[briancParticipant]

Hi all

I’ve been meaning to put something on this site for a while now but have finally got round to it.

I was diagnosed in early Feb this year after having a ‘sore hip’. I don’t know if myeloma is now a standard check in Hampshire or if I should be grateful to my locum GP but after lots of Tests and scans confirmation was given by the team in QA Hospital Prtsmouth

After 3 cycles of CDT I was in full remission and due to have my Stem Cell Transplant in Southampton.

The Harvest went well but the pain in days leading up to it was both unexpected and probably the worse I had known.

I was due to go into Southampton General on Tuesday next week but today have been told that there is likely to be at least a 2 week delay. This news is quite difficult to take.

I managed to keep working while on the chemo and have prepared myself to stop work this week, deal with whatever myeloma throws at me and generally accept that it will be a difficult 2 or 3 months then life will start to get better.

The delay has been quiet a shock. I think I would have been happier to know that there was a delay at the harvesting stage than to go through the planning of being in hospital for 3 weeks arranging visits etc then it all falling over

[rebeccaRParticipant]

Hi – sorry to hear about the delay I know how hard it is mentally to brace yourself and gear up to it to then feel totally deflated. I had my SCT is Leeds and was told it would be 2 -3 weeks once I was on the waiting list after I had a hickman line in. I had to phone each day and it took 8 weeks and my consultant phoning that hospital also! This meant I was in over Xmas also but by the time I went in I was a nervous wreck – there is only so many times you can put on a brave face and brace yourself. I would suggest you re-plan to use this “bonus” time to have lots of final treats etc and enjoy some sunshine etc.- try for a positive “spin” on it – I am sure you are used to that now also. It will come soon enough and the anticipation is, I feel, as bad if not worse than the process. Let the others plan everything to do with the hospital stay and you try hard to blank it from your mind concentrating on some good distractions. As they say this is a marathon not a sprint and we all need/learn to develop mental techniques/distractions to overcome the unforeseen hurdles sprung upon us. Good luck with it all it sounds like a success already if you are in full remission and the SCt will hopefully strengthen/lengthen this for you. Once home, without hiccups you’ll be feeling pretty much back to normal in 3 months and hopefully you’ll be recovering mainly in the garden with a bit of sunshine and not having to worry about germy people with coughs/colds – a nightmare SCting in winter. All looking goof for you. Be kind to yourself.

Rebecca

[briancParticipant]

Thanks Rebecca, I’m not sure that I would cope with phoning every day for 8 weeks without going mad.

As you say at least I’m in remission so nothing is getting any worse and there will always be someone who need the treatment more urgently.

Fingers crossed that the delay is not too long and than the sun keeps shining .

Brian

[graemeandrewarthaParticipant]

Hi Brian, sorry to hear about your delay. I too come under QA and had my SCT at Southampton.

You can only go with the delay and enjoy all you can prior to your SCT. My delay was due to having a dose of “man flu”. However once clear and office informed I was then told to wait for a call. I think they can only give you initially a period in time as there is no definite day for discharge per person as all deal with it differently. Mine was exactly 3 weeks from a phonecall on a Sunday morning to go in at teatime to final discharge. I actually passed the guy who was taking my room after it had been cleaned.

On a positive note all the staff were brilliant from cleaners through to doctors. Take anything they offer in pain or sickness relief as no point in suffering. Plenty of jellies or other soft item for when/if swallowing becomes difficult.

Best of luck

Graeme

[briancParticipant]

Thanks for your note Graeme.

I think I was just a bit frustrated as everything had gone well before now.

I feel a bit more positive now and will make sure there is a stock of jelly!!

 

Brian

[VickiParticipant]

Hi there

my colin was delayed twice. We didn’t realise there could be a delay and it was a real blow and hard to come to terms with as we had psyched ourselves up for what was to come. I do sympathise with you- it was hard. But on a positive note you have got yourself into a position to have an SCT so thats great. Wishing you all the very best with it and a long remission,

Vicki and Colin x

[briancParticipant]

Thanks for the message- as you said sometimes you have to remind yourself that progress is still being made.

I have now had my Hickman line fitted which is a bit of a pain

The nurses have advised thai  I have to stop going to work because of the risk of infection, I think I was ready for time off after the transplant but being off before may push the boredom threshold. All the best to everyone

Brian

[rebeccaRParticipant]

Hi Brian, I had my hickman line in a while pre SCT and worked up to the day I went in – never had any advise on not working whilst it was in but I did have it flushed out once a week wherease I think some other hospitals do it once a fortnight? Funny how different hospitals have different view points. Good luck.

[briancParticipant]

Hi again Rebecca

Southampton where I am due to have my transplant didn’t seem too bothered about me working and having the Hickman line. Portsmouth where my treatment is based were quite upset about me going to work. I’m not too sure about the difference between looking at a screen at work or looking at a screen at home but I guess there is less chance of infection.

Anyway hopefully it will not be too long before I can go in then it won’t matter anyway

Brian

[martinebbageParticipant]

Hi Brian I am also Portsmouth based under Dr Causer hope your SCT goes well I am smouldering at the moment, next app 06th July really concerned getting pins & needles in my hands and feet. Good Luck

Martin

[briancParticipant]

Hi to everyone. I’m sending this from the ward in Southampton general where I was admitted yesterday.

Everything happened quite quickly, confirmation that the bed was available about midday and I was in by 3 o’clock.

I have had my large dose of methaphalan about lunch time and apart from lots of visits to the bathroom all is well.

stem cells due to be infused tomorrow.

Thanks to everyone who has been supportive, I think that if anyone finds themselves in the position of an unexpected delay then stay in touch with the co-ordinator and be assured that they are doing all they can  and a couple of weeks delay is really not  important when the point is to hopefully get years of remission.

 

I’m really positive about treatment and am sure that when you look at the bigger picture everything will be fine and life will go back to a level of normality pretty soon

 

Good luck and best wishes to all Brian

[lizfParticipant]

I have just come out of SGH last week after waiting nearly a month to be admitted. I too have had a stem cell transplant and sailed through it aged 52. I did get nausea,tiredness,sore throat and oesophagus and a bit of diarrhoea but it wasn’t as bad as I expected. I spiked a temperature which was immediately assessed with blood tests,blood cultures and other swabs and treated with antibiotics. All symptoms improved as my blood counts came up. I was discharged on day 13 and came out with a head of hair although slightly thinner on top. I have had my shoulder length fair hair cut into a shorter bob. The staff at SGH were all fantastic and nothing was too much trouble. Now home besides having a reduced appetite slightly altered taste and a dry mouth I feel cmpltly normal and not overly tired. I am back to normal activities and daily walks on the beach with my cocker spaniel.
Now planning my life as after having 5 months of chemo with 37 trips to SGH 4 years of 2 monthly reviews time to get on with normal life. I wanted this to be a positive experience of stem cell transplant as I had worried myself by other’s experiences on the forum. I was told by a fellow patient who had theirs 6 months ago it was not as bad as she thought and I carried that with me and I exercised regularly in my small room to maintain my fitness.
A truly positive experience but I know we are different
Regards Liz

[briancParticipant]

Hi liz

thanks for your reply. It is great to know that everything went to plan and you can now move on.

I am in Southampton general on transplant day plus 3.

so far all is good just very tired

 

Brian

[lizfParticipant]

Dear Brian
I am coming in today for a Dr review I could pop my head round the door on C6 as I have something to give them. Would you be up for a very brief visit.
Liz

[bernardParticipant]

Good luck Brian. After all the waiting, the end result should be worth it. I was able to work after my Hickman line was in and indeed travelled abroad on business (although I was concerned I might set the metal detector off or something and have to explain what was under my shirt and tie!). I was back at work 6 weeks after transplant and my first day involved flying to a conference and I lived every minute of it (although I had to explain the bald head!)

good on luck and stay positive.

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