It's been some time again, for which I apologise, but life has really taken some dramatic and devastating twists and turns. Too many to mention here and too painful to discuss, but needless to say my contingency planning came into force mid June and life has been cruel ever since. It really does make you wonder how much one person can really take.
On my Lymphoma journey more checkups have been and gone and my latest didn't go quite as well as hoped with signs of the onset of tissue damage now to my organs. My medical team have become part of my extended family and whom I trust with my life, quite literally.
Some of the more dramatic events show glimmers of resolution in the not too distant future and once those settle I have some significant changes of my own planned and cannot wait for that moment to come when I can put them into practice. Oh how I intend to relish that day.
About Me
- About Me
- My name is Samantha, Sammy to many of my family, Sam to my friends. My blog describes the journey I have undertaken so far and the journey I continue to make having been diagnosed with Follicular Non-Hodgkin Lymphoma Stage 4 in December 2009. With the exception of surgery at point of diagnosis I have been actively monitored under a "watch and wait" approach and achieved 5 years without treatment and monitoring only last December. My prognosis is approximately 10 years but for every year we watched and waited I have felt positive that this would be extending that prognosis. I am very happily married to Roy and celebrated our 10th wedding anniversary last October and we have a beautiful 9-year old son Callum. My Step-Daughter, 20-year old Hayley who lived with us is now at University. Our house is awash with my beloved pets, our 2 Cavalier King Charles Spaniels, "Amber" and "Saffy", "Caboodle" the cat and "Elliott" the Rex rabbit. The opinions on this blog are my own and based on my personal experience.
Tuesday 10 August 2010
Monday 7 June 2010
It's Been a While
....since I wrote my last blog, that's not due to any adverse situation with the Lymphoma, although I have continued to be plagued with viruses and infections continuously since my last checkup 2 months ago, it's moreso what else is going on with my family life at present
It's not for me to go into here, those closest to me know to what I am referring, but what is happening right now has provided me a further wake up call and Lymphoma really isn't the end of the world. By the middle of June my life may well and truly be turned upside down or may finally be closure to what has been one of the worst twelve months of my life.
My family has been so tested this past year, with some truly horrific and traumatic situations to deal with, and whilst I cannot speak for all of them, personally I'm absolutely exhausted. Life's become a battle. I thought it would be the Lymphoma that would cause that and I'm sure there's an impact somewhere, but trauma and seriously high stress have further put life into perspective and drained me of what I had left.
I have had to make some tough decisions and contingency planning that may or may not come into force at the end of this month. I have had to re-evaluate my personal circumstances and things will be changing in the short term.
On a more positive note I had a further checkup last week. All was fine. Lenny continues to lie in waiting, with no sign of tumour growth or further spread. I will return in a further 2 months for my next checkup and thorough blood tests at my next visit. So enjoy the summer Lenny, and don't drop by too soon.
It's not for me to go into here, those closest to me know to what I am referring, but what is happening right now has provided me a further wake up call and Lymphoma really isn't the end of the world. By the middle of June my life may well and truly be turned upside down or may finally be closure to what has been one of the worst twelve months of my life.
My family has been so tested this past year, with some truly horrific and traumatic situations to deal with, and whilst I cannot speak for all of them, personally I'm absolutely exhausted. Life's become a battle. I thought it would be the Lymphoma that would cause that and I'm sure there's an impact somewhere, but trauma and seriously high stress have further put life into perspective and drained me of what I had left.
I have had to make some tough decisions and contingency planning that may or may not come into force at the end of this month. I have had to re-evaluate my personal circumstances and things will be changing in the short term.
On a more positive note I had a further checkup last week. All was fine. Lenny continues to lie in waiting, with no sign of tumour growth or further spread. I will return in a further 2 months for my next checkup and thorough blood tests at my next visit. So enjoy the summer Lenny, and don't drop by too soon.
Tuesday 11 May 2010
Plodding Along....
That's exactly how I feel, life is just bumbling along.
It will be 5 months since I was diagnosed this Friday. I cannot quite believe where the time has gone, but in many respects it also feels like years rather than months.
I'm having yet another period of infection after infection, with the latest throat infection and virus ongoing for almost 2 weeks now but this time with temperatures at fever pitch. But today it feels like it has eased slightly and that I might be on the road to recovery, and at least I have something similar to a voice again today.
Life presents another major hurdle next week. Not something I am going to outline in this blog but for the few that I have spoken to about it they know what I am referring to. I'm sure life generally will feel much easier to deal with once that has been put out to closure.
My reflexology continues to go better than expected, to the point I rather enjoy the appointments now and the Hospice is a very calm and peaceful place with lovely staff. "M" was pleased with the receipt of 6 fresh eggs this week and may perhaps persuade her to obtain some hens of her own for her allotment.
"M" did restate (as she has done a number of times now) that I clearly struggle to relax and I now have another relaxation technique to try with some additional natural therapy suggestions to help boost my immune system.
Lenny Lymphoma continues to make its presence felt with the uncomfortable lump in my neck ever present and a suspect lump having now appeared under my armpit which I continue to monitor closely. My Medical Team have offered to bring my next appointment forward if it doesn't subside, but for now I'm just keeping an eye on things as a few weeks will make absolutely no difference.
So I will just continue to plod along, as I don't have much energy for anything else. Roll on 2 weeks from now when I hope to have eliminated yet another of life's challenges to allow for a smoother path ahead.
It will be 5 months since I was diagnosed this Friday. I cannot quite believe where the time has gone, but in many respects it also feels like years rather than months.
I'm having yet another period of infection after infection, with the latest throat infection and virus ongoing for almost 2 weeks now but this time with temperatures at fever pitch. But today it feels like it has eased slightly and that I might be on the road to recovery, and at least I have something similar to a voice again today.
Life presents another major hurdle next week. Not something I am going to outline in this blog but for the few that I have spoken to about it they know what I am referring to. I'm sure life generally will feel much easier to deal with once that has been put out to closure.
My reflexology continues to go better than expected, to the point I rather enjoy the appointments now and the Hospice is a very calm and peaceful place with lovely staff. "M" was pleased with the receipt of 6 fresh eggs this week and may perhaps persuade her to obtain some hens of her own for her allotment.
"M" did restate (as she has done a number of times now) that I clearly struggle to relax and I now have another relaxation technique to try with some additional natural therapy suggestions to help boost my immune system.
Lenny Lymphoma continues to make its presence felt with the uncomfortable lump in my neck ever present and a suspect lump having now appeared under my armpit which I continue to monitor closely. My Medical Team have offered to bring my next appointment forward if it doesn't subside, but for now I'm just keeping an eye on things as a few weeks will make absolutely no difference.
So I will just continue to plod along, as I don't have much energy for anything else. Roll on 2 weeks from now when I hope to have eliminated yet another of life's challenges to allow for a smoother path ahead.
Friday 23 April 2010
Bumps Galore down the Supermarket Aisles
There are many aspects of life that change when cancer is diagnosed, and I believe I am familiar with most of them now.
People's reactions can cause surprise, alarm and others provide immense support and reassurance. Some turn away, lacking the ability to find the right words to string together a worthy conversation they feel confident enough to hold, whilst all I needed was a hug. GP's look at you with sadness (and in my case with a sense of guilt) as if it's all too late. Specialist Medical Teams thrive on optimism and hang on every glimmer of hope. Employers handle with caution and ensure they are following process and protocol to the letter.
The Government deems me now worthy of the badge “disabled”, although I do not believe what I have at this moment in time presents any disability and presents only a feeling of fraudulency. But on the other hand, such a “tag” provides protection and comfort that I will be taken care of both in terms of benefits and discrimination, as appropriate.
Cancer has snatched away many options, but I still have many to choose from. My life remains almost normal, with the occasional appearance from Lenny Lymphoma both physically and mentally but otherwise he allows me to continue as before.
I still have choices, I am still able to make my own decisions, I still have my own free will.
The hardest decision to date has been that of additional children. It needn't be a secret anymore that back in September 2009, after the 'all clear' from my GP on the lump in my groin during my first visit, my husband and I had decided it was the right time to try for a second child. A son or daughter for us, a brother or sister and a playmate for Callum.
Our views on additional children have become slightly uneven since that time. No Medical Team will advise that to try for further children after such a diagnosis is the right or wrong thing to do, but they air on the side of caution, present examples of similar situations and outcomes, but continue to provision all the support required if that path should be chosen.
I always had a personal goal of 40 for a second child. If that age was reached and/or past without a second child then for me, it was as nature intended, but as of December my deadline was prematurely ended; for my husband it is a temporary plot on the pregnancy landscape that should be revisited in 12 months time (6 months before my 40th birthday). My Medical Team support our decision either way, but in my heart of hearts my decision has already been made.
My Father fell to cancer when I was a little over 2 years old and I have experienced a single parent family first hand. My Mum did the most amazing job and became both parents to me, but if I had a choice, I would choose to have both parents every time.
I hope to have many many years of trouble-free illness, but there is an absolute risk I cannot ignore and that's to make a conscious decision to present that possibility to a 4 year old boy and any future children and that is not a choice I am willing to make.
Most days I am able to put this decision to one side. I know of friends and colleagues that are “with child” and I am amongst the happiest for them, but there are other days when I wish not to be reminded of the difficult decisions we have had to make. I counted 12 pregnant ladies in the local Supermarket this evening, it was truly bumps galore on special offer!
They all looked beautiful and radiant and I wish them all the very best. I only hope that one day my feelings of anguish over my own decision will subside and allow me to be at peace.
People's reactions can cause surprise, alarm and others provide immense support and reassurance. Some turn away, lacking the ability to find the right words to string together a worthy conversation they feel confident enough to hold, whilst all I needed was a hug. GP's look at you with sadness (and in my case with a sense of guilt) as if it's all too late. Specialist Medical Teams thrive on optimism and hang on every glimmer of hope. Employers handle with caution and ensure they are following process and protocol to the letter.
The Government deems me now worthy of the badge “disabled”, although I do not believe what I have at this moment in time presents any disability and presents only a feeling of fraudulency. But on the other hand, such a “tag” provides protection and comfort that I will be taken care of both in terms of benefits and discrimination, as appropriate.
Cancer has snatched away many options, but I still have many to choose from. My life remains almost normal, with the occasional appearance from Lenny Lymphoma both physically and mentally but otherwise he allows me to continue as before.
I still have choices, I am still able to make my own decisions, I still have my own free will.
The hardest decision to date has been that of additional children. It needn't be a secret anymore that back in September 2009, after the 'all clear' from my GP on the lump in my groin during my first visit, my husband and I had decided it was the right time to try for a second child. A son or daughter for us, a brother or sister and a playmate for Callum.
Our views on additional children have become slightly uneven since that time. No Medical Team will advise that to try for further children after such a diagnosis is the right or wrong thing to do, but they air on the side of caution, present examples of similar situations and outcomes, but continue to provision all the support required if that path should be chosen.
I always had a personal goal of 40 for a second child. If that age was reached and/or past without a second child then for me, it was as nature intended, but as of December my deadline was prematurely ended; for my husband it is a temporary plot on the pregnancy landscape that should be revisited in 12 months time (6 months before my 40th birthday). My Medical Team support our decision either way, but in my heart of hearts my decision has already been made.
My Father fell to cancer when I was a little over 2 years old and I have experienced a single parent family first hand. My Mum did the most amazing job and became both parents to me, but if I had a choice, I would choose to have both parents every time.
I hope to have many many years of trouble-free illness, but there is an absolute risk I cannot ignore and that's to make a conscious decision to present that possibility to a 4 year old boy and any future children and that is not a choice I am willing to make.
Most days I am able to put this decision to one side. I know of friends and colleagues that are “with child” and I am amongst the happiest for them, but there are other days when I wish not to be reminded of the difficult decisions we have had to make. I counted 12 pregnant ladies in the local Supermarket this evening, it was truly bumps galore on special offer!
They all looked beautiful and radiant and I wish them all the very best. I only hope that one day my feelings of anguish over my own decision will subside and allow me to be at peace.
Monday 19 April 2010
Break Away
Had a nice week in Devon, not far from Dartmouth, and now back to the reality of e-mail, conference calls and the likes.
The weather treated us kindly so we where able to get out and explore most days, but unfortunately you have to return the humdrum at some point.
The weekend has been spent with run-of-the-mill housework catching up and yesterday a lovely day in the garden. The chickens now have their own luxury lawned extension so are very content little hens and we have commenced the reclaim of our own piece of garden, and I'm hoping the weather will hold its own today to enable us to use the new BBQ this evening.
My Race for Life training commences in real earnest this week. It's a little late due to health issues but the training plan is in place and I'm ready for the starting blocks.
I'm still incredibly tired and lack real energy but am optimistic that the additional exercise may produce some reserves.
The weather treated us kindly so we where able to get out and explore most days, but unfortunately you have to return the humdrum at some point.
The weekend has been spent with run-of-the-mill housework catching up and yesterday a lovely day in the garden. The chickens now have their own luxury lawned extension so are very content little hens and we have commenced the reclaim of our own piece of garden, and I'm hoping the weather will hold its own today to enable us to use the new BBQ this evening.
My Race for Life training commences in real earnest this week. It's a little late due to health issues but the training plan is in place and I'm ready for the starting blocks.
I'm still incredibly tired and lack real energy but am optimistic that the additional exercise may produce some reserves.
Wednesday 7 April 2010
The Results Are In
Check up again today and all was fine. Blood results where good and no signs of further growth or spread in the last 6 weeks. I was so relieved as I had a bad feeling about today, but I was proved wrong for which I thank my blessings and all those that have been sending positive thoughts and prayers.
I have been reprieved for 2 months, so watch out 9 June, here I come to kick your butt once more.
I have been reprieved for 2 months, so watch out 9 June, here I come to kick your butt once more.
Monday 5 April 2010
A Mixed Week
It's been a mixed week.
I caught some kind of bug the day after my complimentary therapy, which at the time I thought may have been some form of reaction, but I soon realised it was a plain and simple virus. Fortunately it only lasted a couple of days and before I knew it I was back on my feet with renewed vigour.
Since then we have had the long Easter weekend which has been spent extending the chicken's palatial empire which was completed today, courtesy of my DIY clever husband, inclusive of their very own lawn, in an attempt to retake ownership of a lawn and garden fit for human habitation. It remains 'work in progress' but we have made a great start and the garden has become livable and tidy once more and the lawn will be re-seeded this week. However as I sit here and type I truly am “stiff as a board”.
Our son had a lovely Saturday afternoon with his best pal and we had lunch with the In-Laws today, followed by a short walk in the sun. I do like how a little sunshine warmth accompanied by the lighter evenings can really uplift your spirits.
The week was then topped off by the receipt of my new engagement and eternity rings. My diamonds have been reset and redesigned into 2 new beautiful rings and my hand feels complete once again. A new wedding band has now been commissioned to complete the set. I'm a lucky girl!
My 4-year old Son is now officially richer than me, as family elected to give cash rather than chocolate as Easter gifts. His numerous nursery girl-friends provided the chocolate fix he requires, despite his obvious disappointment that people forget he doesn't do “brown” chocolate – only white is acceptable, of which he didn't get many of his preferred option, but enough to keep him in white chocolate for a few days. Whilst on the other hand, my husband is very content with his role to remove all trace of the "brown" chocolate as quickly as possible. I must admit to having my own eye on the mini-eggs.
This week I face another 6-weekly check-up and was back at Pathology last Thursday for my routine bloods.
Life truly runs a 6-week cycle; I cannot look beyond that, and by week 5, my apprehension makes its devilish reappearance.
For a few weeks my fatigue seemed to ease, but the last 2 weeks it has returned and not a day passes without the 3pm “slump” and the 3am "wake". I feel old beyond my years as I feel drained of the energy expected of a 38 year old.
At my last appointment my potassium levels where low so I'm hopeful that has been remedied by diet, and was quite amused by how my husband and In-Laws tried to, and successfully, persuaded me to allow 2 brussel sprouts to pass my lips today on the basis that they are potassium and iron rich.
I am however something of a little nervous that all may not be as well with my platelet count. It is not just the tiredness again, but my ability to bruise with such ease having returned with avengeance; as can be demonstrated by the 8cm bruise down my left shin courtesy of a mishap with the ensuite toilet, and the mysterious markings that seem to have applied themselves elsewhere. My rash continues to present itself with the upmost pride. In addition my “bleeder” reputation during blood tests failed to disappoint again on Thursday and by the time I was back home my “x marks the blood test spot” dressing was hanging on for dear life as my arm was heavily blood stained. I have never seen anything quite like it and it made me feel a little nauseous.
So here's to Wednesday. May you treat me gently and offer positive news that will allow me a further 6 weeks of perspective normality.
I caught some kind of bug the day after my complimentary therapy, which at the time I thought may have been some form of reaction, but I soon realised it was a plain and simple virus. Fortunately it only lasted a couple of days and before I knew it I was back on my feet with renewed vigour.
Since then we have had the long Easter weekend which has been spent extending the chicken's palatial empire which was completed today, courtesy of my DIY clever husband, inclusive of their very own lawn, in an attempt to retake ownership of a lawn and garden fit for human habitation. It remains 'work in progress' but we have made a great start and the garden has become livable and tidy once more and the lawn will be re-seeded this week. However as I sit here and type I truly am “stiff as a board”.
Our son had a lovely Saturday afternoon with his best pal and we had lunch with the In-Laws today, followed by a short walk in the sun. I do like how a little sunshine warmth accompanied by the lighter evenings can really uplift your spirits.
The week was then topped off by the receipt of my new engagement and eternity rings. My diamonds have been reset and redesigned into 2 new beautiful rings and my hand feels complete once again. A new wedding band has now been commissioned to complete the set. I'm a lucky girl!
My 4-year old Son is now officially richer than me, as family elected to give cash rather than chocolate as Easter gifts. His numerous nursery girl-friends provided the chocolate fix he requires, despite his obvious disappointment that people forget he doesn't do “brown” chocolate – only white is acceptable, of which he didn't get many of his preferred option, but enough to keep him in white chocolate for a few days. Whilst on the other hand, my husband is very content with his role to remove all trace of the "brown" chocolate as quickly as possible. I must admit to having my own eye on the mini-eggs.
This week I face another 6-weekly check-up and was back at Pathology last Thursday for my routine bloods.
Life truly runs a 6-week cycle; I cannot look beyond that, and by week 5, my apprehension makes its devilish reappearance.
For a few weeks my fatigue seemed to ease, but the last 2 weeks it has returned and not a day passes without the 3pm “slump” and the 3am "wake". I feel old beyond my years as I feel drained of the energy expected of a 38 year old.
At my last appointment my potassium levels where low so I'm hopeful that has been remedied by diet, and was quite amused by how my husband and In-Laws tried to, and successfully, persuaded me to allow 2 brussel sprouts to pass my lips today on the basis that they are potassium and iron rich.
I am however something of a little nervous that all may not be as well with my platelet count. It is not just the tiredness again, but my ability to bruise with such ease having returned with avengeance; as can be demonstrated by the 8cm bruise down my left shin courtesy of a mishap with the ensuite toilet, and the mysterious markings that seem to have applied themselves elsewhere. My rash continues to present itself with the upmost pride. In addition my “bleeder” reputation during blood tests failed to disappoint again on Thursday and by the time I was back home my “x marks the blood test spot” dressing was hanging on for dear life as my arm was heavily blood stained. I have never seen anything quite like it and it made me feel a little nauseous.
So here's to Wednesday. May you treat me gently and offer positive news that will allow me a further 6 weeks of perspective normality.
Monday 29 March 2010
I Can't Stand Feet!
Well today I had the day off and had my first appointment for complimentary therapy at the Hospice.
I was very dubious about going to the Hospice as I had expected to see lots of very poorly people, and the use of the word Hospice sounds so final, but the Turner Centre was a separate building to the rest of the premises, so I was almost segmented and guarded from seeing the reality of what the Hospice stands for.
I did meet a very nice lady who was clearly very unwell and it does remind you of the seriousness of the situation; she had a great sense of humour particularly when a member of staff forgot to put sugar in her tea, as her volunteer driver sat quietly by her side.
I was very impressed with St Michaels, the staff were lovely and the surroundings were very nice and calming.
Off I went to the treatment room for reflexology. I have a natural affliction for feet but I gave it a go, with every muscle tensed I lay down ready to laugh out loud as I am so ticklish but actually it wasn't like that at all. Infact it was very nice indeed.
I now have an aromatherapy sniff stick (!) to help me relax whenever I need it and after the treatment was completed I was escorted back to reception for a nice cup of tea and as long as I needed to drift back to reality before making my next appointment. And that I did as I watched the rain bounce on the ground outside.
St Michaels Hospice do an absolutely fantastic job, of that I have no doubt. Just one visit made me realise just how important the pallative care offerings they provide really are and with only 30% of their funds provided by the Primary Care Trust and the remaining £1.8 million required to continue to run the Hospice per year being raised by charitable donations their achievements are substantial and it's a Charity I would be honoured to support.
I was very dubious about going to the Hospice as I had expected to see lots of very poorly people, and the use of the word Hospice sounds so final, but the Turner Centre was a separate building to the rest of the premises, so I was almost segmented and guarded from seeing the reality of what the Hospice stands for.
I did meet a very nice lady who was clearly very unwell and it does remind you of the seriousness of the situation; she had a great sense of humour particularly when a member of staff forgot to put sugar in her tea, as her volunteer driver sat quietly by her side.
I was very impressed with St Michaels, the staff were lovely and the surroundings were very nice and calming.
Off I went to the treatment room for reflexology. I have a natural affliction for feet but I gave it a go, with every muscle tensed I lay down ready to laugh out loud as I am so ticklish but actually it wasn't like that at all. Infact it was very nice indeed.
I now have an aromatherapy sniff stick (!) to help me relax whenever I need it and after the treatment was completed I was escorted back to reception for a nice cup of tea and as long as I needed to drift back to reality before making my next appointment. And that I did as I watched the rain bounce on the ground outside.
St Michaels Hospice do an absolutely fantastic job, of that I have no doubt. Just one visit made me realise just how important the pallative care offerings they provide really are and with only 30% of their funds provided by the Primary Care Trust and the remaining £1.8 million required to continue to run the Hospice per year being raised by charitable donations their achievements are substantial and it's a Charity I would be honoured to support.
Wednesday 24 March 2010
Similarities of "Biscuit" the Goldfish
When faced with a life threatening condition a number of things change. For me, life has been reprioritised, and as an existing “heart on the sleeve” wearer, I have become even more emotional as has been demonstrated this week as I watched the Boyzone programme about Stephen Gately and Eddie Izzard's incredible marathon of marathons as I sat there quietly with only an occasional sniffle to break the silence. I watched Children's Hospital last night and was in complete awe of those children's fight and courage. If there was ever a demonstration of hope and determination it comes from those beautiful children.
My view of death has also changed. It's something I have always been incredibly scared of, and that hasn't changed. I have had my fair share of dreams of being locked in a coffin alive and hovering above myself lying on a bed as my family are all sat around me saying their final goodbyes. I know I'm not alone on that. As we speak, death is around me, not for myself or a friend or family member but for, (now don't laugh, go with me on this one and all should become clearer); our pet goldfish.
We lost 1 of 4 goldfish last week. It happened very quickly and there wasn't much we could do. As I explained to my 4-year old Son that Jammie had gone to heaven (via the toilet), Callum remains convinced that we will be reunited with Jammie in “Devon” on our holiday in a few weeks time. It's hard to explain the concept of heaven to a 4-year old, especially when he refers to it as a holiday destination!
On Monday, our second goldfish, Biscuit, and one of our oldest at 3.5 years old started to act unwell.
Biscuit, looked and seemed well until then. You would never have known Biscuit was suffering a life threatening condition nor do I know for how long. No obvious markings, and until yesterday, no strange movements. To the onlooker all seemed to be well. All of a sudden Biscuit lost his / her balance, his / her control had gone and Biscuit looked on with a glazed expression, breathless.
I found Biscuit's inability to control his / her balance and his / her abnormal rolling unnaturally distressing yesterday morning and found myself to be first in the queue at opening time at Pets at Home to hear a diagnosis of swim bladder in complete panic. I took the treatment home, but sadly it was too late for Biscuit.
As I lifted Biscuit out of the tank he / she took a breath, was this a breath and a small sign of life or a bodily / chemical reaction when lifted from the water? I do know the answer, but Biscuit remained in his / her tank until I found the courage to accept it was time to take a trip to “Devon”.
Biscuits condition may be similar to mine. You just would never have guessed, until one day it showed itself.
May Biscuit and Jammie RIP in “Devon”.
My view of death has also changed. It's something I have always been incredibly scared of, and that hasn't changed. I have had my fair share of dreams of being locked in a coffin alive and hovering above myself lying on a bed as my family are all sat around me saying their final goodbyes. I know I'm not alone on that. As we speak, death is around me, not for myself or a friend or family member but for, (now don't laugh, go with me on this one and all should become clearer); our pet goldfish.
We lost 1 of 4 goldfish last week. It happened very quickly and there wasn't much we could do. As I explained to my 4-year old Son that Jammie had gone to heaven (via the toilet), Callum remains convinced that we will be reunited with Jammie in “Devon” on our holiday in a few weeks time. It's hard to explain the concept of heaven to a 4-year old, especially when he refers to it as a holiday destination!
On Monday, our second goldfish, Biscuit, and one of our oldest at 3.5 years old started to act unwell.
Biscuit, looked and seemed well until then. You would never have known Biscuit was suffering a life threatening condition nor do I know for how long. No obvious markings, and until yesterday, no strange movements. To the onlooker all seemed to be well. All of a sudden Biscuit lost his / her balance, his / her control had gone and Biscuit looked on with a glazed expression, breathless.
I found Biscuit's inability to control his / her balance and his / her abnormal rolling unnaturally distressing yesterday morning and found myself to be first in the queue at opening time at Pets at Home to hear a diagnosis of swim bladder in complete panic. I took the treatment home, but sadly it was too late for Biscuit.
As I lifted Biscuit out of the tank he / she took a breath, was this a breath and a small sign of life or a bodily / chemical reaction when lifted from the water? I do know the answer, but Biscuit remained in his / her tank until I found the courage to accept it was time to take a trip to “Devon”.
Biscuits condition may be similar to mine. You just would never have guessed, until one day it showed itself.
May Biscuit and Jammie RIP in “Devon”.
Friday 19 March 2010
Time for Change
There comes a time when life has to return to some kind of normality or you are just going to go out of your mind and Lenny Lymphoma will drive you insane - and for me that transition to normality feels like it maybe starting.
This week feels like a turning point. I feel more positive and can see beyond next week. The good days are outweighing the bad.
Registering to participate in Cancer Research UK's Race for Life in June 2010 was the first stepping stone; to give some good back to those vital Organisations who have been helping me; but it was also a diversion, a “feel good” factor.
Counselling from the lovely Ros is starting to help me to understand, to rationalise and to accept the feelings I have.
Continuing to review and absorb information is a powerful tool. If you can understand your condition you find more strength to fight. Knowledge really is power. Some find my constant review of the Web unsettling, but I only take note of information from reputable Organisations; I really do not need horror stories or glimmers of false hope.
I am about to register for a Reiki Healing Course; not only to learn a new skill, but a great opportunity to seek self-relaxation and help those around me; heal the healer as they say.
This evening I have some pampering of my own, with an appointment at my favourite salon for a new hairstyle and colour ready for Spring – thank you R & C; it's a lovely Mothers Day present. As I walked my dogs this lunchtime I also saw the first Daffodils emerging, so Spring really is in the h..air!
I have also become a MacMillan Cancer Voice, using my experience of Cancer to date along with many others to help shape the future of Cancer care and to assist in making life better for everyone affected by Cancer.
I do believe I have started the next stage of my journey; taking back control of this situation.
This week feels like a turning point. I feel more positive and can see beyond next week. The good days are outweighing the bad.
Registering to participate in Cancer Research UK's Race for Life in June 2010 was the first stepping stone; to give some good back to those vital Organisations who have been helping me; but it was also a diversion, a “feel good” factor.
Counselling from the lovely Ros is starting to help me to understand, to rationalise and to accept the feelings I have.
Continuing to review and absorb information is a powerful tool. If you can understand your condition you find more strength to fight. Knowledge really is power. Some find my constant review of the Web unsettling, but I only take note of information from reputable Organisations; I really do not need horror stories or glimmers of false hope.
I am about to register for a Reiki Healing Course; not only to learn a new skill, but a great opportunity to seek self-relaxation and help those around me; heal the healer as they say.
This evening I have some pampering of my own, with an appointment at my favourite salon for a new hairstyle and colour ready for Spring – thank you R & C; it's a lovely Mothers Day present. As I walked my dogs this lunchtime I also saw the first Daffodils emerging, so Spring really is in the h..air!
I have also become a MacMillan Cancer Voice, using my experience of Cancer to date along with many others to help shape the future of Cancer care and to assist in making life better for everyone affected by Cancer.
I do believe I have started the next stage of my journey; taking back control of this situation.
Thursday 18 March 2010
Lymphoma - The Celebrities Cannot Escape Either
I read today that Andy Whitfield, star of "Spartacus - Blood and Sand" has been diagnosed with Non-Hodgkins Lymphoma. I wish him well as he starts his treatment immediately.
When you look around there's a wealth of celebrities that have my condition, some are here to tell the tale, others sadly are not.
To name just a few:
Paul Allen (Co-Founder Microsoft)
Gene Wilder
Jackie Kennedy Onassis
King Hussein of Jordan
Mr T (A Team)
Gabriel Garcia Marquez (Nobel Laureate)
Sir Menzies Campbell (Liberal Democrat)
David Rocastle (English Footballer, most famous for his time at Arsenal)
Anon. Colleague of mine
It's a small World of Lymphoma
When you look around there's a wealth of celebrities that have my condition, some are here to tell the tale, others sadly are not.
To name just a few:
Paul Allen (Co-Founder Microsoft)
Gene Wilder
Jackie Kennedy Onassis
King Hussein of Jordan
Mr T (A Team)
Gabriel Garcia Marquez (Nobel Laureate)
Sir Menzies Campbell (Liberal Democrat)
David Rocastle (English Footballer, most famous for his time at Arsenal)
Anon. Colleague of mine
It's a small World of Lymphoma
Sunday 14 March 2010
Happy Mothers Day
Happy Mothers Day - and what a beautiful sunny day it is.
I love my Mum deeply, more than she realises, we have gone through some "tough" times and now I'm here in this place and I wish I wasn't causing her so much heartache. A child, whatever the age, never expects to place this kind of burden and heartache on their loved ones, life can be so cruel.
For my Mum:
If I could give you diamonds
for each tear you cried for me.
If I could give you sapphires
for each truth you’ve helped me see.
If I could give you rubies
for the heartache that you’ve known
If I could give you pearls
for the wisdom that you’ve shown.
Then you’ll have a treasure, Mum,
that would mount up to the skies
That would almost match
the sparkle in your kind and loving eyes.
But I have no pearls, no diamonds,
As I’m sure you’re well aware
So I’ll give you gifts more precious
My devotion, love and care.
Have a lovely day xxx
I love my Mum deeply, more than she realises, we have gone through some "tough" times and now I'm here in this place and I wish I wasn't causing her so much heartache. A child, whatever the age, never expects to place this kind of burden and heartache on their loved ones, life can be so cruel.
For my Mum:
If I could give you diamonds
for each tear you cried for me.
If I could give you sapphires
for each truth you’ve helped me see.
If I could give you rubies
for the heartache that you’ve known
If I could give you pearls
for the wisdom that you’ve shown.
Then you’ll have a treasure, Mum,
that would mount up to the skies
That would almost match
the sparkle in your kind and loving eyes.
But I have no pearls, no diamonds,
As I’m sure you’re well aware
So I’ll give you gifts more precious
My devotion, love and care.
Have a lovely day xxx
Friday 12 March 2010
The Search for Serenity
Another cancer counselling session has passed and I found I had more to relay this time.
It's been a difficult week emotionally, with some highs and some real lows, some of the worst so far, but I'm starting to understand why. It's a slow process and life feels Jekyll and Hyde. The black and white Sam can no longer predict, no longer control. My analogy to my Counsellor was “it's like someone has pressed the pause button on SkyPlus, you're waiting for something to happen, but no-one presses start or fast forward. Let's rewind this nightmare, but the pause button is well and truly holding it's own”. Life is literally left hanging out on a limb.
But it would seem that those wide range of emotions, of which I have had every single one, are perfectly normal. Shock, disbelief, denial, awkwardness, panic, anger, guilt, frustration, fear, loss of control, terror. These feelings never leave me, but some days they go a little easier on me, and other days they like to offer a hard time. What's normal you ask, I'm not sure, you're definitely asking the wrong person, but I'm reliably informed these feelings are to be expected, they are not wrong and I am entitled to feel each and every one.
I'm not a particularly religious person. I attended Church through my Church of England School and through Girl Guides, weddings, christenings, funerals and so on, but since this journey began I've had an urge to revisit the Church. I have always liked visiting Churches and find them incredibly serene places but I'm not a regular Church goer.
It started at diagnosis with a request to my Husband to buy me a cross pendant for Christmas. No other gifts where important, just the cross. You will see me now bearing this cross most days and if you are a little more attentive you will see I have developed a habit of rubbing it. I now understand this to be comfort. I also realise this urge is a subconscious grasp at finding peace and serenity. So I stopped by at the Hospital Chapel. Not a place I had visited before but I did feel calmer for those few moments and it did permit for a quiet tear in the corner.
A prayer now resides on the prayer board – I haven't asked for a miracle or a cure, merely a helping hand as I continue down this path and as I was leaving I came across this Prayer left by the Chaplain. Particularly apt I thought:
A Dream
One night I had a dream, I dreamed I was walking along the beach with the Lord.
And across the sky flashed scenes of my life.
For each scene I noticed two sets of footprints in the sand,
One belonged to me, and the other to the Lord.
When the last scene of my life flashed before us,
I looked back at the footprints in the sand,
I noticed that many times along the path of life there was only one set of footprints.
I also noticed that it happened at the very lowest and saddest times in my life.
This really bothered me, and I questioned the Lord about it.
Lord, you said that once I decided to follow you
You would walk with me all the way,
But I noticed that during the most troublesome times in my life there is only one set of footprints.
I don't understand why in the times when I needed you most you should leave me.
The Lord replied “My precious, precious child” I love you and would never leave you during the times of trial and suffering.
When you saw only one set of footprints,
It was then I was carrying you.
With sincere thanks to BNHT Chapel and Wessex Cancer Trust
It's been a difficult week emotionally, with some highs and some real lows, some of the worst so far, but I'm starting to understand why. It's a slow process and life feels Jekyll and Hyde. The black and white Sam can no longer predict, no longer control. My analogy to my Counsellor was “it's like someone has pressed the pause button on SkyPlus, you're waiting for something to happen, but no-one presses start or fast forward. Let's rewind this nightmare, but the pause button is well and truly holding it's own”. Life is literally left hanging out on a limb.
But it would seem that those wide range of emotions, of which I have had every single one, are perfectly normal. Shock, disbelief, denial, awkwardness, panic, anger, guilt, frustration, fear, loss of control, terror. These feelings never leave me, but some days they go a little easier on me, and other days they like to offer a hard time. What's normal you ask, I'm not sure, you're definitely asking the wrong person, but I'm reliably informed these feelings are to be expected, they are not wrong and I am entitled to feel each and every one.
I'm not a particularly religious person. I attended Church through my Church of England School and through Girl Guides, weddings, christenings, funerals and so on, but since this journey began I've had an urge to revisit the Church. I have always liked visiting Churches and find them incredibly serene places but I'm not a regular Church goer.
It started at diagnosis with a request to my Husband to buy me a cross pendant for Christmas. No other gifts where important, just the cross. You will see me now bearing this cross most days and if you are a little more attentive you will see I have developed a habit of rubbing it. I now understand this to be comfort. I also realise this urge is a subconscious grasp at finding peace and serenity. So I stopped by at the Hospital Chapel. Not a place I had visited before but I did feel calmer for those few moments and it did permit for a quiet tear in the corner.
A prayer now resides on the prayer board – I haven't asked for a miracle or a cure, merely a helping hand as I continue down this path and as I was leaving I came across this Prayer left by the Chaplain. Particularly apt I thought:
A Dream
One night I had a dream, I dreamed I was walking along the beach with the Lord.
And across the sky flashed scenes of my life.
For each scene I noticed two sets of footprints in the sand,
One belonged to me, and the other to the Lord.
When the last scene of my life flashed before us,
I looked back at the footprints in the sand,
I noticed that many times along the path of life there was only one set of footprints.
I also noticed that it happened at the very lowest and saddest times in my life.
This really bothered me, and I questioned the Lord about it.
Lord, you said that once I decided to follow you
You would walk with me all the way,
But I noticed that during the most troublesome times in my life there is only one set of footprints.
I don't understand why in the times when I needed you most you should leave me.
The Lord replied “My precious, precious child” I love you and would never leave you during the times of trial and suffering.
When you saw only one set of footprints,
It was then I was carrying you.
With sincere thanks to BNHT Chapel and Wessex Cancer Trust
Thursday 11 March 2010
How This Journey Began
My Lymphoma journey began in September 2009.
I discovered a small lump in my left groin area and was sure I had never noticed it before. It took a few days before I saw my GP to have the lump checked. I was told not to worry it was likely just muscle hardening, but if I felt any real discomfort or pain then I should make my way to A & E as it could be a strangulated femoral hernia! Hmm, what options I have.
I put the lump to the back of my mind, and other than an occasional check and becoming convinced it was enlarging, I did nothing further until December.
My Sister came to stay and at this point I was in a little discomfort, mainly because of it's size. She convinced me to get a second opinion which I did a few days later.
It was a Thursday, and a different GP arranged an urgent scan and urgent referral to the Hospital. The lump had trebled in size since my last GP appointment. We intervened with private health cover that same evening and by Monday I was at the Hampshire Clinic for an appointment with a Consultant Surgeon. I just couldn't wait for the NHS.
I came away from that appointment slightly concerned. I needed an MRI which took place the following day and the rest of that week ensued with further tests, CT scans, ECG's and the outcome was surgery to take a closer look.
Tuesday, the day of surgergy came, I went in under general anaesthetic for a biopsy. An hour or so later I came round to find a drain in my leg which seemed odd for a biopsy but I didn't have to wait long.
The Surgeon came to see me and a sizeable tumour had been removed. When pushed, the first ever reference to Lymphoma came and my world immediately somersaulted.
A week later, pathology confirmed the Lymphoma and on 23 December 2009 Follicular Non-Hodgkins Lymphoma was the official diagnosis.
My world now did more than somersault, it turned upside down. Right on top of Christmas. I hadn't done much in the way of shopping as life had gone on hold for the 2 weeks prior however Christmas went to plan and we ensured a good time was had by all. But Lymphoma became and has become my every waking thought and never fails to dissapoint in my dreams.
29 December saw me back in hospital for a bone marrow biopsy - a necessary procedure to help stage and grade the Lymphoma. An unpleasant procedure and a wealth of emotions flowed immediately after.
On 13 January 2010 it was confirmed I had Stage 4 FNHL. The FNHL had reached both of my legs, abdomen, chest and bone marrow.
The next few days and weeks became a blur as I quite honestly struggled to cope. The whole range of emotions overtook my day-to-day life...life stopped. I couldn't look at my Husband and Son without my premature life flashing before my very eyes.
It was agreed that as I was not feeling ill, and as the B symptoms they look out for where not showing themselves, that I would go on a watch and wait approach which I continue to be on now.
Lenny Lymphoma will progress - my Haematologist was very honest in telling me due to the advanced stage I was not curable, but symptoms can be treated to provide a good quality of life.
I spent 2 months away from work and did very little. Most days I sat and stared at the television but "no-one was home". I couldn't speak, I couldn't think.
My first 6-weekly checkup has been and gone recently and the Lymphoma has now reached my neck... we continue to watch and wait. In the meantime I battle with Fatigue.
I have returned to work amongst the uncertainty of organisational change but it focuses my mind on another topic and life must go on.
So here I am, I watch and I wait.
I discovered a small lump in my left groin area and was sure I had never noticed it before. It took a few days before I saw my GP to have the lump checked. I was told not to worry it was likely just muscle hardening, but if I felt any real discomfort or pain then I should make my way to A & E as it could be a strangulated femoral hernia! Hmm, what options I have.
I put the lump to the back of my mind, and other than an occasional check and becoming convinced it was enlarging, I did nothing further until December.
My Sister came to stay and at this point I was in a little discomfort, mainly because of it's size. She convinced me to get a second opinion which I did a few days later.
It was a Thursday, and a different GP arranged an urgent scan and urgent referral to the Hospital. The lump had trebled in size since my last GP appointment. We intervened with private health cover that same evening and by Monday I was at the Hampshire Clinic for an appointment with a Consultant Surgeon. I just couldn't wait for the NHS.
I came away from that appointment slightly concerned. I needed an MRI which took place the following day and the rest of that week ensued with further tests, CT scans, ECG's and the outcome was surgery to take a closer look.
Tuesday, the day of surgergy came, I went in under general anaesthetic for a biopsy. An hour or so later I came round to find a drain in my leg which seemed odd for a biopsy but I didn't have to wait long.
The Surgeon came to see me and a sizeable tumour had been removed. When pushed, the first ever reference to Lymphoma came and my world immediately somersaulted.
A week later, pathology confirmed the Lymphoma and on 23 December 2009 Follicular Non-Hodgkins Lymphoma was the official diagnosis.
My world now did more than somersault, it turned upside down. Right on top of Christmas. I hadn't done much in the way of shopping as life had gone on hold for the 2 weeks prior however Christmas went to plan and we ensured a good time was had by all. But Lymphoma became and has become my every waking thought and never fails to dissapoint in my dreams.
29 December saw me back in hospital for a bone marrow biopsy - a necessary procedure to help stage and grade the Lymphoma. An unpleasant procedure and a wealth of emotions flowed immediately after.
On 13 January 2010 it was confirmed I had Stage 4 FNHL. The FNHL had reached both of my legs, abdomen, chest and bone marrow.
The next few days and weeks became a blur as I quite honestly struggled to cope. The whole range of emotions overtook my day-to-day life...life stopped. I couldn't look at my Husband and Son without my premature life flashing before my very eyes.
It was agreed that as I was not feeling ill, and as the B symptoms they look out for where not showing themselves, that I would go on a watch and wait approach which I continue to be on now.
Lenny Lymphoma will progress - my Haematologist was very honest in telling me due to the advanced stage I was not curable, but symptoms can be treated to provide a good quality of life.
I spent 2 months away from work and did very little. Most days I sat and stared at the television but "no-one was home". I couldn't speak, I couldn't think.
My first 6-weekly checkup has been and gone recently and the Lymphoma has now reached my neck... we continue to watch and wait. In the meantime I battle with Fatigue.
I have returned to work amongst the uncertainty of organisational change but it focuses my mind on another topic and life must go on.
So here I am, I watch and I wait.
The Blogs Rationale
I finally find that I can start to talk. It's taken some time and it's extremely hard but I have set up this blog to not only help me document what I am going through and capture my thoughts as an outlet but for my family and friends to understand how I'm feeling on those difficult days when I just can't find the right words.
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