I have found this at first to be an ordeal but also strangely therapeutic.
Now perhaps I can return to my writing, something I have not yet been able to do.
I have one daughter and two granddaughters who are helping me through this as I hope I am helping them.
THE TRAGIC STORY OF AN ILLNESS
I stood in the middle of the room. A few short months ago it had been a place of warmth, chatter and laughter now it was cold, desolate and lonely and so, so quiet, so very, very quiet, not even the sound of past echoes.
I stood and howled tears streaming down my face, how had things come to this? What had happened to our lives? What the hell was I doing here?
As I calmed down my sobs gave way and I started to reminisce. Before the spring of 2006, I remembered, we had a carefree life nary a worry in the world. We had sufficient pension income for our needs, we neither spent too freely or too frugally but we were comfortable envying no one and contented with our lives.
Then it all started so innocently. In early spring 2006 Gina complained of feeling tired and lethargic. We went to the surgery fully expecting it to be anaemia because Gina had always been prone to being anaemic. When the results of the blood test came back we were summoned back to the surgery and given th disquieting news that she had been referred to the Oncologist Department at the Norwich and Norfolk Hospital.
By mid April Gina was in the midst of just about every test that could be used to identify the problem.
Gina was still very low and lacking in energy but when we said we thought that we should cancel the Italian holiday we had booked for the beginning of May, the consultant, said a red cell transfusion would give Gina a big boost in energy and we should go ahead.
In May we departed for Lake Como suspecting but not knowing that this might be our last trip abroad together to this our favourite destination. On the way there, by coach, we stopped in Rheims for lunch. Rheims must be the only place where they serve you with a free Kir Royale while you make your choice from a very reasonably priced menu.
Lake Como was at its very best. The gardens at the Villa Carlotta resplendent in their beauty provided extensive views of the Lake whilst sipping coffee under the azalea and rhododendron clad walls.
Bellagio was at the peak of it quaint and picturesque charm.
All around the Lake there are small towns that delight the eye. Lunch in Varrena or hop on the ferry to lunch in Menaggio you really are spoilt for choice.
Gina chooses her home in Varrena.
Menaggio for an early morning coffee.
Then on to Lake Maggiore and Fisherman’s Island with its artists and artisans where it seems as if every family offers a culinary treat for the visitor to sample.
Then it’s back to the Hotel Britannia Excelsior and an evening to spend in Caddenabbia. Gina even found the determination and energy to make the steep stepped climb to one of our favourite trattoria where we were welcomed. Apart from ourselves only the locals seemed to use it.
It was as if they all knew we wouldn’t be back again and made our holiday truly memorable.
So many places seen but so many that remain unseen and now we will never explore them together and that does hurt so much
Addio bella Italia
When we returned the Consultant told us that Gina had MDS (Myelodysplastic-Syndrome) and that treatment was regular transfusions of red blood cells. Strangely enough this, compared with what we had been imagining, was a relief and the regular clinics and blood transfusions which only took a couple of days a month seemed like a small price to pay. Once again we felt our way of life and contentment had been handed back to us. It was all a nasty scare but with a small compromise we could carry on as before, wine by the river on balmy afternoons, bus trips around North Norfolk with convivial lunches here and there, a holiday or two and friends over for dinner. Gina still active with her W.I’s, Talking Times and such other projects as she was asked to do. No, life was good again.
Then in August a week’s caravan holiday with Nicky, Amy and Beth. was enjoyed The weather was wild and wet when we arrived on the Saturday the waves crashing on to the very near beach was just a little scary but by the Monday we were blessed with fine weather which lasted for the rest of the week. We had one interruption when Gina had to attend a hospital consultation on the Thursday and arrange a transfusion for the following week.
Let me explain about the transfusions. In these the early days they were all at the small and cosy Cromer Hospital. We had to be there by 9 o’clock or thereabouts which meant we had to be up and about fairly early. I would drop Gina off at the hospital with her book and chosen craftwork. Then I would go into Cromer first to Morrison’s for its free car park and a cup of coffee. A good book was essential on those days especially when the weather was inclement. The shopping list was attended to and then fish and chips at Mary Jane’s. Between whiles much reading was done either on the front or if it was wet in the car. The food at Cromer hospital was good so when I picked Gina up mid afternoon the rest of the day was free for us to enjoy. She would start the day looking pale and tired but I got back My Gina all pink with nails that looked as if they had been freshly varnished and full of energy. It was a boring day for her but once Ann started to visit it gave Gina some company to look forward to. Ann relieved Gina’s boredom on many of these transfusion days and for that we were truly grateful. Life was still good why did it not stay like this?
But meanwhile the world had got smaller due to the enormous increase in cost of travel insurance but we did not mind an autumn holiday in Cornwall and the Isles of Scilly was another magical holiday. Cornwall was magnificent .The hotel was in St. Ives where the quality of the light has been a magnetic draw for artists down the years
The visit to the Isles of Scilly was like a step back into to a time when there was no crime and people could leave their doors unlocked. Car keys were never lost because they were left in the ignition.
Yes life was good again. It was a little worrying that Gina’s transfusions were more frequent by a few days now but this we hardly noticed. After all we were able to live a normal life and more often than not Gina had more energy than I had and it was me shouting hang on a minute and striving to catch up.
We, of course, had no idea that this was to be the last Christmas we were all to share. It was spent with Nicky, Amy and Beth it was good, very good. New Year we had friends over for lunch and January was anything but quiet with Gina active with two W.Is as Secretary and programme arranging to deal with plus the secretary-ship of the area group W.I. then there was the Talking Times and a couple of local events we attended. Holidays were arranged. No indication of what was to come, no sign at all.
It was in the early part of the year that Gina’s Consultant moved away and was replaced by another. We were losing a Consultant who was everything you looked for in a Doctor. Kind, compassionate knowledgeable and always one step ahead of her patient’s problems. The new Doctor was a complete contrast and his attitude Gina and I found less than confidence inspiring. Where doubts had been addressed and if possible remedies prescribed with the new Doctor the same doubts were explained, with a shrug, as “part of the condition“. How I wish now, with hindsight we had asked for a change of Consultant.
The following spring holiday took us on another holiday this time to Wester Ross and the Isle of Skye. The weather was well Scottish but the scenery was ruggedly magnificent and once again we were more than pleased with our choice of holiday.
We even managed to visit Gina’s 96-year-old aunt in Inverness. For the last time we reckoned but not in the way things turned out. Another phenomena that I, a dweller in the flatlands of Norfolk, found terrifying was the sheer drop on the sides of many of the roads
In a cafe in Moffat I asked the waitress how long it took to get used to the sheer roadside drops. Her reply was “you never get used to it but, there again, it does mean we don’t get many drink drivers.”
A really good result was when we spent a wet day in Gairloch and we discovered Red Cullen. A really exceptional Bitter beer bringing a ray of sunshine to a wet cold day.
A surprise was the over emptiness and sheer space something that I very much envy. It made even rural Norfolk seem overcrowded.
Another surprise, although it shouldn’t have been because it’s the same in England, was the reliance on immigrant workers. It would seem, again the same as in England, that the tourist industry would falter without them.
Then we come to Scotland’s answer to Basil Fawlty, the hotel’s Head Waiter who was a young man from Perth and was christened Herr Flic by one of our party almost from day one.
I will mention but three of the many incidents.
The first occurred on the evening of our arrival. There were 36 in our party to be seated at a mixture of 4 and 6 seater tables. We entered the Dining room to be ”greeted” by Herr Flic who proceeded to issue orders as to who would sit where with no regard to the parties wishes. Two couples who were in our party were sisters travelling with their respective partners, one pair from Cardiff and the other from Bristol, these Herr Flic split up on two different tables. The couples concerned agreed to move so that the two sisters and their partners could share the same table. This did not suit the confrontational Herr Flic.
“Can you move back to your proper tables” says Herr Flic.
“Why?” Say the couples.
“Because the restaurant will be full tonight and I have carefully worked it all out” says Herr Flic
“But we won’t be taking up any more tables will we?” Say the couples.
“But your food might be delivered to the wrong tables.” says Herr Flic.
“We haven’t ordered any food yet so how can that be?” Say the couples.
At this point the partner of one of the sisters suggests consulting the manager at which point Herr Flic hastens away.
The second incident I will mention happened at breakfast a couple of days later. One of our party approaches his table having collected a glass of fruit juice on the way. Herr Flic approaches him.
“Can I take your order?” says Herr Flic.
“I’m not ready to order, I‘ll let you know when I am” says the guest.
“I might be busy then” says Herr Flic, “you’d better order now.”
“I told you I’m not ready to order yet I am waiting for my wife to join me.”
“What would you like to order for her?” says Herr Flic.
“I don’t know what she will want until she gets here, we will order when we are ready and not before.“
“What does she usually have?” asks Herr Flic.
At which point it was firmly suggested that Herr Flic might care to take a running jump.
The third incident I shall refer to related to our own table. On our six seater table three or our number all seated together at one end of the table had ordered Carbonara, done I might add with pasta shells rather than the more usual spaghetti. At the other end of the table the remaining three of us had requested the roast lamb. Enter Herr Flic with two tureens one filled with boiled potatoes the other with roast potatoes and he puts them down at the far end of the table. These tureens we had discovered during the time we had been staying could be very hot.
“Can you put them at this end” we ask.
“No I’ll leave them here they’ll be passed down when these guests have taken what they want, I’ll bring more if needed.” says Herr Flic.
“But we are having carbonara we don’t want potatoes” say the far end guests.
“You might change your minds” says Herr Flic and scuttles of before anything else is can be said. Fortunately Sergui, one of the waiters heard the “debate” and after Herr Flic had departed came over and, with a knowing smile, moved the tureens to where they were needed.
No recollection of our holiday would be complete without recalling the evening entertainment. Why oh why given Scotland’s rich musical culture did the hotel book so many nasally impaired, guitar strumming Country and Western performers? No I refuse to call them singers they would all have struggled on a tone-deaf karaoke. evening. There is only so much lying blankets on the ground and crystal chandeliering one can put up with. That was on five nights on the other two nights we had a young piper of whom the head barman (a Scot) said “we rang the RSPCA but they said that poor wee animal was beyond help ye ken.” But the remaining night restored our faith. A traditional Scottish folk singer resplendent in full dress regalia entertained us with songs, poems, historical explanation of Highland dress and traditions and jokes and repartee. This will be the night we remember along, of course, with the antics of Herr Flic.
Overall a holiday to remember. I feel we came away with a very romanticised view of what must be a very hard but worthwhile life for the traditional crofter and fisherman.
We were learning to live with Gina’s “condition” and when we thought of how much worse it could be we considered ourselves lucky.
Warm afternoons were spent on the riverbank, walks had become a bit shorter, Gina’s tiredness before transfusions more pronounced and the lift less obvious. Days out were still very much on the agenda but again tiredness was a factor and gardens less explored than they would have been a few short months ago.
Then on July 17th 2007 the bombshell a bone marrow test showed it had progressed into AML (Acute Myelogenous Leukaemia). Sad so very, very sad
Monday July 23, 2007 Kelling Hospital today took in my white lady and three Bags of red blood cells and six hours later I got a pink lady back.
This time Gina says she got a real lift and energy boost something that hadn't happened for several months.
Maybe the answer is more frequent transfusions.
Gina certainly seems much better. Question is how long before the next transfusion.
We've decided she is going to call the shots depending on how she feels.
Tuesday August 07, 2007
Summoned to Norfolk and Norwich this afternoon.
White blood count 120, which is not good, red blood count 7 which is not good.
Chemo started today (tablets) together with many other pills to cope with the side effects and so on. Injections to start Friday the sort that you can self-administer at home Intensive to be started at a date to be decided. In between Gina has her blood cell transfusion on Thursday at Kelling.
And the Doctor thinks Gina has a few months no more.
Nevertheless we did at Gina’s insistence manage one more holiday this time with Nicky and Beth only, as Amy was in the throes of preparing for University. Gina, prior to the holiday, having completed a course of self-injections of chemotherapy. She had responded well and once again we looked forwards.
With hindsight I now realise that Gina had accepted the inevitable in August precisely on August 11th when Gina insisted on walking along the river to and passed Bridges Island to a bench and just sit there enjoying a favourite view across the river to Fakenham. She knew then if she hadn’t done that that day she would never do it.
It was then a fight as different chemotherapy treatments attempted to fight against the onset of the leukaemia.
On September 23rd Johnny, the best man at our wedding and his wife Pat came up to Norfolk and we had a meal out in Fakenham.
Monday October 1st, 2007 Gina over the weekend got more and more tired, even walking around at home was causing her breathlessness.
So when we went to the Hospital to see the Consultant we had one piece of good news the white blood count has responded to the chemo was down and will continue to fall for a while yet, hopefully, to somewhere close to normal.
The bad news was the red blood cell count was down to 30% of what it should be at 4.2.
As a consequence she has been kept in Hospital overnight to have three bags of red cells today and three more tomorrow together with additional platelets.
Yes Gina and I were worried, very worried but remained optimistic that she will win through to get this evil condition into remission.
That evening I telephoned Gina. She was moved to the Emergency Assessment Unit soon after I left and has been left sitting there ever since, cannula in, blood bags ready waiting for a bed. I rang and ranted she has a chair she has the blood and she has the rig and the sisters next statement made me hit the roof she had not been connected because of health and safety they were waiting for a bed. In every other department they transfuse on chairs and recliners, anyhow my rant and subsequent ring back after a few well place calls means that they are now going to connect it all up before I cause anymore trouble. Why, why is there always at least one f***ing jobsworth.
It was nine o’clock this morning when we arrive, 11 o’clock when her blood was cross matched and everything was ready to start by 2 o‘clock this afternoon. This just was not good enough.
Monday October 1st, 2007 9:07
Gina telephoned they have connected her up and the transfusion has started.
It should have happened hours ago.
Tue October 2nd, 2007 Gina is back on a "good" ward and is now being transfused with the 4th of her 6 bags and then there is the platelets to deal with as well. Today's transfusion had to be delayed while Gina's temperature was reduced as it had got rather high. She is being kept in for another night for observation as 6 bags in two days is rather a lot.
I have written up notes on recent events and yesterday's fiasco not sure what to do about them yet.
I think Gina will have the last word.
The choice is to write to the Hospital or our M.P. (a good man) or both but we must do something. It has to be reported for the benefit of future patients.
We have a damn good Hospital and it is not fair that a few individuals are letting down the vast majority of good, dedicated people who work there.
Then on the Friday October the 12th what a wonderful, wonderful, wonderful day. Our friends from Paris turned up on schedule and our other best friends came over from Dereham. I was kicked out of my own kitchen and we just talked and reminisced the day away.
Good friends, good food and of course good wine. Gina was happier than she has been for many a day as was I. A fantastic lift for us both and an emotional parting with vows we will do it again at the New Year. Gina still has her breathing problems but she thinks they might be gradually receding. Unfortunately this was Gina’s last good day.
I cannot believe how brave she was. Gina must have hidden just how much pain she was in at the end. She certainly deserved better treatment than she had which I think robbed of several months of reasonable quality life.
Saturday October 13th, 2007 Gina is feeling delicate today. Probably over-indulged a little. All that fluid it her tummy from the transfusions plus a bit more food than she has become used to, oh and then there was the champagne Dave brought. Indigestion is the problem now and that I think we can deal with.
Sunday October 14th, 2007 Gina had a really bad night. We had to call the doctor out.
It turned out that it wasn't indigestion but an infection that must have been picked up some days earlier. A weeklong course of strong antibiotics was prescribed and now we are waiting for them to kick in. All due to the chemotherapy weakening the immune system. At the moment she is dozing sitting at the dining room table with her head resting on several pillows. The only position where she can breath easily and is comfortable with.
The good news is the tide, as far as the fluids are concerned, is beginning to go out.
Monday October 15th, 2007 Gina was taken by ambulance to the Norfolk and Norwich Hospital this morning. She was due to go for a consultancy today in any event but her breathing became very difficult and together with lack of sleep she really was in a bad way. Gina was put on oxygen in the ambulance and when she arrived there an x-ray showed she has up to six litres of fluid on one lung due to the number of transfusions she has had recently. Furthermore there is probably more fluid in her stomach and they intend to do an endoscopy to verify their suspicions.
Hopefully after this lung has been drained and she has had a good nights sleep things will look better than they do right now.
Monday October 15th, 2007At last a (cross fingers) a break through and some hopeful news to report. Gina has telephoned, they have taken off two litres of fluid and she can now breathe more easily and is off the oxygen. Bearing in mind when she telephoned this morning she could hardly get enough breath to utter a couple of words this is a big improvement. Also she can lie down properly which is something she hasn’t been able to do for the last week so a good night sleep should be on the cards. I have been banned, by Gina, from visiting until after midday tomorrow, she would rather have her rest and recovery time. The threatened endoscopy is now going to be an ultrascan so that pleased Gina for some strange reason she didn't want an endoscopy (can't think why).
So tired but so pleased that at last someone has lit a small light at the end of our tunnel.
Wednesday October 17th, 2007
Gina is back home now having had over five litres of fluid drained from her left lung. She has also had two bags of platelets and two bags of red blood cells.
Gina has about 90% of her lung capacity back but still gets very breathless with any exertion. She is on very strong painkillers while her lungs settle down and strong anti-biotics to combat any infection. Gina still has fluid on her stomach and A little on her right lung but it is hoped that the fluid dispersing tablets will deal with that.
Gina is far from a 100% but she is a lot better than she was. Still a very long way to go though.
Friday October 19th, 2007 1:47 pm
Gina is feeling less breathless now but still has not got back the full use of her lungs. We had a word with the nurses this morning and they want Gina to go up for a blood test tomorrow and another transfusion on Monday. This is because Gina is feeling so lethargic and tired which is probably due to the strong painkillers she is having but it’s a precautionary measure as her blood counts are still not good.
On the plus side Gina is sleeping much better and can lie down without breathlessness or discomfort.
I think Gina's problem now is fluid in the abdominal cavity (ascites). But what the hell do I know.
All I know is she is not eating 'cos it hurts and I don't think the water tablets are dispersing the fluid.
Saturday October 20th, 2007
Took Gina up for her blood test this morning she had had a night of vomiting. She has been kept in for monitoring the white blood count is very high again and it would appear the last course of chemo did not have the same impact as the first. The nausea and vomiting was thought to be an allergy reaction to one of the anti-biotic tablets.
We're not greedy people we just want some quality back in our lives sitting by the river together for instance, an afternoon stroll or just a bistro meal and a cup of coffee.
Surely that's not too much to ask for?
Sunday October 21st, 2007 Fetched Gina back today after a night in hospital. She has had another three bags of red blood cells and has a course chemo tablets to take in an attempt to bring down the white blood count from its unacceptably high level.
The Mulbarton Ward Sister has arranged for us to have home support from a District Nurse and also a Macmillan nurse. You have no idea how much of a relief that is.
I can cope with the cooking, housework, laundry and caring but when it comes to nursing I am completely bloody useless and either panic too soon or react too late.
Monday October 22nd, 2007
Here we go again. The Ward Sister arranged for the nurses in the Haematology Unit to telephone today; they didn't. I telephoned them "no we know nothing about it" they say, I read out from the copy I had been given and still they claimed to know nothing, they will get back to me allegedly.
A district nurse would get in touch today regarding support and oxygen at home (I've got a copy of that request as well. No sight nor sound from a district nurse.
We were told a Social Services Officer would telephone today to arrange an appointment to visit. No telephone call just a damn great form to be filled in before they can proceed. If nothing heard in the next three weeks they will assume they don't need to get off their fat ar**es and do anything. Meanwhile they enclose a booklet advertising Companies that you can buy health aids from.
Again one person, the Ward Sister, tries to do her job properly and with care and compassion and is let down by others just as we were.
Tuesday October 23rd, 2007
This morning I jumped up and down and to make sure, having made my point to several people, I telephoned Dr Bailey at our local surgery and she, God bless her, has made all the difference.
The Community Matron was asked to call and has now ascertained what Gina needs, this equipment will be with us before the day is out.
Dr Bailey has also contacted the Macmillan nurse for the area, the surgery's dietician and Social Services. Prescriptions have been put in motion for all the dietary supplements that Gina needs. Dr Bailey has also arranged for BOC to deliver the Oxygen equipment that Gina, from time to time, needs.
We no longer feel abandoned we do begin to feel the support is there.
Gina feels much relieved and is far happier with the prospect of a good night's comfortable sleep.
Tuesday October 23rd, 2007
The Community Matron has just called in. Gina now has the bed equipment that should help her to get a good night's sleep.
BOC have called the Oxygen equipment will be delivered tomorrow.
Gina and I now have telephone point of contact numbers so that help should never be far away again.
Just wish it had all happened yesterday but it needed a Doctor Bailey to kick various backsides into gear.
Wednesday October 24th, 2007
BOC have delivered and installed the oxygen equipment. Just the portable oxygen for the car to come.
Elizabeth, the Macmillan nurse, is coming at 4 o’clockish this afternoon.
Gina had another poor night and slept very little but hopefully the oxygen and advice from Elizabeth will make the difference.
I’ve sent Gina back to bed now for more rest with her new oxygen supply to help.
Our local rector called to offer his help. He is collecting Gina’s latest prescription so I don’t have to leave Gina on her own.
Wednesday October 24th, 2007
We have got Religious help. Our Rector is a great help. We have friends who are Baptists praying for Gina and another friend who is a Catholic prays for Gina and each week lights a candle for her at the Walsingham Shrine.
Whether you believe in it or not Gina is hedging her bets.
Thursday October 25th, 2007
Earlier this afternoon Gina was taken back to Hospital by ambulance with breathing difficulties due to fluid build up on the lungs yet again
This, no doubt, will be drained and hopefully the fluid will not accumulate so quickly next time.
More later maybe, we are both finding it hard to cope at the moment.
Friday October 26th, 2007
Gina rests in peace.
Saturday October 27th, 2007
Just trying to hold myself together. I am so glad Gina is no longer in pain but it is very hard to cope without her.
Why did it have to end like this?
Tuesday October 30th, 2007
MALLETT Peacefully on October 26th, in the Norfolk and Norwich University Hospital, GINA, aged 65 years. Much-loved and sorely missed wife of Tony, much-loved mum of Nicky and devoted grandma of Amy and Bethany, and a lovely sister of Sharon.
Former Brown Owl with 25 years service, committee member of various WI's, member of the Talking Times Team, past member of Fakenham Little Theatre, Gems, F.A.D.L.O.S. and many other organizations.
The funeral service will be held at SS Peter and Paul's Church, Fakenham, on Wednesday, November 7th, at 2 p.m. followed by burial at Creake Road Cemetery.
All flowers welcome, or donations, if preferred, maybe given for Leukaemia Research at the service or sent c/o Fakenham & District Funeral Services, Weasenham Manor, Fakenham Road, Weasenham St. Peter, King's Lynn, PE32 2TF. Tel. (01328) 838838.
Meanwhile Memories are still painful for my girls and me.
I have cried more in this past few weeks than I have in my lifetime before.
I did not realise how happy and content we were until it was all so cruelly taken away from us.
It takes but a minute to find a special person,
an hour to appreciate them,
a day to love them
and in an entire lifetime you'll never forget them
And still it goes on concerns raised with the hospital with regard to My Gina’s treatment have still not been properly addressed but I am determined to get answers because if any new patient is victim of some of the treatment she received it would be on my conscience
Besides I owe it to My Gina to try to improve the way future patients are treated.
I am sorry the standard is even lower than my usual efforts and “tenses” jump about.
Maybe I will return to it and tidy it up when I can read and correct it without peering through the mist of my tears.
But now this has been done perhaps I can start to write again.