gavin

Thanks everyone. It was good to get this appointment over with this week. It sort of feels like a great weight has been lifted from our shoulders just now and we can get back to getting on with stuff again. I think lately I have been worrying too much about the future and maybe need to focus more on the present. We dont know for certain what lies ahead but we will deal with what may lie ahead if and when it happens.

I hope we can get the caravan sorted out soon so that will be one less thing to worry about. Like Kris points out, if my parents can treat it as a holiday rather than just somewhere to stay temporarily whilst building work is carried out then it will be a good break from their day to day life. They havent had a holiday in years so that will be good for them and its my dads 65th in July so hopefully they will be away for that. He wants to go up in a hot air balloon and there is no way in the world mum will go with him so I will go with him. Dads Macmillan nurse has some local caravan park details so she is bringing them round tomorrow when she comes to visit.

Jan, my dad only had the one treatment and that was back in August. If I remember correctly at the time, we were told it would only be done once. That is good to hear that your husband has had it twice and also that you spoke to someone who has had it 11 times. This is something that I will be discussing with dads specialist at the next meeting as it may be an option for further treatment for my dad if required. From what I have read, PDT is still quite experimental as a treatment for CC so it’s good to hear that others outside the UK are having it and more than just one time. As your husband is having the PDT every 3 months, is/was he very sensitive to direct light and sunlight and for how long? Also if I may ask, how long did your husband have to wait to have the laser treatment once the Photofrin was injected? My dad had to wait 48 hours from injection to treatment. After the treatment, he was very sensitive to all types of light and had to cover his, skin, eyes and face by wearing a wide brimmed hat when he was outside for a few months. I hope this treatment is working for your husband and I will keep my fingers crossed for it’s success.

Marion, we never asked about the reason for the recent jaundice and darkened urine. To be honest, we were just so relieved to hear that it had gone, and that news, combined with dads doctors enthusiasm for his overall progress took my mind away from asking questions. What I am going to do before the next appointment is make a list of any questions we have so that we dont forget anything to ask him. I’m going to keep a list of things that may arise over the next 3 months so we are better prepared next time.

Tess, I keep saying to my mum that at least they are going to get a new kitchen and bathroom out of this when everything is all done, and they so do need a new kitchen! Their kitchen is tiny and full of badly fitting odd shaped units from the 1980’s! It’s a bit of a hard sell to them right now, but once they have a caravan sorted out and get away then it will be easier to deal with, especially if it’s sunny!

Many thanks once again to everyone for their kind words and support. My best wishes to you all.

Gavin

Hi Wendy,

It’s good to hear from you again. I’m glad that found everyone’s advice helpful. Everyone here is really friendly and helpful so please dont be afriad to ask any questions. I guess the only stupid question is the one that isnt asked!

Considering everything that is happening, my mum and dads mood is sort of mixed I guess. The building work was due to start this week but has been delayed due to further damage appearing in the ouitside wall in their block of flats which will affect the work needed to be done in their flat. They will probably have to move out of their flat into a hotel while the work is carried out due to the kitchen and bathroom having to be totally ripped out and replaced. The walls will alos need to be dried out with de-humidifiers for a few days even before it can be replastered. They will not be able to cope with all the dust due to their illnesses so need to move out. They cant come to mine to stay as I live 3 floors up and they cant manage the stairs. All in all, this is turning into a complete nightmare! But all we can do right now is get on with it.

Dads mood is pretty good. Yesterday I took him up to day care at the local Macmillan centre, he now goes there every Tuesday for the day and he loves it! He gets tea and toast as soon as he gets there and a 3 course dinner so he’s pleased! It sort of like a group where cancer patients go for the day for activities and to meet others in the same situation. They can get all sorts of stuff like reflexology, reikie sessions, arts and crafts and games, yesterday they were all playing scrabble and dad got another reflexology session, he loves that. It is staffed with specialist nurses and volunteers and is very informal. He also got a blood test done and they will be in touch if need be today.

Has your mum been offered the services of a Macmillan nurse yet? My dad was offered one when he was in hospital for the second time last year and she has been a god send to my parents. She comes to visit us when ever we want at home and is extremely helpful in so many ways, not only for medical matters but for other situations that might arise over time.

Thanks for the link you gave on the microwave treatment, it looks really interesting and hopefull for those who undertake it. Radiation treatment was ruled out along with surgery for my dad due to the location of his tumour, so PDT was offered.

As to the PDT, my dad never asked how long it would extent his life for. I dont think he really wanted to ask that question but I can understand why you want to know that. My dads attitude was that his specialist recommend the treatment so he wanted to go for it straight away. You say it sounds like a tough therapy to endure, but I guess when I compare what my dad went through to what I read here from people who have had chemo, it doesnt sound so bad. The biggest fright my dad got was when he saw the size of the syringe that the Photofrin was in. Not only that, but there was 2 of them! He said he thought about jumping out of the window to escape when he saw them! But they were injected through the valve type thing he already had in the back of his hand so he said it was painless. This was done 48 hours before he underwent the laser treatment so that the Photofrin could spread through the body. Although the Photofrin spread throughout his whole body, most of it was to amass in the cancerous cells which were then zapped as it were with the laser. The laser procedure was done in the same way in which the stent was inserteted and was under some type of anaesthetic. My Dad was deemed suitable for this treatment as the laser was able to directly attack the tumour and would therefore not cause any other damage to the surrounding area. The procedure itself was painless and dad could not remember a thing.

The biggest side affect of the treatment was that his skin was extremely light sensitive for a few months afterwards. The rest of his time in the hospital was spent in his room with the blinds drawn and the lights off. It sounds bad when I put it like that, but it really wasnt as bad as it sounds. he had to stay away from direct sunlight at first hence the blinds being drawn and the lights kept off. When he came out his room for a shower, all the lights in the ward had to be switched off and the large blinds on the main windows also had to be drawn. Once he left the hospital, he had to keep pretty much all his skin covered when he went outside, really dark sunglasses, a wide brimmed hat and gloves. This went on for a while and eventually he could go out without the gloves, then the gloves and hat and eventually with no gloves, hat or glasses. Again, it probably sounds worse reading it than what it really is. He only found it a bit of a hassle remembering to cover up, but he got used to it. as I said before, anything specific you can think of to ask regarding this then ask away.

Tess and Lainy have, as always, given you some great advice and support. All I know about chemo is what I have read on this site from people who have and are undertaking it. I really hope your mum can get referred to a specialist this week so that you can investigate further treatment of some sort. I would imagine the results of your mums scans and stuff should be stored electronically so should be able to be transfered over the NHS intranet to whoever needs to see them quickly.

As to the calcium in your mums blood. If you use the search function on this site then you can see if others have experienced this and posted anything about it. Does your mum still have the itching with the jaundice?

As far as you and your mum wanting to get back into her garden, that is not a ridiculous thought at all. I agree with Tess, hope is never ridiculous. My mum and dad also enjoy sitting outside relaxing and enjoying the simple things in life when they can. I hope you can keep us up to date with all that is happening.

I wish you all the very best.

Gavin