I wish I knew then…

Like Dani, I never really got The Fatigue. Maybe my afternoon naps lasted a little longer than they had previously, but nothing worth reporting.  Like Dani too, for me the curtain came crashing down very suddenly, in my case about 10 days after treatment ended. I honestly thought I’d been one of the lucky ones up till that point, but how wrong I was! My gp stepped in immediately with MST (slow release morphine tablets) which took the edge off. I was then surviving on just custard, Fortisips and Ready Brek as they were the only things I could swallow, aided by Oxetacain and Difflam. The pain then became more manageable.  I was never really totally pain free, but it was bearable. As it subsided slowly over the following weeks I was able to reduce medication until I came off it altogether.
We all react slightly differently, but when you read people’s accounts there are some common factors which you can prepare for.

Wishing you all the best. M

Hi MrsPooks They do give you a book to read which I red after the event so that was not much good my fault . I attended a meeting at the cancer centre and it was deduced that the information we were getting was to little to late after treatment. You have to just keep on the ball as best you can with being knowledgeable. We are all different and react accordingly. My advice would be address any issues straight away. I didnt have any real problems with burns as used cream everyday , had Laxido everyday on morphine , Walking everyday helped massively and audible books help past the time . All the Best Regards Minmax

Hello Dani thanks so much for your reply.  Will check out your blog. Can you remember when your pain and or swallowing improved during your treatment? 

Many thanks for your response.  Will check out your blog.  Did you have trouble swallowing and pain in face/head? Im wondering as its the same place that my husband has his tumour.  Im curious as to when the pain is likely to stop during treatment but I guess everyones different.  

Hi MarkEL I just want to say that I enjoyed reading about your journey and treatment, its helped my husband who has yet to start treatment.  Many thanks!

Chicadee16 said:

Can you remember when your pain and or swallowing improved during your treatment? 

Hi. I had a bit of pain but that was after the biopsy. My oncologist told me that if it was due to the cancer it would get better after a few zaps but to expect side effects to start kicking in at the end of week 2. 
By the end of week three I was in a lot of pain and couldn’t swallow at all. I had an NG tube for 8 weeks. 

This is exactly what I’m looking for, for £10 I’d rather have this on standby, I can get an answer about using it from the cancer nurse at 3am but I can’t buy it and have it ready unless I know

Hello MrsPooks, we all have such lovely online names. What a good question “what do you know now…”. My partner and I  have spent all afternoon discussing this. Firstly just a brief overview of my situation, similar to your husband and I had 35 RT sessions and was supposed to have 6 chemo sessions but I only had 5. I was in such shock with the diagnosis I didn’t read anything , hear anything and whilst my partner tried to explain the treatment to me, my brain didn’t take it in. So I really went in cold and little knowledge. With knowledge and insight I would have been more prepared for the nausea. We are all different but the nausea was worse than the pain. I wish I had insisted from day 1 that I have the strongest anti nausea available , the sickness was overwhelming . It never really stopped until I was so so sick and dehydrated I had to go to hospital to manage it. I think the sickness finally stopped about 3 weeks post recovery. The second thing that I wasn’t prepared for was the trauma of the PEG. I was persuaded to have it fitted before treatment. It saved my life but the fitting was traumatic, the pain difficult to manage and the psychological impact of having this plastic thing hanging out of my chest was awful. If only someone had told me how dreadful it was but that it is a life saver I think I would have coped better. The third thing was that I discovered this forum in post recovery. Had I found it sooner and had people like Hazel and Dani encouraging and supporting the process I think I would have coped better from the outset, however found the forum eventually and this has helped enormously with recovery. Skin burns were uncomfortable but manageable, just lots of cream and fresh air to dry it out. . On a positive note, im 8 months post recovery , eating and drinking normally, taste back, saliva glands working about 70 percent and weight slowly picking up after losing 4 stone. Best wishes to you both and anybody reading this, it does get better . Debbie x

Hiya and Ty for your input. I want to know EVERYTHING and hubby very little. I nursed my Mum with cancer (completely different, super rare, super aggressive, no cure) and having to wait for a pharmacy etc when your loved one is in pain is hideous. I’ll have every potion and lotion available from day one