To celebrate the first blog of 2015, here are two posts for the price of one - the first a message from Steve, the second an update from me.
Steve's message
Happy New Year!
Looks like it's my turn to write something again, so I will start by thanking you all for your good wishes, it is very humbling to see how many of you care about me.
After a really low point approaching the end of the drug trial about six weeks ago, I am now feeling much more positive: my appetite is back, I've gained about three kilos since then, my hair has started to re-grow and I'm particularly pleased to have eyebrows again, they were a big psychological loss. My energy levels are still lower than I would like, but higher than they were, and I still feel tired from time to time, but, all in all, I'm feeling much more like myself.
Planning ahead still remains difficult, as it has been for the last five and a half years, but we still look to the future taking it one day at a time. And I'm pleased to find I'm still here!
And an update from me
Today was the first hospital appointment of 2015 in the medical oncology clinic - a follow-up to Steve's radiotherapy treatment in December.
Dr Rebecca examined Steve and confirmed our thoughts that the large lump on his chest has shrunk, as had the smaller one near his liver (which we had all but forgotten about). She was pleased that Steve had no noticeable side effects from treatment other than tiredness. It seems that this has peaked, but is likely to take some months before Steve fully recovers from radiotherapy fatigue.
The good news is that radiotherapy treatment on the scale Steve received in December 2014 is likely to be effective for at least a year. Should the external tumours begin to grow again, he can still have one more round of treatment to knock them back.
For this reason, she didn't think there was any need to make another appointment to attend the clinic unless Steve is worried about something. His file is marked "SoS" to ensure he would get an urgent appointment with the medical oncology team should the need arise. He has a similar "SoS" tag with the clinical oncology team, should he feel fit enough and decide he wants to take part in another clinical trial.
She also asked about our meeting with the Palliative Care Nurse in the hospice, and was pleased to hear that this had also been productive in terms of medication being prescribed to help Steve's gut processed food more quickly, along with the return of his appetite and weight gain (now 57 kilos, two kilos more that his last recorded hospital weight).
However, she also used the phrase that treatment now was about maintaining a good "quality of life" and there was no mention of resuming the three monthly assessments which Steve has had regularly since diagnosis in June 2009.
We had gone into the meeting determined not to leave until we knew where we were going on from here; neither of us felt comfortable with the idea of being cut adrift from regular check ups. At this stage, we would prefer to face "scanxiety" in order to know and prepare ourselves for what's happening inside his body, rather than not know and be caught on the back foot as the disease progresses.
Besides which, we will try keep up-to date-with current research on mesothelioma and early phase clinical trials via Google alerts and the meso community on Facebook.....If we stay in the three monthly assessment system, it gives us a chance to follow up and ask questions about promising research such as that carried out at the Royal Marsden, or perhaps request a referral to a specialist mesothelioma centre like the ones in London and Leicester.
For the time being however, Steve would rather carry on as he is - recuperating from the side effects of the last drug trial and the radiotherapy fatigue with rest, and slowly but steadily regaining weight through diet.
Perhaps we are putting our heads in the sand, thinking that a "small number of months" prognosis in December will stretch far enough into the future to justify making a follow up appointment for three months time, but we asked for one anyway and Dr Rebecca was happy to make the request.
So that's where we are now, and that's the plan for the next few months: rest, recuperation, relaxation, and regaining weight. Quite how we are going to achieve all that along with all the other (more exciting/more productive) things we would like to do to enjoy a good quality of life remains to be seen!
Big hugs as always to all the meso warriors around the world, especially to long term survivor Lou in Australia who is now on weekly visits to her oncologist after chemo failed to stop tumour and fluid activity (how different the approach is in Oz - when things go wrong there, they step up the frequency of visits...in the UK, you have to ask for appointments....) and to our own amazing Mavis, who is worried that the immunotherapy trial drug which is working so well on her meso tumour may be damaging her one remaining kidney.
Good luck to all those who are walking 100 steps to raise money for Mesothelioma Research as part of the Meso 100 campaign, where you are invited to donate 100 pennies for 100 steps. Please click the link to find out more!
Last but not least, many thanks to all those who lit candles for Meso Warriors past and present. It helps remind the Mesothelioma Community that we are not alone xx
Steve's message
Happy New Year!
Looks like it's my turn to write something again, so I will start by thanking you all for your good wishes, it is very humbling to see how many of you care about me.
After a really low point approaching the end of the drug trial about six weeks ago, I am now feeling much more positive: my appetite is back, I've gained about three kilos since then, my hair has started to re-grow and I'm particularly pleased to have eyebrows again, they were a big psychological loss. My energy levels are still lower than I would like, but higher than they were, and I still feel tired from time to time, but, all in all, I'm feeling much more like myself.
Planning ahead still remains difficult, as it has been for the last five and a half years, but we still look to the future taking it one day at a time. And I'm pleased to find I'm still here!
And an update from me
Today was the first hospital appointment of 2015 in the medical oncology clinic - a follow-up to Steve's radiotherapy treatment in December.
Dr Rebecca examined Steve and confirmed our thoughts that the large lump on his chest has shrunk, as had the smaller one near his liver (which we had all but forgotten about). She was pleased that Steve had no noticeable side effects from treatment other than tiredness. It seems that this has peaked, but is likely to take some months before Steve fully recovers from radiotherapy fatigue.
The good news is that radiotherapy treatment on the scale Steve received in December 2014 is likely to be effective for at least a year. Should the external tumours begin to grow again, he can still have one more round of treatment to knock them back.
For this reason, she didn't think there was any need to make another appointment to attend the clinic unless Steve is worried about something. His file is marked "SoS" to ensure he would get an urgent appointment with the medical oncology team should the need arise. He has a similar "SoS" tag with the clinical oncology team, should he feel fit enough and decide he wants to take part in another clinical trial.
She also asked about our meeting with the Palliative Care Nurse in the hospice, and was pleased to hear that this had also been productive in terms of medication being prescribed to help Steve's gut processed food more quickly, along with the return of his appetite and weight gain (now 57 kilos, two kilos more that his last recorded hospital weight).
However, she also used the phrase that treatment now was about maintaining a good "quality of life" and there was no mention of resuming the three monthly assessments which Steve has had regularly since diagnosis in June 2009.
We had gone into the meeting determined not to leave until we knew where we were going on from here; neither of us felt comfortable with the idea of being cut adrift from regular check ups. At this stage, we would prefer to face "scanxiety" in order to know and prepare ourselves for what's happening inside his body, rather than not know and be caught on the back foot as the disease progresses.
Besides which, we will try keep up-to date-with current research on mesothelioma and early phase clinical trials via Google alerts and the meso community on Facebook.....If we stay in the three monthly assessment system, it gives us a chance to follow up and ask questions about promising research such as that carried out at the Royal Marsden, or perhaps request a referral to a specialist mesothelioma centre like the ones in London and Leicester.
For the time being however, Steve would rather carry on as he is - recuperating from the side effects of the last drug trial and the radiotherapy fatigue with rest, and slowly but steadily regaining weight through diet.
Perhaps we are putting our heads in the sand, thinking that a "small number of months" prognosis in December will stretch far enough into the future to justify making a follow up appointment for three months time, but we asked for one anyway and Dr Rebecca was happy to make the request.
So that's where we are now, and that's the plan for the next few months: rest, recuperation, relaxation, and regaining weight. Quite how we are going to achieve all that along with all the other (more exciting/more productive) things we would like to do to enjoy a good quality of life remains to be seen!
Big hugs as always to all the meso warriors around the world, especially to long term survivor Lou in Australia who is now on weekly visits to her oncologist after chemo failed to stop tumour and fluid activity (how different the approach is in Oz - when things go wrong there, they step up the frequency of visits...in the UK, you have to ask for appointments....) and to our own amazing Mavis, who is worried that the immunotherapy trial drug which is working so well on her meso tumour may be damaging her one remaining kidney.
Good luck to all those who are walking 100 steps to raise money for Mesothelioma Research as part of the Meso 100 campaign, where you are invited to donate 100 pennies for 100 steps. Please click the link to find out more!
Last but not least, many thanks to all those who lit candles for Meso Warriors past and present. It helps remind the Mesothelioma Community that we are not alone xx
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