thick and fast. With a bit of effort  i pushed through the pain barrier with food and swallowing and can pretty much take most things on now including pizza, fish and chips, the Sunday roast, bags of crisps etc but I always have a back-up can of rice pudding in reserve not only for the calorie intake but also because i find it really soothing on the throat especially after you have gone for broke on your varied texture food intake. The only downer with this is that my taste is still pretty much non-existent with the exception of the occasional glimmers coming through to only fade away again.  I great example was on Sunday.. The night before I made a meat and potato pie for supper (could not taste a thing but the Mrs loved it). On Sunday I went for a long walk and was hungry when i got back and there was some left over that I heated up and could actually taste it.. "bloody Marvelous" :-).. A few hours later we did a roast chicken dinner expecting that i would taste that and could taste nothing again.. :-(

Anyway the whole food mission thing had a purpose and that was to start to grab back some of the weight I lost during my second round of chemo.. I am happy to report that i have got 2.5 kilos back. 

Other plus points are I have scaled back the painkillers to just a couple before bed, the walks most days are getting longer and general fitness is improving to the point I have managed a few games of golf and chanced my arm and also walked the course today (ahead of the target i set myself) and now sleeping better for greater lengths of continuous time. The only two areas that are more of a challenge at the moment is I find that I struggle to concentrate for an elongated period of time and have also noticed that my muscle strength is quite a bit weaker especially in the arms and in the core. Will start to do something about that in the near future and any suggestions would be very welcome.

Overall my consultant is pleased with my progress, albeit gave me a friendly telling off for maybe pushing a bit too hard. (i just took that as a back handed compliment.)

I suppose in theory I could sit here being quite smug that I am where I am.. but really the only point I would make and hope others get some encouragement from this is it was only 5 weeks ago when I started my second round of Chemo and can honestly say that during that week I have never felt so ill and also so scared in my entire life. My temperature was doing a dance, energy was draining from my body, I couldn't eat and could just about sip water and was loosing weight at a ridiculous rate and basically thought that what I could see in the tunnel was the light of an oncoming train.. well sitting here today with some focus and determination and amazing help and support from those around me it really wasn't the light of an oncoming train but genuine light at the end of what was a pretty challenging tunnel. 

My process is not over yet as i still have to wait and hope I get the all clear. For those that are going through this right now just hang in there and keep pushing as, like with me, you will go though some pretty dark days and i hope that for you, as with me at the moment, there are better ones little further down the track.

Best wishes and kind regards

T

Well done T You have made great strides in your recovery.

The eating thing is strange. I always tasted the first mouthful then it went completely but you have the right attitude. Eat it anyway. The taste does come back. You seem to have avoided the dry mouth miraculously which is great.

Hi T well done on getting through treatment. Keep on doing what you’re doing food  is fuel and eat to live we’re my mantras. Everything will sort out eventually. We are all different how we cope. I managed on 6 small meals a day to start with. Well done once again. 
Hazel x